Practice Hope
Encourage, Educate, Equip
Graduation (warning, I get a bit spicy)
This is an odd year for us. We knew our son would be graduating high school, but not our daughter. She LEGALLY according to federal law was supposed to be supported by her high school until the age of 22. She has been in a self-contained life skills class since she started in preschool. She needs the assistance of a one-on-one aide at school for being mobile and accessing her education. However, the district has decided that she is “done”. They said they have helped her as much as possible these 12 years, she has earned her credits, and gets to graduate. Well, let’s throw up the cap and celebrate!
Wait, hold up, stop for just one moment!?!? She is nonverbal, not able to work a job – even in sheltered employment, and cognitively many years behind her chronological age, but good to know the local school system feels she “deserves” to graduate. I never expected her to graduate. Yes, she has worked hard over the years learning to walk, socialize, use a communication device, and basic life skills. No, she is not a fully functioning student ready to be sent out into the world. I expected her to stay in a safe place, her school, until age 22. I expected them to continue to work on helping her to be a valued, accepted person and work on the life skills she has not mastered yet.
I reached out to a special needs lawyer and found out that Arizona has some sort of loophole. The district can “say” that a special education student has met their graduation requirements, even though they did NOT meet the state’s own graduation requirements. Confusing, right? So, functional math of learning one to one number correspondence and the value of coins equals the four years of algebra, geometry, and pre-calculus that my other child had to labor through. Thanks Arizona!
The special education department tried to cheer me up by saying I should be happy my daughter won’t be stuck in the same room with the same teachers she has had for the past four years. It’s time for her to enjoy the local state resources available. Great, thanks for sending us out into the world of adult day care programs where my 19-year-old nonverbal child can be parked in a wheelchair surrounded by handicapped men in their 50’s. If parents do not place their disabled child in a group home, there are adult day care programs created for all ages after departure from high school. Sadly, due to lack of staffing and funding to help our community of people with disabilities, they have to be lumped into one big group. There are fabulous programs out there, they told me. Yes, they were geared toward older clients, but surely there were ones that could work for us. I have not found one yet. I have been searching. Some have long waitlists and others have a ratio of 5 -10 males to 1 female. That does not sound safe to me either.
I am doing my homework, reaching out to amazing organizations that help young adults with disabilities transition to working, living on their own, and being somewhat independent. I have cried many tears, prayed many prayers that she could be that independent, but my daughter will never be able to do those things. She will live with us as long as God gives us breath and the strength we need. Why will the schools not support us then? Why will they not continue to provide the safe space of learning to bridge the gap until our babies are truly the “adult age” of 22?
My only choice for next year seems to be that I quit my teaching job and become her full-time life skill teacher. I love spending time with her, but I am also her mom… We don’t see to eye-to-eye sometimes and even a nonverbal child can throw “shade”. I do not want her to lose the autonomy she felt at school to be social and tell jokes with her peers. This blog post is a bit spicier than my past ones, but it had to be said. Please reach out to me if you are in the same boat. We can navigate this new season together. Share this with others if you think I can help them.
I am trying to practice hope every day. It is only in the practice that it becomes a habit.
Love you all,
Jen
What’s New
I have been missing in action for a while, because life… I am thankful for the new year and my renewed focus in helping other parents. Many of you may not know that I went “back to school” last August by taking an interventionist teaching position at a local private school. It has been exciting to be part of a team again! I had been so entrenched with individual students and their families (my children too) in the COVID learning struggle, that I forgot what it was like to be on a school schedule with coworkers. It’s fun to make new friends.
The Jones Gordon School is an oasis in the desert. It helps kids that learn differently by supporting them with needed daily interventions. It is an honor to have joined their team.
On the family front, it has been HUGE changes and hurdles. Sweet Piper turned 18! It was bittersweet. There was no big fancy party because she wouldn’t want one. And who would we invite? So, we celebrated her with cake and presents that make music, noise, and include Mickey or Minnie Mouse, her favorites. Plus, there were tons of hugs and kisses that she did not want! She’s not my little girl anymore.
Plus, we had to file papers, go to court, and prove that we should be granted permission to be her guardians. This was rough: the paperwork, attorneys, investigator, time, money, and heartache of revisiting her birth/diagnosis brought up past fears and tears. The good news is that we were approved! The bad news is that I have spent hours sending the paperwork to every doctor, insurance, school, and more to prove it.
I pray that your 2022 will be filled with hope and healing! It is my goal to be more present. Please keep me in your prayers and let me know how to pray for you. Let’s keep practicing hope because one day it will become a habit.
SPECial Education
A formal definition of special education is a form of learning provided to students with exceptional needs, such as students with learning disabilities or mental challenges. However, it was primarily created in the public school systems as a response to all students being guaranteed a free public education no matter what their needs. This is another abbreviation you may hear thrown around – FAPE. It stands for Free Appropriate Public Education. That means the public schools are required to teach your child. However, if your child is in a private school they are not required to offer SPED unless receive particular government funding. This is a very small portion of schools.
Before you start to conjure up fears of you child riding the short bus or being ostracized to a closet down the hall, take a breath. Special education does not have to mean a dead end. I prefer to think of it as a lower speed.
Gen Ed (General Education Classes) = 65mph Sped (Special Educaiton Classes) = 35 or 45mph
These classes all have the same destination! Destination “graduation” to teach your child in the manner they learn, at the pace that their brain needs, with the supports to help them reach their success.
I know some of you may be thinking this is not the truth in your school. So, go find a school that it is the truth. Your child only has one trip on the education road. Make it positive. Have hope!
Decoding the Secret language in education
Teachers and psychologists have a secret language. They speak with strange letters and all nod in agreement like everyone understands. The truth is that parents need a “SparkNotes” version before entering a parent teacher conference. Too often I have seen a lost look slide over a parent’s face as they secretly type the letters they hear into their cell phone for a translation. The teachers seem to be speaking in code: MET, IEP, SLD, ADD, ASD, EF…..
“What the heck are they talking about?”
I have wanted to write a handbook for parents for years. While I am in the early stages of outlining it, I thought I would get your input. Each entry on my blog, Instagram, and Facebook page will have a brief explanation of one of these secret letter codes. I welcome your comments to create a community of parents to help break the code and level the playing field.
Practice hope today,
Jen
The Pup and the Tortoise
Well, we are surviving the COVID-19 quarantine with a good old fashioned battle of the wills. Our 6 month old pup, Lexxie, thinks she owns the place. Once our desert tortoise, Speedy, awoke from hibernation, he set her straight! Stay safe and pick you battles.
3 Strikes – I’m Out!
She said it three times. I smiled back three times. My brain probably misinterpreted it three times. “It’s good that you brought Piper out,” she said. What I heard was, “It is good that you did not keep your daughter with disabilities at home, she should have a normal life, and you should do it more.”
Tears sneaking down my cheeks, I left half way through my son’s first home high school game. To be fair, it was not just because of what I “thought” she said, but also that Piper was being herself. It is hard to get Piper to sit through events, so I arrived prepared with multiple snacks to bribe her to sit. I wanted her to walk into the bleachers, because she is finally able. In my mind, I wanted her to sit like all the other people, so her brother would not feel like people were looking. This is another one of my probable misinterpretations. I try really hard not to give kids a reason to taunt him. We had some boys tease him when he was younger about how his sister wore diapers, could not talk, etc… He is always very kind and happy when we bring her to his events. I just want to protect him because he has already had to live such a different life from his friends.
Piper walked into the area of the bleachers with no backs. We had to go get her wheel chair stroller. She does not yet have the strength to sit on a bleacher for a period of time. Thankfully, there was a handicapped space in the front row between two tiny bleacher seats.
I got her situated, said hi to the baseball parents that I do not really know because I am the one to stay home with Piper. My husband goes to all of the games, practices, meetings… So, I was feeling pretty proud that I got her there to support our son. The game started and Piper devoured gummy snacks, granola snacks, bag of M&Ms, an orange, and a cereal bar. During her buffet, I continuously refilled her small squirt bottle with thickened water to keep her hydrated. I wiped her mouth, shaded her so she would not burn, pulled her shirt down to keep her tummy covered, and precariously sat on the edge of my bleacher seat to do all of these.
Three times Piper wanted to get up. I helped her out of her chair and hoped to walk around behind the bleachers. Each time, we got to the stairs, and she made her body stiff as a board. She made loud pained noises to let me know she was not going to walk farther. Then she would grab me around the neck with a vise grip. I had to gingerly (look like I was cool) and try to pivot her back to her chair. So, when she pushed her iPad away, did not want any more snacks, and tried to get our of the chair, I knew I was OUT. Had to leave, to keep from causing a scene. Leave in my car….trying not to cry….because my husband would say I was too sensitive.
This woman’s words pierced my heart because I feel guilty that I do not venture out more. Piper is a home body and does not like loud noises, lights, or chaos. Perhaps people do not understand the strain and stress that goes into taking a child with disabilities out to events. I can’t just watch the game, grab a snack, and cheer for my kid. My mind and body are bound to caring for my sweet child that can’t run get her own snack and also worried that she will wet her pants. I should be thankful she made it over an hour and did not have an accident. Truly, I am very proud of her. On the inside, I hurt. My brain knows that I am a not the normal mom, I am different. Not one of the gang. Unable to participate in team parent bonding or parties. May never make it to the end of a game because “3 Strikes – I am out.”
I may be out today, but I pledge to continue pushing Piper to socialize. Pray for me and my perceptions of what others think so that I don’t put myself OUT too soon.
Puppy Tails & Teenage Ails
People told me that puppies were a lot like babies. Actually, I am starting to realize they are also a lot like teenagers. Directions need to be said multiple times. Just saying one “sit” or one “pick up your socks” is not sufficient. There has to be a minimum of 5-7 rapid fire reminders to hopefully see a result. Teens and puppies also seem to listen better if a treat is involved. “Come” with a puppy snack and “my treat” with some cash in hand seems to bring them both running.
Not only are their bodies growing, but they lack coordination. Our puppy will be so excited to fetch a toy, that she slides and smacks right into the wall. Our son will be so excited for food, that he easily steps on my toes or elbows me when turning around. Then each will get a look on their face questioning what I, the mom, did to make it happen.
Snuggles are often interrupted with nipping and sharp teeth. Conversations after school can turn from, “My day was good” to “Stop asking me questions”. Both want love when THEY want it and not when I want and need it. Despite the sleepless nights and daily worries, every time I look at either of them, my heart bursts with joy and thankfulness. These are my babies and the ones that need me. God has blessed me.
When and How to get your Child Help.
Are you worried that your child is struggling in school? Has the teacher expressed concerns? Join me for a conversation in my Facebook live group. You will learn when it’s time to ask for help and who to ask in public and private schools. See you at 3pm today!
Join me weekly on FB live –
I am super excited to start a weekly Facebook live to encourage parents, teach you, and answer questions. So head over to FB and ask to join my group!
Sunday’s 3-4pm MST time (if you can’t make it, watch the replay, and comment your questions so I can answer you back)
topic #1 – Finding the right school for your Child
Will you be my friend?
Remember when you were in elementary school and making friends was as easy as passing a note? You would ask if someone would be your friend with two boxes underneath to check yes or no. I wish it were that easy when you are mid-40’s ish and have kids headed into high school. It is so easy to get caught up in “life” and neglect those carefree days of play dates, climbing trees with your bestie, or knowing exactly who to talk to when you were upset. I have been feeling this way lately, a little lost, a little alone, a little unlike who I used to be.
In Jennie Allen’s devotional Made for This ~ 40 Days to living your Purpose she speaks of the importance of intentional friendships. She references the tv show Friends and how many of us longed for that type of friendship and feeling of being one of the gang. The truth is that true deep friendships require love and effort to keep them going. I realize that I got so wrapped up in being a mom, teacher, and having a special needs child, that I neglected to keep pursuing my friends and finding ways to connect on deeper levels. We all use the term BK, before kids, when we joke about how tired we are or unable to hang out with friends. I think some of us have used BK as an excuse for letting life get in front of our relationships.
Jennie prompted her reader to step out of her comfort zone and take risks. She also made it clear that in this stage of life, people are not going to pursue a new friendship. I need to put myself out there and be the one to purse friendships. Well, I did it!
There is a local blogger I stumbled upon called @littledotbigdifference. She promotes local businesses and philanthropies to simply share inspiration. On Instagram, she posted pictures of her hiking a mountain with 2-3 other women. Her caption is what caught my attention. It said,
“Sometimes you just have to grab a group of dreamers and best life chasers… and simply start. Start the week on the right foot…Start visualizing the life you want today and 10 years from now. We meet bright and early every Sunday and YOU are invited.”
She invited anyone! I did not have to prove I was pretty enough, fit enough, rich enough. Just DM her for exact time, and be there. So, I did it! I was at the mountain trailhead at 5:45am and scared to meet these women, but so thankful that I did. They were open, honest, funny, and genuinely caring people. So, if you are in the Phoenix area, join us when the weather cools down.
I pledge to invest more of my time in loving and giving to others.
Here’s to new adventures with new and rekindled (some of you may be hearing from me) dear friends!
Love the Lord your God with all your heart and with all your soul and with all your mind and with all your strength…Love your neighbor as yourself. There is no commandment greater than these. Mark 12: 30-31
From School Ponds to Summer Lakes
In the dog days of the last month of school, this gorgeous lake calls to me complete with sand, sun, and serenity. I am ready to trade homework, assessments, parent emails, IEP meetings, and no sleep for this! Many families will be heading out of their safe, supportive school ponds to voyage into the lakes of summer. I have been wondering about the difference between lakes and ponds. Did you know that we assume lakes are bigger or wider in area than ponds? This is not always true. The differences are in the body of water’s depth and sunlight.
Lakes are deeper than ponds and do not have plant life at the bottom. This is because sunlight is unable to reach its deepest parts. In ponds, plant life abounds in almost every level. It is common to have rooted plants at their bases or deepest levels.
During the school year, children are rooted in learning with a spotlight on their education, just like the vegetation in the pond. This is the time when they grow and thrive. Summer time is like the lake with mysterious adventures into the deep and a few sprinklings of learning around the edges. Our children and teachers need the summer to relax, recharge, and rest before another school year. However, some children can not afford to let the “summer slide” happen. They have worked hard to keep up or make up for skills they were lacking.
This slide refers to the sliding backward in reading and math fluency, comprehension, and mental stamina. I have read it could even be as great as losing two years of growth! So, how do parents balance their child’s need for rest, fun, and keep them academically ready for the next school year?
- Book your summer adventures. Plan family time laughing and swimming in the lakes of life.
- Swim into shore whenever possible. Give your child the opportunity to keep their brain growing and learning. Schedule tutoring for the weeks you are in town. One day won’t cut it. Your child needs at least two to three times a week to make a difference. If you are traveling multiple times, then make the most of your time at home by scheduling more sessions the weeks you can.
- Download Apps to your iPad. There are some great reading and math fluency programs that you can get for your child. Set an expectation that they have to put in 30 min. a day before they have the rest of the day to play.
- Play board games and cards with your child. Games help develop their problem solving skills and executive functioning. They also help with counting, strategizing, and vocabulary acquisition. Plus they are just fun!
- Pick a book to read with your child. Snuggle in on the shore or at night to take turns reading. Have conversations about the characters, make guesses as to how it will end, and relate it to your own lives. This is not about a book report or taking an AR test. It is about growing closer to your child and instilling a joy of reading.
So, grab a raft or a fishing pole and create some amazing memories in the lakes of childhood. Just remember, that come fall, your child has to hop back into the pond of school, and you want them to be ready.
Do you parent like a curling iron or a straightener?
Did you know that round follicles produce straight hair and flat follicles produce curly? This seems like it would be the exact opposite, right? After I read this, I started to think about my children’s hair types. Piper had very fine blonde hair at birth. This was a shocker because all the women in my family have had dark hair and dark eyes. Her hair did not grow until she was about 2 years old. The DOC bands, “helmets” to help her skull form properly, she had to wear kept rubbing her hair off. Thank the Lord, after that year her hair slowly became thicker and eventually curly. She now has a beautiful lion’s mane that is still blonde.
I sometimes call her my “wild child” because of her mane. She is in no way wild, but truly a very mild spirit. However, trying to comb out those knots, matts, and curls is quite an effort. Society and media often associate a wild mane of hair with an unruly and defiant personality. Think about Merida’s wild red hair in the Disney movie Brave.
Growing up, I always wanted curly hair, and I went to great lengths to make my straight hair curly. I slept in big pink foam rollers praying I would wake up with fat ringlets like Nellie Olsen from Little House on the Prairie. Anyone raising their hand in agreement with me? I spent hours with my head weighted down with perm rods, inhaling awful chemicals, to get that perfect spiral and volume. And I really liked me some BIG curly hair! Some of my friends had curly hair and spent major bucks to get it blown out straight. That was just crazy in my eyes. It seems that people always want what they don’t have.
As a parent, we can be like a curling iron and perk up our child’s lives. Add in dance lessons, after school activities, theater, flair of dress, and those gigantic bows that are so popular right now, and voila – your child is unique. You add dimension and expression to their life.
On the other end of the spectrum, we can parent more like a hair straightener. Take that wild unruly mane or personality and set it straight in line. Some of us do that with medication to help our child focus and get work done. Some of us put our children in private schools with uniforms to keep the consistency in routine and organized path to an Ivy league college one day.
I am not saying that either parenting type is right or wrong. Maybe we even shift from one type to the next as our children age. There are so many articles about “helicopter” parents or the newest one I have seen “snow plow” parents. These terms tend to revolve around how parents interact with teachers and coaches. However, the curling iron or straightener styles hit closer to home. It is how we interact and embrace our own children. Everyone must deal with their hair or lack of hair daily. Our hair is uniquely ours, and the exact hair type God chose for us to have. Our children are uniquely ours, and the exact ones God chose for us to have.
In Psalms 139 (MSG) it says:
You know me inside and out, you know every bone in my body;
You know exactly how I was made, bit by bit, how I was sculpted from nothing into something. Like an open book, you watched me grow from conception to birth; all the stages of my life were spread out before you, the days of my life all prepared before I’d even lived one day.
My Goal Today – Start spending less time managing my own hair and start managing how I parent and mold my children. I think I am a little too much hair straightener lately. What type are you?
The Ducky Life
How do I teach friendship to my sweet girl that has no words? She is nonverbal and pretty blasé when it comes to her classmates. I cringe when her classmates’ parents tell me, “My daughter was so excited to see Piper. She kept saying her name over and over!” I want to say that Piper reciprocates. However, my sweet girl loves to watch and hear others but does not truly interact. I wish, pray, for the day that Piper will hug a friend without prompting or use her communication device to ask a classmate to hang out. I want her to have her bucket filled by being loved and being a friend to others. Her classmates get invited to birthday parties and go to father daughter dances. Piper would probably walk into one and then walk right back out. These events do not seem to matter to her. My heart aches that we do not even have even this fraction of normal, but I have to be grateful that she is not aware of “missing out”.
My husband sent me a text the other day telling me I should blog about Piper and her sweet ducky. He said I should share the story of Piper’s love for her stuffed duck. In an ambiguous manner, she demonstrates that real friendships last forever. It does not matter what your friend looks like, or what their limitations they have, because a true friend sees what is on the inside.
Now onto the tale of Piper’s sweet ducky. He was actually her brother’s Easter present. Piper received a bunny with an Easter egg body and her brother a duck with the same. She decided she wanted his duck, and they became inseparable from that day. This was over ten years ago! About a month into her “friendship”, ducky lost a wing. I am not sure where the wing went, but he was still able to perform his friendly duties without it. So, Piper’s sweet brother took a piece of plaid fabric and learned how to sew, so he could give ducky a new wing. My heart melted at his empathy and love for his sister.
Ducky’s wing lasted a few years, but his bill bit the dust quickly. Piper liked to chew on his duck bill and eventually chewed it off! My sweet mom made a new one out of a yellow washcloth and sewed it on. Well, next ducky’s head needed to be replaced, and sweet grandma made a new head for him with thread eyes that Piper would not choke on. Ducky’s body part replacements continued regularly.
I dreaded the day the ducky would disintegrate or be lost, so scoured eBay often to find a backup. One day, I hit the jackpot and found a replacement ducky! Piper was not sure about the new duck and tentatively split time loving them both. Then, it was apparent that new ducky could not replace her tried and true friend.
Last summer, we went on our first plane trip in 10 years to visit family in Washington for our niece’s wedding. Piper became ill and ended in the ER while there. Her ducky was the only source of comfort she accepted during this time. He was there beside her with a rotting head and only one wing. My sister in law was an angel and made a new head and wing for Ducky. These pictures say it all…
A friend is there for you no matter what state they are in, how they look, or how capable they are of loving you. Ducky brings Piper joy. She cradles him in her arms, brings him lovingly to her face, and pats him just like we patted her in the NICU. He is not pretty and kind of smelly, but Ducky is Piper’s friend. He is there when she needs him. He snuggles her every night. He can make her smile when she is sick and goes into surgery with her when needed.
I worry that one day this ducky will bite the dust, and I will have to persuade Piper to love the “pretty new one”. However, my heart is full that she shows love towards something. She is teaching me that I need to be okay with no pictures of dances with beautiful dresses or achievement bragging on Instagram. My girl knows how to love, she knows how to be a friend, and I will gladly care for her until the day I die.
When my Words Tear Down my Child
“Intelligent children listen to their parents; foolish children do their own thing. The good acquire a taste for helpful conversation; bullies push and shove their way through life. Careful words make for a careful life; careless talk may ruin everything.” Proverbs 13:1-3 (MSG)
“Do you want to fail third grade and have to do it over again? Because that is what will happen if you don’t start paying attention. How could you not turn in your homework after we spent 3 hours on it last night!” These horrid words seeped from my mouth before my brain could stop them. My sweet son, sat hunched over the table, with tears streaming from his eyes. I was saying the exact words that I advise parents never to say to their child.
In my frustration of a long day at work, coming home to a messy house, and no idea of what I would make for dinner, I carelessly allowed my words to flow. These words had the power of tearing my child down. All day, I speak words that build up other people’s children. My students are spoken to in an uplifting and careful manner. My purpose is to build them up and help them see that success is within reach. In this moment, I did not listen to my Father, and allowed my foolish tongue to do its own thing. It tore down my child’s self-esteem.
God blessed me with a sweet precious son that learns differently. He struggles with ADD and dyslexia. School has always been hard for him. I see so much of myself in him because I too have dyslexia and struggled through school. If I understood his challenges, then why did I say cutting words instead of helpful words to give him hope and a plan to get organized? The answer is Satan. He wants to use our words to belittle and tear down our relationships.
In James 1:19 we are told to, “…be quick to hear, slow to speak, and slow to anger.” As a Christian, I need to remind myself of this in every interaction with others. My emotions have a way of blocking my ears from the truth, my mouth to speak before thinking, and igniting a flame of anger that is not true to who God created me to be.
I not only had to repent, but also spend much time healing the cuts that my words caused in my son. Those words can not be taken back, but can be made a distant memory. Their pain can hopefully fade with time, as I speak truth, love, and most importantly God’s plan for his life to build him up and never tear him down again.
Heavenly Father, Thank you for the gift of being a mother. I ask for your forgiveness. My words were toxic and harmful to my son. I did not intend to speak them, but allowed my flesh to take hold of my tongue. Please guide me and give me pause in every interaction with him. Allow me opportunities to speak life into him and help grow my son’s faith in you. In Jesus name, Amen.
Truth for Today:
Proverbs 25:11, “A word fitly spoken is like apples of gold in settings of silver.” (NKJV)
Reflect and Respond:
What words can you speak to your child today to build them up?
Today, pick something to praise about your child like a character trait, school assignment, kind word given, or action that will build your child up. Tell them how much they are loved and that God created them exactly the way they are.
Dance Lessons
I apologize for being absent the past few months, but my dance lessons have kept me on my toes. These dance lessons have been FREE! You heard me right, absolutely free, thanks to life. I have learned to waltz, tango, echappe, and even a little krumping. My technique is far from flawless, but I have survived and made it to the curtain call. Let me explain…
The school year started off smoothly, and I planned to waltz through my days with renewed energy and free time. We made the decision that I would resign from my teaching job to be more present for the kids. I would research and tour possible schools for Piper to attend next year. Sending our precious nonverbal 15 year old daughter into the den of high school hormones and the unknown is terrifying. We have stayed in our failing school district because we have been blessed with knowledgeable and caring teachers. However, high school is a whole new animal. I will share more about high school search in a future blog.
The waltz is supposed to be smooth with a unique rise and fall action. So, I embraced my life director, the Lord, and immediately tried to lead. I thought I had this all figured out. During the day, I would write, tour schools, and take Piper to doctor appointments and therapies. During the afternoon, I would prep dinner and then head off to tutor students. The tutoring money would equal my lost teaching salary. This was when I began my first dance lesson.
I thought I would be gracefully moving forward, but I had to learn the box step. In September, my mom was still recovering from her extensive neck surgery and unable to drive. So, I was her chauffer to doctor appointments and errands. She was still suffering with myoclonic jerking and in a lot of pain. During this time, my grandmother started to not feel well. One day, my mom called to ask me to pick her up and take my grandmother to the ER. We were shocked by the news that my grandmother had stage 4 cancer. My ideas of graceful smooth days gliding around freely turned into days practicing the box step over and over again. One step right, one step back, one step left, one step forward and then repeat endlessly. Every day was the same. They were filled with tears, waiting, and taking the lead for this family of strong women.
My next lesson started when my grandmother left us only 6 weeks after her diagnosis. The ballet term Echappe means slipping movement or escaping. My heart was broken that she slipped from us so quickly. She had been my support and listening ear for 46 years. I kept expecting her to pop over or give me a call to say she loved me. The lesson I learned is that in echappe, after the dancer jumps, she lands back on the ground in second position. It is okay for me to leap in sadness and grieve, but then I must bring my feet back down to be a mother, daughter, and wife. That is what my grandmother would have wanted.
We had a couple weeks to grieve and prepare for her celebration of life. I was honored to be the family representative to speak. There were so many fascinating experiences in her life that made her the strong woman everyone came to love. I was starting to enjoy this new dance of slow, slow, slow, but then my dance steps turned to quick, quick, quick. The tango was my next dance lesson.
The week after the celebration of life, my mom went in for a hip replacement surgery. Once again, she would be unable to drive and in a lot of pain. Her jerking returned, and we ended in the ER two days after being sent home, for fear there was blood clot. When we stepped into that ER, our heart beats quickened because this was the same place we sat for hours before learning of my grandmother’s cancer. My mom and I cried, laughed, and tried to regulate our emotions. In the tango, the dancers’ orientation is constantly changing. It keeps the dancers on their toes. The next few weeks, my focus was on quick, quick, quick to the new year so then we could go slow, slow, slow and start a new time of hope with no pain.
I planned to dance into 2019 with high energy and excitement. Then I realized I also needed an escape from the grief and realization that our life would never be the same. So, I started my Krumping lessons. The dance from was actually created as a faith based artform. The word K.R.U.M.P. is an acronym for Kingdom Radically Uplifted Mighty Praise. Youths started krumping to express their emotions in a non-violent way. This most recent dance lesson has humbled me. I need to rely on God Almighty and not dwell in a season of anger for all that occurred in 2018. I will Krump! Actually, I will ridiculously try to Krump and continue forging ahead with excitement and full belly laughing. If you see me, ask to see my moves, and I can guarantee that your day will be filled with laughter too.
Practice hope my friends, Jen
Join us to learn strategies from Art Play Healing Therapy
Do you wonder if your child is struggling with anxiety? I am excited to have a therapist from Art Play to speak.
Learn how to recognize if your child needs extra support for identifying and managing their emotions more effectively, plus gain three concrete strategies for helping them at home.
This is open to all parents in the community. We will be meeting at Christ Lutheran School in Phoenix. The address is 3901 E. Indian School Rd. There is more parking in the Altitude Center next door. Please park in the most northern spots close to Indian School to not affect the businesses. Hope to see you there!
Dyslexia – a Disability or a Difference?
I sat across from a mother with tears in her eyes. Her daughter had just been diagnosed with dyslexia and a few other challenges. The wordy scientific books recommended to her were daunting. She searched for an understanding and jokingly asked if there was a Dyslexia for Dummies book to read. This resonated with me for two reasons. The first reason being that there is no simple way to explain the intricate processing of the dyslexic’s brain. The other is that our children learning to live with dyslexia have probably felt like “dummies” before.
The word dyslexia means trouble with words. We need to impress this definition into our children’s minds. They are not dumb or less of a person because they struggle. Many call dyslexia a disability. Disability means not able to do something. Our children do have the ability to read, write, and learn. They just do it differently. This is why we should describe it as a learning difference. We all learn to tie our shoes differently, but we end up with the same result. It does not matter if it was made with bunny ears, loop over loop, or cross over and go through the hole. It’s a tied shoe that will not fall off.
Our children will learn, but we need to be patient. They may process sounds, letters, word, or directions in a different manner. They have such an amazingly complex network of neurons, that it may take a bit longer than you would expect to process information. As a parent and a teacher, I have to remind myself to stop, wait a minute, and maybe even describe a sound or word in a different manner to get those neurons connecting. Give your child the time. Do not assume they are zoning out or choosing to be difficult. I am pretty positive that they do not want to be different.
As you embark on this journey of acceptance and parenting a different learner, please be an advocate for you child. Advocate for them to try new things, spend more time doing what they are good at, and give them tools to make it through school. Work with your child’s teachers to explain that your child may need to access information and/or be assessed in a different manner than others.
I will be honest, that I struggle with the advice some parents are given when seeking a program to help their child with dyslexia. Some have been told teachers should never require their child to use a dictionary, take a spelling test, write in any subject, or have any homework. It seems futile to fight for a child to not be labeled disabled, but then treat them as disabled.
School is practice for life. There are modifications that can be made to keep your child from feeling like they are not able to learn. Shorten the list of spelling words, excuse them from mindless writing of the spelling words 10 times each, and then after the spelling test, give them tools to make corrections. The teacher should circle the missed words, then let your child use a spell checker, a laptop with spell check, or even a word wall. The goal is to get your child to try. We want them to understand they learn differently, and have the right to use different tools to help them learn.
Set a time limit when your child is writing. Let them know you understand writing is difficult, but want them to practice. After the kitchen timer beeps, scribe for your child, and then write the teacher a note detailing how long they wrote, and then you wrote exactly what your child said. Do not autocorrect their writing or interject your thoughts, because the teacher knows your child struggles with spelling and writing and can spot your work immediately. Set your child up with talk to text or a program like Dragon Naturally Speaking if their fingers can not keep up with their imaginative writing.
You have the opportunity to take a situation that many of you have grieved about and turn it into something wonderful. Yes, your kid learns differently. Some people need glasses to see and hearing aids to hear, but they can still live a full life. Teach your child how to work hard and embrace their differences, because those differences are what will make your child shine in life. Each obstacle they overcome, each time they have to work harder than their peers, each tear of frustration shed is brightening their light and creating a star beautifully different from others.
Practice
prac·tice
Verb – perform (an activity) or exercise (a skill) repeatedly or regularly in order to improve or maintain one’s proficiency.
Have you ever caught yourself telling your child that practice makes perfect? I have been guilty of this a time or two. Recently, I was running a parent teacher conference; the child’s parent mentioned the phrase “practice makes better”. It started a chain of thoughts running through my head for days.
I realized that as parents, we take our children to multiple practices weekly and some of you multiple practices daily. Parents ensure their child practices baseball, soccer, football, dance, and even academic work like spelling words or multiplication facts. Growing up is full of practice. Sometimes, we require our child to continue practicing even if he or she would like to quit. Because our parents taught us never to be a quitter, right?
Conversely, as we become adults, the idea of practice seems to drift from our minds. We have jobs to do, money to make, and if we have not learned a skill by now, then we assume that we never will. I think we need to grasp on to the “practice makes better” concept and live out what we preach.
Parenting is hard. We are not guaranteed our child will mind, listen when we speak, stay out of trouble, be an A+ student, or be able to grow into an independent adult. Parenting also includes the ability to repeatedly interact and improve our child’s life. Their childhood is a gift of time. It is a set parameter of years that we need to use as our practice.
When our daughter, Piper, first started therapy at the Foundation for Blind Children, we were told to be patient. They explained that due to her lack of vision and poor muscle tone, it could take her 1,000 to 10,000 times to learn a skill that typical kids could learn in about 20 practices. Her response times were delayed severely. I would ask her to pick up a toy from my hand, and when she did not respond, it became frustrating. It was easy to pull my hand away, a minute after asking her to pick it up, and assume she did not want the toy. However, being patient revealed that it took her about 2 minutes to process the command, tell her hand to move where it needed to, and keep her body from falling over. If I had not continued this practice, she would have given up and assumed she would fail.
As parents, we need to practice daily. We need to practice patience, practice listening to our child, practice having hope in their future. Please do not pull your hand or heart away when your child does not respond. It may take your child multiple practices to become the better that they can be in this life. None of us are perfect, but those that practice compassion, empathy, and hope seem to have a better ability to handle life.
Keep practicing!
Spent
VERB past and past participle of spend.
ADJECTIVE having been used and unable to be used again
synonyms: used up · consumed · exhausted · finished · depleted · drained
This is actually one of my favorite photos from Piper’s intensive therapy. It represents the sheer exhaustion of giving every ounce of strength she had daily. Pulling herself forward on the scooter board was the last activity of each day. She hated it! We dreaded it also, because we had to come up with some tangible motivator to help her muster those last ounces of energy. She never quit. She lifted her head, protested with loud cries and tears, but she finished it every time.
How many days and hours do I feel spent and refuse to finish? What task is the Lord prodding me to accomplish, yet I lay down and cry? I often feel depleted and that I will never make it through the valleys. But, somehow I do.
Almost every definition of spent I found included the phrase “unable to be used again”. This is where the secular world is mistaken. Piper used every ounce of energy, yet each morning, the Lord graced her with renewed energy. She did not refuse to get out of bed. She may have protested and whined about walking in some days, but she did. Jesus said while dying on the cross, “It is finished,” but we know that was not the end. He died so that we can get up each morning with the opportunity to start again.
I look at this sweet picture of Miss Piper daily. It is a constant reminder to me that sad days will end, the struggles will wax and wane, there will be light in the dark places, and I will NOT accept that my life could be used up.
Let’s challenge each other to live a “spent” life. Let’s pick up our broken and tired bodies, spend every ounce of life we have in loving our children, spouses, friends, and selves because our journey is not finished.
She believed she could, so she did…
believe [bih-leev] to have confidence in the truth, the existence, or the reliability of something
When the Lord opened the pages of this story, it seemed impossible to complete. He put the desire in my heart to seek more for Miss Piper. He knew that it was possible, and I just needed to believe. Thank you everyone that helped this story to come to fruition. It is your support through prayers and donations that God used to help write her story.
My mom bought Piper this shirt for her to wear the last day of therapy. Its phrase, “She believed she could, So she did” was the mantra to get through the daily grind. Piper cried, she protested, she lied on the ground and refused to get up. Somehow, He gave her the strength to continue. She was blessed with amazing therapists that loved her and gave her a reason to keep going. Some of them used music. I did not know that Piper liked Taylor Swift or Bruno Mars. She actually used her Aug Comm (iPad) to tell me her teacher played their music in class. The other therapists quickly learned that Piper loves books. If someone reads to her, she will do anything to get to the next page.
Piper jumped on a trampoline, rode an adaptive tricycle, got up to 3.7mph on the treadmill once, walked up and down the main stairs a million times, sucked out of a straw, and learned that she CAN DO ANYTHING! Her sweet brother was there to cheer her on and help her when she fell. God sure blessed me with these two.
This story is not finished. It is only the beginning of many pages that will share of triumph and some that will share of frustration and sorrow. These Toby Mac song lyrics remind us to keep walkin’ and Piper is going to do that. He isn’t finished yet.
Move, keep walkin’ soldier keep movin’ on
Move, keep walkin’ until the mornin’ comes
Move, keep walkin’ soldier keep movin’ on
And lift your head, it ain’t over yet, ain’t over yet
Hold on, hold on
Lord ain’t finished yet
wa·ter [ˈwôdər, ˈwädər] NOUN a colorless, transparent, odorless, tasteless liquid that forms the seas, lakes, rivers, and rain and is the basis of the fluids of living organisms.
Water sustains life. People swim in it, bathe in it, ingest it, and probably would not describe it as dangerous. However, when you or a loved one aspirate, it becomes dangerous. Piper, our daughter, was diagnosed as a silent aspirator at birth. My plans of breast feeding disappeared with the introduction of an NG tube and morphed into hours of pumping then gravity feeding her through a tube. My milk was supposed to be the base fluid of her living organism, yet it held the power to end it.
As she aged, we were able to get rid of the feeding tube but became tethered to thickener. The only way Piper could drink fluid was to have it thickened to the point that she would not aspirate. Doctors use a test called an MBS, modified barium swallow, to determine if a person is aspirating. A person drinks fluids of different consistencies containing barium while being observed via radiation technology. Piper failed every MBS. So we started thickening liquids to honey consistency and a year ago finally graduated to nectar consistency.
What did this mean for our family? We could not allow her to play in the pool or bath without supervision and physically keeping her head above the water. She could not easily grab a juice box or water bottle at a gathering. Her teachers were not allowed to give her anything that I had not prepared to appropriate consistency. We even had to thicken liquid Tylenol or Benadryl. Jello, soup, and ice cream were not allowed.
A year ago, we restarted a therapy called Vital Stim. It is the placement of electrodes to the throat area for an hour a session, while actively swallowing, and is supposed to strengthen the swallowing function. We had tried it when Piper was three years old, but it did not work. The Lord opened the door for us to get 48 vital stim sessions covered at Phoenix Children’s Hospital last year. Piper did well, but was still aspirating. Schedules and paperwork kept us from being able to complete the therapy to efficacy.
Amazingly, in the past 2.5 weeks of vital stim at NAPA, Piper is thickener free! We have weaned her off of it and are cautiously introducing different drinks and cup types. This is a miracle that my sweet mother, Grams, prayed for and claims daily.
In addition to vital stim, the sweet speech pathologist at NAPA, has taught Piper to suck on a lollipop, stick her tongue out to lick a lollipop, and almost efficiently drink out of a straw.
In John 4:14 the Bible says, “but whoever drinks of the water that I will give him shall never thirst; but the water that I will give him will become in him a well of water springing up to eternal life.”
We are blessed that this therapy opportunity came to fruition and has been such a success. Piper will have eternal life.
.
Changing Direction
As we reach the half way mark of our NAPA experience, I want to share what God is teaching me. This trip was all about Miss Piper. The goal was to give her the skills she does not instinctively have and to pattern in her the ability to use her strength. She is forced daily to move out of her comfort zone, asked to do things she does not understand, and told to change directions. I’m realizing a similar pattern to my life and God’s directions.
Piper has grown so much stronger since she was little. She had zero upper body strength and could not sit without falling over until after turning two. God has blessed her with developing strength, but she does not quite know how to use it. She pushes when she should pull. She straightens when she should bend. She tries to sit when she should stand. These amazing therapists have to pattern the appropriate movements for her. It will take hours a day for three straight weeks to hopefully get her to recognize these new patterns. You can see the confusion in her eyes and her thoughts processing. We are learning to not rush her, give her time to respond, and figure out which muscles should move where.
God is like these physical therapists. He allows us to be put in situations over and over again to learn how to move differently. Often, we do not have the instinct to change directions for our own good. It is hard. It is uncomfortable. If we keep pushing through our discomfort and imbalance, we will be stronger like Piper. We will learn that sometimes changing directions is necessary.
Walk on Wednesday
This week has been rough for my girl. Piper has had to use muscles in her body that have laid dormant since birth. Her cerebral palsy diagnosis is not a life sentence. It is an explanation that her muscles do not work with her brain. They are on different plains. I am so excited to see new muscles shake and twitch. God gets the glory! He created this beauty and picked her journey. It is one of hope and strength.
Love this video because Toby Mac has a song about soldiers walking on. He sings to hold their heads high and keep moving forward. Thank you @tobymac for giving my girl the strength to keep walking even when she wanted to give up.
First Steps
Miss Piper was exhausted after her first day at NAPA center. She complained, but amazed us as she persevered.
Snuggles from my worn out girl… 💕 You did good baby girl.
Saving Our Turtles (Children)
I have loved turtles since I was a young girl. In the humid summers at my grandparent’s lake cottage in Indiana, I would spend hours each day catching and releasing turtles. In my mid-twenties, I paid to be part of an Earthwatch Expedition in St. Croix to help “Save the Leatherback Sea Turtles”. Something about turtles intrigues me. They have a hard tough carapace, top shell, that looks indestructible, but can be injured. Cartoons depict turtles withdrawing into their shells in times of surprise or fear. Actually, the box turtle is the only turtle that can truly pull itself all the way into the shell for protection.
Did you know that only 1 in 1,000 sea turtle hatchlings survives to adulthood? There are predators, obstacles, and genetic mutations that can cause their demise. Our daughter is diagnosed with cerebral palsy but most likely has an unidentified genetic disorder. We knew about this from birth. Our family refers to her as our “turtle” because she is on her own time line, moving and developing slowly, but we pray she will finish the race strong. She reminds us of the childhood story “The Tortoise and the Hare”. But, I am not going to talk about her today. I want to talk about your turtles. Your children that learn a bit differently. School is hard for them. They want to retreat into their shell, but we can not let them.
Almost daily, a parent reaches out to me in tears or throwing their hands up in surrender. They do not know how to get their child to care about school, work smarter not harder, study, and/or remember to turn completed homework in to the teacher. This one cracks me up. We all agree that if a person does the work, they should want to get credit for it. Am I right? Your turtle does not think this clearly.
Our children that learn differently need to be explicitly taught to head for the water.
Turtle hatchlings will follow any light, assuming it is the moon, because God instinctively wired this into them to help them get to the ocean after hatching. Often, the lights from resorts or volleyball courts lead them astray. The hatchlings use all their energy to flop toward the wrong light. Our children know they are supposed to turn in completed assignments, do their homework, and study, but the distractions are too great. That light pulling them to what they are good at or what is more fun, is stronger than their instinctive desire to obey their parents and follow teacher directions.
What is a parent to do? Lead your child to the water. Take all of those thoughts that you hear from society about letting your child fail to become a better learner and bury them. You, or a teacher, have to teach your child, step by step, how to be a learner. Children do not always instinctively know how to get there. We need to coach them through the school journey, but not take out all of their obstacles. Your child needs to learn how to avoid predators and move around driftwood dead ends. The goal is to get your kid (turtle) to the water. Once he or she is there, I believe they will swim and eventually beat that hare (smarty pants kid that gets straight A’s without trying). Sorry, I am sure these kids are just as dear and loved, but sometimes I get tired of having their accomplishments shoved in my face on social media. No one posts about the time they cried with joy because their fifth grader finally passed a multiplication timed test. I do not post when my fourteen year old actually holds a spoon on her own and feeds herself yogurt. We may not post these victories on line, but we should praise our child as if they made the honor role. Each step, each hurdle is significant.
Children with learning differences, ADHD, on the spectrum, executive functioning challenges, and other diagnoses may not be able to find the water on their own. God picked you to be their parent. He knew your child would have trials, tears, anxiety, feelings of not being good enough, or disappointing you. It is okay. Your baby turtle is going to make it to the water, but you need to patient.
As parents and teachers, we need to help our turtles see success as attainable. They are not stupid or lazy. Our kids just see things differently. This is what will make them great swimmers in the future. They will not ride the same current as the masses. It will be their beautiful minds creating intricate swimming patterns that will make all your struggles worth while. Hang in there mamas and papas because your journey will be the memories in your child’s future.
This Little Light
I grew up singing the gospel song, “This Little Light of Mine.” I knew all the verses, motions, and even sang it to my children. There are verses telling children to let their light shine all over the world, not to hide it under a bushel, and definitely not to let Satan blow it out! However, I just realized that I have not been living the way this gospel advises.
“You are the light of the world. A city on a hill cannot be hidden. Neither do people light a lamp and put it under a bowl. Instead they put it on a stand, and it gives light to everyone…” Matthew 5:13-16
It seemed like I let my light shine while teaching and living as a Christian. But if I dig deep, I know that I am not shining as bright as I could. I have always disliked change, because I want to know what could happen if I make the wrong decision. My only true career has been teaching. I have been shining that light for 21 years. However, I keep praying for a person to come along, like Helen Keller’s teacher, and miraculously shine their light on my daughter, Piper. She has been blessed with Christian teachers that care and help her grow in her life skills. But, I want her to have a teacher that will devote all her attention to teaching Piper to communicate and become as independent as possible. In all honesty, I know this is quite a lofty hope.
As I reflect on the fact that Piper has one more year before high school, I am seeking answers and guidance for her future. God gave this beautiful girl to us to raise and love. We do not know what she can learn to do or become in her lifetime. She has grown over the years, but doctors are unable to measure her knowledge or intelligence, because she is nonverbal. It breaks my heart that I am not able to tap into her knowledge and know what she thinks. My excuse to shine my light is that I spend most of my days teaching other people’s children. I am tired when I get home and not desiring to be a tough teacher or therapist.
In a yoga class a few weeks ago, the teacher spoke about dark rooms and light. She told us that it was time for us to stop peering into dark rooms of future and opportunity while waiting for someone to turn on the light. We need to enter those dark rooms and BE THE LIGHT. This blew my mind! I have been waiting for God to shine His light and show me what decisions to make. I wanted him to show me the whole layout of the room before I entered. I needed to know the bumps in the rug to not trip on, if there were broken windows that would let in a chill, or if the flowers were growing or dying. Honestly, I wanted to know God’s plan so I could change it. I wanted to decide if the risk was worth it.
That is not my role. God has continued to spark my light so it can shine and not be blown out. God wants me to trust him. He will be holding my hand when I enter dark rooms. I am trusting he will be with me when I leave the comfort of the only job I have really known. I will shine my light when the winds of fear set in that financially we will not make it, no one wants to hear encouragement from me, or that I will not succeed helping my own child to learn.
Dear Lord, please make me brave enough to go into dark rooms and shine my light in this world. Help me to be confident in the light you have given me. I trust that you will let no one blow it out. I am sorry when I do not trust you and try to tell you how my life should unfold. Thank you for giving me light. Amen.
Comparisons
Sonnet 18: Shall I compare thee to a summer’s day?
By William Shakespeare
It is hard to live without making comparisons. We compare ourselves to other’s looks, jobs, accomplishments, grades, homes… The list could go on indefinitely. I succumb to comparing myself too often, especially in this day of technology, especially Facebook.
In Shakespeare’s Sonnet, we assume he is comparing a loved woman to a summer’s day. Summer days seem to be beautiful, warm, and glowing. If the sonnet is read more closely, it is apparent that Shakespeare is writing about himself. I have read critiques that think he is glorifying himself. However, as I read the sonnet, I think that he is trying to make the reader aware of how beauty can change over time.
In my teens and twenties, I lived searching for the beautiful, glowing “summer day” that my life was supposed to become. It did not matter how I starved myself, studied to oblivion, or prayed for a husband and then pregnancy, my summer day never came. There was no glow, no perfect day. I think this is the case for most of us. We create this perfect life from what we read in books or see on social media.
Take a moment and read the sonnet carefully. There are subtle changes in his tone and verbiage. Shakespeare begins to spin descriptions painting the picture that every beauty will fade. It could fade by chance or through the natural course of time passage.
Every moment that I spend comparing myself to others, I lose a moment to be present in my real life. My life is not splendid with travels and children that earn straight A’s. We do not take fabulous trips abroad or dine at gastropubs. I have wrinkles and gray hairs. My body is not as tone and slim as in college. Married life is hard! We disagree on many things and lack the ability to have conversations about things other than our children. I fear that we will soon have nothing to converse about. But, I think other women have these same thoughts.
I fiercely love my daughter with her disabilities and lack of words. My husband tells others that as long as Piper is loved and happy, she will live with us, until we are unable to care for her. This makes me love him even more. This makes up for the conversations we do not have or the accolades I wish he gave me. I cannot compare him to other husbands because they live different lives. I cannot compare my struggles and feelings of inadequacy to other women because I am in a different situation. God chose us to parent our children, in the humble home we live in, with the income he has blessed us to earn.
My summer’s day may never come, but my nighttime firework show is brilliant! I have spectacular sparkles of a daughter using her communication device to express her needs, exploding excitement of a son that pours all his energy into being the best baseball player possible, and my musical anthem supporting their show by remaining consistent.
Let’s stop comparing our journey with others. We need to write our own poems boasting about our challenges and triumphs. It is time we look at our accomplishments and changes created over time as a blessing. Please drop a comment about how you are honoring your imaginary “summer day”. I want to hear that I am not alone. You, my dear friends, are a beautiful summer day. Bask in the warmth.
No Diagnosis Drama
drama [drah-muh, dram-uh]
Any situation or series of events having vivid, emotional, conflicting, or striking interest or results.
My original title for this post was The No Diagnosis Depression. After mulling it over, I decided it really is not a depression. Rather, it is a drama. It feels like I have vivid, emotional, and conflicting feelings with no certain result. My heart aches for a diagnosis, a reason to understand what Piper is going through. A diagnosis of which we can relate to other families with similar fates. A crystal ball to see what the future holds for my girl. We thought when we joined TGen’s Center for Rare Childhood Disorders, that we would finally get a diagnoses, an answer. God blessed us with being accepted into their research, and we are thankful.
After Darrin, Piper and I had our blood drawn, we waited. Then we waited some more. Finally, I got a phone call that had words I did not want to hear. It was the patient care coordinator from TGen. She said that the geneticists had tried exhaustively to find a diagnosis for Piper. Unfortunately, there are no known syndromes that match Piper’s phenotype. Phenotype means the symptoms she presents with like hypotonia, no speech, severe developmental delays, unable to potty train, unsteady gate/walk, often holding hands at a 90 degree angle, etc… I was told that her information would remain in their “super computer” until someon, somewhere, finds children similar to Piper and conducts a candidate gene study. Until that time, we are back at square one.
My feelings were unsettled. I wrestled with our conversation. They told me not to get my hopes up, but I expected at the very least something small. My mom urged me to call back and see if we could meet with the neurologist. There must be something overlooked or some more information that would be helpful. I explained my concerns and fears. A meeting was set up and Darrin was to join us. At the last minute, he was unable to attend because he had to cover at work. So, I took Quinn and Piper by myself.
It was a meeting of spoken words that I did not understand. My history of teaching biology helped me to understand some of their vocabulary. However, there were so many numbers and gene sequences mentioned that I could not keep up. I tried to write notes, but keeping Piper entertained and sitting in her chair was a distractor. She continually wanted me to walk her. The doctor and patient care coordinator shared they thought they had found Piper’s syndrome, but it was ruled out because I had the same mutated gene with a shank deletion. That meant that it could not be Piper’s syndrome. I felt so alone.
At home, I decided to look into this syndrome, thinking maybe they made a mistake. On the syndrome’s website there were children that reminded me of Piper. It is affectionately called the “no speech syndrome”. This described my Piper to a tee. I decided to contact the lead of the family support group just to ask a couple more questions. She willingly offered to forward our test results on to their main geneticists. Once I got the information from TGen, it was sent to a doctor in Paris and one in Mt. Sinai. They both concurred that Piper and I had such a small deletion it could not be diagnosed as this syndrome. So this truly was our dead end. It was our go back to start card.
Square one again can seem like a dead end. I can look at it like a hopeless street coming to an end with no way out, or I can choose to think of this dead end as a cul-de-sac. We will maneuver our way around the curve and head back out. The journey will continue.
Lord, I am disappointed but not hopeless. You are the one that decides the information we learn. Thank you for opening my eyes to see the pearl created by all these years of sand grinding, irritating, forming something within the oyster of my life. She is your child and that is what makes her special. Amen.
Pain
[ payn ] 1. unpleasant physical sensation: the acutely unpleasant physical discomfort experienced by somebody who is violently struck, injured, or ill
2. feeling of discomfort: a sensation of pain in a particular part of the body
3. emotional distress: severe emotional or mental distress
It is a humorous thing to my husband and others, that I am not able to handle pain at all. At the first sign of blood, I usually throw up or pass out. That is why it amazed them that I wanted to have a drug-free delivery. My husband just smiled and humored me. He knew that I would not make it past an hour without drugs. Well, he was right!
My contractions were horribly long and awful! I am sure that veteran birth mothers would find it nothing at all. The nurse said she would give me something to help me manage the pain. We were thinking something like extra strength tylenol. Actually, she injected morphine into the IV and then ten minutes later injected another dose. I passed out cold. When I awoke to be admitted, the labor had stopped. We were worried about the baby and why the morphine had stopped my labor. After a conversation, the OB on call decided to administer pitocin. It was only three days before my due date.
A couple hours later, my water was broken, and I requested an epidural. My dialation went from 2 to 10cm very quickly. Our baby’s heart rate dropped and nurses rushed in. I amazingly pushed her out in only a couple pushes. We were going to meet our baby! But, that did not happen. Our baby girl was slow to respond to resuscitation and had decreased muscle tone. Her apgar scores were 6 and then 8. Nurses scurried, a neonatologist was called, she needed oxygen, and was then taken to an intermediate care nursery. I sent Darrin with her and watched them exit the room. My body hurt, my heart hurt, and I was so confused. I was supposed to be holding my baby on my chest, cooing over her beauty. Our little Piper Amanda was finally here but not with me.
That night was very traumatic. Nurses continued to force me to try and nurse her. Piper could hardly suck and would scream as I tried to feed her. She also made a loud vibrating sound as she breathed. Later I was told it was called strydor. I could not feed my baby or comfort her. The breast pump was introduced to me. It became a close friend, because it was the only way I could feed my girl.
Piper had fluid in her lungs, thought to be pneumonia or aspiration, and the doctors started antibiotics. We had to put our little girl through a broncoscopy to determine why her lungs were filling with fluid. She was diagnosed to have laryngomalacia. Her larynx was floppy and did not cover her windpipe when she drank. The milk would go straight into her lungs and turn into pneumonia. This meant she needed to have a nasogastric tube. So now she had a tube up her nose in addition to a heart rate monitor, oxygen monitor, and an IV. The IV happened to be in her head because the other places on her body would not allow it.
Doctors were still unsure of what was wrong with her. An echocardiogram was done, because in her chest x-ray the heart looked abnormally shaped. Some nurses thought they saw seizure activity, so ordered an EEG. All came back normal. I look back at my journal from this time and see that my heart felt like it was being ripped out. My daughter had tubes shoved down her throat into the lungs, needles poking everywhere to find a vein, and the insesant beep of the oxygen monitor yet I could not stop any of it. I could not fix it. I could not save her.
We finally were released after seventeen days. Seventeen days of visiting the hospital and praying we could bring our girl home. So we headed home with the apnea monitor, extra nasogastric tubes, tape to adhere the tube to her face, and bags to put my milk in to gravity feed her through the tube. We were so happy!
My husband still cringes when he hears a whirring sound like the breast pump. I was surprised I did not wear the motor out. It was pumping many hours in the day. Piper’s feeding times were a challenge. I would pump for 20-30 minutes, then put the milk into a bag that looked like an IV bag, hung it on a pole, and then let gravity do its work to feed our girl through her ng tube. That would take another 30-45 minutes. Then we would start all over again in a few hours.
A developmental nurse was to come to our house and check Piper’s progress in a few weeks. That was the only help the hospital offered. We were sent home feeling scared about how to care for our baby. Being a teacher, pictures of bullies, teasing, and special education classes were in my nightmares. How could they send us home so unprepared? Where was my lesson plan? Where was my list to check off of things to do for her?
That nurse did come, and noticed that Piper had gotten floppier. Her head always tilted to the left, and that side of her head had become flat. I explained that Piper would not look at me. She did not respond to faces or toys in front of her. We were sent to a pediatric opthamologist. He diagnosed Piper with Cortical Visual Impairment. There was nothing structurally wrong with her eyes, but the pathway from the eye to the cortex in her brain was blocked. The doctor gave me a script that changed our life. On it he had written the phone number for the Foundation for Blind Children. My body seemed to implode with pain. How could she survive? It was already bad enough that she could not drink on her own, could not hold her head up, but now she was also blind. God please help me to understand why this was happening I prayed.
After a week or so of wallowing, I made a phone call. It was one of the best phone calls I have ever made. A woman from the foundation came out to evaluate Piper. She set us up with an Early Invention Therapist that came to the house once a week. We were able to go to the foundation on Fridays for music time and a parent support group. This was the lesson plan I needed, the steps to follow, and a huge blessing. I was able to get her physical therapy, feeding therapy, and occupational therapy. They taught me how to apply to the Department of Developmental Disabilites (DDD) to receive these services and help pay for the many doctor appointments. I made some good friends and saw there were other families struggling in similar situations.
My maternity leave from teaching had to be extended a month. Piper was not ready to be left with my mom yet. During that time, we were working to get Piper off of the ng tube. She had a Modified Barium Swallow at four months that showed she was controlling her swallows better. If we wanted to get rid of the tube, we had to sit her in her carrier at an exact angle, use thickener, a special nipple, and regulate her swallows. We agreed!
So, I went back to work full time along with my friend – the breast pump. I officially felt like a cow. But I felt thankful that I was able to produce so much milk. My mother was fabulous and watched Piper during the day. Grams, as we call her, helped with Piper’s many therapies and intricate feedings. She accompanied me to doctor visits, held me when I cried, and kept me from having a nervous breakdown. While praying for Piper, God let her know that Piper is our little tortuga (turtle in Spanish). Her race would be slow and steady, but she would finish the race. My mom repeats this to me over and over. She stands by it and has a strong faith that it is true.
There is a fabulous poem called “Welcome to Holland” that I think everyone should read. It summarizes the excitement of preparing for a child, and the pain of that child being different than expected. As a parent you want the world for you little ones. Sometimes they are not capable to handle the world. Or rather, the world is not tolerant enough to handle them. We adore Piper and would never wish for someone different. But we also grieve that there are experiences she will never have, traditions that will never be, and communication between us that will never be easy. She may have to live with us for the rest of her life. So we will give her a life that is happy, loving, and safe. She is our Holland.
Welcome to Holland
by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…
When you’re going to have a baby, it’s like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” ” Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place.
It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around… and you begin to notice that Holland has windmills… and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things …about Holland.
Lord, thank you for having our plane land in Holland. Piper is a gift and a joy every day. Yes, I am tired most days from waking early and meeting her self-care needs. No, I do not feel anger toward her for this. You gave me this pearl to care for and treasure. Please help me to always remember the pearl she is amidst the sand and struggle.
Infertility
INFERTILE
1. not fertile or productive: incapable of or unsuccessful in achieving pregnancy
I thought with my fabulous ability to control my future, getting pregnant would happen in a snap. God once again, had other plans. We spent four years trying, going to infertility doctors, getting painful fertility shots, insemination, and more. I became increasingly aware that I was the problem. My hormones were not right, my uterus lacked a lining, and my ovaries did not want to release the eggs. Had my years of abusing my body caused this? It probably was a contributor. My heart sank as I offered to divorce my husband, so that another woman could give him the child that he dreamed of. He thankfully declined!
During these years, one of my dearest friends got pregnant. She was afraid to tell me because of our unsuccessful tries. I was so happy for her, but so pained for us. Why was God blessing others and skipping over me? She was blessed to grow a baby. I was not. It is embarrassing for me that I actually cried my way through her baby shower. I look back and think how selfish I was. At the time, my emotions were so raw and hard to control. I hope that she understands and forgives me. Then another friend got pregnant and another.
Darrin and I had resigned ourselves to take a break. We were beaten and tired from the emotional roller coaster. If God did not bless us with our own child, we would adopt. I was actually at peace with this and looked forward to no more guilt. While you are trying to get pregnant, you get sick of so many people telling you to just relax and it will happen. Well, that is exactly what happened. I let go and let God! It was as if he were next to me saying, “Now is the time. You are ready for my special gift.”
I could not believe it. The pregnancy test showed two lines! Out of the hundreds, probably more like thousands, of dollars spent on pregnancy tests, I had never actually seen two lines! Instantly, I went to the store to buy a different brand of pregnancy test. Surely, this was a faulty brand. I took it to my parent’s house and promptly peed on it. It also said I was pregnant! Yippeee! The next step was to call my husband, who did not believe it either. He needed to see the pee sticks, then the blood test results, and finally an ultrasound. Men are so wrapped up in the factual aspect of things. My heart knew that God had finally blessed us.
We went through all of the doctor appointments and birthing classes. When asked about doing the genetic test for abnormalities or syndromes, I declined. My belief was that we went through so many challenges trying to get pregnant, surely God would give us a healthy baby. I ended up being wrong, but we would not have aborted anyway. My sister’s life was taken prematurely by cancer, and I could never take a child’s life because he or she was not perfect. It is rather ironic that I do not expect perfection from anyone but myself.
It was a few weeks from my due date, and some of my students had been out with the stomach flu. I was not immune to the virus and became very ill. It is difficult to run to the bathroom and actually vomit “in” the toilet with such a large belly. My respect goes out to those women who suffer morning sickness throughout their entire pregnancy. I went to the OB triage and was sent home to drink more fluids. That did not work, and I returned after losing six pounds. Finally, they admitted me for IV and potassium. My husband could not stay with me in the hospital, as he had been struck by the virus as well. It was a very scary night of blood tests, fetal heart rate monitoring, and being assessed every couple hours. The doctor released me the next day, thanks to the wonders of Zofran. It is a fabulous anti-nausea drug. I went home and awaited the arrival of my perfect daughter.
Lord, you knew the gift you were about to bring into our lives. You must have felt we were strong enough to handle a life with Piper. She was a long awaited miracle in a very painful, sandblasted life. Please help us to be the parents you desire.
Weary
wea·ry
[ wee ree ]
1. tired: tired, especially in having run out of strength, patience, or endurance
2. tiring: tiring or exhausting
3. showing tiredness: showing or characterized by tiredness
I had to enter outpatient therapy and tried very hard to get healthy. My therapist was spiritual and divinely a Christian. She gave me a book of daily devotions with scriptures to help me through that time. Our sessions helped me to realize that the road will not just change overnight. It would be a long journey full of pitfalls and backslides. But I was thankful to be alive.
It seemed like I gained 20 lbs. overnight, once I started to eat and keep food down. This was the most uncomfortable I have ever been in my own body. I think what made it so hard, was that I was not supposed to do anything about it. I had to give my body time to heal with no dieting or excessive exercising. It needed a reprieve from all the damage I had inflicted. It is difficult to look at pictures of myself at that stage. Many pictures from college show my round, swollen face from all of the binging and purging. People probably just thought that was the way I looked. These pictures break my heart when I see them. My eyes are so empty and my body tortured.
Once I was not hiding behind the symptoms of my eating disorder, the root of my problems started to be revealed. I suffered from depression. My doctor suggested that I start taking anti-depressants. It took a while to figure out the right one. Some made me feel even more desperately out of control and others caused anxiety. I remember having to leave a class lecture because I literally felt I was going to crawl out of my skin.
Over the next few years, I struggled with needing a medicine to be normal. I wanted to do it all on my own. It would seem like I was doing well and could handle things. So, I often stopped taking the medicine and would spiral out of control. My eating would worsen and the depression would obviously take over. It is a battle that continued for many years. It is only now that I am forty-five, that I do not question the need anymore. I am chemically unbalanced, always have been, and probably will always be. I need medication to balance my thoughts, actions, and words. A diabetic needs insulin to survive. I need anti-depressants. This does not mean that I like being dependent upon meds. It is something that I have to do to survive. Actually, in truth, it is also something that I need to keep from going crazy!
My husband, Darrin, has been one of my biggest supporters. He often would notice when I “took myself off of meds” and persuade me to go back to the doctor. I am so thankful that God gave him to me. He has walked in circles with me for hours to keep me from purging. He has talked me through an anxiety attack that paralyzed me in a grocery store. It was the first relationship that a man stood up for me. A man actually wanted me to be healthy.
We married in 1998. I was teaching fourth grade at the time in a public school. My life and compulsion had been my students until then. I would stay at school organizing and writing notes, making sure the desks were in perfect order, and the room was cleaned. My body obsessions still continued. I was mostly healthy, with a few backslides here and there. It was better for me to obsess about school than my weight. I had found my husband and was supposed to be fulfilled. Yet, now I wanted the next step. I wanted a child. Darrin was adopted and wanted a child more than anything. He could not wait to look into the eyes of someone that shared the same blood. I could not wait to give him that opportunity with a child of our own.
Labels
la·bel
1. a small piece of paper, fabric, plastic, or similar material attached to an object and giving information about it.
Many parents fear the “label”. They do not want their child to be seen as a word on paper like dyslexic, specific learning disabled, ADHD, executive function disordered, autistic, bipolar…. This label is embarrassing to some, heartbreaking to others, and creates stabs of guilt that it is probably your fault. Guess what??? THIS IS NOT ABOUT YOU!
This is about your child. It is giving information about how they learn, how they thrive, how they make sense of school, and what makes their learning different. As a society, we spend so much time honoring the differences in people’s ethnicity, gender, sexual orientation, and religion. Yet, some parents try to hide the very differences that make their child special and unique.
As an educator and parent of two amazingly special children, I am here to tell you to get over yourself. You created this wonderful human being, unlike any other, and you want to hide their differences. The answer to your fears and struggles is simple. It’s car keys.
What? Yes, car keys. Think of your darling child as a car. A hybrid made from your very own DNA. They are unlike any other. There is one key that starts their car. One key that ignites their desire and ability to learn. One key that allows their engine to fire. Why would you not give their teacher the key to start your child’s car? If you hide your child’s difference or refuse to seek an evaluation to figure out why they are struggling, you are hiding that key. You are wasting a year of learning that could be taking place. You are basically handing the teacher a key ring full of keys and saying, “Good luck. Hope you find the right one!”
Teachers love their students. Okay, maybe not all teachers, but I do and my friends do too! We want to help your child. We want to help them see success as attainable. We do NOT want to tear them down and make them feel like failures. So, when a teacher suggests that there is something concerning or confusing about they way your child is developing, listen to them. Please do not take it as a finger pointing that you have not done your job. Teachers are not neuropsychologists able to see into your sweet child’s brain and pinpoint why they are not focused, able to decode a word, or remember the three little things she/he asked them to do.
They are actually just as worried as you parents. They worry they let you down by not figuring out how to help your child learn. This is one hard part of my job as the coordinator of a resource program in a private school. I need the teachers to be honest with you. They are often afraid to burst your bubble of pride by saying your child is struggling. It is truly important to find the learning differences and remediate as soon as possible. Your child’s mental cement is still wet in their early years. It can be molded and supported in the manner they need. Do not wait to help mold them because feeling like a failure and dumb is one of the hardest mindsets to overcome.
Please consider finding the key to start your child’s car and giving that key to their teacher. Do not waste another year making the teacher figure out how your child learns. Start your child’s engine and watch them speed along the road of learning. There will still be speed bumps and traffic, but you will have given your child the chance to navigate their learning. Actually, they will be learning to navigate the rest of their life.
Control
con·trol
[ kən trṓl ]
1. manage: to exercise power or authority over something
2. restrain or limit something: to limit or restrict somebody or something
My summer before college was once again filled with new beginnings. We moved into a handsome buttercup yellow house with a sprawling front porch in Morris Plains, New Jersey. The lush trees arching over the endless streets and the rolling hills were like a dream. I had never lived in such a beautiful fairy tale type place. Once again, I prayed that this would be the place of happiness for me.
The first months of college were surreal. I made friends, ate healthy, exercised, and enjoyed my nickname, Arizona Jen. This time was filled with so many new experiences: sorority sister trips to Manhattan, the Jersey shore and big Italian families. I would joke that I was the only non-Italian, non-Catholic student at Seton Hall. In my mind though, I started to notice there were many other qualities that set me apart.
My dad lost his job the same week I started college. The very job that had moved us across the entire country. The job that had changed my plans to attend college in Arizona. The job that payed for the house in New Jersey and the tuition for Seton Hall. My parents did not want me to quit school, despite my offer. The house was sold, my dad moved back to Phoenix for work, my mom stayed in a tiny apartment in Jersey with my two cats, and worked at a furniture store. There I was at college using up the money they were sacrificing for me to be happy.
My confidence began to spiral with guilt. This guilt lead to me feeling powerless over my future. I searched for something that gave me control. Food became that substance. I could control what went in and out of my body.
I would eat secretly in my dorm room and then vomit. This way, I could punish myself for not being perfect. Mean girls, bad grades, fears, moving, and not belonging all disappeared when I was in the midst of stuffing in food. Then the discomfort would be so great, that I had to get rid of what filled my stomach. After purging, I would loathe myself for what I had done. Each time, I prayed that tomorrow would be better. I would be healthy and happy. The thing that kept me hooked in this spiral was that it occupied my thoughts. It gave my mind an hour break from the insanity.
Lying became second nature for me. I had to hide what I ate and where I went after eating. This contradicted everything I was ever taught, but I felt that I had to. The binging and purging had become too demanding. I could not stop. Each moment in my day was consumed with thoughts of food, exercise, and how I needed to fix myself. It drove my every action and conversation. Soon, I became unable to maintain most of my friendships.
My freshman year of college finally came to an end. I needed a new start. A new start would make me healthy and happy again. My parents had already moved back to Arizona. God did give me a couple of friends that stuck with me despite my sickness. Perhaps they did not know about it, or maybe they liked me in spite of it. I am thankful these sorority sisters were the people that saw the good in me through the fog. They deserved a full time friend. I was not capable of being one.
After summer, I was very excited to start at the University of Arizona as I had originally planned. My high school friends had made new friends, pledged different sororities, and started new social groups without me. That was totally to be expected. Their lives were full and busy. I was happy for them, but sad we would not pick up where we left off in high school. So, sophomore year turned out to be much like the last.
I was in self-destruct mode. To make things worse, I started to control food by restricting my eating and using laxatives. I could live on bran flakes with water for breakfast and a frozen yogurt for lunch. But, that did not always feed my need to get the sickness out of my mind. I was trying hard not to throw up anymore. My mouth had sores in it, and my stomach ached all the time. I was always constipated and bloated. Laxatives seemed to be a good alternative. I figured that if I took a couple, my body would be purged of all the bad things. I would not have to throw up any more.
This seemed to be a good idea to me. I thought I would get better. Unfortunately, I did not. My body became more and more resistant to the laxatives, so I had to take more. Two laxative pills turned into ten, then twenty, thirty and more. I had to shop at different stores to keep people from noticing my disgusting habit. The large numbers of pills I was taking would keep me up at night, cause me to vomit, dehydrate, pass out, and miss out on activities because I had to be close to a bathroom.
My inability to manage my eating disorder culminated one night in the spring of my sophomore year. I felt I needed to take sixty laxatives in hopes that it would clean out all of my bad habits and thoughts. If it worked, the next day I would awaken to a new me and fresh start! Obviously, it did not work. My roommates had to take me to the university’s urgent care. I needed several bags of IV fluid to survive. At the end of the day, I was transported to the hospital, for what I thought was more IV. It turned out to be more than an IV. I was admitted to the psychiatric ward under the label of a suicide attempt. I did not think I was trying to end my life, just end all of the bad thoughts and habits. That is what I kept telling the doctors and nurses.
This place was awful! They took what few things I had away from me like my pencils, pens, shoe laces, and more. I had to sleep in a room with no door, next to a woman who cried out to non-existent people. Each morsel of food I did or did not eat was monitored. There were group therapy sessions and leather lacing. The lacing was not just a fun art activity. I think it was supposed to occupy my mind so that I could talk about my problems.
My parents called on the pay phone in the hallway soon after I was sent to the ward. They responded in opposite manners. My dad said he loved me, but did not understand. My mom was angry that I hid this from her and not asked for help. In my attempt to be the perfect daughter, I could have left my parents with no children. They must have been devastated. Cancer took my sister, and I was trying to end the life that God let me keep.
Lord, I am so ashamed by my disrespect for the body you gave me. This body is a temple. You made it specifically for me. You loved me so much that you even numbered the hairs on my head. Yet, I tortured and loathed it. Please forgive me. Let my future days be filled with honor and care for the gift of life you have given.
Shields
human (adj) having human form or attributes as opposed to those of animals or divine beings
Today, Piper and I walked at the train park to get her exercise before it was too hot. As I helped Piper meander up the play structure, a little girl looked at her, ran to her mom, and asked loudly, “Is it human?” This was a question I had never heard before. It took me off guard. As a parent of a child challenged with special needs, you learn to arm yourself with shields. Shields to deflect the stares or looks of pity. Shields to only hear the positive and drown out the words of people being thankful they have a “normal” child. Shields to stop the pain that pricks your heart each time you realize that life is harder and different for your child.
So after I put up my shields and quickly diverted Piper away from the area, I started to chuckle. This little girl had seen Piper’s enormous AFO’s (braces) that help her to walk steady, and focused on the metal and plastic. She could not see the inquisitive human girl inside. This is probably because there are currently many kid movies about robots living life like humans. She wondered if I walked my robot to the park!
I am blessed that my Piper is in human form. Some of that form is flawed and works slowly. But she has never known life to be different. Her struggle has always existed, and she has had to rely on her “robotic” aides to function. If we are honest with ourselves, we could realize that we are all in a flawed human form. We just put up our shields to hide the flaws, divert attention, and hear only what makes us feel good.
He has made many parts for our bodies and has put each part just where he wants it. What a strange thing a body would be if it had only one part! So he has made many parts, but still there is only one body. 1Corinthians 18-20
God picked each part of Piper when he was forming her. He picked each part of you when he was forming you. There is a reason we are all here. We each have a part or role that God plans us to play in the lives of others.
Currently, my back and arm parts give me the strength to assist Piper with her mobility. My brain part gives me the ability to help my struggling learners learn. My heart part helps me to understand the struggle some parents face and equip them with knowledge to help their struggling child. If I do not take down my shields, these God given gifts will be unused.
Perhaps, the little girl was able to glimpse the honest, flawed, intricate design Piper has from her divine being/creator. In the absence of a shield, she may have wondered if Piper could be a human.
Lord, please help me to embrace my flaws and not hide behind shields. I know there will be hurt and anger at times. Allow me to use those to become the person you created me to be. Amen.
Sand
sand [ sand ] 1. material made of tiny grains: a substance consisting of fine loose grains of rock or minerals, usually quartz fragments, found on beaches, in deserts, and in soil, sometimes used as a building material
My beginning was in 1972 and not my own for long. A sister came into the picture four years later. She was a spit-fire named Amanda. We grew up in Georgia with magnolia trees, humidity, and church. It seems like as long as I can remember, we were at church. Church on Sunday mornings, Sunday nights, Monday nights, Wednesday nights, and even Saturdays. This was our own safe world. I grew up knowing that God made me and loved me. My entire life I have never questioned that. I have questioned the path he chose for me, but not that I am his child. I thank my parents for raising me with faith and the ability to call on God at any moment.
Even though I had this understanding, my life was not perfect. There were always tiny grains of self-doubt. I often felt like an outsider. I tried to fade into the background in social situations, because I was an easy target to tease.
The summer before my seventh grade year, we moved to a rural suburb of Atlanta. My parents planned for us to transition from private school to public. This was culture shock for me. I knew almost no secular music, had always worn uniforms or dresses to school, and most of my class sizes had been less than fifteen.
I think I cried almost every day of my seventh grade year. The kids had all been together since kindergarten, and I did not look like a typical southern girl. Summer time had been filled with days at the pool and no sunscreen. I inherited the ability to become extremely tan from my Hungarian grandmother, so I started a new school looking quite brown. My eyes are dark brown and my dark hair had a fresh, stylish perm. So, I think the kids were not quite sure which group I should fit in to. The white kids thought I was black. The black kids thought I might be bi-racial but pretended not to be. It was 1985 in rural Georgia, so there were hightened racial tensions.
As the school year progressed, I made some friends and joined the Drama Club. The middle school plays allowed me to belong to a group, but it also gave others more ammuntion to tease me. Some of these incidents are still tucked away in the recesses of my mind. In the hallway one day, a group of girls put a price sticker on my back. One of them poked me and said, “Twenty-five cents? I wouldn’t pay twenty-five cents for you!” In class one day a boy told me I was the ugliest girl in the whole school. Another girl put a sign on my back that read, “Kick me, I am chunkarian!” I think she couldn’t spell Hungarian. Maybe all middle schoolers experience this kind of teasing. I pray that many do not.
My sister never encountered this. She was beautiful and funny. We could walk into any store and the clerks would notice her immediately. People were drawn to her. I regret that I was jealous. At that time I did not realize that I had many more years to command attention. Amanda did not.
Amanda was 10 years old when she went to Heaven. It had been a little over a year after she was diagnosed with a malignant brain tumor. That year was full of hospital stays for her and my parents. Our lives were turned upside down. No longer were we concerned with dance classes or slumber parties. It was all about chemotherapy appointments and blood cell counts. I watched my vibrant sister swell from steroids, scream in agony if anyone touched her, and then become excruciatingly thin. She looked like a little old man. We used to put on plays, dress up, giggle, swim, and play. My sister was fading, and nothing I said or did could bring her back.
My parents chose to bring her home when the doctors told them the cancer had spread. Amanda was in a hospital bed in the front room attached to an IV. Nurses would come to check on her daily. My parents, grandparents, and family friends would be at her bedside daily to pray and read her scriptures. She began to hallucinate from the medicine. She spoke of opening the door to let Jesus in and angels surrounding us. It was always apparent that she was a special child of God. Her heart was to pray for others before herself. She was amazingly strong. In her short ten years, she did more to bring others to the Lord than most of us will in our entire lives.
I was there when she took her last breath. It all happened so fast. She would gasp and then moments would pass before another gasp. Eventually, they ceased. The doctor came to pronounce her dead. The funeral home came to take her body. I was angered that they covered her with a sheet before she even left our house. My chance to say goodbye was gone. It was very surreal for me as a 14 year old. My heart was breaking, but I needed to be strong for my parents. I did not want to make them sadder. Why had God let Amanda die and not me?
Her funeral was called a celebration. It was filled with music and words of encouragement. One of the songs was “Angels all Around Me” by the Bill Gaither Trio.
The lyrics seemed so true. She always knew that she was surrounded with God’s love. Amanda was no longer in pain, had gone to be with Jesus, and was in a place where she could dance and twirl. My truth was that I was left on earth with no sister and alone. It was bizarre to see the faces of people in agony, streaming with tears. Why couldn’t I cry? Did that make me a bad person? It was just so strange to see a lifeless body in the casket. The feel of her waxy skin made me realize that the body was not my sister. It was only a shell. A shell that had housed her spirit. My ability to understand life and death started at that moment. God let me see that our bodies are only temporary. Our souls live eternally with Him.
I seemed to watch through a fog as the next months progressed. My freshman year of high school began and the kids at school were unsure of what to say to me. I could hear them whisper about my sister dying that summer, but most did not offer their sympathy. If they had, it would have been to say, “I am sorry.” To which I would probably have replied, “Why? You didn’t kill her.” Not a very nice reply, but it was my way of dealing with hidden pain. It took many years for me to be able to summarize my thoughts and feelings. I was angry deep down.
Lord, I miss Amanda every day. I wish she could have been at my wedding, at the birth of my children, and there to answer a phone call. We had conversations that never took place and games we never played. Sisters are supposed to be there for one another. I could not protect her from cancer. My life with her was too short. I wanted more time.
Words
In the 13 years of my daughter’s life, she has never spoken a word. Not one single word
Words [wûrdz] A sound or a combination of sounds, or its representation in writing or printing that symbolizes and communicates a meaning
People often ask me how we communicate with Piper. It is difficult to explain. She has no words, but will make high pitched squeals or short vowel sounds. Sometimes, it can sound like she is saying, “yeah” or “uh-uh”. Her facial expressions and tone of sound or cry can communicate her needs.
When Piper was younger, we tried to teach her sign language. She did not consistently understand the differences in each sign, so when asking for what she wanted, it was like watching the coach in a baseball game with arms waving, tummy patting, ear pulling, clapping, and chaos. She became very frustrated with us! Why could we not understand what she wanted?
Next we tried to give her “words” with picture cards and had her point to what she wanted. Piper became proficient at pointing to what she wanted and very good at pushing away the picture or item that she did not. Then the iPad came into our life. We loaded it with a communication program that we are slowly working to utilize on a daily basis. Piper will use it to request a certain food, tell me she “needs a break”, or let us know that she wants to go to school. The struggle is in her lack of motivation. She will use it to communicate if prompted, but not in a reliable manner. I often wonder if she finds it easier for us to anticipate her every need rather than struggle to translate thoughts into the push of a button.
It is quite an eye opener when you ask people to communicate without words. They struggle to make themselves heard when there is silence. Yet, their body language and facial expressions are so telling. We take for granted that we have a voice. We take for granted that we have words. We have the ability to choose positive or negative words, kind or hurtful words, uplifting or cutting words.
“A word of encouragement heals the one who receives it, but a deceitful word breaks the spirit.” Proverbs 15:4 The Voice
Perhaps God’s plan in blessing me with Piper is that I learn the truth about words. My girl has no words, but seems totally content in life and feels love. Why do I put my self-worth in approving words from others? Why do I seek words of affirmation to prove that I am worthy? My Holy Yoga journey is one of finding the quiet. I am working to find peace in myself and knowledge deep down in my soul that He loves me. God knows I am worthy. I will not have the right words or ability to speak life into others until I fully rely on my Lord. It’s time to shut my mouth and listen.
Lord, I am seeking to hear your words and plan for my life. My flesh focuses on my desire to hear Piper say a word or tell me that she loves me. Her life is a pure example of how I should live my life. I want to have happiness and joy because I have your Truth within as my foundation. Help me to grow. Amen.
Practice Hope 