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.

 

 

 

Saving Our Turtles (Children)

sea turtle hatchlings

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

candle

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.

 

No Diagnosis Drama

drama-faces-clipart-1.jpg

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

Made by Samsung DVC

[ 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.