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.

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 

piper tired

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.

 

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.

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Changing Direction

3DCB6BCC-8891-4C55-8A67-46EB480327A7As 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.

 

 

 

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.