It’s an honor to introduce you to Lita who’s sharing her unique journey through motherhood as part of our month-long guest post series, Special Mamas. Lita has four children. Her daughter, Abigail, was born with a medical condition called Arthrogryposis, as well as an “unknown neuromuscular disease that causes severe low muscle tone.” This is the first time Lita is sharing her story in written form. It is, of course, incredibly challenging to communicate a life-changing journey in just one short blog post, but Lita met the challenge with this marvelously honest, beautiful and hopeful post. Soak it all in. This is one special mama.
After twenty four hours of labor, and over six hours of pushing (yes, six!) I finally gave birth to my second child. Whereas our first born remained unnamed for two days in the hospital, this baby girl was named within minutes of birth. My husband proudly announced, “Abigail, which means my father’s joy.” They placed her on my stomach and I noticed the nervous glances of the nurses as they gently touched her outward-turned hands, bent wrists, and ramrod straight fingers. I had whispers of thoughts, but never voiced them: Was something wrong? Before words tumbled out, they whisked her off to the NICU.
The days that followed brought a whirlwind of nasal feeding tubes and struggles with feeding, but also a peace that was grounded. While I was holding her in the NICU when she was two days old, the visiting geneticist came and gave us a tentative diagnosis of an obscure condition and a bleak prognosis. We were shocked and numb. She handed us her business card as she left and we never heard from her again. For months afterwards, the memory of that experience generated frustration. Not only was this geneticist’s diagnosis wrong in the end, but even more upsetting was that she had dropped this bomb on us and walked away. Later, I realized that it is not unusual to be mad at the person who brings you the first devastating diagnosis. They get the brunt of your pent up anger at the crushing news. My countenance started to change imperceptibly with feelings of despair after this and comments made by our brusque pediatrician. My grounded peace from trusting in my Heavenly Father in those beginning days started to break apart and sift through the sieve of my neediness. The peace was replaced with a demanding and scared, “Help me NOW.”
The NICU was quite a distance from my floor and the nursing assistants would push me in the wheelchair (this recovery was more difficult than my previous c-section) until my last day when there was a shortage on the new shift. My new nurse told me pointedly to walk or wait until someone was available later. I cried out, “I can’t walk that far and my baby won’t be released until she can start nursing or learn to drink from a bottle. I need to get to the NICU for her next feeding!”
My tears were angry. I felt alone.
She begrudgingly deposited me at her bassinet way in the back past the medically fragile preemies. Once she saw Abigail, however, she decided to stick around. And hearing of my struggle with trying to nurse, she determined to get me help. She became my advocate, bringing in specialized help, and I was grateful. Asking for assistance and even firmly taking hold of what I needed for my baby was not wrong. I am a strong woman; this is what kept me from falling apart during those next few years. But the fear deep in my heart and lack of trust in God exposed my demanding orphan mentality instead of seeking what we needed from a place of rest and peace that is found in Christ.
Easter Sunday, we brought Abigail home when she was four days old and my husband had a pink stork sign pounded into the dirt in our front yard with her name, weight and birthdate, but no length. As I was with my little baby in our bedroom later that day, I heard a boy walking past our sign say to his mother, “Why don’t they have a length?” The Mom was puzzled and as they walked on, a lump formed in my throat. I hurt for my girl. See, her hands weren’t the only issues. Her hips and knees were in a flexed or bent position like a little baby still in the womb, but these fixed positions called contractures were so tight that they couldn’t get her length at birth. Also, her feet were turned in so that the soles of her feet faced each other. Club foot.
We were sent home with no splints (moldable plastic orthotics with velcro straps used to correct feet), but given the directive to bond with our baby before we started weekly castings (plaster) to help straighten out her feet. In between feedings, I would lie on the bed and stroke her face and sing how beautiful she was to me. Why, yes, Lionel Ritchie was pulled out from the 80s. But his simple words were a balm to my heart. When the next several weeks brought multiple appointments, tears, fighting tooth and nail with our insurance company to go out of network, more tears, therapy appointments, splints, round the clock nursing/pumping/bottle feeding, multiple plaster casts, my calm in the maelstrom was to lie down in the quiet moments, look into her eyes and bond with my little girl. It is so easy to be engulfed in this new world and miss the sweet moments of cuddling and loving on your baby. During these stressful first six weeks, we finally had a diagnosis of Arthrogryposis and an ‘unknown neuromuscular disease that causes severe low muscle tone’ and we were well on our way to entering this brave new world of having a child with special needs.
The neurologist said due to the creases on her palms, the pregnancy developed normally until an “insult” to my pregnancy at 18 weeks caused a disruption and yadda yadda yadda. All I heard was, “What did I do wrong?” If only I didn’t eat all that tunafish and drink tap water during my pregnancy. I wonder if it was the power lines hanging over our neighborhood that caused it. I was convinced she was “fearfully and wonderfully made” until something happened in my pregnancy that caused this disruption, because God is good and He wouldn’t do this to his child, would He?
My husband gave me a gem by Joni Eareckson Tada, When God Weeps: Why Our Sufferings Matter to the Almighty, which was a blessing as I mined the deep questions of my soul:
Is God good?
Is He Sovereign?
He was able to change the outcome.
He wasn’t surprised by her having Arthrogryposis.
It took a few years for my soul deep down to grasp this truth in all of its myriad of ways.
I went from thinking in those early weeks of her life that medical science can “fix” Arthrogryposis to the reality check given by one of her doctors: “Why are you concerned about her walking? What she needs is to work on transfers. Transferring from bed to wheelchair is what she needs for independent living.” The reality of a lifelong disability started to seep in. Devastating on one hand, it freed me from having any unrealistic expectations that would be dashed against the idol of normal. I started savoring God’s gentle mercies as everything new she did was an absolute gift and a surprise. God was very good to show us His amazing power throughout this time. The gospel came to life in a new way in our lives. The Lord used our struggles to refine our faith. My fist shaking took me on a journey of anger, sin, brokenness, redemption in the quiet recesses of my heart.
When she was very young we worked on getting her to hold her head up, which she finally did for a few seconds at twelve months. Next, sitting up with assistance and once that was mastered, scooting on her bottom to get around. Then, standing in a special contraption with full leg braces and a walker. Once that was conquered, she started taking a step or two while we were holding onto her the whole time. Around age four, she started walking with her long leg braces (KAFOs) with her knees locked straight. She had surpassed her therapists’ and doctors’ expectations. This unknown neuromuscular disease was not progressive like a dystrophy, and she was getting a bit stronger. She has a will to do whatever it is that she wants to do. Ice skating? No problem. Marching Band. She’s got it. Her will is formidable.
There is a beautiful story that is given to every special needs family after the birth of their baby. Well, maybe I exaggerate. I think it should be given out to every family. “Welcome to Holland” by Emily Perl Kingsley is the story of a planned trip to Italy, but somehow landing in Holland which is analogous to having a special needs child. When I read the line in the story where everyone else is busy going back and forth to Italy, it struck me: Why us? Why not any of my friends? How come everyone else has a few hiccups in their pregnancies and everything works out fine? Looking back at my childish response, I cringe as I know there are women who have a silent pain they bear of miscarriages, infertility and bearing children prematurely. My question has changed to “Why not us?”
We have come to appreciate the tulips of Holland more than the espressos of Italy. We know more of God’s goodness than we ever would have, a goodness that sometimes gives us what we would not ask for but nevertheless receive as a refining gift. And Abby is a delightful and thoughtful girl who blesses us in so many ways. Our flight was diverted that day over 16 years ago, but it landed just where it was supposed to.
Note to Readers: This is my perspective and never have I shared it in written form. It was incredibly difficult to condense it down to a blog post, but I couldn’t leave you without giving you some updates of my fabulous girl! Abby is hilarious, an intellectual and a foodie who is finishing up tenth grade. She enjoys Doctor Who, playing with a local school’s marching band and wishes she could travel more internationally! We are blessed beyond measure to be her parents. This isn’t just a nicety, but truth straight up!
Lita has been married to her loving husband, Justin, for almost twenty one years. They have four kids who range in age from 7 to 18 and the initials of their first names spell out the curious little name of her blog, www.JADEintheparke.com. She is shines in front of a group and loves to encourage. She welcomes you to come along for the ride on her blog at jadeintheparke.com and follow along on Instagram at @momtoJADE, Twitter at @momtoJADE and like their Facebook page at facebook.com/jadeintheparke.
This post is part of a month-long guest post series titled Special Mamas. The series runs all May and is in honor of moms who have unique journeys to and through motherhood. To read all 13 posts in the Special Mamas series, CLICK HERE and you’ll be directed to the introductory post. At the bottom of the post, you’ll find all guest posts listed and linked for easy reading!