It is so cliché to say that it seems just like yesterday we were driving to the hospital to have Madison but that’s exactly what it seems like. In looking back on June 8, 2010, I remember such an overwhelming sense of excitement as we anticipated Madison’s arrival. Somehow I managed to push all my worries and anxiety over Madison’s Spina Bifida to the back of my mind that day. I was just too excited to be giving birth and meeting for the first time the person who was going to change my life. The countless doctors’ appointments, diagnostic tests, ultrasounds, and discussions we had endured in the nearly 7 months prior to Madison’s birth had escaped my mind that day, at least for a little while. Amazing how something we had been so fixated on and had so much anxiety over could disappear so quickly. But I woke up that morning and prepared myself to welcome our first child into the world just like any parent would, with no regard for what would happen after Madison arrived. In retrospect, I consider that a gift from God that He would allow me to experience Madison’s birth the way I did and clear my mind long enough for me to enjoy that time and have such joy and peace in my heart.
In the past twelve months since Madison’s birth, I certainly have never lost my joy over Madison or what a gift she is, but I am human and I have struggled, wrestled, and fought to overcome the intense waves of emotion I have experienced as a mother of a child with special needs. Most of my days as Madison’s mommy are great days- days when I enjoy every minute with her, go through our daily routines, and say my prayer of thanksgiving for her each night as we lay her down to sleep. Those are great days. But there are days, dark days, when I feel defeated and frustrated that we are living this life with a child the world will always label as different, disabled, special. I am ashamed to admit these days still creep up on me but I am just being honest. I will forever in my heart grieve over the challenges she will face and hardships she will have to endure. Unless you are a parent of a child with any kind of exceptional need, you will never know what it is like to spend countless hours trying to teach your child to do the simplest of tasks that everyone else’s children can do without any effort. Nor will you feel the anguish I have felt when I watch opportunities and experiences pass my child by because she cannot participate. Madison has the most beautiful smile and sweetest spirit that some will never take the time to see because they won’t see past her disability. Already in her first year, I am physically and emotionally exhausted from all the doctors’ visits, therapy sessions, and workouts I’ve had to take Madison to and put her through. I just wanted to have a child, be a mommy and that be that. But instead I’ve watched my baby endure two huge surgeries, hospitalizations, struggle to achieve the most basic of physical functions, and miss most of her developmental milestones. Madison still cannot sit without assistance nor can she crawl, pull up, or stand. What is probably more frustrating about this is that I simply have to accept it as part of her disability when I know that if it weren’t for her Spina Bifida she could do all of these things and more. It’s enough to drive me crazy if I let it. Ultimately, one of the biggest things I’m struggling with today, on Madison’s 1st birthday, is that the challenges have not diminished- they’ve just changed. I couldn’t help but notice that at 10:22 a.m. on June 8th last year, Madison was entering the world and a year later on June 8th at 10:22 a.m. she was at physical therapy strapped into a contraption designed to help her stand. I so desperately desire for Madison to make improvements and just once for her to be right on track, not behind. Just once to be challenge-free, just for a while to not have special needs. This is of course, selfish talk, but I can’t help it. Over a year after her diagnosis I’m still trying to cope with it all. Sometimes I just cry out, “Lord, why won’t you give my baby the strength to stand?!?!? Why must she be behind?!?!?” After all of these thoughts I instantly feel ashamed for complaining and guilty for not treasuring all the wonderful qualities Madison does possess. I also am immediately reminded of the verse from Jeremiah 29:11 that I know well, “For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.” God has a perfect plan for why I have endured and will continue to experience all these emotions surrounding Madison’s special needs but this verse also appeals to my motherhood. This verse also tells me that my child is so important to her Creator that He has already made plans for her special life, and that she has a future full of hope in those plans. That is so comforting to me and helps me reign in my emotions when I am tempted to wallow in the pit of despair I often create for myself.
Though I struggle to live out these plans God has set before me and my daughter, there is one thing I will never doubt nor ever forget about Madison Grace- she is a miracle. Someone once heard me refer to Madison as a miracle baby and asked me why she was. See if this qualifies as miraculous to you. Spina Bifida lesions that develop on the spine typically affect the area at the lesion and below it, usually resulting in paralysis from there down. Madison’s lesion was at the L5/S1 area of her spine, the lowest part. We were told to expect no leg movement, coordination, or feeling in Madison’s legs. Minutes after she was born and was being wheeled to the NICU, Madison’s isolette made a stop in the waiting room for family and friends to see her for the first time. They cried as they saw the blanket move when Madison kicked her little legs for the first time as if she was demonstrating that she was ok- she had overcome the doctors’ prognosis- she was not paralyzed. She also has been given a clean bill of health from her urologist who said she has the kidneys and bladder of a normal baby, unlike many children with Spina Bifida who have issues well into adulthood. For now, Madison requires no catheterization and appears to have no incontinence issues. At therapy three weeks ago, Madison pushed herself up onto her knees from a seated position, a skill which her therapist said means she has high level muscle function that is not typical of a child with Spina Bifida. All of those things combined with the fact that Madison is a sharp, extremely social, doesn’t miss a thing kind of girl demonstrates to me that God performed a miracle in Madison. She shouldn’t be able to move like she does. She’s not supposed to be off a cath schedule. She’s not supposed to be communicating and playing like she does. Spina Bifida should have created physical and cognitive challenges that Madison could not overcome. But she has. This picture below is one of my favorites we have ever taken of Madison.
It paraphrases Psalm 77:14- which is in small print under the text-which says, “You are the God who works wonders; You have made known Your strength among the peoples.” Is Madison not the epitome of this verse?!?!? Dustin and I, nor the many doctors, therapists, or special equipment are responsible for Madison’s miraculous outcomes. “Praise be to the LORD God, the God of Israel, who alone does marvelous deeds” Psalm 72:18. So, even though I struggle as I described earlier, I never forget that Madison has made tremendous progress and that God is still working on her.
Having said all of that, I must move on to what you were probably expecting to read in this birthday post- the good, fun, happy things. Side note- I am going to post her 1st birthday party pics separately from this entry. Some of you that read this blog have never met Madison and may never meet her. The rest of you know Madison but don’t get to interact with her like Mommy and Daddy do and therefore do not fully know the extent of her preciousness. The first year of Madison’s life has been nothing short of life-changing for us. We fell in love with her instantly upon meeting her and that love grows stronger every day. Her smiles at first were involuntary. Now, she beams at the sight of Mommy and Daddy and I swear there is no greater feeling than knowing I make my daughter happy. She reaches out for me and is calmed by my singing, my touch, and my embrace. She loves it when I flip my head up while drying my hair upside down so much that she squeals with delight. Madison, unfortunately, loves it when anyone drops anything or gets hurt. She laughs at the mention of the words “uh-oh” and she chuckles when she burps or toots (which she gets from her Daddy for sure!). Madison loves music and loves to be sung to which I am most happy to do for her. I’ve watched her develop quite the little personality over the past year which is partly mischievous, perfectly adorable, and particularly funny. She loves to be the center of attention, she NEVER misses a thing, and she is always on her best behavior, no kidding. The title of world’s best snuggler no longer belongs to Dustin as Madison has taken over in that area. She yanks her bows out of her hair now and her feet touch the back seat when she rides in the car- both signs that my baby is turning into a big girl. The things I love most about Madison being 1 are:
1. She can hold her own sippy cup and feed herself with it.
2. Laughter is contagious for Madison- she laughs in response to our laughter.
3. She understands the tone of my voice, whether it be stern or playful.
4. I no longer have to take her car seat into restaurants. She’s a big girl who can sit in her hook-on high chair.
5. She finds enjoyment in toys and books and it’s precious to watch.
6. Table food and whole milk have replaced homemade baby food and horribly expensive formula. AND
7. Madison loves to gab and makes all kinds of noises. I love a girl who loves to be social!
The things I love about Madison that have not changed over her first year are:
1. She wakes up happy every morning.
2. Tummy time is still Madison’s #1 enemy. It’s almost funny to watch her face turn angry when she realizes she’s being put on her tummy time mat.
3. Madison is all about routine- whether it be feeding, bathing, bedtime, etc. She has a schedule and she sticks to it like no other. She is definitely my child.
4. She still has lots of hair. Except now it’s getting curly in the back and on the sides. Dustin gets credit for the curls.
5. My heart flutters every time she smiles.
Madison has given me joy that I did not know existed until she came into my life. I don’t know how I lived without her all the years before she was born. Daily she teaches me great lessons in patience and love. In my first year as Madison’s mommy I have learned that God is in control, not me; my circumstances are of God’s design (Ephesians 1:11-12). All of these trials associated with Madison and her seemingly imperfect body serve a purpose. I have learned that being Madison’s mommy is the greatest job and most awesome task God has ever set before me- it is what I was born to do. I simply cannot imagine what God has in store for Madison as she embarks on her second year. I pray it brings strength, and growth, and breakthroughs for her. I pray God continues to break down my stubbornness and desire to control the circumstances that are truly beyond my control. Most of all I pray that her life bring glory to the One who created her. I can’t wait to see how the Lord will continue to grow Madison into the most amazing little girl He has planned for her to be. I’m just so blessed to be a part of her life and His plan for her.
I’ll end with some credits, so-to-speak, people and things Dustin and I are most thankful for over this past year of Madison’s life. These were part of the video tribute Dustin and I made for Madison recapping her first year.
Special Thanks To:
-Dr. Paige Gernt
-Vanderbilt University Medical Center
-Junior League Center for Advanced Maternal Fetal Medicine
-modern medical technology
-Dr. Bennett
-Dr. Tulipan
-health insurance (although we still owe a ton)
-Goodyear tires and Stella (our Toyota Camry)- for safely getting us to and from Nashville for our many trips to Vanderbilt
-the manufacturers of headbands and hair bows
-our trusty food processor- for holding up through all the baby food-making
-the people who read and/or stalked our blog
-the many people who prayed for our family
-our church family and our CIC lifegroup family of Stevens Street Baptist Church
-our family and friends
-our parents who always loved, encouraged, and supported us whenever we needed it over the past year and a half
-God- His grace and mercy never ceases to amaze us- Madison is a good and perfect gift from Him- Thank you, Lord for Madison Grace
Til next time,
~Mandy, Mommy of a 1-year old
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