Miracle Monday: So Much Worth

I feel like the Lord prepared me years in advance for my daughter, Paige.

I found out in the delivery room that our daughter Paige was born with Trisomy 21, three copies of the 21st chromosome – She had Down Syndrome. But my journey with the special needs community had been developing for years before that day.
 
Growing up, one of my best friend’s mom was the Special Education teacher at the school I attended (Manhattan Christian School).  My Sophomore year of High School, I tried to load up on Study Hall classes – and of course was told, “uh NO – You need to find something else to do”.

One of the options given to me was to be a TA (Teacher’s Assistant), and I wanted to work with someone I knew, so my friend’s mom, Mrs. Dyk, accepted me as an assistant in the school's resource room. For the next three years of high school I had the opportunity to work with younger students for one class period a day.  It was such a great experience. I was looking back at my senior year book, and the answer to the question, “What is your Career Path?” I responded, “I’m going to be a Special Education Teacher”.

However, in college, I realized what a specialized field that would be and so I chose a broader career path. I ended up majoring in general Education with a Middle School emphasis. After college graduation I came back home to Manhattan, got married and applied for local teaching jobs. Come August I still did not have a teaching position lined up.
One day I ran into Mrs. Dyk and she asked if I had a teaching job yet? “No”, I said. I really had no plan for the fall.
“Well, how about coming and working with me in the Special Education room and being a Para” (a teacher that works specifically with the kids).  

I took the job and got to experience the joy of watching students flourish under the unique and specialized instruction of Mrs. Dyk. For the next 4 years I worked with children at various levels of ability between mild learning disabilities to more complex disabilities including down syndrome.  I got to really grasp the needs and support that could be provided to these students. Their ability to grasp concepts and to enrich the overall community in the school was a blessing to witness. Their presence in our classroom and in their typical classrooms helped the community as a whole come to appreciate so many aspects of God’s created design and call to community.
 
I loved my job, but there were some days that were really hard, and I thought of the parents and families of these children, “How can you do this all day?” “This has to be exhausting!”
Yes, God was preparing me for something bigger than I could have planned.  I worked right up to the time that Paige was born.

During my pregnancy there were no clear signs of Paige’s condition. None of the ultrasounds pointed to anything irregular.  It wasn’t until after I had delivered, that our doctor came in and said, “We think she might have Down Syndrome”.

You know, Sometimes, a miracle doesn’t happen in an instant, God planted those miracle seeds years and years prior.  Because of the experience I had working with children that have DS, I had a better frame of reference.  Children with special needs are actually far more alike with their peers than they are different.  However, from our human perspective, we’re so quick to pick up on those “differences”.

I was blessed to know on the education end all the things Paige would be able to do: The life skills and physical abilities, and the therapies and equipment available.  I felt I had a small glimpse into what this new future would hold, at least through school years. But I wasn’t prepared for some of the medical complications and needs that would be involved with having a child with special needs.

Two immediate concerns of the doctors were heart and digestive health. Immediate meaning that the doctors needed to get a look at her heart within hours of birth.  Thanks to technology and the quick response of the medical team we had a definitive answer within 3 hours of birth. Paige’s heart had 2 small defects that didn’t require immediate action and her digestive system was fine. We were all able to stay together in Bozeman.

Just when we thought we had a grasp on Paige, life, therapies, and progress we were about to find out otherwise. We can only control so much, but there are still some things that are completely out of our control.  In 2016 we were signing Paige up for Eagle Mount (a fantastic organization) for their equine program, and they asked, “Have you checked her spine for instability?”

We had never heard of that before.  Turns out that individuals with Down Syndrome can have an anatomical difference in their spine formation.  Their top vertebrae is not connected to the other vertebrates as it should be – So it is a kind of “free floating” ring around the spinal cord.  The danger is it may jar forward and close the channel that the spinal cord is in.  If she were in a situation that would “whip” her head suddenly it could damage, bruise or have contact with the spinal cord and damage it.
 
Now we were on the way to Seattle Children’s Hospital to have spinal fusion surgery at the ripe old age of 4.  The day of surgery, I had never felt so prayed over and cared for.  I had friends and family all across the United States and even in Holland (that’s the Dutch community for you) that were praying for us and lifting Paige up to the Throne of Grace.  We had no sense of dread or doom, just this feeling of being “upheld”.

The complex surgery could go up to 7 hours.  We had nothing to do but sit in the waiting area with other parents watching the surgical screen for updates.  We had barely gotten settled into our spot, when we saw that Paige had been moved from Surgery to Recovery.  The surgical team finished in 3 hours. Praise God!

Our biggest concern post-surgery was the possibility that Paige would resist wearing the C-Collar that would keep her neck secure.  Once she woke up it turned out that she didn’t mind at all – it was like a security blanket. She smiled, and played, and the recovery time seemed to fly by. Since then Paige has been cleared for all normal activity levels.
 
Having Paige has taught us patience, unconditional love, and that I don’t need to “push” her to achieve certain benchmarks in emotional or educational areas.  Those will come with consistent encouragement and support.
 
We have been so blessed to have a support system from the very beginning.  D.R.E.A.M. (Down Syndrome Research Education Advocacy for Montana), Eagle Mount, Special Education programs at her school Monforton, Montana Ballet Company’s adaptive dance class, Family Outreach and our local church.  

Paige LOVES jumping on trampoline, dancing in front of a mirror, (hit-or-miss on riding horses), school at Monforton, playing with her little sister and singing at church. When the pastor closes the service with the Benediction and the congregation says, “amen”, Paige will wait for everyone to finish and shout out, “AMEN!” She is one of the sweetest and unexpected amens in our life.
 
If you remember nothing else from my story: God made me one of the “Lucky Few”.  I have a daughter with Down Syndrome and we have a bright, blessed future filled with “So Much Worth”.

My name is Ashely Fountaine, and this is just one of my Miracle Stories.

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