Thursday, March 02, 2017

The Mysterious Gift of Special Needs.

I was always afraid of having a child with special needs. 

I might have been 11 or 12.  I remember looking into the eyes of a little boy I watched at a summer camp called Helping Hands. He was beautiful- Sweet boy. Wonderful smile. And completely blind.

I looked around the camp and saw children with all sorts of disabilities around me. Wheelchairs. Orthotics. Unable to talk. Unable to hold their bodies upright.

And fear gripped my heart.

I remember being afraid of what I couldn't understand.

My Mom taught preschool children with special needs for a while and later taught children with Autism. I was always in awe of her tenderness and gentleness with her students. Sometimes students would scratch her, kick her, bite her, lash out at her. My Mom was a saint. Kind, compassionate, patient. I could never be like that.

I knew I didn't have what it took to take care of a kid with special needs. 

I was pregnant with my second baby. We didn't know if it was going to be a boy or a girl. I was so excited. My Libby girl was only 14 months old... and she was going to be a big sister!

But then it all went wrong. Pre-term labor began at 26 weeks. Far too early. They kept stopping my labor. Holding me off. Injecting me with steroids to help develop the baby's lungs. And yet the contractions never went away completely. I was having on average between 3-4 contractions every hour. And then my baby finally arrived. Samuel came at 30 weeks. He needed to be intubated. And I was terrified. I was terrified of losing him. I wasn't afraid of the machines. I was scared of not having him.

Samuel had to have oxygen for the first 6 months of life. He nearly died at 7 months. Code blue. Emergency intubation. Helivaced from PA to Dupont Children's Hospital in Delaware. Pins and needles as we wondered if our son would make it. Cardiac surgery and tracheotomy was in question. Thankfully after 2 weeks in the ICU he was able to successfully be extubated. Pneumonia. Bronchitis. Asthma. Reactive Airway Disease. Chronic Lung Disease. Samuel's 10th hospitalization occurred on his second birthday.

Samuel needed inhalers, nebulizers, allergy medications, oxygen. He would need oral steroids and have to go to the ER for oxygen and breathing treatments. He would get pneumonia and ear infections and RSV and bronchitis. Tracheomalacia and laryngomalacia. He was always sick. Always coughing. Always working to breathe. I still remember the sound of his perpetual wheeze.

Libby was only 3 and Samuel just 2, when I experienced the traumatic birth of my twins. My c-section went horribly wrong when I could lift my legs off the table and they weren't finished with my surgery.

It was such an intense labor and delivery. I had been laboring  for a long time waiting for my husband, Mike, to get to me. He was a graduate student at Westminster Theological Seminary in Philadelphia and I had recently relocated with Libby and Samuel to VA to have the support of family while I was on bedrest. He was racing to get to me as quickly as possible. As soon as Mike arrived he donned scrubs and prepped for the arrival of our twin boys.

Unfortunately our anesthesiologist was not the best. The spinal block ended up wearing off mid-surgery. She had not given me enough. And I could feel them pushing my intestines around. It was torturous and traumatic. I screamed... out loud...for a long time.

I believe I scarred my husband for life.

I vaguely remember the boys being whisked away... and being left alone. Later the doctor coming in and telling me that I had a very sick baby. The baby didn't get oxygen to the brain.... only time will tell. Our son also had a cleft palate and there were other issues they were concerned with. I felt crushed. Like the world was caving in on me.

I remember my overly exhausted husband lay asleep on the pathetic make-shift bed in the hospital room as I lay awake crying, fearing what would happen to my precious son. It was only when Mike awoke that he was able to comfort me that our son wasn't necessarily dying. I thought we had received a death sentence. Hormones. Exhaustion. And a surgery gone wrong causing horrific pain. Bad and unclear explanation thrown on top of having my first c-section and of course I had assumed the worst... that he would die. Thankful to understand our son would likely live but have special needs.

Within the year after his birth it was confirmed Michael had cerebral palsy.*

So here I am... not just one... but two children with special needs. 

Early intervention. Speech therapy. Occupation therapy. Physical therapy. Oxygen tanks and apnea monitors. Feeding tubes. Wheel chairs. Cranial shaping helmets. Orthotics. Doctors offices. Specialists. Cardiologists. Neurologists. ENT. Plastic Surgery. Geneticists. Pulmonologists. 

I remember though, as I went to specialist after specialist appointment, passing the Oncology Clinic and thinking to myself.... "Well, at least we don't have a child with cancer...."

Oh the irony.

And then Samuel, at age 4, having cancer. And in came the oncologist. Radiologist. And living in the children's hospital. 15 months of chemo. 6 weeks of radiation. Another child on a feeding tube. Daily injections. Inability to walk. Bowed legs. Screaming pain. CVL lines. Biopsy. Draining lungs. Suprapubic tube.

I say all this not to put fear in your heart... but to testify that God can take you through things in your life... things that you are afraid of... and bring you to the other side. He provides grace, peace and strength for each moment. 

Was it hell at times? Absolutely. 

Did I want to give up in some moments? Of course.

But God has sustained and carried us through. 

Moment by Moment. Minute by Minute. Hour after Hour. Day after Day. Week after week. Month after Month. Year after Year.

God is faithful. He always has been. He always will be. 
He's given me a hope deeper than I've ever known. 
He's given me joy that I can trust Him in my pain and with my pain. 
He's given me peace that never once have I ever walked alone.

All my children are gifts from God. I'm blessed beyond what I could imagine. I'm the luckiest Mama in the whole world.

Some days are easier than others.

We've come so far and I've been blessed with a friend who showed me how the power of nutrition could change the health of my family. My kids are now off all medications. No more asthma or allergy medications. No more oral steroids or hospitalizations or ER visits for oxygen.

 I'm incredibly thankful to say that all in all my kids are healthy. They've come farther than expected, even exceeding doctors expectations.

But the true miracle for me is what God did in my heart. He gave me something I was afraid of... and He used it for my good!





*The cause of Cerebral Palsy is a brain injury or brain malformation that occurs while the brain is developing — before, during, or after birth. As a result of the brain damage during brain development a child’s muscle control, muscle coordination, muscle tone, reflex, posture and balance can be affected. It can also impact a child’s fine motor skills, gross motor skills, and oral motor functioning.

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