- Posted June 20, 2014 by
This iReport is part of an assignment:
Raising a special needs child
Our Overwhelming Miracle
From the moment Camden came into this world, eleven weeks early, he has been overwhelming. He started out as a weak yet brave preemie, born to save my life. I just never knew to what lengths Camden would go to save not only me, but us all.
I was 29 weeks pregnant, and suffering from fungal pneumonia. Once I went into respiratory failure, Camden was evicted from his quiet womb in order to provide me with life-saving measures. A 3 pound angel who cried at birth, which I was told never happens.
We were told he could struggle. This was no surprise: I had been a special needs case worker and remembered the very first intake questions: gestation and birth story. I was always wondering the extent of his needs. Between the feeding issues and brain bleed, it would have been foolish to assume everything would be fine. Yet slowly things improved. Camden came home from the NICU in eight weeks.
The improvements we would note seemed to always be overshadowed by a lack of milestones met. Camden could not roll over, hold up his head, and failed every hearing test performed again and again. I blamed myself; if only I could have carried him longer.
Specialists and therapists continuously monitored Camden, smiling and waiting, always seeming to have an opinion but carefully censoring for a mommy hoping for the best. All the while, Camden's bright blue eyes were only outshined by his magical smile. The appointments and disappointment were mounting.
Finally at his first birthday, a chromosomal microarray was performed to help rule out genetic abnormalities. There were no cases of genetic conditions on either side of our families, but we needed answers.
I will never forget that day. I was teaching and my phone rang at recess. Camden's neurology office called to have us come in right away. I refused to wait for results. I told the nurse that he must call me today. After school, with my sweet miracle in the backseat, I drove through the conversation that changed everything and nothing. Camden had Pelizaeus-Merzbacher Disease. It was connatal, the worst form. The disease is degenerative, so today is the best he will ever be. It is an x-linked disorder, so as the mother I was responsible for giving it to him. There is no cure. It had nothing to do with being premature: even carried to term he would be exactly like this. PMD occurs in 1:500,000 births.
He was still the same Camden. He was a totally new Camden. There was relief in knowing. There was a part of him (and me) that died that day. It's like being pregnant and the veteran mothers constantly saying, "Your world will change once you see that baby." You don't get it until you experience it. That's a secret only us special needs parents know: the pain we exclusively feel is rivaled with a love and happiness you could never imagine.
Camden was diagnosed at 13 months. He is now 3. I have learned that doctors are helpful, but not fortune tellers. We were told by experts he would never walk or talk. He says mama and is crawling. Our time is precious and our days are long. He is, at times, difficult to feed and bathe. Many people get caught up in the trials of caretaking, which are certainly great. Those are not my fears. How do I execute the wishes of a child who cannot speak? How will he make friends? What if schools don't meet his needs? When did I become the person for such a task? How will I ever recover when I lose him forever? At times I get lost in these questions.
Once I get lost in this sea of overwhelming truths, I hear his laugh. I watch him yearn to climb the steps to his room, or I notice him laugh at a joke. Camden has a good life, and enjoys each day with a positive outlook and a strength I have only known in him. He smiles, I see his magic, and I am overwhelmed by my love for him. He has brought so many special people into our lives, provided so many opportunities for us to help others. Only special needs parents get these moments of great joy, and all because of kids like my miracle: my magic Camden.
- My life