It was going to be my dream job.
I was prepared. We had a cradle, clothes, crib, carseat and diapers. Even though labor had been 36 hours long and I was exhausted, I was thrilled to be a mother. Never mind the weird tongue thing he was doing, or the spastic movements. Never mind he couldn't breastfeed (he'll catch on eventually). Never mind the huge bruise in the middle of his forehead (should I be worried?). I had my precious baby, and he was perfect. Blond peach fuzz hair, big brown eyes, fat little hands and rosy cheeks. He was beautiful.
I didn't really know things were a little off kilter until my first son, Isaac, was about a year old. He wasn't talking, walking, had just barely learned to crawl, wouldn't sleep during the day, and choked on food constantly. I had been concerned at 4 months when all emotions seemed to shut down. He didn't smile, didn't babble, took longer and longer to respond to us playing with him. He was constantly sick, and had constant ear infections. Back then, when the internet was booming with information and baby boards, I mentioned my concerns that Isaac wasn't hitting his milestones like all the other babies. Imagine my defeat when one of the responses to my questions was, "I feel sorry for your son because YOU are comparing him to all the other kids and won't let him be an individual." Since the doctors didn't seem concerned when I brought this stuff up to them, I thought maybe I was being an overly concerned first time mother. At 13 months old they put tubes in his ears to clear up the constant infections. About a month later he started walking, but by 18 months he still wasn't talking. Again, nobody seemed very concerned. We just kept living life. 15 years later that comment is still with me. Sometimes I have a bit of pride with it, as in, I'm glad I continued to push and recognize that Isaac was delayed because we eventually had therapies and answers we wouldn't have gotten had I dumbly cowered away. Another favorite: "He doesn't LOOK like there's anything wrong with him." I found myself envying parents that had severely disabled kids, wheelchairs, feeding tubes, tracheotomies, and missing limbs, because at least people KNEW their kids were disabled and no explanation was needed. Parenting kids like this skewers your thinking. Nothing seems rational or logical. You don't always have the answer why (which drives me batty). You start to loose patience, and then you isolate yourself. There are always worse stories than your own, but then you feel guilty because you actually said, "Well, things could be worse."
Eventually we added six more kids to our family, and along the way, faced so many other challenges with Isaac, and eventually, some of our other kids. As diagnoses poured in, we kept on going, adapting, moving, trying out some new things and some old things. Our list grew:
ADHD
Low Immune System (constant RSV, pneumonia, bronchitis, pleurisy, and sinus infections)
Autism
Aspergers
Oppositional Defiant Disorder
Schizophrenia, Bipolar, Depression, Anxiety (some dismissed, some added)
Traumatic Brain Injury (6)
Allergies (medication and foods)
Learning Disabilities
Processing Disorders
Cognitive Disorders-not otherwise specified
Sensory Integration Disorder
Dyslexia
Pectus Excavatum (and corrective surgery: NUSS procedure)
Ear Tubes
Cerebral Palsy
Nerve Damage (birth, brain injury)
Skull, Arm, Leg, and Finger fractures
and finally, 22q11.2 Duplication (Genetics! Haven't been there yet!)
We had CPS called on us 3 times. Each of the cases were dropped because they recognized the medical issues and where we were at for getting treatment for the kids. I tried to be understanding, and CPS social workers were understanding, and that is when I realized that we don't live a normal life. We live a different life.
While most of my friends are living out their dream in Italy, I have arrived in Holland. It's still a beautiful place, yes, but it's not what I expected, and it is just different. It took us 15 years to get a final diagnosis on Isaac. 22q11.2 Duplication.
Except 22q11.2 Duplication is so rare, so new, it doesn't even have a name yet.
My motherhood is exhausting, relentless, and honestly, very far removed from what I expected motherhood to be like. I still love it. I'm so very grateful for the kids that have come into our family. In the good moments, our life is beautiful and fun and happy. In the bad moments, our life is medications, doctors, meltdowns, yelling, and overwhelming. In the quiet moments, I have clarity and assurance that these are the kids meant for us, that me as their mother and they as my kids could not have been matched any better way.
In between all this, we live the normal life: laundry, dishes, meals, cleaning, clogged toilets, doing homework, running errands. Our future isn't so clear anymore. My boys may not graduate at 18, they won't serve traditional church missions, they may not live independently. So, we just live day to day, because that is predictable, that is sure, that is comfortable.
Even after all this, Motherhood is still my dream job.
Welcome to my blog. I would love to hear your stories too! Thanks for reading!
