I've been thinking a lot lately about how life threw us a curve ball. One that we didn't have any choice but to accept and I have definitely come to terms with it, but have been reflecting on life a lot lately. This blog isn't to bring pity to our family, it's more sharing awareness and how life has changed, sometimes for the better, and sometimes for the worse.
My reflection started when I had someone contact me recently to connect with another mother who was having a difficult time accepting her new role as a special needs parent. It is extremely hard to take on this role. You're thrown into it without having the chance to look back. No time to think, only time to act. I shared with her what I thought to be very valuable information and assured her that life would get better. Not easier, but better. I shared the story of traveling to Holland, which helped me in many ways accept the life I've been given. I've had time to reflect on my trip to Holland recently....
You see, I didn't CHOOSE to become a stay-at-home mother. I was FORCED to become one. I enjoyed my job, the interaction with adults, and the daily routine of going to work. Of course, it did seem appealing...getting up and drinking my coffee, watching GMA while my kids hapily played, getting laundry done, playing blisfully in the backyard, making wholesome meals, until my little Emily entered the world. Our first few months were spent weekly back and forth at the hospital getting heart checks, thyroid checks, and advice from feeding specialists for my little low-toned, floppy air-way, slow eater. Now, life is filled with constant trips back and forth to therapy. We see four different therapists along with an Early Interventionist and a handful of specialty doctors including feeding specialists, endochronologists, cardiologists, and doctors specalizing in children diagnised with Down syndrome. It's hectic.
When I thought of the life of a stay-at-home mom, I assumed I'd be able to attend all school functions for my children, happily drop them off at carpool and be about my day cleaning and primping. I have yet to attend a single PTA meeting for either child, or participate in a school function this year. You see, my children attend two different preschools. Not by choice, but again, by force. Lilly's school would not accept Emily into their program, they were not "equipped" with the staff or means to provide for her. She is absolutely NO different than any other typical child right now. She stands, creeps, crawls at the speed of light, eats like a horse, rambles and defies...shes "normal". I began my role of child advocate right then and there, finding a school that would accept Emily and everything that came along with her. I could not be happier with her placement and plan on switching Lilly next year. Lilly's school needs education about children with special needs. I understand them not wanting to take children with special needs, but before they turn one down, perhaps they do a little research into that child's particular diagnosis before saying "no!".
A life with a special needs child is spent on the telephone 50% of the time. Rescheduling therapies, calling for an IFSP update, aruging with insurance, Medicaid, HIPP and various other providers. After teaching, I was thrown from teacher lingo to special needs lingo. PT, OT, SLP, SMOs, HIPP, IFSP, ECHO, Free T4, TSH. The typical mother wouldn't know what these mean, yet I've learned them all in my last two years (any many more!). My child has had an unhealthy amount of x-rays, blood transfusions, ultrasounds, and ECHOs, yet there is one damn thing I can do about it. It's part of her life, my life, our life.
While at the beach, I had a lady, who happens to be a home-health nurse ask me Emily's age. I happily stated that she was 22 months old. The next comment out of her mouth regarded walking, and why she wasn't. I explained that she had Down syndrome and most milestones came later than that of a typical child. My "Mongoloid" as she stated, looked beautiful. She didn't understand why we had prenatal testing, and my only reply was that "knowledge is power". It has nothing to do with my religious beliefs, nothing to do with terminating a pregnancy, but everything to do with how our delivery would carry out and the appropriate steps that would be taken during Emily's first few hours of life. My explination ended with a "have a good day" and my reflection into her narrow-mindedness. Mongoloid is a term used for those with DS back in the early 1900s. It is no longer an appropriate word to use and is for lack of better words, extinct, from all medical research. I also didn't have to have an amnio (which she gawked at) because there are many, many more new non-invasive blood tests used to determine genetic anomilies. This promopted more of my reflection. Knowledge is power...
Emily is joy, blessing, mystery, and the light of our lives. She has opened our eyes, made us think twice about everything we do and given us a new purpose to life. She has paved way for a new path that we must take, one that is mighty different than expected, but one that has made us "up for the challenge". I challenge you to be kind to those families of special needs children. Take a minute to step into their worlds. If they turn down a playdate or date night, it's mostly due to sheer exhaustion. Maybe their child has had 4 viles of blood drawn that day, gone through an hour if rigorous therapy, or just plain had a tired day...be kind, accepting, and willing to work with them, because life is a different path for us all.
