Yesterday I had the rare treat of getting to go to lunch with two other special needs moms. We had a long lunch spending a couple hours discussing all topics relating to our children - comparing notes about therapies, Medicaid denials, nursing, respite, diets, medications, doctors... lots of topics that most parents don't have to think twice about. As we spent the afternoon together having lunch and walking the local mall we discussed how unpopular we are as special needs parents with government agencies, public school systems, doctors that don't listen, nurses that steal drugs, respite care providers gone bad, medicaid denials gone both good and bad and the fight that follows, therapists that road block you from pursuing avenues that would improve your child's quality of life. And the most well seasoned mom out of the three of us, said the most powerful thing today. Turn your tears into re-directed energy. Think about how you can make that person or group that is causing you to cry to have a very bad day. Sweet revenge in a sense with comes finding a way around them. So what you tell me no... I will find someone that says yes... that says yes to helping my child with open arms. In our time together I realized that the three of us in our own individual ways are some of the strongest, and most powerful advocates you could ever begin to imagine. We have fierce drives and incredible profound love, that makes us so powerful even on the hardest of days. We are like the energizer bunny... we keep going and going and going for our children. You can try to knock us down, but we'll get up each and every time and figure out how to advocate for the needs of our children. Inevitably I feel sorry for those who think they'll stand in our way. Eventually you will lose. The odds are not in your favor. We have a fire like no other. God made us fighters to go the distance.
Yesterday I drafted the strongest appeals letter I could write for Noah's most recent Medicaid denial, a pediatric crawling device - deemed "Not a medical necessity" even after being recommended by a physician and a therapist. Now I wait for my telephone hearing before and Administrative Judge to battle it out and attempt to convince them to overturn their decision and fund it. And this of course won't be the last denial I'll have to fight. Sadly, it is common - more common that it should be. I think Medicaid and other agencies are rather relying on the hope that we'll give up, accept the denial, put our tail between our legs and go away. But we don't know how to turn our backs on helping our children. So we become soldiers of one. Battling for every need that they have. Exhausting at times, but we keep marching forward.
We got a very beautiful invitation for Thanksgiving this year. We received a flyer in the mail, inviting special needs family in our community to a restaurant for Thanksgiving dinner, for no charge and no tip. And they were also inviting 12 of your family members to attend with you. Yes doesn't it sound unreal? It did to me too. I think must have read it at least five times, then had to sit down and read it a couple more! I've never seen or heard anything like it before. And what a gift. You can only begin to imagine how challenging the holidays can be with a child who has special needs. I loved cooking Thanksgiving dinners and had done so pretty much every year since my parents divorced when I was 19. I remember trying to cook my first Thanksgiving dinner after Noah's birth - it was so difficult. Noah was tremendously distraught in his early years, he screamed, cried almost twenty-four hours a day. I bounced him endlessly on exercise balls, turned up every stereo to try to find something that would soothe him even for 30 seconds... I cried more tears that first year than I had done in my whole life. I was so lost, so tired, so beside myself with grief and trying to accept my new life in the role of a special needs mom. Thanksgiving to me was a way that I could prove that I was able to juggle both a very challenged child and cooking. Although many hands were offered for help, I declined wanting to conquer the goal - a turkey dinner with all the trimmings and me serving my family around the table. I did it. But it was far from easy, and looking back on it, not sure how I did it, and I wouldn't want to try it again. It inevitably has grown easier since then, since Noah is now older and able to self-soothe to a large degree. But it does take extra work, that other households don't necessarily have to balance while preparing a large meal. So this year, we decided to take up this wonderful offer by Zolo Southwestern Grill and accept their kindness and amazing offer to have them prepare our Thanksgiving dinner this year. Noah and family will be dinning out. And I'm excited - thrilled actually to be surrounded by other special needs families - we are a group of people in the community that never fail to count our blessings.
Love,
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
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