Journal for 2010
Hi everyone. Can't
believe it's February already! The doctors' appointment
Wednesday, April 14, 2010
Hi all. I just
got back from urgent care and helped Brian put Miss Autumn to bed. Not
a good day, and I'm upset and worn out.
Tuesday, August 17, 2010
One of the things I am starting to realize being a parentof a child with special needs is the significance of anniversaries. My daughter Autumn has Spinal Muscular Atrophy, a type of Muscular Dystrophy. She was diagnosed March 1st, 2006 when she was one year, one week, and six days old.
I remember going to the neurologist with my husband and my beautiful daughter not knowing what to expect. I researched the tests that were to be done that day (an EMG and nerve conduction test) but had no clue as to what the doctors were looking for. At an earlier visit I answered question after question about Autumn's birth history, our family history, siblings, physical development, etc. To me, everything was pretty typical except for the fact that at age one she was quite 'floppy', and didn't walk or crawl. She did however, roll over both ways at the young age of 14 weeks, was able to sit unassisted (though unable to go from lying down to sitting up), and seemed tobe otherwise bright, healthy, happy, and social. Autumn had an older brother who was 4˝ at the time, and I understood that there were wide variations of 'normal' for babies. Though never in denial, I thought my Autumn was at the other end.
I was wrong. Boy was I wrong.
When we got her diagnosis, there were no words for what I felt inside. My daughter had this disease that was progressive and fatal. The doctor told me just to take her home and love her, treat her like we would treat any other kid. I don't remember much of what we were told but I do remember the kindness, sadness and regret in his eyes. (I wish all parents were as fortunate as we were on that day to be told of a diagnosis by compassionate doctors. Many aren't.)
On the advice of this doctor, we called the Muscular Dystrophy Association. I heard of MDA and knew of the Telethon, like most Americans, but admit I never watched it, and did not know anyone with muscular dystrophy. Now my kid was thrust into that club, so I figured that I'd better get cracking, and learn as much as I can.
At our first MDA appointment, I didn't know what to expect either. Of course I did my homework (years and years of college prepared me for that!) and studied up on SMA 101. Once again, we were surrounding by friendly, loving people who wanted to help. Maggie and Julie along with Dr. McCormick really helped to put our minds at ease, and let us know that although this really was a serious disease—without any treatments our cures currently available—we did not have to sit back and watch it take our daughter. I asked Maggie if we should save for college for buy extra life insurance, she looked at me like I had two heads and said, "College. Definitely." I will always love her for that.
So months went by, and I cried every day for the first fourof them. Most of the time we did typical family things, but some days were so hard, when you looked at Autumn inthe stroller, playing on the floor, sleeping in her bed, and knew that inside she has this disease that would quite possibly rob her of the ability to move, cough, swallow, and breathe. The disease already took her ability to crawl, stand, and walk. In all honesty that didn't take long to get over, and it was made easier by the fact that she never did have much mobility except for rolling. Machines could give her mobility, but breathing was another issue.
On March 1st, 2007 was another significant anniversary. Exactly one year after her diagnosis, Autumn tried out a power wheelchair. I watched my daughter figure out how to work the joystick and go where she wanted, all the while trying to keep it together inside. I hurt because my Autumn would never walk,but I was even more joyful that this machine was able to give back some independence that every two year-old should have that SMA took from her.
Of course I wasn't expecting the fight from the insurance company, but after months of fighting, countless letters and phone calls, videos of Autumn in the demo chair, four appeals, and binding arbitration, Autumn's chair was paid for. Word to the wise—don't mess with moms of special needs kids. We're angry enough as it is, and if there is something out there, anything, that will help our babies, trust me, we will do everything in our power to get it.
Another March went by, and though life didn't really settle down, we became very familiar with Autumn's diagnosis and less frightened, at least of certain things. We decided that if we couldn't control how fast the disease progressed, we would at least do what we could to keep Autumn healthy. On September 19th, 2008 (another anniversary) we had a gastrostomy tube placed. Autumn could eat, but was very thin, and I was worried that if she did get sick, the doctors would feed her formula through a tube shoved up her nose.
I didn't even want to entertain the thought of that.
Getting Autumn her 'tubie' was one of the best decisions ever. After surgery, she was home in less than 36 hours. Every single one ofher blood tests has come back normal, and when she is sick we don't worry if she isn't eating or drinking enough since the majority of her nutrition goes through the tube. Autumn doesn't seem to care either—she eats what she wants for the most part and receives her tube feedings at night. Some nights when she's asleep I look at her and cry, hating to see my daughter hooked up by a tube to her feeding pump, hating the long plastic and Velcro leg braces that are used in the attempt to ward of knee contractures, hating thee soft whooshing sound of her bipap machine as it helps her take deep breaths, and hating the plastic mask with the black straps that cover my girl's sweet sleeping face.
But most of all my days are happy and filled with love—for my three children, for my husband who has helped me make it to this point, for my friends who have let me cry on their shoulders and have been there when I needed someone to talk to, for the good doctors who treat Autumn like their own and listen to my concerns. I'm angry at this disease though, furious that so many children have lost their lives too soon, and furious at those clueless souls who make life more difficult when it's already tough enough.
Of course this disease has made me strong too. I have to be, I have to physically do what my daughter can't, I have to be her voice and advocate until she is old enough to do so herself. I have to stand up to ignorant medical professionals, to educators who haven't dealt with a child like my Autumn, and to the morons who are disrespectful and downright rude. I want to have her grow up to be happy and productive, to be able to choose for herself what she wants to do. Until she is old enough to take that on, it's my responsibility to point her in the right direction.
And most of all, every March 1st, I want to say to this disease, "Screw you. We're still fighting, and you haven't taken my daughter yet." Maybe even someday, when March 1st rolls around, we won't have to fight because a cure will be found and no other parent will have to deal with crappy anniversaries anymore.
Now I don't
know if I should spill the beans just yet...
I'll start from the recent stuff & work backwards. Lots to catch up
on as always.