Sunday, March 15, 2009
Unpacking update.... my bedroom is finally all one color and my bed is assembled... I am a little concerned that my mattress seemed more comfortable while on the floor than in it's frame! Internet is hooked up after some not so minor confusion but it's all sorted out now! No more "borrowing" from the neighbors! And best of all.... we bought a new coffee maker, hubby and I returned to Walmart (I know ya'll told me to leave him home but I just don't have the heart to deprive him of helping buy a gadget!) and decided to purchase the updated version of our missing coffeemaker. Today's coffee was pure bliss!
Today was a loooong day... it's been raining for 3 days straight now so everything is just wet, cold and icky. We had to drive 2 hours away to Winston Salem for a support group meeting for the NC 22Q11 group we belong to. 22Q11 is a genetic syndrome that our daughter Ainsley has. There are some 200 different features the kids can have but fortunately none have all 200! It does make it an exercise in frustration however to figure out how to manage their syndrome since it seems no 2 kids are the same. Lots have some of the same more common features but still it can be difficult to sort out what to do or what to look for to make sure they stay healthy. There is a great foundation based in Syracuse University in NY called Velocardiofacial Syndrome Educational Foundation www.vcfsef.org where the features are listed and lots of other information can be accessed.
I realized today during the meeting today how far we have come in our journey with a special needs child. She will be 14 in April and it just seems like yesterday she was a tiny infant and I held her in my arms wondering what was going on with her and how I would find the right sort of help for her. As we learned about her genetic syndrome and then later about autism the learning curve just seemed so steep! We thought we would never learn enough to help her or enough to explain to those working with her what she needed. Today during this parent support group meeting while we heard a speaker who also has a child with 22Q who has written a book about how to educate our children and then a psychiatrist who specialized in schizophrenia (one of the many mental health issues kids with 22Q can develop) I looked around at all the others that are just beginning their journey.
I watched a Dad of a newly diagnosed child shed tears as he listened to the potential struggles his child might encounter and my heart just ached for him!! I well remember the day I realized that mental illness was a possibility for my child. I remember feeling like I could handle almost anything healthwise but I wasn't sure I could handle a mentally ill child. Why I felt so devastated by this particular aspect of this syndrome I don't know. One would think that all the other potentially life threatening things would scare me more but it didn't. Perhaps it's my family history and having watched an aunt, a cousin and his young son struggle with mental illness and how devastating it was to their families. Perhaps it's the social stigma that still surrounds mental illness. It does seem "vogue" somewhat to be depressed or anxious these days but when you utter bipolar or schizophrenia people get uncomfortable! I had visions of my college boyfriend's uncle that used to occasionally hop a bus from New Bern, NC and find his way to Northern Virginia where the security officer in their gated community would detain him at the guard house until someone in the family arrived home to put him back on the next bus back to New Bern. He could be any sort of someone when he arrived... sometimes he was fleeing spies and sure his FBI brother could save him (his brother WAS actually in the FBI but the spies were not real!), sometimes he was a world traveler there to share news from his latest journey, sometimes he was sure that bad people were in his house back in New Bern or that his elderly parents were plotting his demise. It was funny and horrifying all at the same time... just heart breaking!
My child has had many challenges during her short life... she's had lots of minor surgeries and one major surgery. She's seen more specialists in her almost 14 years than most people see in a lifetime. She's been poked, prodded, x-rayed, scanned, evaluated, tested, studied and all nature of other medical things. I used to think it was horrible for her that she's has to go through all this until a friend said to me "you know I bet for her it isn't horrible.. it's difficult but not horrible because this is what she knows...she doesn't know other people have it different so don't make her think she's got it bad!" We have tried to follow that... we have tried to be prudent when choosing what test to do and what to skip. We try to advocate for her with the medical community so we aren't just doing a bunch of tests that seem like a good idea but don't really tell us anything. A very wise pediatrician told me once that every time you hear hoof beats it's not zebras... sometimes it's just horses! Consider the zebras if you are seeing stripes and in Africa but if you just hear hoof beats it might be horses.
A wonderful thing in the midst of the relative sadness I felt for those parents new to our "club" was a few kids that were in attendance who have 22Q. A friend once showed a picture of her little Andrew and my Ainsley to another friend to show her what 22 Q kids looked like and the friend said "oh so 22Q makes them all this stinking cute?" Our kids are CUTE... they really are! One little guy decided I was his instant friend and pulled his chair to sit next to me so I could watch him play his Super Mario Brothers game on his DS game. He was so proud of how well he could play the game and I was very impressed because those Venus flytrap thingies in the pipes always EAT me and he flew right over them unscathed! I watched two teen boys compare their drawings... our Ainsley is also a talented artist and I find it just really interesting that our kids who have has a primary feature in most of them "fine motor delays and hypotonia" can be such talented artists. And people I am NOT talking about being impressed because your special needs child drew a pretty picture, these were MAJOR artistic talents being showcased! One boy had drawn Parliament (you know that major piece of architecture those folks in London get to look at every day) and another had drawn a series of Pokemon characters. Our child also draws lots of Pokemon and anime type characters... some from movies and shows she likes and some from her imagination. Alot of our kids are musical, some play sports, some dance, some learn to drive and go on to college, marriage and parenthood. Alot of our kids don't do that well but they are sweet, hard working, pleasant kids. And some of our kids do develop serious mental illnesses that make their lives and those of their friends and family very difficult as they all try to navigate their illnesses safely.
I guess just like lots of other parts of life we all do the best we can with what God gives us. We figure it out as it comes and muddle through! I can't imagine life without some of these support groups, this particular group is fairly new but I see great potential in our numbers. I see through my involvement with the Autism Society in my area what great numbers of parents can do. We share information, we support one another, we cry together, we laugh together, we roll our eyes together and sometimes we just sit quietly together when it all becomes too much. The important thing is that we are together. People need touchstones, we need to know we aren't alone, that even if someone hasn't been through the exact same thing that they can relate in some way however small. I think it keeps us all sane to know we don't have to know it all but can depend on others to share what they know and if we are lucky we can repay the favor some day.
I have been fortunate in my life that other parents both in the special needs world and in my regular world have not hesitated to step in and help me when I am having a rough day. I remember when Ainsley was little and I would often get to playdates exhausted, frustrated and sometimes in tears and some other mother would hand me a cup of tea, push me in a chair and take Ainsley. Days when willing hands would take Jack when he was an infant so I could deal with a meltdown or other difficult situation. Days when they didn't know what to say or do but would just sit and pat me or give me the hug I needed so desperately.
I try to impart some wisdom each time I post because I hope I can save a new mom (whether the mom is new to motherhood, special needs, teenagers, homeschooling etc) the angst that I felt during all those "firsts".
So here's my wisdom... if you have a friend that is struggling in some area of life find a way to help, don't judge, don't belittle, don't "instruct" (don't ya'll hate it when someone thinks their way is the only right way?), in fact try not to talk much at all because I think it's in the silence that us moms are most capable of connecting on the level that we all need so much. Sometimes just "being" together or doing for one another is the most valuable part of friendship we can offer.