In the early days of "what the hell is wrong with my kid" I started to withdraw a bit from social activities where my friends kids would all be laughing, playing appropriately, acknowledging others, talking, and so on. Every time we would go, it was like a dagger to the heart, and I would usually leave a bit early feeling a little more sad and afraid than I did when I got there... so naturally, it got easier to avoid the get-togethers than to drudge through them with a fake smile and less than believable positive attitude. In some ways, time and more time have made such gatherings easier to bear, and certainly, having Kaylin to bring along makes the hard moments with Avery a little more tolerable. Some friends may have gotten sick of having to edit their conversations with me, and censor their bragging rights as parents, but more friends than I would have thought stuck in there with us, and weathered the storm.... often holding the umbrella or at least giving me a dry place to escape to every now and then. It has been one amazing lesson in relationships for me and many around me I must admit.
Which brings me to the point of this post. For a long time I felt utterly alone. Like no one could possibly understand how it felt to lose your beloved child into a neurological disorder. To see her developmental milestones drift away one by one... along with most of the early abilities she had to relate and communicate. To really share experiences with others. To be left with a puzzle that keeps getting harder and harder to solve... with no one who really "gets" what is like to live in such uncertainty and with such a seemingly severe disability. Sure, along the journey I have met a few mom's who have kids with special needs, all with varying degrees of severity, but even then, my kid always seemed the MOST impacted. The most difficult to figure out, and the one kid who couldn't seem to make progress. So even then, I felt alone.
But the truth is, I am not alone. Just because someone else hasn't walked in my shoes, does not mean that they can't find a way to relate to me. The even BIGGER truth I had to realize, is that I have to find a way to relate to them. If I am to be a true friend in return to those who have stuck by me through thick and thin, I have to figure out a way to overcome my own issues... and learn to celebrate their lives, their kids, their triumphs and their milestones.
Sure, some days it may be easier to stay home. To avoid the obvious differences between my significantly disabled child and your perfectly normal, or slightly ADHD, or vision impaired, or whatever child. But I am going to try to make it work... because you have tried so hard to make it work with us. It really doesn't matter that my kid can't do what your kid can do. She is a blessing. We adore her for all that she is. Right now. There are moments that are really hard for us, and I may need to skip a few events, but we will keep trying. Everybody will have "stuff"happen in their life that they didn't plan for. Didn't expect. Didn't ever dream they could handle. Our "stuff" just happens to be lifelong... and happening at this moment. So thank you for your patience. For your perseverance. And mostly, for your compassion. Because when it comes down to it... we are more alike than you may think. And when your storm comes, I may just be there to hold an umbrella for you.
Greetings from Fort Worth-
I have been reading your posts for some time now. Your honesty, commitment, and determination are truly inspirational.
After having lived outside the US for the past 2 1/2 years, we have just returned to North Texas with our 5 year-old Masto kid who has had unusual developmental issues,including several years of seemingly autistic spectrum behavior and communication style, which seemed to evaporate like morning dew with our recent move. Right now we are dealing with mystery inflammation of his nose, throat,tonsills/adenoids; I say mystery because we have now had at least 6 specialists do tests, x-rays, lab work, and no one is clear yet about the cause. We are going to MD Anderson this week; we went to the Mayo in Rochester a few years ago.
We, too, have a long and complex story. I agree and recognize that dealing with this condition and it's myriad of manifestations is exhausting, all consuming at times, and expensive. I hope we can be in touch, either here or maybe through Mastokids.
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