What really doesn't matter.

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.

My Dad sent me this today:

Heaven's Very Special Child
Copyright © 1981 by Edna Massimilla

A meeting was held quite far from Earth
It was time again for another birth,
Said the Angels to the Lord above-
This special child will need much love,
Her progress may be very slow,
Accomplishment she may not show,
And she'll require extra care,
From the folks she meets down there,
She may not run or laugh or play,
Her thoughts may seem quite far away,
So many times she will be labeled,
different, helpless and disabled,
So, let's be careful where she's sent,
We want her life to be content,
Please,Lord, find the parents who,
Will do a special job for You,
They will not realize right away
The leading role they are asked to play,
But with this child sent from above,
Comes stronger faith and richer love,
And soon they'll know the privilege given,
In caring for their gift from heaven,
Their precious charge, so meek and mild,
Is heaven's very special child.

Love.....Dad

Why not?

Even in the worst moments of fear and desperation in our journey over the last two years, I have always been able to pinpoint the positive. To share my overwhelmingly intense feelings of love and adoration towards my family and even my circumstances. Sure, there are several times a day when my heart beats a little bit faster, and my teeth clinch at the thoughts of the unknown... but we march on. What choice do we have? When life starts spinning out of our control, many people will turn to anger, sadness, resentment, pity, fear, and depression. All feelings I have certainly dabbled in over the course of this experience. The experience of having a sick and disabled child. My firstborn, and so by definition the center of my universe for quite a while. But how can we see through these feelings, overcome them, live in hope while at the same time accepting life as it is right now, and embrace it? I wish I had the answers, and for me, this blog has been the most therapeutic part of the journey, because it affords me the opportunity to sit down for a minute and reflect, then pause before moving on. So for that opportunity it has lended, I am forever grateful.

Now that Kaylin is 19 months old, and doing all of the things neuro typical children do, it is even more blatently obvious how severely impacted Avery is in every way you can imagine. I don't resent Kaylin, and in fact, I am over the moon elated that she is so healthy and "normal." It just paints a clearer picture, and again makes me so thankful for BOTH of my lovely daughters and the lessons they bestow on me daily... if not hourly.

But as I watch Kaylin desperately try to win her sister's attention (a virtually impossible task) and give her kisses and tell her she loves her.... (despite nothing in return) I must admit I have a few moments when I let the forbidden words "why us" eek in and steal my serenity for a moment.

Why do we have to watch our daughter's suffer because of Autism and mastocytosis? Why do we have to go broke looking for new treatments, medications, and alternative approaches? Why do I have to stay up at night on the internet for hours at a time doing research on how to help her, why do we spend all our free time driving to and from therapy, special school, and doctors appointments? Why can't we just do playdates, go shopping, bake cookies and read books? Why do we have to listen to screaming and crying in the middle of the night, and not have any clue as to how to help? Why? Why? Why?

Well, why not? Why not me? What makes me and my family so much better than everyone else that we wouldn't have hardships, tearful nights, and gripping anxiety? I am as equipped as any, if not more so given my education and training. But sometimes, just sometimes, I find it hard to be grateful. But it only takes a moment. A brief second to snap me back to optimism. And even when I am not looking for it, I can see the beauty in a stolen glance, and in an excited smile when I lay in bed with Avery or pick her up from school.

So I remember. I remember that within her diseased body and damaged brain there is a beautiful, loving, sweet, happy little girl. My little girl, my first born, who I would walk through fire for. I remember that through this circumstance, I am stronger, better, more driven, have more purpose, and more joy in the simple things than I EVER would have been able to without all of this. So then I am thankful. Thankful for all of it. I am blessed to be Avery and Kaylin's mom. I have so much to be grateful for, and I learn more about the countless reasons every single day.