The other day, I read a friend's status on FB and her subsequent comment to one of her friends stating how her support network had changed drastically since her son, who has CP, was born. It spurred a crazy train of thoughts for me.
Obviously life changed the day we got the diagnosis. Actually, life changed for me that first hospital stay for Will in January, 2010 when he was 11 weeks old. The ride I am on truly never stops or even slows and my support network has morphed so much it is unrecognizable compared to years ago. Here is my take on this new role life has given me to play.
My personal relationships have changed drastically in the time since Will was born. My relationship with his father completely crumbled on diagnosis, my relationship with my best friend was reborn stronger, my parents have since departed my life and my brother and his family re-entered. My circle of friends, in the early days of all this, were originally the friends I took from my marriage and those have evolved into friends I have made along the way. I do count many members of Will's medical staff as friends as I know if I had to turn to them, for anything in a time of desperation, I could. Sometimes, support pops out of the craziest of places from people I never would have thought even paid attention.
Through it all, I operate behind this defensive protective wall. My defenses are never down, they can't afford to be, it is a risk to every member of my little family. While many think I am stoic, strong beyond what they can comprehend, know this is all a facade. Behind that face is a scared girl just trying to navigate these rocky waters. Sometimes, in the endless sleepless hours of night, when most are snuggled in their beds, I weigh the reality of what life has dealt me and it is breathtakingly overwhelming.
While I always worked with kids with special needs and challenges and thought I totally got it, it is like anything else and until it is the life you live, you have no way of knowing. If I were totally honest, I'd say I never really processed the diagnosis. I navigated through years and years of being turned away by doctors who thought me overprotective, overbearing and probably a touch hypersensitive to get to the all mighty diagnosis. I got to that hurdle, jumped over it and sped forward. Sped forward through red lights and stop signs to a life of therapies and adaptive devices and growing challenges in a growing boy with his own needs.
Sometimes I feel I totally have this. Sometimes I feel unstoppable and powerful. Others I am gasping for breath at the mountain we still have to climb. It is emotionally, physically, psychologically, financially draining. Never being good at asking for help doesn't do me any great benefit, but a leopard doesn't change its spots does it?
For fear of sounding pessimistic and "Debbie Downer", the good and bad are at a neck-and-neck tie. I love my son, I know he was given to me because I can and will advocate and be his voice. No doubt. Him and every other angel or child with an unknown genetic syndrome (there are thousands out there still). To some extent, on some days, I miss life before all this. I miss being bored, I miss being tired because I slept too much, I miss consuming books at a crazy rate because of my love affair with words. I envy those that get to live what, for all intents and purposes, would be labeled a "normal" life. Getting to go out and socialize. Getting to leave the house without the equivalent of a full day's stuff because you never know what is going to happen or what he will need. Diaper bags, thickener for his drinks, a wheelchair or walker or adaptive stroller all of which are heavy and cumbersome. I get tired of being the single one, the one with the whiny clingy overstimmed child who has me in a half nelson because he is done, so I am too. Trying to make sure my daughter has all she needs, while he has all he needs doesn't leave much time for much else. I look to the future and see much of the same. It's funny and I will try to put into words how it feels now, but it may not come out right. My Gabbie just turned 12 and I watch her evolving into this unique amazing young woman. I feel like Will and I are frozen in time. My body feels 150 years old but I feel like he and I aren't aging. He is, developmentally, around 15-18 months old and I feel like that is where time stopped for he and I.
To those of you who know someone who has a child with a challenge, be it physical or developmental or purely medical or *any* challenge that changes their life I offer you this little piece of insight. Chances are these people are scared, stressed, tired, hungry, unsure of themselves. Chances are they won't tell you, they won't ask for help unless they absolutely have to and will then feel guilty for doing so. When you ask how we are, we will say fine or making it or one day at a time. When asked what we need we will say we got this, we are good. Look past it, offer a hug, force a break away from the situation. The small things go so far in these situations. When people do things for us, no matter how small, it always make me stop and take a breath, smile, feel lifted. When people tell me they pray for my son, or their church lifted him in prayer, or their child talks about him or tells others about him - it all is the reward for the path I travel and makes it so worth it.
I am not, in writing this, asking for anything or looking for sympathy. Just my release, through my love affair with words, to be able to finally say what is in my head and my heart. It has been a long time coming to get to this point and to have a venue and an audience. I thank you for that, it means more than you will ever know.
My children are, by far, the best thing I have ever done. I know every parent says that, but my children truly saved me and gave me a purpose and direction in a sea of bad choices and self defeating actions and mistakes. The people I have met along the way are amazing. Having Will in my life definitely weeds out the people who don't have the best intentions very quickly. What is left behind are people I am proud to call friends, members of my family who may not be blood but are more family than those who share my genetic code and I know totally have our backs. To you, and you know who are, I thank God for you every day. I can't imagine taking this journey without you and I can't wait to see what is in store for us all!