Noah's Miracle : April 2017

I'm listening to the rain hit against my broken window panes and I await nervously a window well that has rusted through to fill up with water. A reminder that I now lack any financial resources to make any reasonable home repairs because I have a severely disabled child that needs more help than I can fund out of pocket. A feeling that things are crumbling around you and you sit just powerless.
The thunder grows closer and prompts me to acknowledge all the things one cannot see, but that still have endless ramifications. I can feel the earth shaking and rumbling. The clouds growing angrier and swelling with water - perhaps a small consolation that the earth understands these intense feelings that I manage on a daily basis.

I haven't written a personal blog in a while - almost a month to the day, actually. Unusual for me, as I always have something to say, but I remain very aware that I can be pulled to say 'too much' especially in moments of pain, anger and sadness when I write. Lately I've just been emotionally drained by all of Noah's continual Medicaid and CCB denials. I continue to win and reverse these denials before an Administrative Law Judge and every single time the State finds the need to file something called an Exception to Initial Decision and reverse the Judge's ruling. I'm still in utter disbelief that they are permitted to essentially over-rule what a Judge says. It's a power they shouldn't have, but do. I've pounded every avenue I can think of to stop this madness; news media, legislators, local government representatives, advocacy groups, disability law attorneys - you name it I've tried it. And while my name and Noah's story is quite out there, the general feedback is while we feel for you our hands are tied. Noah has become a casualty of a broken system. A system that is failing on him on so many levels.

I hear the statement a lot: I Don't Know How You Do It.

The truth is, I don't know how I do it, either.

I do it because what other choice do I really have? I do it because my child depends on me for every breath he takes. His whole quality of life and well being depends on me being a fighter - whether I want to be or not. What I have to do to provide for Noah and his needs isn't optional. I do it because I love him more than anything else. I do it because sometimes I have some fantasy that I can promote or inspire positive change. I do it to give other parents hope in the darkness. I do it because God dealt me this hand and I'm playing it the best I know how.

There is so much in that statement of I Don't Know How You Do It, that really feels like it minimizes all that I do go through in a day. While you think you're building me up and making me feel like a superhero mom with a simple phrase - it still feels like you're doing nothing more than thanking your lucky stars that you aren't me or could never imagine yourself in my place. It puts me on a pedestal like I deserve a crown for enduring such challenges and hardship. I'm so ordinary - what happened to me could happen to any mother. While certainly Noah has transformed me into someone I never dreamed I'd have to become or be, I'm a better person because of him. Such lessons that God probably would not have been able to show me any other way. Lessons I wish everyone could learn, feel and understand. The world would be such a kinder and more loving place if only you could feel what I feel and experience. Cliche' it remains that good old statement if only you could walk a mile in my shoes...

I've been sulking perhaps a touch over continual special needs defeats.

Therapy challenges, denials left and right literally for everything Noah needs, me lacking the ability to be successful with fundraisers, the realization that there are no more foundations really left to hit up for help,DME's that really could care less about your child's needs, physicians that think it's a breeze to go get an xray across town or give you advice to let your child ride out a 105 degree fever and that an entire body rash isn't of any concern... knowing that I owe on our bank's line of credit which we continually borrow from month to month just to try to get by for Noah - the endless cycle of damn this just all sucks. And that statement "I don't know how you do it." looming in the back of my mind each and every time I hear it.

And it's not just a phrase designed for special needs parents. You'll hear it for the single parenting mom juggling it all without help; you'll hear it over the college student who is working full time and simultaneously coping with the loss of both parents; you'll hear it about the couple that is on their eleventh miscarriage but keeps trying - people use this phrase for everything in the "moment." It brings absolutely no consolation to the person on the receiving end of this statement. It doesn't make us magically feel better. It most certainly doesn't make us feel stronger. If anything it's a reminder of how truly alone we are, as you're simply sitting on the sidelines wondering "how we do it." But I bet all this wondering doesn't keep you up late at night like it does us. And you wondering doesn't ever inspire you to say maybe she can't do it all - how can I help her?

I wonder too. I wonder how I'm able to get up and put one foot before the other and keep going, how my drop tired self finds the energy to fight endless battles, write legal pleadings and attend court hearings, respond to countless emails, coordinate continual appointments, juggle all of Noah's therapies and appointments, not shaft or leave his little brother's needs behind, be a great wife, amazing partner, provide for my family's needs; cook, clean, do laundry; tend to the yard, homeschool two beautifully unique and smart boys, trouble shoot all of the family's problems, find solutions and remedies to anything that is wrong, and find time to help other's in need. So yeah, I don't know how I do it either..... but, I just do.

Love,