Tuesday, November 18, 2014

Beyond Barriers

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Just under the wire,  I sit here with a letter from the state approving a long fought for bathroom modification.   Truly a miracle in it's own right.  With less than sixty days until the end of the year, and one of the bidding contractors basically disappearing off the end of the earth and taking Noah's file with him.  Leaving us unable to submit a revised bid as the State requested.   This required his county caseworker to submit a letter explaining the nature of why we couldn't comply with their request. 

I thought immediately - game over for Noah.

There is no way we'd get a response back from Medicaid by the end of the year, and when we did they'd surely say you're up a creek because one of the bidding contractors quit their company and stole Noah's file, and even if they did say yes in the eleventh hour how can you construct a handicapped accessible bathroom by the end of the year?  

But I continued to pray and never lose hope.  And the impossible happened.  

There are still some challenges I'm facing, like Medicaid not approving the entire project, leaving me roughly a little over $2,000 short.   While his caseworker plans to ask the state to re-consider spotting Noah an additional $2,000 plus,  I'm kind of thinking that they may likely be willing to offer no more to Noah, even though he hasn't maxed his waiver funding this year.   This means right now what they have asked the chosen contractor to do is modify his bid to eliminate features Noah needs.   Painful thought for me.

I don't know what that will look like.  Maybe that means I have to forfeit a changing table and lay him on the floor, maybe that means no heat lamps because he can't regulate his own temperature well due to the nature of his brain injury.   We already are doing without creature comforts like a simple mirror over a sink so Noah can look at himself, or a height adjusted caregiver sink, no guard railing, all features denied by Medicaid in their final approval of the project.

I'd like to believe they'd step forward so I wouldn't have to cut additional features from this bathroom modification but my gut feeling is I very well could be stuck.   Makes me nervous, but like most things it's out of my control and in the hands of someone else. 

That to a large degree is the hardest part is having to rely on others for the care and help your child needs.  You are at their mercy for better or for worse.   I'm trying to celebrate the simple fact that we made it this far, but recognize I still have more hurdles to go.  And as you may have guessed this will mean construction starts during the holiday season. 

I am also bummed about a situation involving Noah's invitation to Thanksgiving dinner this year compliments of Zolo's Southwestern Grill coordinated by his county services for special needs families like ours.   You may remember we were invited and attended last year and had wonderful time.  This year we decided to go again and invite my older brother's family as they permit you to invite your family up to twelve members.  I didn't see an invite come in the mail or through email as was done last year so I contacted his caseworker who apologized I was never notified.  His caseworker sent me an email with registration on November 3rd and I registered that day.  Two days later I was notified that we were placed on a wait list with 121 people in front of us.  I was later told the event filled up on the first day of registration which was on November 1st.   When I called obviously upset that I didn't have even a fighting chance as I was never timely notified about the event, I was told they were sorry and that Noah and others had been lost in their data base.   Thereby causing Noah to miss an opportunity because of their clerical error.  

I highly doubt we'll get off the wait list, even harder as we haven't been able to get together as a family at the holidays due to Noah's sensory challenges for many years and when you become a special needs parent you feel you could very well likely win the very worst host award.   Your priorities are so focused on your child that you could easily burn the turkey into brittle bits and forget to buy a Christmas ham.   I feel especially bad having extended the invite not knowing that Noah wouldn't make the cut, due to us being untimely notified.  While I am trying to remain positive that somehow we'll find a way off that 121 person wait list, realistically I know that it is unlikely.   Coordinating Plan B at another restaurant feels like it's in my future.

I'm hurt about it, not jut because I was hoping to make this a family tradition year after year, but because Noah missed an opportunity he otherwise shouldn't have.  Had I been properly and fairly notified would I could have made sure we registered on the first day.   And it's Thanksgiving this time, but what if next time I'm not told about something else... just conveniently out of a database.  Another opportunity for Noah lost.  Opportunities that we have become dependent on as our only source of help.

Three things that never come back: the spent arrow; the spoken word; the lost opportunity. 
William George Plunkett


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.