Monday, January 16, 2017

Long Time, No See


It has been ludicrously long since I posted.  And I have no real excuse, but I am afraid that if I don't take a broad swipe at the last 6 months, I will give up posting because there has been too much time that was let pass.

The short, please understand excuse, is that I kept hoping that I could share hope and answers, and we still have no answers for Elise's exhaustion and soreness.  The Vitamin D supplement has made a huge impact, but it has not been the silver bullet I was hoping for.

Nor have I gotten much encouragement or direction from our doctors.

In the last 6 months, I have watched several of my friends' kids and family members be excessively tired for less than a month and their doctors ran every test they had available to them, while I had to bully doctors and specialists to run the same ones.  It has been up to me to ask for tests and specialist referrals.  It has been up to me to read medical journals.  I have not come up with any new hypotheses, but I also find myself angry, as it is not my JOB to do so, either.  I mean, other than being an invested mom.

I have not given up, but my panic level is lessened by her physical response to the Vitamin D supplements.  I am low grade seeking, but my anxiety levels had gotten so out of control I was having panic attacks and waking in the night.  And so I had to give it a rest and allow myself to resolve my own issues before I had to seek medical help myself.  Put the oxygen mask on yourself before you put it on your kid and all that.

I feel like there is a huge cavern between typical kids and kids with disabilities in the worry and care that will spring forth when things are not at emergency levels.  Between Elise's general pain, exhaustion, and even her sensory issues I have nothing but proof that this is not in my head.  I have become so angry over this, that I can't even be a good friend at times, because I find myself spitting the same responses that I was given 3 years ago when the exhaustion started.  That's right, that was not a misprint.  THREE YEARS.  I blew off the exhaustion for over a year thinking it was normal teenage growth tiredness.  I started marking and cataloging weirdness for a year and talking to her general practitioner for a year after that before I demanded testing and specialists weighing in.  And here we are with no one worried but me.  Not the best place to be, by the way.

So while I am struggling with medical lack of response path, I do have some incredibly cool stories to tell you.

Without giving you the particulars, as mudslinging will accomplish nothing, we fought to establish a special needs program at the church we were attending back when Elise was moving up to elementary school.  For the first couple years, we tried to fix things to make it easier for Elise, then we decided that we should be advocating for everyone in our situation.  So, in 2011, over the period of a year, we tried.  We wrote up a proposal, we sought resources, we gathered support.  And the church kept putting up roadblocks: liability, man power, and myriad reasonable excuses.  And at the same time, the then current organization for Elise's individual support stagnated. 

We finally concluded that we were unwanted. And even if we "won" and established a program, there would be nothing gained if we were a millstone and not a goal or passion.

We spent the next year, going from church to church, looking for an established program.  Because we were so emotionally battered, we were too exhausted to try again.  We found one that was nice, and we stayed for a while.  Even driving our oldest back to our old church as he had bonds there.  We discovered that the special needs program ended abruptly at middle school at the church we had been attending, and so we again sought a new church home.

We have been attending our current church for several years. And from the first day, they adamantly stated that they wanted us there and that they would find someone for her so she could have a friend meeting her needs and so we could find peace in attending church by ourselves.  I certainly cried over their response to us.  As the years have moved, they have sought to better their program as best as they could. 

Recently we were contacted, by the leadership, along with other parents and therapists and special education teachers.  They shared their goals and asked us what OUR ultimate goals, needs, and desires were.  They are actively planning and seeking to make their program the most supportive they can, for the most needs as they can, and growing it.  They even ultimately want to market their program to the local special needs community and look for new families.

First of all:  I have never had Elise sought after.  If we don't come, we even get called to see if she is okay.  Second:  They have calendar dates for their plan.  Third:  I have never, EVER heard of a church begging for more.

And so, I cannot tell you what a balm that was to my soul.  That my girl was a passion and not just rising to a need...  I am sad to say, that isn't always the norm.  I hope that others with similar needs have not had the path that we have.  But I am here to say that even if you have walked the same path, don't give up looking, because just when you question your plodding, you will round the crest of the hill and have a glimpse of a city of light. 

And it is beautiful.