Friday, June 3, 2011

Reality Check

Today was another one of those challenging days for me.  I find that when I have those days, this is where I come to process, share, and figure out what to do next.  A year ago, we decided to pursue private therapy for Jordan for the summer and had her receive speech and some OT through the The Center for Childhood Development.  We had an amazing experience!!  The thearpy is a "whole body" approach.  Although her focus was speech, they addressed all aspects of her needs, particularly her sensory processing.  We were thrilled with her progress in these 3 months and she loved going there!

Unfortunately, as it is in the world of therapy and special needs, nothing is free...or even inexpensive.  The center does not participate with any insurance so we paid out of pocket for the therapy (funded by my parents) and submitted to our insurance company for reimbursement.  Although we submitted in August for the first part of the summer and in October for the second half, it was March before the first part was covered and the second still has not gone through.  Overall, we paid around $1500 for her therapy and have been reimbursed $85.  Yes, it is expensive to have a child with special needs and to try to get quality help.  Derrick is pushing the HR people at work regarding the second portion of the summer.

Because we don't have the money to continue to invest in private therapy, we have been researching funding options.  The director at the center, informed me about a grant through the The Family Hope Foundation.  We applied in April and have been waiting, anticipating a response on June 1st.  I have been working gathering the information they required if you qualify so that we could quickly move into therapy and utilize these funds. 

I guess I sometimes have too positive a view on things.  I guess I assumed that Jordan would qualify and we would at least be able to offset our expenses even if it didn't cover the full amount.  I guess I just want what is best for Jordan.  I guess yesterday's letter was a huge reality check for me.  We did not qualify.

I know that in their letter they stated that they had a 63% increase in applicants from previous times and that they are seeking additional funding and to not be discouraged and to apply again.  But what about now?  What am I supposed to do to help give my significantly speech delayed daughter the gift of communication? 

Derrick and I have talked numerous times about how we are comfortable with Jordan's feeding tube as a life-long reality.  She will be able to function fairly normally if she can consume some small amounts of food and drink in our food-focused society, all while supplementing her nutrition with tube feedings.  However, if she is unable to communicate clearly, she will be outcast by her peers, struggle in school, and have difficulty finding success in the working world.  Speech is necessary for success in the world we live in.  This is reality.

I appreciate the "free" therapy we have received for her since she was 10 months old.  However, nothing has come close to comparing to the therapy and results we saw in the 3 month period we paid for her services.  Unfortunately, we don't have an income level that allows us the freedom for that option.  I know that there are families out there that could easily cover the $110 per visit therapy, we are not one of them.  We even discussed if we could afford two or even one visit per month and we don't know if we can do it.  This is our reality. 

I hate to ask my parents to fund therapy again.  Although they would probably do so, asking for money makes me feel inadequate.  I know my husband struggles with the fact that he doesn't make more money to provide for our family.  He works 2 jobs and we are careful about how we spend our money, but there never seems to be enough.  The saying goes, money can't make you happy, but if you don't have money, life sure has some additional challenges.  

I know that God is in control.  I know that he loves Jordan more than I do.  I know that I can't know what the outcome of her life will be.  I know that He will carry me through this obstacle, just as he has every other time I have faced a challenge.  I know that as her mom I want to do EVERYTHING in my power to help her and right now I feel helpless.  I know that God is teaching me something through this...it will just take time to learn what that is and in the meantime, it is hard.
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I don't know what will happen next.  I know I can apply for the grant again in October and will find out in December if we qualify.  I don't know if I want to even anticipate that funding and then be let down.  Maybe next time I will approach it with a "reality checked" mind.

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