Well, just when things have been improving, I get hit with a big blow. Dakotah's scoliosis has worsened and she will be having spine surgery on 11/16 at Arnold Palmer Hospital in Orlando, FL. First and foremost my heart breaks for my precious little girl. She will endure so much pain from this surgery and she will have no way of telling me when it hurts. She will be in the hospital for at least 5 days and then home with constant monitoring. She can move just enough that she will have to be watched to keep her still and straight until the rods fuse to her spine. The surgeon will be placing 2 titanium rods in her back and will be weaving a wire through each vertebra to attach them to her spine. She will have to lay on her back, very still for several weeks for the fusion to take place. She can do so little that the simple gesture of her rubbing her eyes or scratching her head is a HUGE accomplishment. Please pray with me that she does not lose the ability to do that. She also knows her name and smiles when she hears my voice - it will crush my heart and soul if I lose that precious part of my life. I will probably never hear her say "mommy", but that smile of hers tells me she knows who I am.
On top of worrying about her, my insurance copay will be $1250 for the stay. I teach and will be out of work from 11/16 until January. This will be 17 days of leave w/o pay for me - I will not receive any paychecks during the entire month of December and won't even make enough to cover my insurance premiums. Luckily the school district won't drop me, they will just deduct it from my checks in January (thus reducing any money I will make in January).
If you have read any of my previous blog entries, you have seen that I went through something similar last year only this one will be worse. I have inquired about our sick leave bank, but according to Florida state laws, sick leave bank time cannot be used for anyone other than the actual employee (stupid law if you ask me). I am so worried about how I am going to make it. Because I work, my daughter does NOT qualify for ANY type of assistance. The one program that she does qualify for "MedWaiver" has a waiting list and she's been on that waiting list for 9 years now. We actually go to Tallahassee every March to meet with senators and legislators about this horrible situation for our persons with disabilities in Florida.
I do not know how I will pay my essential bills. I am still trying to get caught up on my wheelchair van payment. It's 9/8 and I still owe the payment from 7/30 and 8/30. The credit union that has my loan has been WONDERFUL in working with me but I don't know how much longer they will do so. I have credit cards calling me and hospital collections bills piling up. It's gotten to where I don't even open them, I just put them in a pile on my kitchen table.
I have a wonderful 18 year old son that has gone off to college this fall. I have to help him as best as I can. I am all that he has.
I know that everything happens for a reason and God would never give me more than I can handle, but it is hard sometimes. I keep going and keep trying because I want to be a good example for my son. I truly believe that I was chosen to be Dakotah's mom and I NEVER begrudge her or wish I didn't have her. In fact, I couldn't imagine my life without her.
Some have asked me, "What will you do for Christmas?" My response to them is this, "All I want for Christmas is my daughter to make it through this surgery and have a good recovery." That is my Christmas wish this year.
Thank you for being a part of this journey by reading these posts. XOXO
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Jen
I can't believe you get no assistance. This is a crazy system. She should be able to at least have medicaid. Any small disablility check would help. I'm so sorry you two have to go through this.
ReplyDeleteRemember this, "He will wipe out every tear from their eyes, and death will be no more neither will mourning nor outcry nor pain be anymore. The former things have passed away." Revelation 21:4 ...Say to those who are anxious at heart, "Be strong". Do not be afraid. Your God will come with a vengeance itself,...He himself will come and save you people.
At that time the lame one will climb up just as the stag does and the tongue of the speachless one will cry out with gladness." Isaiah 35:3-6.