This was just one of those weeks where Lovely Laelie’s disability was thrown in our faces several times. We had one to three medical visits everyday this week. Plus I had to explain my daughter’s diagnosis and special needs to 14 new people this week including, a Work Life program person, two lawyers, a San Diego’s Regional Center representative, a daycare referral person, a counselor referral person, a therapist and random medical professionals. I usually can avoid it if someone asks about her. Like when the lady who pierced Laelie’s ears asked about the braces, I just told her my daughter had club foot. And when random strangers see her braces or splints, I can just say it’s for keeping her straight. If a nurse not related to her care team asks, I just say she’s disabled. If someone on the street asks, “What happened?!” I respond, “Skiing accident,” and keep walking. :)
The worst of our week started Wednesday. We were scrambling to get all our paperwork together for our MediCal appointment on Thursday morning. One thing I had to get was a doctor’s written proof of Laelia’s disability. I didn’t see that on the list until Wednesday of course. So I call her pediatrician who is out that day. But then his nurse went out of her way more than any medical professional ever has for us and contacted all the other doctors in the building. But since they had never personally seen Laelie, the nurse had to call Children’s Hospital where she found Laelie’s orthopedic doctor. Super nurse then got his office to print out his notes. Then she called me back.
“Where do I fax this to?”
“Well I see them tomorrow so just fax it to my work and I’ll take it to them tomorrow.”
I get the paperwork about 30 minutes before I left work. It had already not been the best day at work and I don’t think I was prepared for what I read. Of course I was curious as to how a doctor’s note could be three pages (including a cover page) long. I figured it would be, “Laelia Wesley has arthrogryposis and amyoplasia in all four limbs as witnessed by me. Signed, Mr. Doctorface.” But what I was reading was the doctor’s impressions and findings in detail. I read over, “…significant deformity,” “…significant upper extremity involvement,” “…certainly require surgery,” “…not significant leg power,” “…walking ultimately will be poor,” “…goals need to be reasonable,” “…I suspect she will come to utilize an electric wheelchair,” “…the need for good upper body strength to control walker was stressed [to parents] (as in she won’t be able to),” ”…toes will require flexor tenotomies at time of posteromedial releases,” and “…all of this was discussed in quite frank detail with the family, trying to paint a realistic picture, though not be overly pessimistic,” read his notes.
I have the feeling I was never suppose to read this. There were some things I don’t remember hearing, but I think my brain just tuned them out after a while. It was like asking for water, getting a fire hose to the face and then reading later how we drank ten gallons of water.
He probably didn’t want to tell us any of this, but had to. That must have been a not-so-fun job for him. I remember crying all that day. To think it could have been a harsher and blunter visit… that’s crazy.
That fax completed the paperwork we needed for our MediCal appointment.
We were denied for MediCal the next morning.
MediCal is required for getting Laelia the nursing care she needs at a special daycare, Together We Grow. Something we need regardless of me working or not since trained nurses could do the morning and afternoon stretches and save me the pain of hurting my own child. (WHICH I HATE MORE THAN ANYTHING IN THE WORLD!!) There’s a spot with her name on it, but they take MediCal and we couldn’t get it. I feel like I failed my daughter. Laelia’s main care taker is moving and I’m running out of options fast. I could quit my job to care for my daughter, but we would have to move to a cheaper place since rent would then be a problem.
I called two lawyers Thursday to see what I could do, if anything. Turns out unless my circumstances change, there’s nothing to be done. ‘What needs to change?’ I wondered. Well it turns out that I need a divorce. Charley and I could still live together, but we need a paper divorce to get Laelia the care she needs. The system is broken! I considered that option all day Thursday and hated the government for even making me think that way. I felt wretched. It would fix absolutely everything and solve all our financial problems and medical needs. That’s so stupid! I couldn’t bring myself to do something like that for anything, but for all the parents in worse situations who have had to make that choice, I can’t judge them one bit. It’s a no win option. If I did it, I’d hate myself, but if I don’t do it, I fail my daughter.
Of course our other option is to spend our savings on Pop Rocks, quit our jobs and let the government provide our every need. I’m being a little sarcastic, but as much as the MediCal worker praised us for being responsible and honest, I feel like we got penalized for it in the end.
Because of Laelia’s condition and lack of major improvement, our savings may go towards durable medical equipment (i.e. wheelchairs, etc.) instead of a new home. According to our PT, power wheelchairs can run tens of thousands of dollars. Insurance would cover some of that and we would get them used of course until she stops growing, but it’s ridiculous! We had prepared for a new baby and had adjusted our living accordingly, but how could we ever prepare for this? In the “How am I going to pay for all of this?” section of the AMC FAQ I had printed off the support group website a while back it says, “Your child will almost certainly qualify for Early Intervention programs, and probably also for medical assistance. [...] This is why you pay taxes, people. Nobody should have to go bankrupt because their child was born with a disability.”
We’re not rich and we’re certainly not poor, but we’re getting screwed by the rich and the poor. The rich hoard all the resources and the poor get all the resources. It’s not like the government will let me stop paying the poor people’s disability payments and put that towards my daughter’s.
Ugh.
We’re not without hope, though. Laelia does qualify for the Early Start program. We also just finished her Shriner’s application and drove it to our local Shriner temple. All their care is free. We’re also hoping to get into the Regional Center. She was denied already, but we really need to get her in there for developmental delays (i.e. not rolling over, not sitting up, etc.). It’s also a free service if we qualify. We really need this! Our Early Start coordinator is going to try to get us an interview for next Monday after spring break. I’m praying!
Friday we met with an orthopedic surgeon. He recommended putting off surgery and commended our conservative approach to surgery. The surgery is needed, but it’s a matter of when. (I wouldn’t call my not wanting to deal with it a conservative approach, but okay.) We met again with Laelia’s orthopedic doctor and asked lots of questions. We even got copies of her January x-rays so we could show other doctors for second opinions. We’ll get new x-rays in two months. After that visit, we went to Scope for some casting. They are making molds for her KFOs (finally!) and they will be ready in ten days. (The order was put out for them on February 15th!) After that I thanked God for the weekend and a break from this crazy week.
Back to work on Monday.
