"Your son has what your daughter has." I already knew it when I first saw him and the last ultrasound I had showed most likely.
I'll tell you though, yes I knew the risk when I found out I was pregnant with him. I got that pregnancy test positive on the day that my angel baby would have been due. My 5th month of pregnancy, I had a dream about my son. I didn't know his gender yet but in the dream a voice told me, "He will prepare the way." My daughter, in my 5th month of pregnancy with her, I had a dream that a beam of light shined onto my belly and a voice said, "You are anointed."
I remember both dreams clearly. Very clearly. Little did I know what we would face....
Little did I know eight years later after I had the dream about my daughter, where we would be. Little did I know how blessed yet sometimes cursed I would feel. Blessed because I have two mostly healthy children and one angel baby. Yet cursed in a way because of the struggles...
I hear it all the time that we are blessed. Yes, I have my husband, my children, a home and transportation. Yet the reality is that I don't know what we face ahead. Just earlier today I told my husband (Not where the kids could hear me!) that I feel like what we deal with now is my atonement. He often tells me our budget can't make it. I often hear how tight things are and that now we have the house, we have to cut the budget even more. He's talked of finding a second job, one that will give him no more then 16 hours a week more. Any more then that and we lose SSI and Medicaid for my daughter and would likely lose Medicaid for my son too. The primary insurance is nowhere near enough to cover what has to be. Forget the appointments for a minute. Just the meds she has to have a month, would be easily 300. That's just for my little monkey. No telling what Mr. Froggie will be. Now add in deductibles, co-pays and all of that to doctors. In a surgery year, we would owe at least 100,000 in all medical costs that year. Not prescription costs, that's easily another 3,000. That's just accounting for my daughter. In a non surgery year, it would be about 20k for only medical. Who can come up with that??? That is with the primary insurance but without Medicaid. So we lose Medicaid, we are in deep trouble. These numbers don't account for food, gas and lodging that trips to Little Rock and Dallas require. So yeah, that's always over our heads.
You know what? This is the reality for many like us. This is our Holland. Now, you may be thinking, "Why not have fundraisers?" There are some, even locals who have for various things and raised money. We are not fortunate. In seven years, I have had four I have tried. The first I had jars out when my daughter was first diagnosed with her craniofacial. In six months of those being out, we got about 3,000. That lasted a little bit. Up till the last couple of years we were able to set some money aside. Not anymore. Not in a good while. Yet the medical journey doesn't stop. Traveling still has to be done and bills need paid. The last three fundraisers, the last one being six months ago all flopped. Didn't even raise anything in two of them, the third one got $10. That's it. Yet life goes on, right?
My daughter goes to Little Rock this week for the pain clinic. It's for her migraines. We are supposed to do that once a month, sometimes once every two months. Little Rock is 2.5 hours driving one way. Dallas is about six one way. I'm having to face the reality that I am going to have to tell the pain clinic that we either space the appointments out more or cancel entirely because we can't keep up. This has been coming down the pike for a good while now but with us in the house and more utilities with it, I don't see options. What will that mean? Increased and or more severe headaches that my daughter gets. Her headaches average about three to four a month currently, severity varies. Yet what choice is there? What will the reality be for my son as he gets older as well? I just don't know yet.... We have also faced the reality that depending on insurance issues, we may lose the team in Dallas that cares for both of my children.... Then what? Hope and pray I find a trustworthy team that can and that accepts our insurance..... Yet also risk more....
Those who don't walk a journey like this don't have to make tough choices like that.... Life in reality is full of tough choices for everyone. It's honestly full of miracles too. I wouldn't change it, mostly..... Perhaps it is though my children that others will learn love and acceptance as well. Judge by appearances and disabilities less and love for the inside more.
Despite how ugly life is sometimes, I am blessed that I have what I do. Just sometimes though, I wish we could better afford what my children and we need. Yet life is what it is. The hardest part sometimes is looking out, seeing that others get what they need, fundraise more then enough to cover medical costs but others are left with the reality of bankruptcy..... We are not to that point yet but what truly scares me, we are not far from it at all.... Medicaid gets lost and or we lose my daughter's SSI, that would be our reality. Then what??
As beautiful as riding the cliff edge can be in a journey like this of special children, knowing the fall would likely happen, is what makes a journey like this terrifying.... For some it's even not knowing if their child will survive to the next day.... For many, we also ride the fiscal cliff edge.... Knowing that because of money my children won't get all of the care they need hurts. What kind of mother does that make me??? Some of the stories I read about really makes me wonder how are some deserving of the care therefore can afford it easily yet others can't? How is it that some children out there are denied a chance at life because someone thinks they don't have much of one anyway so why bother?? Who decides that crap?! Who decides who is "worthy" of care and who isn't?
What makes some think they are God and decide who is worthy of life let alone a fair chance? When did this pathetic society get to the point that clinics and hospitals would rather decide who of their patients they can make the most money off of and forget the rest? When did we get to the point that regarding human life, no matter how poor or disabled were less valuable and worthy then turning a profit? When did we get to the point that insurance dictated everything, including who lives and who doesn't, and truly the only reason they exist is to also make profit. It has nothing to do with truly wanting to help people. Hospitals are no better when they charge insurance companies what they do!
We live in a government run by idiots and the rich......
This is our Holland and it's not always roses. Yet God will somehow, someway provide a way. He always does.
~Special Momma ~
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