How do I keep things "normal" for Emerson when my heart is torn to pieces? Why must we carry on with life as usual? John still has to work. The chores still need to be done. Emma still needs consistency in her toddler life. She needs stability. I want life to just be put on hold for a while. Besides going back and reading past posts, I hardly remember the last 6 months of my life. I'm just torn. I'm finding it hard today to call the hospital and see how Malachi is doing. I'm finding it hard to enjoy my time with Emerson doing "normal" kid things without feelings of guilt creeping in. I feel like I don't even know what the word "relax" means anymore. I hate not knowing what the next few months will bring, but I'm pretty sure knowing wouldn't provide me much comfort either.
The only thing that might help Malachi is a transplant at Duke. This surgery has only been done on 61 patients with the current staff in the past few decades. In reading another mom's blog of her son with both CHARGE and DiGeorge, they signed consent for the procedure in February (2007), were transferred to Duke in April the same year. They waited for months for a compatible thymus. Then there was a couple month recovery at Duke before being transferred back to their original children's hospital that November. Besides the timing of all this with the new baby's arrival in November, the procedure and hospital stay alone (at least for this other family) was over $1 million. We have three forms of insurance for Malachi, one is private insurance and the other two are programs through the state. It is probably safe to assume that the Indiana programs won't cover medical costs accrued in North Carolina. Our private insurance has a $5 million lifetime maximum for Malachi. As of 12/31/09, Malachi's total medical expenses paid out by private insurance was already $1.2 million. We make well under $20/hour; we can't even wrap our heads around MILLIONS of dollars. And on top of all that, John can't just take months off of work. Can I handle three kids in North Carolina?
See... this is why I can't let my mind wander. Just wanted you all to get a glimpse. Not to mention it helps me stop dwelling on some of these questions to which there are no answers.
You don't know me, but I live in California and have been following your family's story and praying for you. I won't try to imagine all that you are going through, but know that God has it planned moment by moment. Continue to cling to the One who made you, your husband, darling daughter, and mighty Malachi... and know that a random gal in California is praying for you to be comforted, have peace, and trust in His sovereignty.
ReplyDeleteMegan
msgerdts@aol.com
Marissa,
ReplyDeleteOh I can't even imagine. Extra prayers for you and John today....
ok i'll try this again. Lost my comment. We always are praying for you guys. Have you contacted the media for help? Have people in your area do fundraisers for you guys...pancake/spaghetti dinners...you name it. People want to help in anyway they can. ESPECIALLY to help children! We're needing fundraising in a miniscule version for our week of testing in ohio that medicaid won't pay. However, medicaid might pay since you can't get that treatment there. That's what i've learned. If the state your in can't provide that treatment and its necessary to go out out state they should pay. I'd start the inquiry now...can't start to early. If i can help PLEASE let me know in any way!
ReplyDeleteI would start talking to Medicaid and I assume Children's Special Health Care... I don't know how that all goes, but maybe something could be worked out. It's always worth asking. And also, an old friend of mine is a Child Life specialist at the hospital at Duke. If this moves forward, let me know and I can hook you up with her.
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