EB Struggles

This week I started back to work. Although I only work part-time from home, it’s a great break from everything else on my plate. I’ve spent the last few days trying to get a hold of EDD to see about my disability benefits from my pregnancy since I still haven’t received them, but of course you can’t get through by phone, but since it’s hard for me to visit their office in person, I sent them a good, old-fashioned letter. I got a call from Medi-Cal Waiver office telling me I need to apply for SSI for Kiira and it’s best if I go in person. I asked her when I’m supposed to find time to do that, but the woman reminded me that this is a life-long disability and once it’s done and Kiira has SSI, we’ll never have to go again. I feel like it’s a futile exercise though since it’s based on our income and she won’t qualify for benefits. However, before we can be approved for the Medi-Cal waiver, we have to exhaust every other avenue first. She also reminded me to get our genetic testing done (we should have the results this week) so that we don’t bring another EB child into this world since it’s so awful. Thank you–I know it’s awful and even if I had wanted more than 3 kids, trust me, I wouldn’t have another one. Our CA Children’s Services app is also on hold until we get approval from the Medi-Cal waiver. It’s simply amazing how much paperwork, phone calls, and visits are needed in order to get my child much-needed supplies to care for her life-long disability. If a child is born with a condition, it should just be automatic care through either the insurance or the government–both things we’ve paid into for years and never used ourselves or for our other girls!! Through donations, we have supplies and funding to last us several months, which is so amazing, but Kiira will likely need bandaging for years.

Then I got a call from Dr. Tolar’s office (the doctor conducting the bone marrow transplants in Minneapolis) and we have to get approval from Kaiser first, which I assumed, but since our dermatologist isn’t on board with a BMT, I’m afraid we’re going to run into some issues. We just hope she sees it as an opportunity to consult with everyone we can so that when we are ready to move with a treatment for Kiira, we can.

While struggling to get all of this paperwork done, we’re also struggling with Kiira’s skin. My last post showed her improved rash, but the next day it returned and it looks like it will be an on-going issue. Dr. Tolar wrote me an email today complimenting our bandaging and management of infections (since she hasn’t had one since she was in the NICU), but it makes me want to cry, or maybe laugh, because in the last 2 days I see how holding her hand too tight during bandages gives her blood blisters, clipping her nails makes them fall off and tear the skin, the wrong outfit gives her a blister on her chest, and picking her up by her armpits makes multiple blisters there too. Her lip keeps bleeding from her popped blister and her tongue is covered in loose white skin. If these things that we are doing causes her so much injury, what is going to happen when she starts moving and causing her own injuries? Oh never mind–I have seen the pictures. I know what is coming.

Many offer to watch Kiira or help us with her so that I can get a break, but I don’t trust anyone with her, because I don’t even trust myself with her! Sure I can have some nurse come in here and watch Kiira a few days a week, but she’s not familiar with EB or how careful you have to be in handling a child with skin like hers. I know I couldn’t blame someone if they did injure her since I do it on a nearly daily basis, but it would be so hard not to. I feel torn between over-protecting her and wanting to run away and do anything else with my time besides watching my baby deteriorate as time goes on, as I know I have not even come close to seeing the worst on Kiira.

I told Jason the other day that it’s funny how we’ve prayed since she was born that this would go away and when it didn’t, we prayed that it would be the most mild case, and when it wasn’t, we prayed it wouldn’t be the most severe, and I guess it’s not, because some EB kids don’t even make it 7 weeks, but it did end up being RDEB with no collagen VII, which is pretty much one of the worst EB diagnoses possible. My constant prayer is “God, please heal her!”, as I can’t muster up any other words.

People keep ask how I’m doing–I could lie and say that I’m great and everything is under control and I’m happy that God gave Kiira her condition. Or you can keep reading my brutal honesty about I feel for now. I feel like an empty shell, just going through the motions. Time to feed Kiira, time to change her diaper, time to feed the other kids and get them dressed, time to pump, time to work, time to do laundry and dishes and wash the bottles for the millionth time, time to do Kiira’s dressing changes, time for Kiira’s 2-hour evening cry fest and at long last, time for bed–my favorite part of the day. One of the kids is crying, or being funny, but I feel nothing. I don’t feel empathy for them and I don’t feel like laughing with them. I can’t get what I’ve lost or what I have coming in our future off my mind. Sometimes I let myself cry, but usually I just try to feel nothing so I can get through the day. Some days I can keep it together and I start treating Kiira like a “normal” baby and then my actions cause her injury and I get so angry that I have to carry her around as little as possible and when I do, it’s on her pillow. Nursing my other daughters was such a bonding time to me and instead I feel burdened by pumping and feeding Kiira with a bottle because it’s hurting her and if I can’t even cuddle her, I can’t imagine trying to nurse her. People want to help but I don’t want the help, not because I don’t appreciate it, but because I don’t want to have to need it! Such silly things even cross my mind like the fact that she couldn’t wear a pretty dress and headband for Thanksgiving, she probably won’t be able to eat chips when we go out for Mexican food, and she may not even be able to color like her sisters do since her hands will be either be wrapped or too damaged to hold a crayon.

In the hospital I kept crying out “Why?” and I felt this whisper from God saying, “Because I love you,” but I still can’t wrap my mind around how God’s love for us can also burden our hearts so heavily or how is love for Kiira can still allow her to live a life with EB. I don’t know that I’ll ever understand that whisper to me. If I do, I will surely create an updated post! Supposedly we never get more than we can handle, but I am definitely feeling that theory put to the test. After bible study on Monday I told Jason that I hear stories of how parents are up with their children all night because they’re itching or in so much pain that they can’t sleep. I said, “God can’t give that to me too, because I cannot function without sleep.” Ha! That night Kiira was up nearly all night crying, which is a first for her (remember my last post started with how well she was sleeping), and I got about 2 hours of sleep. I guess God was telling me that even without sleep I can survive another day. I won’t make that mistake again… So the next time you ask how I’m doing, I’m probably lying if I tell you I’m fine, but I just don’t want to get into it. The best thing you can do is tell me you’re praying for Kiira, because I truly believe God is listening.

Even with all of these terrible, raw, empty feelings, I’m reminded once again of Kiira’s middle name, “Faith”. I know I have to keep having faith. I know God has a plan in all of this. I still don’t understand why He allows children to be burdened with conditions and diseases to make a point to the rest of us, and I don’t know why He chose us. But I have to keep having faith that a cure is coming and until then, God will help us get through this one day at a time…

Kiira


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