...I told you two days ago that things were going great (which I am still praising God for). Well, things have gone downhill ever since I posted my last post. Yes, everything could be way worse, but I've been struggling and E has fallen back into some of the pain/panic she dealt with before the hospital. Literally out of the blue today, she started freaking out in a way we've never seen. Was I the picture of patience?? No. Was I scared to see her rage returning?? Yes. In fact, it hit me a lot harder than I would have expected. I've seen it all before. I think I was a little in la la land thinking that we had hit the jackpot with her medications. I realize the meds are just one step in figuring out the bigger problem...and it is just helping her cope and remain more stable. The selfish part of me wants it to fix her. I want her whole and healthy. I don't want to watch her scream bloody murder and fight for hours. It makes me feel so helpless. Her little brain is damaged. That's a hard thing to swallow. On top of feeling helpless, I am in so much pain. It's hard to explain the pain that accompanies Lyme disease...just trust me, it's not fun. I want to sleep so that I don't have to feel the pain. I've said this before, but it is so hard to have a chronic illness and walk around in life like everything is okay. There are days I want to wear a sign on my shirt that says, "Yes, I look like crap. Please don't judge. I have Lyme disease." I feel such an extremely heavy weight of being Eliana's momma. I don't want to screw her up (I know I will). But, then, I know that I have to figure out how to take care of me too. It's just all pretty complicated. We both have "sicknesses" with little answers and many options of treatments. And, I'm tired. I am desperate for the Lord tonight...thankful He died for me and my wretchedness.
Amazing grace! How sweet the sound
That saved a wretch like me.
I once was lost, but now am found,
Was blind but now I see.
Love you all,
Lindsey
That saved a wretch like me.
I once was lost, but now am found,
Was blind but now I see.
Love you all,
Lindsey
4 comments:
Lindsey,
I'm so sorry at how long and hard this has been. I continue to pray for you and your family regularly. I know God has you in the palm of His hands and I pray for His peace and reprieve to come to you often.
On a more practical note, I know here in Minnesota there are many resources for families of young children (many of them free). You may want to ask at Vanderbilt for a social worker or advocate. It's possible you guys may qualify for things like respite care (where someone can come in and help care for Eliana from time to time so you can take care of yourself). A social worker will be in "the know" as far as options available to families. You guys have so much going on and really could use some extra support if it is available.
He has you in his firm grasp....
Lindsey, You ARE going to make it through this darkness to the other side. HE is going to pull you through it. I am standing on His word and trusting that He will do what He says He will. He WILL heal the both of you. I WILL NOT give up until you both have received it. I.AM.Believing. And I love you. :)
PRAYING.......
Lindsey,
You don't know me but I am from Tennessee just like you. We have had our youngest daughter for 4 years. She has special needs (believe it or not....probably more needs than Eliana). We are living in Guatemala with our family as we work to complete the adoption process (which has become the biggest nightmare imaginable)....but we press on! We have been here for 2 years now...and our little one was in the US for 2 years before that undergoing surgery and medical care. So....we need to talk girl! I have lived through rages (the worst ever being 10 hrs), night terrors, and violent behavior that scare us to death. She also lives in her own little world with only imaginary friends because she doesn't want real ones. In spite of it all, we love her and continue to be amazed at what God is teaching us through her. For sure, he is squeezing the junk out of us that we didn't know existed. It is a very hard journey to be on and no one can handle the pressure perfectly every day so forgive yourself when you don't always handle things the way you want to. We just have to keep pressing on! Our daughter is 5 1/2 and can't count to 5 let alone 20 and doesn't know her ABC's either....but that is the least of our worries! God has big plans for these girls..we just have to wait and see what they are! I would love to chat sometime. I am a missionary/teacher in Guatemala and you can email me at april.hayman@christacadguate.org. My oldest son goes to Belmont in Nashville so maybe we can meet one day! Know that I will be praying for you and would love to share our Guatemalan blessings and maybe be blessings to one another! Hang in there Lindsey! You are not alone!
Blessings,
April Hayman
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