It was about 330 and I was trying to remember all of the good things about her to put me in a happy place and try not to dwell on "What if Baby #3 is just like this?" (though, I did, lots) I tried thinking back on blog posts that told of the great weekend I had with her and then realized that she's been such hard work that I've rarely talked about her here. What she's like when she's not scratching and screaming. Because if she is having a great day, there's no way I'm going to waste it by siting on the computer to type it all out. Having a child with an auto immune disease that isn't life threatening is really hard. There are no support groups for "my kid just effing itches all of the time." There's no way to fully explain that the reason I'm not sleeping is because I weaned my daughter at 18 months because nursing her was making me physically ill, and she doesn't know how to comfort herself, and I don't know how to teach her. That it's not a discipline issue, she has a psychological problem, and I have no idea what else I can do to give her some relief. There are no financial aid funds for babies with itchy skin who have to see a specialized doctor to be repeatedly tested. And there is not enough patience in the world for me to deal with every person who looks at her and says "Oh, that poor thing, she must be miserable" and then ask if I've changed her detergent.
So after a few hours of ^this^ and more, and writing what must look like a words from a lunatic in an email to some friends, I finally prayed. (I hate that I so often turn to everyone else before I turn to God. Such an awful part of my heart) Not long into my prayer did I realize that I had already gotten off track, thinking about what I've got to change about my meal plan, how I'm going to survive with Eamon working long hours out of the house again the(but THANK YOU JESUS for new job!), what I've got to tell everyone on facebook...It's pathetic, really. So I started my prayer again, only to get in a few sentences to start the same cycle again. And again. And again. My discipline in prayer is dismal.
So, I recognize this, and I'll be working on it (which means that I'll be in my word more too) but in the meantime, I could use some help to keep these prayers going. If you're the praying type, and you'd like to pray for us, here's what we need:
Lily: patience while her home education has been delayed and an ever growing desire to learn and grow close to Jesus. She is a huge helper with Norah, and loves her deeply. But her emotions get the best of her often resulting in three crying Burke ladies. That ain't pretty, y'all.
Norah: for Norah, we need a miracle. I need her body to be healed. I need her mind and little fingers to find peace to not scratch her skin so that when this new mystery rash does go away, it can heal. I need a way to be made for her to go see her doctor. I need divine wisdom to know how to discipline her in particular in a way that doesn't leave her to harm herself. I need her to know what peace feels like. I can't give that to her, only Jesus can. Please pray He can heal her and bring her peace because part of me is really doubting not that He can, but that He will.
Baby: I want to enjoy this baby more than you know, but the fear that I will have as much work cut out for me with him/her (or more!) than I do with Norah is almost crippling. Pray protection over this little baby as s/he grows. That her intestines would form properly, that all of his/her immune and histamyn receptors are in perfect working order and that s/he will have beautiful perfectly smooth skin.
Eamon: Eamon needs encouragement and strength to succeed at his new job. He needs to know that I believe in him, and he needs me to be able to hold down the fort while he provides for our family. I know I can't give him that confidence yet, because I haven't shown him that I can, but I want to.
Mae: I need to be lifted out of the fog of depression, I need to have a clear head, and a willing heart that will help me be the mom I want to be for the girls. I need to enjoy this pregnancy, enjoy my babies, enjoy Norah. I need to accept what I can and should do for my family and be encouraged that I am capable of it.
I woke up this morning, to get on facebook to clean out some friends and saw this verse posted on my church's page, how fitting.
""In the same way, the Spirit helps us in our weakness, for
we do not know how we should pray, but the Spirit himself
intercedes for us with inexpressible groanings."
we do not know how we should pray, but the Spirit himself
intercedes for us with inexpressible groanings."
- Romans 8:26 (NET Bible)"
Much love to you and yours and thank you for taking the time to read this, or even pray. Hoping you are having a very Happy Christmas (I'll be back soon with pregnancy pictures :])
4 comments:
I will say a prayer for your family and all of those things....
I wanted to share with you in case you haven't found it yet. My aesthitician has a son with severe food allergies and eczema. Now that he is old enough he finally gets allergy shots and it has made all the difference in the world. But in trying everything out there, she found a cream that has worked wonders for him. My son also has eczema. His isn't severe, but it is all over his little body and makes him itch. I recently tried the cream since the prescription stuff from the Dr really wasn't helping, and his skin has looked 99% better over the 1 week I have used it. It is called Vanicream. You want the cream, not the lotion. I told my pediatrician about it this week and he said he has actually heard a few other parent's say the same thing. It might be worth a try if it gives just a little relief. You can get it at CVS and Walgreens and of course my favorite, Amazon. If you will send me an email, I will send you a thing of it for Christmas. :) Also, I am sure you know this, but be sure to apply right after a bath while she is still damp to trap in the most moisture.
http://www.amazon.com/Vanicream-Moisturizing-Cream-Dispenser-Pound/dp/B000NWGCZ2/ref=sr_1_1?ie=UTF8&qid=1355933390&sr=8-1&keywords=vanicream
I will say a prayer for your family and all of those things....
I wanted to share with you in case you haven't found it yet. My aesthitician has a son with severe food allergies and eczema. Now that he is old enough he finally gets allergy shots and it has made all the difference in the world. But in trying everything out there, she found a cream that has worked wonders for him. My son also has eczema. His isn't severe, but it is all over his little body and makes him itch. I recently tried the cream since the prescription stuff from the Dr really wasn't helping, and his skin has looked 99% better over the 1 week I have used it. It is called Vanicream. You want the cream, not the lotion. I told my pediatrician about it this week and he said he has actually heard a few other parent's say the same thing. It might be worth a try if it gives just a little relief. You can get it at CVS and Walgreens and of course my favorite, Amazon. If you will send me an email, I will send you a thing of it for Christmas. :) Also, I am sure you know this, but be sure to apply right after a bath while she is still damp to trap in the most moisture.
http://www.amazon.com/Vanicream-Moisturizing-Cream-Dispenser-Pound/dp/B000NWGCZ2/ref=sr_1_1?ie=UTF8&qid=1355933390&sr=8-1&keywords=vanicream
Thank you Sarah.
I'm glad you've found some relief for your son. Unfortunately, shots are not an option for us as most injectables carry an ingredient that would more than likely cause Norah's blood vessels to rupture, yet another reason we cannot vaccinate.
We know, for the most part, what causes Norah's skin to be like this, but we can't keep her from habitually itching. You can ask her when she is scratching whether or not she is actually itchy, and most of the time she will tell you "nope!" she just scratches out of habit. We have no idea what this latest break out is from, but hopefully we can get to her doctor soon to get it figured out.
Because she is allergic to such a wide variety of things, and I can't find ingredients for the Vanicream online, I'll have to go to the store and see what's in it. Thank you for the suggestions.
Everytime I read your posts I see so many similarities between your daughter and my niece Samantha. She has itched her skin raw for 2 years. She's almost 3 years old, and all the doctors give her is cortisone cream. We know she has some extensive allergies to things but we haven't been able to exactly pin point. She can eat dairy and drink milk but can't handle chocolate frosting? It's really strange. Her skin will break out in hives over the weirdest things. Her skin is raised and scarred over on her legs, arms, and back. I always pray over my little niece, that she would be healed. It also seems to be a stress-induced thing. I notice when she is being disciplined she INSTANTLY starts to itch! (like out of habit, as you mention with your daughter).
I am praying for you daughter, and for all the things mentioned above.
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