Hi everyone, Sorry I didn't post anything last week. I was trying to keep it to a once a week thing to post but I missed a week. When I think about updating the blog, there is so much in my mind that I want to share, but when I sit down to write it's like I can't remember it all. So, if there is something that you have been wondering or are curious about and I haven't shared, please ask away!
We were gifted a wonderful highchair from a sweet family next door to us this week. We put Gunner in it for the first time, and he LOVES it! Gunner likes to be held with us standing up, and this allows him to be somewhat level to us and he likes it. Actually right now we are on the back porch and he is hanging out in his highchair, letting me post the blog. :)
Last Sunday, I went to church and we had a guest speaker. He has came to the church before and I liked him then, but I really listened to him Sunday and I feel like God was speaking to me. I have always been full of faith, always going to church. This may be hard to admit for some Christians, but I will openly admit, EB has really tested my faith. The devil has really been trying to get at me. And I have to admit, for a while I had been unknowingly "letting it in". Needless to say I really needed to get back into church. But anyway, I went to church on Sunday and the guest speaker was giving all kinds of testimonies about him being around the world and coming across all kinds of people at these healing meetings and God speaking to them through him. (I was thinking in my mind as he said this that I would like him to pray for Gunner.) As he was wrapping up the service, he told about a healing believer's meeting that was going to be held Sunday night. I kept hearing this voice saying "I need to take Gunner to this, I need to take Gunner." So when Cody got off from work I told him I wanted to go and he was all for it.
We got to the church Sunday night, and as we walked in, I just felt that awesome, just overwhelming feeling of God. I hadn't felt that in a long time. We started with praise and worship, I sang and raised my hands and shouted all of God's praise! I couldn't help but smile and just cry with the songs that I was singing. Not to mention Gunner liked all the lights and the band singing too :). The guest speaker came up and he prayed over all of the children that were there. Then he kept saying there are still more children that I need to pray for here! Come forward! Immediately Cody and I walked up to the front with Gunner.We didn't tell him anything about Gunner or EB when we went up there. He looked at Gunner, and just smiled and laughed. He laid his hands on him and prayed. He said in the name of God, this child will never be the same, he prayed for pain relief and a CURE!! A CURE!! How did he know that Gunner's condition needed a cure? How did he know that EB didn't have one yet. I can tell you how, GOD! God told him to pray for the cure for EB. I was amazed and balling and smiling all at the same time. He also laid hands on Cody and I and prayed for us as well.
Church really did me some good. I can just tell that my overall spirit is just lifted and my personality is just like it used to be. I'm not down and sad all the time, I'm not wondering about this or that. I just feel at peace. That is such a wonderful feeling to me.
Gunner is learning SO many new things each day. He is babbling and squealing all the time and developing quite the little personality. I can't believe that in 6 days my baby is going to be 5 months old. I say it every month but I really can't believe it. I often think back to the day Gunner was born and how our lives changed in just a single moment. Because for one, we had become parents, but for another reason, EB. I can say that I have learned more in the last 5 months than I probably have my whole life.
We still haven't heard anything about seeing a GI doctor, we are still waiting for our dermatologist to find a doctor that will help Gunner with his EB. I believe that they will find one soon. I am really praying so, because Gunner has really good days where he will eat so easily, and then he has other days like today where he is so hungry but just can't eat until a mouth blister pops.
Today, we went and visited the NICU that Gunner was in. We saw so many nurses that helped Gunner and took care of him and taught us so much as well as learning about EB themselves. It really takes someone special to take care of a baby so well with a condition that no one had ever heard of. I guess that is why they call EB "the worst disease you never heard of." BUT, while we were there at the NICU we saw the main nurse in all of Gunner's care.. Lindsey. Sweet Lindsey.
Gunner is such a blessing. Right now we are able to only keep his feet wrapped. We were wrapping his hands all the way up to a little past his elbows. While Gunner does still get blisters on his hands and fingers, I am more worried about his hands developmentally. Don't get me wrong, if his hands are bad at a certain time, we do wrap them. But blisters are going to come and go. It's almost as if we have to choose between no blisters but barely any strength in his arms and hands, or to leave them out so he can touch and grab and feel (he loves to feel daddy's prickly beard) and deal with the blisters. As another EB mother told me recently, with EB we have to throw out the "normal" baby how to book and just go with what we feel best for our son. Everything is trial and error with EB.
I saw an article on Facebook that a fellow EB mother posted as her status. It is about what it is like to have a child born with a disability after you thought the whole pregnancy that your baby was fine. It explains exactly how I felt and feel to this day. Although not everything is how we planed or pictured for when Gunner was going to get here, we have adapted and love our life as it is. I'd like to share the story:
WELCOME TO HOLLAND
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Thank you all for reading!