I am a 30ish year old mom of five precious boys and one sweet girl. Four of our children are here with us and two are in the arms of Jesus. Our sweet baby girl Hope was diagnosed with Dystrophic Epdermolysis Bullosa and our youngest son came to us through adoption, the Lord has shown us just how Faithful He is. We will continue to Journey and follow Him where ever He leads. We feel very blessed that God chose us to be the parents of each of our kids, and we look forward to what He has in store for us in foster care!
Such proud big brothers. They cannot get enough of her!
Mommy, blissful in recovery.
First I want to thank each and every one of you for your prayers and well wishes for our family. They mean more than you could know. The past few days have been tough for me. Though Hope is doing well, my heart has been sick with fear. It is so good to know so many people are storming the Gates of Heaven on our behalf. I am so humbled.
I have been overwhelmed with the sheer number of comments and emails you have sent and it has truly lifted my spirits in ways you could not even imagine. SOO...now that I have the attention of SO many people, allow me to share my sweet daughter with you!
She is just amazing and has brought so much joy to our lives already. We know God certainly hand picked her for our family! We are so excited to have her here.
Now I know many of you are wondering how our appointment went....so here is what I know and how I feel in a nutshell:
She was born without a mark on her. It was the day after her birth that the doctor noticed the first blister on her ankle from her name band. He brought it to our attention remembering that Isaac had similar blisters. At that moment my heart sank. I had been on such a high thinking that we were headed for easy street for a while and then my dream of "easy street" came crashing down yet again.
The next day he checked her again and no new blisters had developed. He said we would just keep an eye and that we would be referred to a dermatologist to be safe. Then, the nurses came and got her to do some tests. I asked them to please not use tape or bandaids on her skin as we knew the tape caused irritation.
(Enter extreme frustration) The nurses did not listen and used both tape and a bandaid. Two more blisters appeared almost instantly. Now, I was in a panic and angry that no one had listened to me. We then made a sign on her bassinet that said NO TAPE OR BANDAIDS PLEASE.
We spoke with our pediatrician before leaving the hospital yesterday and he seemed optimistic. He had mentioned EB or EpidermolysisBullosa but didn't think it was a possibility as we had had Isaac tested for that and the results were negative. He made us the appointment that we went to today.
Today, we met with two great pediatric dermatologists who work for the Children's Hospital of Pittsburgh. They were encouraging and great but they are really thinking EB. Interestingly they are very surprised and even annoyed that we have not already (Howard and myself) been through genetic testing and they are referring us to the Cleveland Clinic for genetic testing. They are really thinking that there is a genetic disorder that we carry that includes the EB and the brain abnormalities. They are thinking it could be an X linked disease which would mean that a female child would not get the disease in it's full form so that would be Hope's case. Where the disease proved fatal for Isaac and Asher it would not necessarily for their sister.
As of now, Hope has blisters on her feet and a couple tiny ones on her fingers. She doesn't really seem bothered by them until we have to change the dressing on them. IF in fact she has EB there is a huge spectrum of severity of the disorder. Some children are mildly affected and even "grow out of" a lot of the blistering, while others have a debilitating form that can be fatal. They are thinking that IF she has this it is more likely on the mild end of things as her blisters seem to be localized. We shall see.
Now all that said, and really that is all nothing because we won't know for two to three weeks what is really up as the biopsy results will not be back until then...I have been very frustrated. I have in fact been allowing this looming diagnosis to steal the joy from my heart. I have been missing out on the blessing the Lord has placed in my arms because I have focused so much on the problem rather than the perfection.
Friends, God and I had a heart to heart on the way home from Pittsburgh today. I whined and moaned and poor me -d and God listened and then as I looked into the beautiful face of my fifth baby he reminded me that He chose her for me and me for her. Children are a gift. Not just some children, not just children free from disability, all children. She is my gift. She is perfect. Just as she is. Sitting around wishing for the "perfect" babies others seem to have is not going to do me any good. I need to embrace the perfection right in front of my face and not waste another minute.
I have no idea what the Lord has in store for Hope. What I do know is that whatever plans he has, are good. She is just as perfect as every other one of His creation. He knitted her together just the way he wanted her. We will embrace whatever that is and love her with everything we have.
We are hoping that Hope is healed from this skin problem, but we know that no matter what happens, God is in control and he will use this for His good purpose and we are trusting in Him and holding onto that promise.
Please continue to pray for Hope's healing and for our family. I do believe He hears us and I have never felt more loved or supported and am so thankful that Hope is already so loved and prayed for!
Go ahead and mention my child, The one that died, you know. Don't worry about hurting me further. The depth of my pain doesn't show. Don't worry about making me cry. I'm already crying inside. Help me to heal by releasing The tears that I try to hide. I'm hurt when you just keep silent, Pretending she didn't exist. I'd rather you mention my child, Knowing that she has been missed. You asked me how I was doing. I say "pretty good" or "fine". But healing is something ongoing I feel it will take a lifetime. ~ Elizabeth Dent ~
"When I Lay My Isaac Down" - Carol Kent "The One Year Book of Hope" - Nancy Guthrie "Holding on to Hope" - Nancy Guthrie "Empty Cradle Broken Heart" - Deborah Davis "Waiting With Gabriel" - Amy Kuebelbeck "Streams in the Desert" - LB Cowman "It Takes a Parent" - Betsy Hart "I'll Hold You in Heaven" - Jack Hayford "Crazy Love" Francis Chan "Radical" David Platt