Thursday, December 31, 2009
Okay, so I have been feeling down quite a bit lately. Things here have been chaotic to say the least. Between financial woes, Howard finishing Grad work, gastrointestinal flu, upper respiratory infections, potty training, recovering from surgery, and just daily life, I have found myself drained and having little to offer pretty much anyone.
Sometimes it seems like when one area of life begins to show improvement, another takes a nose dive. I am guilty of sometimes losing my temper, throwing a fit, and pouting like a two year old. Quite honestly, I am ashamed. I have so much to be thankful for and the Lord has been so faithful. I have seen the hand of God this year, move in our lives and I am humbled and grateful.
Truth be told 2009 was a huge year for us. Hope was our greatest gift this year both literally and figuratively. I sit here tonight amidst my frustrations. I often think back to the days following Hope's birth. I allowed the blisters and EB diagnosis so much power. While it didn't fully steal my joy, the fear of the unknown was more than I could handle. I had no idea what Hope's new EB diagnosis meant for our family. I had researched EB after having Isaac because it was thought that he had it and I knew what we could be in for. I prayed my heart out, but knew that God would answer however He saw fit just as he did with Isaac and with Asher.
Once she was diagnosed, I devoured all the information I could, I read every blog I could find from beginning to current and I tried to be as cautious and proactive as I could be. Several times I remember being scared into a frenzy over small things and calling Geri, the EB nurse in a panic. She was always amazing and brought me down off the ledge, reminding me that there are no givens with this disorder and that we just take it as it comes. She reminded me to treat Hope normally until I had reason to treat her otherwise. I still am struggling with this and honestly still have yet to leave Hope in the care of anyone besides myself and Howard.
For me, this unknown, was Hell. I spent the whole summer keeping hope in sleepers with mittens not wanting to cause harm to her. I continued to follow many of the EB blogs I had begun reading, many of the babies are so close to Hope's age, and I was just astounded by the bravery and courage those babies had. They gave me hope that even if things got worse for Hope, that she would likely be stronger than me.
Seven months have passed as of tomorrow and Hope has yet to get another blister or sore. We are careful with diapers and clothing just because her skin is definitely more fragile and scratches easily. She has sensitive skin and we have to be very careful with soaps and lotions. We avoid band aids and adhesives. All minor things.
I continue following the blogs of other families on the EB journey and typically am a lurker. I mostly feel like I have no right offering advice or support when my baby is doing so well. I feel guilty. God knows I have had my share of heartache and am SO very thankful that Hope has defied all odds. I praise Him every day for her and for his mercy upon us and yet I can't help but feel guilty. These families are some of the most amazing people I have had the opportunity to "know".
It may seem as though I am rambling, but the reason for this post is that within the EB community there are many children suffering, many who's health care does not cover bandaging supplies because they are not a "treatment". Families who are going broke just to try and keep their precious ones as comfortable as possible. Parents who live each day knowing that their touch to their child is likely to inflict a wound or cause pain.
And Lord, my heart is breaking for every one of them. There is not a day that goes by that I am not brought to my knees for these families. This month alone I know of three babies who have died from complications of EB. While I do not know what it is like to daily care for a child who has a severe form of EB, I do know the pain of losing a child, and it is a knowledge I would never hope for anyone. It is gut wrenching to think of what these families are going through.
So tonight, on this last night of 2009, I will spend time thanking the Lord for the blessings of each of my children. I will praise him because Hope thrives, she shows no signs of EB and we are eternally grateful, but i will also pour my broken heart out to him for these families who are suffering so much. I am praying for peace for them and for a cure for EB. Will you join me? If you have a moment, click on one of the links on my sidebar under "Other Families Affected by EB" and read of the inspirational children and their families and pray for them. I assure you that you will be blessed by each of them.
When we found out Hope had EB, words cannot describe how the EB community came through for us. With care packages, information and support. I have honestly never seen anything like it. Even recently I mentioned that Hope was struggling with Eczema and a package arrived in the mail to help us deal with that. I am beyond grateful. If you have been blessed with extra money this year, please consider donating to DebRA. There are just no words to describe what they do. Or if you feel led, donate to one of the families in need of help with medical supplies.
Have a safe and happy new year!
Posted by boltefamily at 3:49 PM