It is tough to describe the heaviness that I have been feeling in my heart lately. I feel such a rush of conflicting emotions and sometimes I am finding them hard to process. My heart has been so heavy for the Ringgold family. I know all too well the pain of letting go of something so precious. I too have had to learn how to go on and live after losing so much. It sucks. It sucks the life right out of you. Grieving a child is a full time job and it is exhausting. My heart breaks for all they are going through and yet I know that it is in this place that they will see the hand of God move in a mighty way. It is strange, I feel like I miss Bella too and I have never even met her. She was just four days older than Hope and I have been following her journey for so long.
My heart also hurts for Tripp and his family as they are trying to figure out how to best care for him. He is one of the strongest little guys I have ever "known". He is battling an infection right now and could really use your prayers.
I am also in love with baby Jonah, he was the first EB baby I followed. When I had posted about Hope's condition before she was diagnosed so many of you pointed me in their direction and I am so grateful. Their blog gave me hope. Hope that even if things got worse with Hope's condition that we would still find joy. Though Jonah endures a lot and his mommy and daddy struggle, it is so apparent that they are grateful for him and love him so much.
Each of these kids live each day with a grace that is unfathomable to me. Even a loving touch can cause blistering and pain. Something as simple as feeding them breakfast can be a major ordeal. EB SUCKS! It is a horrible disorder.
After bringing Hope home from the hospital I can remember being gripped with fear. Fear of everything, fear of holding her, feeding her, bathing her, strapping her in her car seat, fear if she cried differently, fear of the boys touching her, I was on edge ALL the time. I had no idea how severe or mild her condition would be. That fear distracted me from a lot of the simple pleasures of newborn-ness. I hated EB then. Isaac had EB. Isaac's EB was worse than Hope's. He had blisters in his mouth, his diaper area, all over, likely because he required an incubator and lots of sticky stuff on his skin and we had no idea what EB was and the hospital had no clue as to how to handle it.
I say all of this because now, I rejoice that Hope has done so well. I am overflowing with gratitude that when I took her to the dermatologist last week they were amazed and astounded by her. Howard has a cousin who has also had a baby who has EB and their baby is doing as well as Hope. I am so thankful. I am thankful that Hope eats normal food, wears normal clothes, and aside from choosing her shoes carefully, not using band aids and being a little gentle, we make no other accommodations. Seriously, each day when I dress her I praise God that I am putting cute clothes on her and NOT changing bandages anymore. We are blessed.
And yet, with that gratitude comes a host of guilt. I feel guilty that Hope has exceeded all of our expectations while others are still suffering. I read the stories of these other EB babies and feel that any words I might offer are inadequate because I cannot fully comprehend their pain even though I too am a mom of two EB babies. I really have NO idea just how tough it is to care for an EB patient, because I never got to care for Isaac and Hope (aside from bandaging her legs the first six weeks of life) requires no special care (she IS spoiled ROTTEN).
My heart is heavy for these families and many others and I spend much time in prayer each day for each of them. For their hearts, for their health, and for their healing. I come here today asking that you too might pray for these families and all families dealing with Epidermolysis Bullosa. It is a disorder that so few know anything about. Just the thought of a trip to the ER with an EB baby is terrifying because medical care could do more harm than good. I can also say that within the EB community there is support like nowhere else. When Hope was born we were inundated with support, packages with wound care supplies, soft blankies, diapers, information, you name it. They are a group of absolutely amazing people. DEBRA is an organization that supports families dealing with EB. They have a nurse educator who is AMAZING and who I called on several occasions in a panic, who brought me down from the ledge and reminded me to enjoy Hope. They sent packages and information and were such a comfort to me in those days of fear and the unknown. As you pray for these families if you feel led to donate to DEBRA, in honor of these EB babies that would be great! Your support would be greatly appreciated! Please pass the word on...lets educate people out there about EB! Please visit the blogs of these families and offer your support and prayers. They are some of the most inspiring and amazing families out there!