Living up to Her Name

Two years ago we were blessed with one (of five) of the greatest gifts of our life. We thought we had it all planned out. Howard was scheduled to have his last day of school June 1, and we were planning on having June 2nd as a day to celebrate our anniversary and just spend time together. My c section was scheduled for June 3rd and we were so excited. Little did we know...this is not how Hope rolls.

As Howard got ready for work June 1, I remarked on how horribly I slept because I was having cramps all night. A couple of times I had to catch my breath as I helped pack his things for the day. He asked if I was okay. I assured him it was nothing...Braxton Hicks get stronger with each pregnancy and this WAS my fifth.

He headed to school and I went on with my day. As I got breakfast for the boys I found myself needing to sit down. My back was killing me. Then I had a flashback. I had no idea I was in labor with Ben but it did feel something like this. YIKES! I began timing contractions. We live about 40 minutes from the hospital so I was told as soon as they were every 10 minutes or regular at all really to come in and they would get me in for the c section. They were every 8. I called for babysitter help and called Howard, who had just gotten his school day started. He came home and we headed in so I could be checked.

I was put on the monitors for a while and it was confirmed that I was contracting regularly and pretty strong. (You know because you need monitors to tell you that) The nurse was ready to send me home to continue to labor. I began to cry and asked to see a doctor. I did not want to labor only to have to had a c section and was assured that if I was in labor the c section would happen. They obliged and squeezed me in for a quick check by Dr. J. She delivered Isaac and I swear my PTSD kicked in. She said that I was four centimeters and should probably just head over to the hospital.

We headed to the hospital where nurses once again hooked me up to monitors for a while. I was then told that they weren't sure they would do anything terribly soon. Dr. S came in. He is no nonsense and a God send. He breezed in and said, "Hey honey...you ready to have this baby?" I said I was and he said, "Get her ready...let's have a baby!"

From there things flew! I trembled in fear as I remembered my two previous c sections. Both ending with a dead baby. Dr. S had delivered Asher and was beyond fabulous. He had also been there after I had Isaac and was again STELLAR! I knew he was the best and more than competent. I cried as he came in to have me sign the forms, with all the crazy scary stuff. He grabbed my face and looked right in my eyes and said, "Kristy, you are going to be fine. NONE of this is going to happen to you. I promise."

She was born at 2:22 pm (Asher's birthday is 2/22) :) She was amazing and I had a bit of a hold up in recovery (that may have involved a nurse miscounting instruments and xrays having to be done to be sure i didn't have one sewn up in me) Holding Hope was magical. She was perfect.

The following day was tough. I felt attacked on all sides as we once again feared for the life of our flesh and blood. She was diagnosed with Epidermolysis Bullosa and her future was uncertain. Life was a roller coaster in those first few days. A baby's first week should not include bandages, biopsies, and wound care.





The truth of the matter that many people do live with EB. They endure pain and suffering and go right on living, probably more fully than most of us ever dream of. I have hated EB and what it took from us in those first few weeks. I am happy to say that though Hope's skin does seem more fragile than a typical child, she is doing awesome. I cannot complain. She does not have to endure painful baths, blister lancing and bandaging. She lives up to her name more than she will ever know.

My heart still breaks though because for some children, EB affects everything for them. For some children it means insane amounts of pain and limitations. The simple things we take for granted are not so simple for a person living with EB. While my heart breaks for them, I have been immensely blessed by the EB community. I am here to tell you there is nothing like it. In those first few weeks we were inundated with support, supplies and information. We were loved and taught what it meant to live moment by moment.
Hope has blessed us beyond what we could ever imagine. She has taught us so much and has opened our eyes to EB. It isn't a well known disorder and we have got to get the word out. EB sucks. We have got to find a cure. To do that money is needed and the word needs to be spread.

In honor of Hope's second birthday, I'd be honored if you would:

1. Consider donating to the Cannell family's adoption of two sweet boys with EB who live on the other side of the world and have never known the love of a family.

2. Consider donating to Debra to help support families who are affected by EB and help find a cure.

3. Get the word out. Tell someone about EB.

4. Pray for all of those affected by EB.

I would love it if you would consider choosing one of these things we can do to make a difference.

Happy Birthday sweet Hope Amelia. I am so thankful that I get to be your mama and I cannot thank you enough for helping to make me a better person.