Honoring my sweet Angel Grace and her beautiful Smile.

I have had a hard time taking the strength to write. On March 29th, my beautiful Grace would have been 10 years old. I did not want to get out of bed that morning but my little Emma gave me that push. Then before I knew it my doorbell rang and my sister's, nephews and parents were all giving me the strength to get through this heart wrenching day. We went to the cemetery and sang to her. Emma was so excited to celebrate her sister's birthday. I can't put into words how deeply I miss her voice, her smell and the touch of her hair. I know we will be together someday but I can't help but dream of that moment when I can hug and kiss my angel. I did put some decorations up because Emma knows her sister and wants to celebrate her birthday as well. I just miss the excitement on Grace's face seeing the house full of all her favorite colors and balloons and whatever theme was that year! Just so you know, discussion would start months before on what cake Aunt Kathy would make nd where it would take place. Aunt Kathy's cake would always be the highlite! I dream of Grace dancing in heaven and eating lots of cake! My idea of heaven is one of ultimate peace. We have been to Disney many times with Grace. It was one of the only places where she felt truly happy. Grace knew that their were no doctors, hospitals. Grace knew mommy and daddy would be with her and that we were not on any time constraints. Disney made her smile. I take those memories and hold them close. I picture Grace in heaven smiling like she did in Disney. I pictur Michael's face each time we were waiting to go on the Toystory ride. Smiles are priceless!! For awhile I felt like I was not doing much to keep Grace's memory alive. So I prayed to her and asked what I should be doing to allow others to experience those incredible smiles. So last month on her 10th birthday we launched the Smile Fund with Debra. Grace's MooPa, Mee-Ma, Aunt Kathy, Uncle Dylan, Aunt Monkey, Nurse and Friend Donna and wonderful friends Denise and Mat have all joined in this wonderful cause. I can't thank them enough for helping bring smiles to other EB kids in honor of Grace. As EB families know this disease effects the whole family and support group. Everyone feels helpless and frustrated. Watching someone you love in constant pain and itch is awful. Grace's support system was incredible. These people would put their needs on hold and show uh compassion and true love to Grace and to Michael and I. I am blessed because these people have also helped me face each day when most days I want to just crumble. These gifts were there when Michael passed away in September and once again I felt my heart break away. How do you thank someone who gives you more than you could ever give them? I can't wait until we grant our first wish in May. I will do it all for my sweet Angel Grace. Go th Debra's website for more information on this wonderful fund! Who wouldn't want to make a child smile. Life is sure filled with so many ups and downs. But I know that this life is just a journey and all the pin is temporary. Someday their will be no pain, no more questions and forever will be a reality. So until the I enjoy the little things. My little Emma growing up to be a beautiful girl. Loving clothes and making the world laugh. She is my miracle and I enjoy and love being her mommy. I live to make her proud of me and that is my ultimate goal. It doesn't matter what job I do or what I wear it's the people I help or make a difference for that will be my passion. Grace's bravery and strength was outstanding. She showed love even though she was in pain. I can do the same. So when more struggles approach I shall take the attitude that it is what it is! Thank you to all who have reached out to me an lended your support. I do appreciate it. For thoses who have walked away for one reason or another, I wish you never experience the pain I have had. I wish you could see life for what it is PRECIOUS! I will always love Grace and Michael and they are forever apart of Emma and I. I will always celebrate them and cherish their memories no matter how painful this may be.

Milestones celebrated in my heart

February 22 would have been Michaels 40 th birthday. Emma and I went to the cemetery to visit. Emma sang Happy Birthday to her daddy. This will never get easy. It's the hardest thing to not be able to see your loved ones. I do have faith and know that we will be together someday but Somedays that doesn't Make the pain go away Peshkur lessen. I do wonder sometimes why thing happen. Your told God only gives you what you can handle. I will never agree with that. I do not believe it was God who took my husband and daughter away. I do believe things just happen. March begins as a rough time. I should be sending out invitations to Graces 10th birthday party. Instead I am wondering what she would want for her birthday. What kind of party she would want and who would her friends be. It gets harder as the years go by and you feel like you don't know your child. Grace loved All things Disney. Loved the color pink. Loved pizza and loved clothes. This was almost 3 years ago. How would she look now? Grace's birthday was always a big celebration in our house. Each year the parties got bigger and bigger. Whatever she wanted she had. We always knew someday they would end. I would decorate every room of the house. Grace celebrated for days and knew how much she was loved. To just stop is not something I can do. Grace will always be my daughter and Emma's sister. But it also reminds me of all her struggles her on earth. Recessive Dystrophic Epidermolysis Bullosa is the worst words I can hear. It brings back images of my sweet innocent angel shaking in pain during brutal dressing changes. Images of Grace lying on a table waiting for her endless surgeries. Images of me feeling helpless that I could not take away the awful pain and itch. I am faced with too much sadness. Somehow I am expected to rise up and put a smile on my face. Well to be honest Somedays and nights I can't. Somedays my precious Emma Gets me through but showing me her beautiful smile. Emma Gray was born 2 days after Grace passed away. Yes you read right! My luck just keeps on giving. Emma is a miracle that I will cherish forever. Somedays she asks me why are you crying mommy? I tell her I miss sissy and daddy and she gives me the biggest kiss and hug. She has her daddy's personality. Emma has to be the center of attention and loves to make you laugh. Keeping my angels in my heart and still apart of our family has empowered me to make the best of my life her on earth. I know life is bigger than our human life. So instead on dwelling on why did this all have to happen to me. I draw strength from them. I think of all Grace went through and know I can handle whatever comes my way. I was blessed, I was loved so much by them. My job is to keep their memory alive and share with Emma the remarkable blessing Grace was and is. Tell her stories how her Daddy loves her. Some people may think I am crazy for celebrating their birthdays but I need to do this for us. My advice to others is to always follow your heart. Until you are faced with holding your child's lifeless body for the last time knowing you will never hear her sweet voice, stroke her hair, sing to her. Until you hear the words that your husband passed away. You can't judge. I had to bury 2 people I thought I would be with forever. Cherish your loved ones! don't wait until tomorrow.

Where does strength come from?

Today I sit here in my home waiting to here when my nephew will make his grand enterence in the world. My sister Kathy and my wonderful husband Dylan are having their fourth child, Ryan Dylan. I am filled with such love and happiness for them. They are a beautiful family and deserve such joy. It brings back many feelings for me. On March 29, 2002. I was in the same place, same hospital. I was in labor with my first child. So many hopes and dreams. I didn't know what the future would become but I knew I wanted to be a mother so deeply. I can remember the day so intensely. Grace was born around 3pm, Good Friday. Michael and I were overwhelmed when we heard her scream and knew our baby girl, Grace Catherine, was ours forever. The doctor was concerned about some blisters and skin that was missing from various places on her body. It seemed to be getting worse. Our emotions immediately turned to fear. The love you have for your child is so intense, you really can't put it into words. 3 hours later, the doctor told us they were going to transport Grace to the university hospital because they were better equipped to take care of her. No word what was going on just alot of questions. I was still so numb from the epidermal that the nurses had to wheel me into the nursery to say goodby to my baby. This was unreal and so heartbreaking. Michael went with Grace, while I had to stay back. That night Grace was observed and poked and prodded so much. I was discharged the next morning and Michael brought me to the the hospital to see her. She was in the NICU. Grace had lots of dressings on and she was hooked up to a IV. The doctors still had no clue what was going on. It was days later that they sat us don and told us it was one of 2 things. Scolded Skin Syndrome or Epidermolysis Bullosa. My mom knew it was the second. Somehow moms always know! We were confused and frightened. My mom quickly did tons of research and educated us on Epidermolysis Bullsa. Thanks to her we were able to put a proper treatment plan in place and had phone numbers to contact people who were familiar with this awful disease. From that moment on our lives would revolve around EB 24 hours a day 7 days a week. I was trying to process all that was happening and I could not comprehend anything. I felt like a robot just going through the emotions. 14 days later we finally were able to take Grace home. Not knowing how long we had. We had lots of different dressings, creams and medicines delivered to the house. Graces changing table became a dressing table, clothes were returned because the fabric was not cotton and my parents redid her car seat so that she would not have any skin slough off. Life was not what I expected. Grace was my heart from the moment I found out I was pregnant. I was so sad that I had to cause her pain each time I had to do the 2 to 3 hour dressing change. Where would I get the strength when all I wanted to do was to stay in bed. Then I would look in Grace's eyes and see such beauty. She was and always will be Gods precious love to me. Strength is a miraculous! It shows up in people around you when you don't have it. It reminds me of the footprints prayer. God carries us when we need him too! Thank you to all my family and friends for my strength.