There are lots of hard, painful, moments I can tell you guys about, but the fact is they are just memories. My memories, not Trinity’s. She will never remember the pain and bleeding thank goodness. I remember waking up in the middle of the night like all new mom’s thinking my daughter is crying cause she is hungry only to find her in a puddle of her own blood because her ulcers were bleeding. I couldn’t bring her anywhere without people staring at her with a look of disgust on thier stupid faces, like she was the grosses thing they ever saw. Or the little boy in the mall calling her a monster baby to his mom and her doing everything to ignore him instead of correct him. Some of you have similar memories. BUt I also remember the month say in the hospital. She was 8 months old when she went in, but she was in so much pain she was either sleeping or crying. She wasn’t eating good. And then by the end of the month she was laughing, playing, trying to crawl, she learned to wave bye bye. IT was like someone gave me my child back. Texas Children’s hospital gave me my baby back. They made his silly little hat that she was to wear to keep the sores clean. IT was so funny looking. My best friend bough some hair srunches so we could decorate it. I hated it cause it was always falling off and she was always pulling at it, but it did make cute pictures. Lucky for us she didn’t have to wear it very long. Once a week for a year we would have to get up at 5:00 in the morning to make it to TCH for her injections. The kids didn’t seem to mine though, they loved the Hospital, it had so many toys and things to do. Now she is stubborn and all but all better. THere was light at the end of our tunnel. There will be at everyone elses too. Hold strong for your children that the people they will become.
Thank you for sharing your memories. Even though we aren’t going through as much as you and Trinity did we are still dealing with our own problems. And right now the biggest issue we have to deal with is the people staring. Olivia is such a beautiful baby regardless of the hemangioma so generally after we catch someone staring they usually say what a beautiful baby she is or something like that b/c they have been caught, but it is still hard b/c you know what they are really wondering. Surprisingly though a few people knew she had a hemangioma and seemed supportive and were able just ask questions instead of assuming. I hope and prayer that the day comes where we can just look back at these times as memories as you are able to do now.
I am so glad to have been directed to Careplace and this group. Trinity’s Mom your story is inspiring! I am sure you will help many moms.
Karla
I wanted to join this site to be able to spread the words “don’t give up, one day the pain and stares and upset will all end”. I wish there had been someone to reasure me when Trinity was a baby. Even her Doctor was no support at all. He had never seen one as bad as hers and really didn’t know what to do to fix it. Thank you for your kind words and I don’t only hope the best for everyone, I know in my heart and from experience that it will all be ok. Two plastic surgeries later Trinity is doing and looking wonderful.