Hope Beads...
Hope Beads are much like the badges Girl Scouts get. Each bead symbolizes a pivotal moment in the child's hospital journey. The child can wear the necklace like a badge of honor or their parents can proudly display their journey.
Mylah has 2 Hope Bead necklaces. One she received when she came out of her open heart surgery and her 2nd once she returned to the PCTU on July 24th. I've been meaning to add to Mylah's necklace since we've been on the Stable Ventilation Unit but it seems to slip my mind.
When I leave the hospital I usually wear Mylah's Hope Bead necklace because I've also attached my parent badge to it, so it's easier to remember. Someone joked recently that I wear it like a work badge. I've been many places with the necklace on but no one has ever said anything about it. Most times I forget it's there.
Today at Cracker Barrel while ordering my food our waitress asked about the necklace. I'm so used to wearing it that when she asked me about it I looked down like "huh". Then she said "the beads". She went on to explain that her niece had a Hope Bead necklace from Mott's. She had a rare form of leukemia, had a bone marrow transplant, but sadly lost her battle with the disease. She asked me some things about Mylah; what was she there for, what floors were we on etc. She took our orders, & brought our beverages. At the end of our meal she came back and asked if we were headed back to the hospital. I replied that we were and that Toya and I remained at the hospital and Juwan would eventually go back home. She said that her sister worked for the hospital and was able to still work and tend to her daughter & her brother in law ironically was laid off so they were able to be there for their daughter and spend lots of time with her. Her niece was in the hospital 14 months the duration of her life.
When she left it was silent for a little while. Then Juwan said what I think we were all thinking. "Just when you think YOUR situation is bad there is always something to make you realize that it's not as bad as it could be". He took the words right out of my mouth. We have been here at the hospital since Thursday, July 5, 2012. It's been 66 days. 14 months is 426 days. They were in the hospital with their daughter 6 times more than us as of today.
While she was gone I had been going through Juwan's phone looking at his pictures of Mylah, because it seems like he has all the GOOD pics. She came back with a box of food for us to take back to the hospital. I showed her a picture of Mylah. She smiled, I smiled, then she turned red. She asked me my daughters name and quickly scribbled it on her order pad. As her voice cracked she said that Mylah was beautiful & she would be adding her to the her prayer list. She immediately walked away. I could tell she had began to cry but wanted to rush away before the tears started rolling.
As we prepared to leave the manager came up to us. She noticed that our server had been crying and she explained that the staff loved her niece who she was still understandably grieving over. She wanted us to know that she would be praying for Mylah. She gave me a hug and expressed that she knew that prayer could change things. Which I was quick to agree on. She asked that we come back in to give them a report on Mylah.
I was so touched by this encounter today. Sometimes you can find yourself feeling lonely or isolated. Not many people travel the road we are on. Many will never know what it's like to have your life turn completely around. Some will never understand how it feels to enter the walls of a hospital, not to visit or attend an appointment, but to have to set up your own living quarters in your child's room, camping out day after day still trying to find some sort of "normalcy" in it all. A lot of our family and friends won't comprehend why we can't just find a babysitter and get out once Mylah is home.
Although I'm saddened by the loss of our servers niece & I will keep her in our prayers, it was comforting to know that she knew how we felt. She eased my heart a little and I will always remember her for that.
Mylah has 2 Hope Bead necklaces. One she received when she came out of her open heart surgery and her 2nd once she returned to the PCTU on July 24th. I've been meaning to add to Mylah's necklace since we've been on the Stable Ventilation Unit but it seems to slip my mind.
When I leave the hospital I usually wear Mylah's Hope Bead necklace because I've also attached my parent badge to it, so it's easier to remember. Someone joked recently that I wear it like a work badge. I've been many places with the necklace on but no one has ever said anything about it. Most times I forget it's there.
Today at Cracker Barrel while ordering my food our waitress asked about the necklace. I'm so used to wearing it that when she asked me about it I looked down like "huh". Then she said "the beads". She went on to explain that her niece had a Hope Bead necklace from Mott's. She had a rare form of leukemia, had a bone marrow transplant, but sadly lost her battle with the disease. She asked me some things about Mylah; what was she there for, what floors were we on etc. She took our orders, & brought our beverages. At the end of our meal she came back and asked if we were headed back to the hospital. I replied that we were and that Toya and I remained at the hospital and Juwan would eventually go back home. She said that her sister worked for the hospital and was able to still work and tend to her daughter & her brother in law ironically was laid off so they were able to be there for their daughter and spend lots of time with her. Her niece was in the hospital 14 months the duration of her life.
When she left it was silent for a little while. Then Juwan said what I think we were all thinking. "Just when you think YOUR situation is bad there is always something to make you realize that it's not as bad as it could be". He took the words right out of my mouth. We have been here at the hospital since Thursday, July 5, 2012. It's been 66 days. 14 months is 426 days. They were in the hospital with their daughter 6 times more than us as of today.
While she was gone I had been going through Juwan's phone looking at his pictures of Mylah, because it seems like he has all the GOOD pics. She came back with a box of food for us to take back to the hospital. I showed her a picture of Mylah. She smiled, I smiled, then she turned red. She asked me my daughters name and quickly scribbled it on her order pad. As her voice cracked she said that Mylah was beautiful & she would be adding her to the her prayer list. She immediately walked away. I could tell she had began to cry but wanted to rush away before the tears started rolling.
As we prepared to leave the manager came up to us. She noticed that our server had been crying and she explained that the staff loved her niece who she was still understandably grieving over. She wanted us to know that she would be praying for Mylah. She gave me a hug and expressed that she knew that prayer could change things. Which I was quick to agree on. She asked that we come back in to give them a report on Mylah.
I was so touched by this encounter today. Sometimes you can find yourself feeling lonely or isolated. Not many people travel the road we are on. Many will never know what it's like to have your life turn completely around. Some will never understand how it feels to enter the walls of a hospital, not to visit or attend an appointment, but to have to set up your own living quarters in your child's room, camping out day after day still trying to find some sort of "normalcy" in it all. A lot of our family and friends won't comprehend why we can't just find a babysitter and get out once Mylah is home.
Although I'm saddened by the loss of our servers niece & I will keep her in our prayers, it was comforting to know that she knew how we felt. She eased my heart a little and I will always remember her for that.
Very touching! Praying for you and your family xoxo
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