Wednesday, April 22, 2009

Supporting Duke

I cannot believe that Chayse will soon be turning one. It has passed so quickly. Today was my due date with her and I warped back to 365 days ago when we were waiting for her to make her entrance into this world. I was scared to death that something would happen to her and I wanted her to get here, so that I could see her face. I needed to see her face, her arms, her legs... her being healthy and whole. I could never have really fathomed the love that I would have for her a year later. When she was born, I had such a sigh of relief... she was here, alive, breathing, she was Down Syndrome free, she had a heart with all FOUR CHAMBERS, kidney's that worked, organs that functioned... Praise God for that was a huge sigh of relief that came after 42 weeks of fear and worry. We would have loved her with any health issues she had but in all honesty, our history shows we don't have healthy DS babies... we have MULTIPLE organ issues when we have them and we have MAJOR defects within the organs. I really do not think that I would have been able to handle the loss of another child. Hope's journey almost broke me, I cannot image having to do that again. To be able to enjoy her without the worry of organ defects or congestive heart failure or transplants or kidney dialysis was just overwhelming.

Chayse has truly been a blessing to us. When Hope was diagnosed with all of her health problems, we really learned what the value of a healthy baby is. Many people take them for granted everyday. Chayse is someone that I NEVER want to take for granted. She is someone I will always kiss goodnight and someone that I will love unconditionally with every fiber of by body and every ounce of my being. As we approach her first year of life coming to an end and her second year starting, we are going to give back to Duke Children's Hospital. Instead of gifts, we are doing a toy drive at her birthday party to donate to the children at Duke and we are also going to raffle off a handmade quilt for the occasion. With the money from the quilt, we are going to purchase more items for the children to play with while they are in the hospital. Hope was not alive long enough for us to learn the needs of children in hospitals so I am asking for your help. We have already spoken with the life coordinator for DCH and she said that they are in need of infant and toddler toys at this time. Are there some that are better for bed ridden children verses children who are mobile?? If you have knowledge of this, if you can give me any kind of advice on what helps children pass the time while they are on the children's floor, that would be great. I know about rattles and blocks and stuff like that... I just didn't know if there was something that often gets overlooked. Thanks for any insight you might be able to give!!


Beth.. One Blessed Nana said...

What an amazing gift of selflessness! You are such a sweet family and I am so glad that I can follow along with you on your journey.

Praying for you,

Koryn said...

What a wonderful idea! I applaud you for this selfless act of kindness which will bring such joy to others. I use to work for Discovery Toys and I recommend starting there with one of your local reps...look them up online. They have developmental open ended educational toys for infants too! My prayers are with you these next 4 months of waiting! God has a beautiful story unfolding in your life and I am grateful to get in on it! You inspire me to look upward!

Anonymous said...

I think your idea is great! However, PLEASE immediately call the Child Life dept at Duke. Like at all hospitals, I'm sure they coordinate donations to the pediatric patients. There are many things that can't be used, but many more that they'd love to have! If you contact them first, then your very generous and thoughful donation will be put to the best use!

ps. I am a child life specialist at a hospital on the East coast, and know they'll be able to direct you about this donation!

Kathryn @ Expectant Hearts said...

I saw your comment on the post at Kayleigh's blog.. Our son spent several weeks in PICU, 7 weeks when he was first born, and 5 weeks before he died.. A lot of that time he was sedated and toys weren't much of an option..

Mobile's.. visual stimulation cards, SOFT nesting toys, those soft blocks that have different textures and patterns on each side.

That's all I can come up with right now.. What I great thing you're doing to honor Hope and celebrate Chayse's birthday! (and I'll be praying for your new little one..MY birthday is 8/29!)

Anonymous said...

Mirrors are great for babies. "sassy" brand make a great one that can hang on the crib rail or be freestanding is a great choice. Also the musical soothed type things that can strap on the crib (the aquarium style is popular).