Sunday, February 14, 2010

CHD Awareness Week

The week of February 7-14 is Congenital Heart Defect Awareness Week. Every year the heart community spends this week sharing facts, stories, awareness and encouragement. While I will share with my readers that 1 out of 125 children is born with a congenital heart defect and that approximately 40,000 babies are born with CHD in the US each year, I think that most people who read this blog are already aware of these facts, because we are living with CHD everyday. We have all experienced that one terrible day, the day we found out that our children were not perfectly healthy and would require surgical intervention if they hoped to have a life with us. We have spent many nights in the hospital as our children’s little bodies worked hard to recover, we have spent so many days in doctor’s offices, or on the phone advocating for our little ones. We fight the insurance companies, we push to be heard, and we do it all for the love of our precious kids.


This week typically gets me down. Partly because right in the middle of CHD Awareness Week is Drew’s birthday. And with his birthday comes the memories of the most difficult time of my life, the week between his birth and his first open-heart surgery. During this week it seems I can not escape the stories of diagnosis, surgeries, complications and how many children don’t survive their CHD. All in the name of awareness, but I sometimes think I am too aware. It brings those feelings right back to the surface, in full force. But, this year was better. I had a few moments on Drew’s birthday, but made it through the rest of the week without letting those feelings get a foothold.

Instead of dwelling on the tragedy of CHDs, I am trying to focus on how I can make a difference. Earlier this week our support group, Hearts of Hope, put together baskets full of delicious treats to say thank you to the cardiologists, surgeons and nurses who take such good care of our children. Our family delivered the baskets to UC Davis on Wednesday and it was fun to see how excited they were to receive them.



We are also organizing a care package donation drive to collect items for our care packages that go out to families who have children recovering from heart surgery in our community. If you are able to donate any of the following items, please contact me and I will arrange a pick-up. {toothbrushes (in individual packages), dental floss, travel size shampoo & conditioner, deodorant, mouthwash, hand lotion, small hand sanitizer, pocket combs, pens, small non-perishable snacks}

Today we are continuing with our family tradition of bringing balloons to all the children in the hospital at UC Davis. My minivan is packed with 100 red heart balloons and we will be delivering them to the kids later today. We are also bringing thank you treats for the nurses and crafts to do with the kids in the playroom.


Last night we attended the Camp Taylor Fundraiser Dinner. What a night! We had the best time and loved the silent and live auctions. There were some tears though, listening to the kids talk about their lives and how much attending camp has made a difference to them was emotional! These kids are absolutely amazing. I’m glad that we could help this organization.


I am curious about what everyone else is doing this week. Leave me a comment and share how you spend CHD Awareness Week.

5 comments:

Leslie said...

this is an amazing time of year for your blog readers that love to see the great things you do for the community. and how great that this year commemorates a surg-free one for drew! amazing. lots of love to you guys!!

kritiostodd said...

I'm so glad you had a "better" time this year celebrating heart week and Drew's birthday. I was thinking about you :-)

Jen

Chez Family said...

HI there! I'm always reading your updates and I am so bad on not ever leaving a comment. I'm sorry :( Life just never seems to give us enough time. However, I wanted to make sure to send a note this time. This post really touched my heart because I felt the same way about CHD week. Gracie and Luke's birthday is Feb. 9th and Gracie's first open heart surgery was on Feb. 14th. All the memories made it so hard to get through this time and even when we started up the foundation I tried to not let it bring me down but it always did. I'm sorry you had to go through all the same feelings. My heart hurts for all that you and your family have had to endure. However, it is rejoicing right now that you had such a great experience this week. Seeing Drew's picture brought tears to my eyes, because he is such an amazingly strong and adorable kid! So brave and what a perfect way to celebrate CHD week by looking at him! Drew and all the other heart kids remind us that CHD week should be a time of celebrating and a time to be thankful for all the new medical advances that have been made. Thank you for sharing and putting a smile on my heart :) Happy Belated birthday Drew!
Love,
Terra

lindsey said...

Hi!

I just wanted to let you know that I recently found your blog and have received so much encouragement from it. Our daughter was born with pretty much the same diagnosis as Drew...IAA, VSD, and DiGeorge. She is such a blessing and truly a miracle! She is doing so very well, and we can only thank our Lord for always proving faithful...every step of the way!! Seeing how well Drew is doing is just further confirmation that she is a healthy girl with such an amazing life ahead of her! Thanks again, and I hope you continue to post...it's a blessing to me!

Your children are just adorable!

Much love,
Lindsey

Ashley Drury said...

I love how involved you are with CHD ... spreading awareness is amazing. I would love to share Drew's story on my blog. I, too, and a patient with a heart condition. Now 26, I go in for my second open heart surgery on February 9th. Please check out my blog, and let me know if you would allow me to share his story. Thank you!
-ashley