I received 2 questions that I definitely wanted to post here! Please feel free to go there and ask me anything! I have no way of finding out who asked me what!
How much does Gabriella know about her condition? How have you dealt with explaining why she has lost her speech?
I'll never forget, when Gabriella had her stroke, my pediatrician told us that the reason he loves working with kids is that they don't have an acceptance for being ill, like adults do.
Gabriella, from the beginning, understands her heart is very special. She was just over 4 when she was diagnosed, so we had to be very gentle and careful with what we told her as to not scare her. The way we explained ECHOs and EKGs was to tell her that her doctors wanted to look at her heart because it was so special. Blood work was because they needed to check to make sure she was healthy enough. As things got more serious, we explained that doctors needed to fix her heart to make it perfect. During an interview with a news station, when asked what she knew about her heart, she said "Doctors are going to make it sparkly" and so the phrase was keyed by her. We went to Loma Linda for her listing appointment in August and she knew we were going to fly to that hospital and thats where they would fix her heart.
Then she had her stroke, at just 4 and a half. Our immediate way to explaining it to her was that she got an owie in her head and that she was like the little mermaid and lost her voice. We made it a point to constantly ensure her that it didn't happen because of anything she did wrong, that is just happened and that she was so strong that we would work hard to get her words back.
Now that she is a little over 5 and has faced a lot of things most grown adults have never experienced, I think her understanding is growing. Though we never told her SHE was different from other kids, she will often point out her special arm, her voice and her heart in scenarios that she is explaining why she is different. I use the word special, because that she is. Different can have a negative connotation, and I never want her to settle for thinking she is any less worthy of anything than a child who can efficiently use both hands or speak.
I had a very difficult time for quite some time deciding how much to tell her about heart transplant. Telling her too much could scare her to absolute ruins and make clinic appointments, or even the travel when we get the actual call, unbearable. It has also been proven that having a positive mind going into a surgery dramatically improves your tolerance of surgery and recovery afterwards. But telling her nothing would be lying to her. So with a lot of research and consulting with others, I think we have a safe communication about the transplant. She knows theres a problem, she knows we need to fix it... but does not know the process of replacing the heart. I actually bought a book on Amazon about explaining heart transplant to children. I plan on showing her afterwards and having some very honest conversations with her. I will have to explain the mark down her chest and the massive amount of medications compared to the mere 5 she is on now. But after seeing how she responded with so much trust after her stroke to therapies and twice daily injections, I know she will be able to handle this.
The hardest part for my mommy heart? That my baby has to grow up this fast.
Does this $ go dirctly to Gabriella care or others? not that i wont help others...I just really touched by her face tonight! I was a preschool teacher and No child should ever have to go thru this! best wishes
All donations go directly into Gabriella's medical expense account and used for expenses related to both her stroke and heart transplant. We have had fundraisers for her and they came to be the biggest blessing to us with her unexpected stroke and therapies!
One day we will start a non-for profit organization/ ministry and raise funds to help other families who struggle due to their child's illness with lifes necessities. It's kinda become a dream of ours and we know it is God directing us to do so! But all Gabriella's medical donations will remain separate from this. She/ we will have a lifetime of financial burden with medications and rejection tests, so there will always be a need for her!