"Nothing is worth more than this day." ~by Goethe
One of the biggest lessons I've learned through having a child with a broken heart has been the value of time. Since we began this journey almost 2 1/2 years ago, time has become more precious to me than it ever was. I've learned to relish my everyday routine as a mom and wife and all of the little, ordinary moments that I used to take for granted. My ideal day is just being home with my kids and Bryan, with nothing planned and just b-e-i-n-g. This is when my heart is filled with so much gratitude and thanksgiving. None of us know how much time we'll have here, and when your child is in a high-risk category, you value the time even more.
But with my awareness of the quick passing of time, I feel like it can't pass quick enough sometimes. I dread Maddie's next surgery but want it over with. I pray that researchers and doctors can find an "easier" more long-term fix for my daughter. But for now, a
gortex conduit and usage of only 1/2 of her existing heart has to suffice. I read a quote from the Funky Heart blog today that was titled "
Fontan" and the last line of his post struck me... a 2008 article stated “this imperfect circulation would still be the only surgical option for this difficult patient population.” Maddie fits in this population with her imperfect heart and imperfect circulation. And this deeply saddens me. They are still using the same surgical "idea" for this population of kids born with single ventricle
anomalies since 1971.
Although it's been revised many times over, it's not a fix or cure, it's not the best and in the end, it's just a
Fontan. It's all they can do for her. And if her
Fontan fails, her only recourse will be a heart transplant.
So where am I going with this? Last week, Bryan and I took a trip over to the Children's Research Institute for a tour of the Tissue and Cell Sciences Lab as well as attended a meeting with Dr.
Majesky, you can read about him
here. Our Heart Research Guild presented Dr.
Majesky with a check of $10,000.00 raised from heart families across the state over the past couple of years. Fundraisers like the 2009
Summerfest Fun Run and donations given at our families' Christmas parties were a big contribution of the total gifted. We were proud.
These funds were raised for research from families like ours who want something better for their heart child. We learned that they'll be using this money as the funding to instigate a project, prior to ever submitting their proposals to the NIH, where major funding can be attained. We learned that only 10% of research projects actually get funding from the NIH so groups like our guild have a very important mission because before they even submit the grant, the project must almost be completed and show proof of its validity. And this takes time and money. Dr.
Majesky was thankful for the funds raised and it will help with their
Zebra fish research. This tiny Ganges River fish may be the key to understanding cardiac tissue regeneration and transplantation.
Click here to read more about this. Seattle Children's Research Institute joins several other research facilities across the nation that have
Zebra fish Aquarium labs to study and manipulate the
Zebra fish genes. Incredible isn't it? It sounds promising but will Maddie benefit from what they learn with these tiny transparent fish in her lifetime? Again, it all lies on
time. So for now, we will do our best to help raise money to fund this amazing research, in hope that it will speed along.
So for this day, I'm going to let my anxiety, frustrations, desperation and fear rest in God's hands. Only He knows what lies ahead for us and for our Maddie's life. It's in His time when she'll need her next surgery, it's in His time of when/if discoveries are made to fix cell mutations that cause CHD's and it's in His time when heart defects will no longer be the problem that they are today. And since I'm letting it rest with my Savior, I'm going to simply enjoy the fact that Maddie went poo on the toilet yesterday (her idea for the first time), and during dinner last night, she was antagonizing Cade by pulling his hair and pouring her apple juice on him, that she asked Jace to give her a "wedgie" last night while they were rough-housing, and that she actually went up and down our stairs today 4 times, the most that she's ever tried!!!, and that she tagged along on the butterfly catching expedition with her big brothers last evening.
Time is a gracious and miraculous healer and it's out of our hands. Enjoy today. I am.
We started preschool a week after school began. I'm teaching 12 three, four and five year olds in our basement, two mornings a week. I've worked at preschools before but this is my first year teaching preschool on my own. "Apple Country Preschool" (our name) has had the help of wonderful preschool mom's each time, so that's been awesome. It's really been fun and I think I lucked out with my class :) They're lots of fun and a very bright group. Caden enjoys it but it did take a couple of sessions before he realized that I meant business. Let's just say he "broke in" our STOP chair the first couple of days at preschool. It's rough when your mom's the teacher and you have to share her attention!
This is Cade's 3rd year of preschool so he really is a pro. He was ready for Kindergarten but his birthday fell too late for him to go this fall. I am loving having him in our group, he's a great help and it's rewarding watching him work.
So two mornings a week, this guy and I enjoy a few hours together. Miss Maddie goes to either my mom's house or Bryan's mom's during preschool. She's also had a fun time at Courtney's one morning, playing with Aftyn. It's been great for us all and I've got lots of fun planned this preschool year! I'm loving getting my "teaching fix" again! It's been 7 years since I've had a classroom!
