I wanted to take the time to write about how we, Daylens parents, try to really go above and beyond at making Daylens life as normal as possible. From the get go, we were told he has little chance at doing every day normal kid stuff from running around to playing sports. I feared for my son that he would grow up being left out just because he may get out of breath too easy or can't handle the physical activity that "normal" life brings. I tried connecting with so many heart moms and adult CHDers and instantly knew that this was a bad idea for me. So much finger pointing, atoo much negativity about pictures of surgery and recovery, too many opinions, not enough striving. I wanted to see how everyones kids were doing but in reality I just saw a bunch of parents constantly bickering or parents that were consumed in the sick part of their child's life. I saw too many deaths, struggles, and sorrow in the CHD world and saw too many moms and dads dwelling on the the need and support of the community rather than greiving in their own safe way. Even though I have no idea how it feels to lose a child, I do know how it feels to be apart of this hlhs world. It sucks.
It brought great sadness to my life and that's exactly what I did not need. I decided to delete A LOT of heart moms and drop out of A LOT of groups and chose only those to stay in touch with that I felt I can continue to connect with on a positive level even if their children had passed away! Some people greive better than others and I need to see the better part of that. Deleting people was the best decision I ever made. I'm well aware of the statistics for HLHS and the success rates of our hospital. I'm well aware what could have happened, what can happen, and what could still happen. With Daylen we are in the living stage of life, not the grieving stage of life. I did plenty of crying during my pregnancy but he's here, and he's living. I need positive thinking in my world all while dealing with the reality of my sons diagnosis.
Daylen is now almost 2 years old and nothing holds him back from doing anything his little heart desires. He loves walking for blocks and blocks, he walks at his own pace and does very well keeping up w us grown ups when we go walkin. He loves throwing balls but what boy doesn't?! He has an arm on him and I can tell he's going to play baseball just like his daddy and uncle both did! He loves music, he sings and dances and plays the piano. He's no Beethoven but he enjoys doing it. He hardly ever sweats from what I see and never holds a fever. He's never been sick in his 21 months of life and we take great pride in that, especially because I've become so germ-crazy!
Daylen is living a normal healthy life in my eyes, half hearted or not, we don't see him as the sick child he is. It doesn't consume our lives and it's helped us tremendously. Daylen is too busy doing sideways flips off the couch and constantly tries to sneak mountain dew for us to even see the "sick" child in him. I hope he continues to do well and we are looking forward to being post fontan. I hope to see him do things in life that will make him happy. I hope we can continue to be positive and continue our normal way of life and I hope many others in the HLHS world do the same.
Sunday, August 12, 2012
Sunday, August 5, 2012
In December of 2011, a dear friend of mine lost her little girl at age 5 months due to complications risen from a mitochondrial disease discovered at 2.5 months old.
She was a doll baby and is loved by so many people here on earth.
Her 1st birthday was July 9th in which she celebrated up in heaven
and I can only imagine how beautiful it was.
Daylen and I celebrated her birthday by making her a cute little flower pot
and taking it to her along with some pink balloons :)
For more information on mitochondrial disease please visit:
We decided to change the name from Leland Ty to Greyson Quinn :)
It just didn't stick well with us as time went by
I couldn't picture a Leland as my son so that is why we changed the name!
On another note, we were given another ultrasound at 28 weeks due to my awesome
gestational diabete for growth monitoring and he is not large at all!
...atleast not yet :)
He was actually measuring in the 47th percentile for weight
which is below average to be technical
but perfect either way!
Daylen was also average at 7lbs and 8 oz regardless of my diabetes so I'm hoping to have another not so small and not so big baby!
Thanks for reading!