I have handed my son over to surgeons knowing they would stop his heart, and prayed that it would beat again. I have learned more than I ever thought I could. I have cried more than I ever thought possible. I have celebrated victories and milestones that others never have to. I have walked a road I never knew existed. I will walk this road forever. I am a mommy to a CHD Angel ♥ iLy Kayden James

Tuesday, May 24, 2011

Remember When...

That's about how I am feeling today...Last night me & my mom found some OLD pictures of myself & of the kids. Like pictures of when I was like 14-16!! So yea those are OLD. But you know those I didn't care about, what got me thinking was when she showed me a picture of the Easter bunny, Alexis & Kayden...Then I started thinking back to when he was a baby & how much I couldn't get enough of him. I still can't obviously lol! But what is really sad is somedays I find myself wondering what things would be like if Kayden never had a cleft lip/palate or if Kayden never had heart problems. I mean for a long time we knew his heart was big but it was stable & wasn't holding him back...Then she showed me another picture it was when Kayden was a little older with the Easter bunny, Alexis & Lyndsee. That really made me want to cry. He was crying obviously because the big person in a bunny suit scared the crap out of him. But it made me sad because he looked so healthy, his little legs were chunky and his color was good. He was good! I remember when he was born & how scared I was because I didn't know what to expect. I always knew once I found out all his health problems that it was going to be a bumpy ride. But I told myself we would get through it & we'd be okay!! And once his heart was getting better I thought we were going to be fine. And then last year changed our lives more than most people could ever know. I can't believe it has almost been a year since Kayden was diagnosed with Congestive Heart Failure.

And even more I can't believe that he will most likely be getting a heart transplant. Waiting for the appointment is hard enough for me. I can't imagine how it will be waiting for that new special heart!! How do I explain it to him. That's my question. He is 3 1/2 so he still doesn't grasp the concept of everything. But he understands his heart is sick. So I guess I'll have to tell them they are going to give him a heart that's not sick? I mean I don't know. When he had his surgery in March, I tried explaining to him that the doctors were going to fix his heart so it wouldn't be so sick & he would feel better again! Well that was blown out the water because he doesn't feel better. He still sits around doing nothing. I had to make him get up today and walk around the house because I'm having issues with his oxygen again! It was low to mid 80s which is not okay. Not for him. His oxygen level should be normal & it's definitely not. It was more normal before the surgery!! I know I can't fault anyone because I knew it was possible that he wouldn't take to the surgery. And I ALWAYS tell people, to expect whatever is the least possible thing with Kayden. Because whatever has the least chance of happening then it will for sure happen to him!! I don't know how to get myself out of the habit of thinking back to when he was younger & how he was then. I try to accept he'll never be that child again I guess, I mean maybe after the transplant he will...I guess. I don't know, I just hate that he has lost so much time already because he's sick.

I'll keep fighting for him until the day my heart stops beating! Kayden is a little warrior and he is going to fight until he pulls through this & beats it!! I will also continue to fight for all of the other warriors & all of the Angels touched by a broken heart <3 There are too many still fighting & there are way too many who've lost their battle with CHD!! <3 Say a prayer tonight for all of those families!

1 comment:

  1. Misty I'm so sorry you are going through this! He is so precious! I think just tell him that someone is going to give him a new heart that won't be sick anymore. It's going to be a lot for him but the less he knows the better probably, you wouldn't want him to be scared. You can explain better once he is older. Praying you for always! Love you guys!