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, June 28, 2011

& finally the wait begins...or continues...

Kayden was officially listed on the transplant list yesterday June 28, 2011. I feel at least we made a baby step forward. But really does the wait begin..or does in continue? Because if you think about it he has been waiting for 3.5 years. His little heart was giving in everyday and each day was 1 day closer to getting a new heart, just now I guess it's official. Well I've been an emotional wreck lately. I feel like crying constantly. Today I went to a family support group at the hospital & I needed it bad. I've never been to anything like that, but it felt good to get it out. I've just felt everything building up inside of me & it needed out. I still have so much built up I just cry because I don't know who to talk to. I feel so bad because Kayden should be out here playing & having fun..being a kid. He should be home with his family not in a hospital with wires and tubes connected to him & tape all over him. I feel like we are being cheated, me & my family & Kayden. My kids should have their brother home & they should have me.

I do know that God is watching over Kayden while I'm away & while I'm there. I also have learnt in the past 3 years you can never lose faith, once you do you will lose everything. That is whats helped me get through is never losing faith. I also know that things will get worse before they get better & I know and hate to admit it but little man has a long ways to go & he will definitely get worse before he gets better. I miss his little voice. They took his paralytic off but he can't get off the ventilator they are trying but when they do his oxygen drops. So I can't hear him talk. I miss his voice so much, I miss his little 'me mad' or 'mommy stop it' or 'get way me'. I just want to hear it, I want to hear the quiet whispers of 'love you, night night, see you mornin' from him before bed. I just wish he was hope and okay. It's so hard knowing peoples lives just go on & my little boy is fighting so hard & most are just so unaware of things like this. I think it's important for everyone to know about heart defects & once my baby gets better, that will be my mission is to make people aware of heart defects. And I'll do my best to help families out and be supportive to families like myself. Thank you everyone who has continued to pray for my bubba. He's strong & he's a fighter, he's hanging in there <3 Just keep praying, God is listening <3

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