Yeah I should probably be in bed right now since Jax is in bed, I'm going after this I promise. I'm hoping he sleeps better tonight, so I can sleep better tonight. We did an x-ray of his belly today because my doc will be out of town for a few days and she wants a plan before she goes. The plan is for enema's, yeah, I think that will help for about two days. I'm getting frustrated at no plans for helping the inability to pass anything. My surgeon did say they can put a hole in the belly for suppositories to go through, so you don't ruin the rectum, but he didn't want to do it on Jax and I didn't want another hole in the body. But a friend made a comment about it so I googled it. It may not be half bad, it looks like another button like his g-tube. We need to seriously discuss if this is what he needs.
The other thing that has been really bothering me and I think what really caused me to go over the edge this morning is the overwelming grief for a man that has been given little hope after he's given hope to so many of us. A man who's had his hands on Jaxson's heart and so many others and has sat by bedsides of extremely sick babies, not leaving until he's sure there ok. Why does this happen? I'm so sick about it. I was waiting for his email about how he could help us with the SVC syndrome, just to find out he's no longer working, insteading fighting for his own life. Please add Jax Cardiac surgeon to your prayers tonight.
The other thing that has been really bothering me and I think what really caused me to go over the edge this morning is the overwelming grief for a man that has been given little hope after he's given hope to so many of us. A man who's had his hands on Jaxson's heart and so many others and has sat by bedsides of extremely sick babies, not leaving until he's sure there ok. Why does this happen? I'm so sick about it. I was waiting for his email about how he could help us with the SVC syndrome, just to find out he's no longer working, insteading fighting for his own life. Please add Jax Cardiac surgeon to your prayers tonight.
But I had my revealation today. I was walking out of the grocery store with Jax and this lady and her down syndrome son walked in. He was probably in his 20's. He didn't see Jax, but he locked eyes with mine and followed me out of the store with a big smile on his face. He didn't turn away until I was out the door. That was my sign, to get up, quite whining, and appreciate this beautiful little boy that I've been given. Don't get me wrong, I've always appreciated him. But it does get harder with every setback he has. He is my life and I wouldn't trade him for anything in the world.
11 comments:
You'll be fine Lacey ... we all will.We are in this together.Thank you for your unselfish support and your steadfast friendship.Valued and appreciated more than you know.
Lacey, we ALL have days, weeks, months.....where we just feel like crap. We get frusterated and just are pissed off at the world.
Why do you think I haven't been around the blog world very much?
Because I have been angry at the hand we have been dealt.
Not Rhett by any means, just the crap that he has to go through. I too have a hard time when I see kiddos with Ds who haven't had any medical issues. I mean I know I should be thankful for his progress but still. Did he really have to go through all of this.
We love you guys and love Jax to peices.
((HUGS))
I first checked on Zoey and then of course Pablo and now you. I am pissed too! Why do our sweet angels have to suffer so dang much? I too will pray that both you and I can sleep.
Oh Lacey - you are all in my prayers - One thing is so right - your little Jax is gorgeous and such a beautiful gift from GOD! Sending a little prayer up to God for his cardiac surgeon! God bless, Megan and Keaton
Lacey, you are allowed to feel discouraged and upset. Its all prat of life. I have days when I wish my child could be "Normal" that he didnt sound like a pug or have issues pooping (unlike jax, Malachi has chronic runny stool). We all struggle with expectaions for time to time, and thats okay! Jax is AMAZING and you are an AMAZING mommy!! We are praying for you!
I'm so sorry to hear about Jaxson's cardiac surgeon! How sad! I'm praying!
I also pray that one day your precious Jax will be walking out of a grocery store and touching someone like that DS boy did you! But, even if he doesn't, he has touched SO MANY lives already! I can't tell you how much he and you have touched my life! You both are such a blessing!
Hope you have a great day!
Hi, We are the Maxfields, Tina, Kent, and Bronco (has DS). We met you at the DS Santa party last December. Jaxson melted my heart, what a handsome boy! I hope you don't mind us crashing your blog and saying hello.
Our daughter had a congenital heart defect and lived in PCMC all but a week of her short 77 day life. Dr. Hawkins was her surgeon. We follow other heart baby blogs and came across yours.
You have every right to be pissed. We love that you are. When I first met Jaxson I knew his parents had to be VERY loving and caring. I think every parent with a child who has a disability has within themselves the strength and power to help THEIR child survive their mortal challenge(s). When I get angry that my son has DS I put his shoes on and take them off wondering how frustrating it must be for him having such a limiting disability. It's still so hard to understand why! It takes parent's with shear grit to help a little boy who has so many challenges! You must be phenomenal people. Thank you for your example to us. We admire you and you are in our prayers.
Your words really inspire me every time!
Thank you for your honesty and for sharing.
It will all be ok - it has to be - there is no other way when we have Love on our side.
But I know it must feel horrible to have a day like this!
Will we ever fully understand why we go through what we do? We all have our own 'cross to bare' our own lessons to learn our own fears, obsticles to overcome. God has a plan for each of us and often times it makes no sense at all. but the only thing that keeps me going is to know HE loves us and His love is infinite, which means no matter what we all face, we will all be OK. With that love from Him, he gave us friends and family to walk beside us, sometimes hold us up, sometimes leading the way, and sometimes just walking silently by our side. Thankfully none of us are in this alone. Hang in there girl! Sweet Jax is such a beautiful gift, that i know you know! Love ya girl!
YOU GO GIRL!! You're incredible & I pray that you get some sleep & in time it will get better for you;)
BOY, I'm so sorry to hear about the MD...prayers on the way!!
LOVE & HUGS!!!
Yes, that poem was posted for you;) I had it saved FOREVER & after I read your post...I HAD to put it up!!
BIG BIG HUGS TO YOU MY DEAR FRIEND!!
Tomorrow will be a better day;)
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