Can I do a little venting here? If you want to hear something uplifting and encouraging, then stop reading right now. If you don't mind a little cussing and kicking of the dog, then please proceed.
I keep up with some Neuroblastoma kids. There are some spans of time when I check on them daily and other times when I go for a few weeks without checking in. Sometimes it's just hard... on several levels. If they are relapsed or refractory kids, then I know what lies ahead, and it's sometimes difficult to walk with them and hope with them when I actually have no hope for them. And then, it's also difficult to read about their lives... their family vacations that they squeeze in between hospital and clinic visits, their elation or disappointment that is governed by test results, the amazing ways they are being loved on and carried by their community of support... all so reminiscent of our lives when Paul was alive. I am happy for them... and jealous, too. Thrilled that they are still enjoying their child, and mad as hell that I am not.
I have been checking the website of Max Mikulak as regularly as I can lately. Max is dying. And he's in pain. A lot of pain. I was reading his website tonight and crying. I wanted to pray for his parents, but I couldn't think of what to say to God. So, instead I just yelled at Him... because what the hell does it matter what I say anyway? He knows what they need - they need the pain to end - they need their son to be healed - and yet that's not happening. My prayer's not going to change that. I couldn't pray for peace for them because I know that's ridiculous right now. Their son is IN PAIN. There's no peace there. So, the only other thing I could think to pray for was for Max to die sooner rather than later. That's it. That's all I could pray for? That SUCKS and it made me pissed off at God.... Mad because I know the heartache his parents are experiencing now, and I know the heartache they'll be experiencing a year from now when - as crappy as things are right now - they'll be wishing for these days back.... longing for those brief moments of joy with their son.
So there you have it. Midnight ravings from a mad mom. In the past, many people have left comments on this blog saying, "Thank you for being so honest" so here's a great big dose of honesty from me. If you like it, great. If you don't, fine with me. It still won't change reality.
It's late. I gotta go to bed.
5 comments:
Leigh, I for one appreciate you sharing, and agree that it just sucks, and it all seems totally unfair and unjust that parents ever have to watch their kids suffer like this. Your other posts, and the way you guys have gone on living your life this past year, will give hope to other NB parents that it is possible to "stay upright" and love your other kids and continue to have a good life with them, but that doesn't mean the pain ever goes away. Thanks for helping me to keep my little life frustrations in perspective. I miss Paul too.
Janet
Rant away. We'll listen, er, read. Hopefully getting it out helps.
I'm grateful that in times like these when we don't know what to pray, the Holy Spirit does and intercedes for us. God made us, so He is well acquainted with our anger, our hurt, and our inability to break free from those things for a while. And yet He loves us still, and He is still good.
Never having had the honor or pleasure of meeting Paul, I have enjoyed seeing pictures and reading about him through your words (and Terrill's). What a treasure! It is beyond reasonable to me that these emotions you're feeling now go hand-in-glove with what you've experienced.
Thank you for your honesty in this post. I continue to pray for all of you. God is good, all the time... even when it doesn't make sense.
Blessings to all of you.
Just as a mother sits right beside her child when he is sick...God sits right there beside you. Keep raging until there is nothing left. He can take it.
You have really gone through some tough emotions this week, friend! I must say, that while I detest the source of the changes in "new Leigh", I really like that she's more emotive than "old Leigh"! (is emotive a word?!) Anyway, it makes me feel less the emotional one to see your tenderness as you cry, yell, and shake your fist at God.
Just know that as much as your friends love you, accept you and understand your heart in the midst of such incredible frustration, pain, and anger - and even agree with you in it - He loves and knows you so much better and is big enough to hear and take the brunt of it all. I can testify to that!
So, you've now given us all more of a window into "the older I get the less I care"...the "old Leigh" probably would've never admitted a post like this one! :-)
Praying for Max and his parents with you, or in the gap where you would be...
Love, Laura
Leigh, I love reading your blog posts. They are honest indeed...
You should also know that every time I see a coin on the ground in a parking lot, on the street, or ANYwhere, I am reminded to pray for you and your sweet family.
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