First, yes, Bella now has a g tube. She's a little over two weeks post-op, and she's doing much better. It took about a week for her to recover and for "Bella" to come back...if that makes any sense. Every illness and surgery takes a little longer for her to recover neurologically. Which is worrisome..but that's another post for another day.
I get asked a lot "aren't you so glad for the g tube"? Honestly, NO-I hate it. I hate that the one thing we still had (eating) has been taken away. Granted, we still feed her three meals a day, and the tube only supplements at night, but it's still a constant reminder that it's one more thing that makes her different from other two year olds. It's one more reminder that some things are getting worse, like swallowing. In some ways, I'm grateful. I'm glad I now have a way to get fluids and nutrients in her safely, and without causing fatigue. I'm grateful that when Bella's sick, I won't have to worry about dehydration. But, to be completely truthful, most of the time it just makes me angry.
Anger is a funny thing. It can take over your life and consume you if you allow it. I've realized lately (which is one of the reasons I haven't posted in a while), that I'm angry for a lot of different reasons. I'm angry at everything this unknown disease process has taken from us as a family. There's so many things we can't do together anymore. We can't go to church together (there's no class that's appropriate for Bella, and I can't take the risk of her getting sick). So usually, Craig and I take turns taking the boys. Which stinks. We can't go to movies together, go bowling, or even watch fireworks together (too much risk of seizures with the flashing lights). I hate that my boys miss out on so much, because, most of the time, it's just easier for one of us, or both, to stay at home.
Most of all though? I'm angry at everything my precious, adorable, girl has had to go through, and all she's missing out on. It's simply not fair.
See what I mean? Anger. It's a powerful, ugly, joy-zapping, force. If you're still reading this post, bless your heart. It certainly hasn't been a warm, fuzzy, feel-good post so far.
So..I've decided, with Thanksgiving right around the corner, it's time to get a grip, and get out of this funk. There's so much to be thankful for, even in the midst of circumstances that aren't ideal. So..every day I'm going to try to list something positive that I'm thankful/joyful for. (I'm going to try to blog them every day, but realistically, it may only be 2-3x/wk)! Life is busy around here!! I promise to try my best though.
Let's start, shall we? Today...I'm thankful that I get to spend the day at home. No appointments, no schedule, just home. Cozy pants, warm coffee, Bella giggles, and a 6 yr old building a truck out of Lego's.
It doesn't get much better than that, even if I keep stepping on Lego's that Alex dumped all over the living room (those things hurt...)!
I'm hopeful it's going to be a good day...even if the circumstances aren't ideal. (Are any of our circumstances ever ideal)?
(Image from captured by Kerri photography)
Happy Monday, friends. Tell me, what are you thankful for today?
9 comments:
Good post, Julie. The raw, honest truth. Maybe it helps a little to just get it out there. I have been thinking of you all and wondering how the g-tube was going? I'm keeping you all in my prayers. And it is hard to understand the "whys". It just isn't fair. Anyway I appreciate your posts and the picture of you and Bella is beautiful! I'm thankful for the cozy indoors and the leaves that have turned and are still hanging on - so pretty!
Thinking of you all, Julie, wishing I could take away some of your pain and anger :( I can help with watching your kids for you so you and your hubby can get some much deserved date time in... just name the day!
Today I am thankful for crem brulee coffee creamer and hooded sweatshirts :)
Now it's my turn. I'm so proud to be your sister. :) Love your honesty. That pic of you and Bella is SO beautiful.
Replying to your email..SOON!
Oh Julie. How I wish I were closer so I could do something tangible to help. I could come over on a regular basis to let you and Craig do something together.
I'm sure there are many families around this country with special needs children who experience all the anger causing scenarios you describe but I've never seen them listed like that so my feeble brain had never imagined all of them before. Also - - - I'm sure for you in the midst of it - - - it feels like your family alone has to deal with all these things.
I am thankful that I went to my follow list last night so I would find your post. I'm not blogging as much now as I used to and I miss lots of bloggy things - - - so glad I did not miss this one.
You are so special.
Oh, and I'm thankful for flip flops too - - - saw that in your sidebar!
I love you. I love your heart. Thank you for being transparent!! Our situations are completely different, and yet, I can relate to so many of your angers. (For example, I can also count on one hand the number of dates my hubby and I have had in the last year, unless you count appointments with our attorney, which I don't!)
That picture is PRECIOUS! Your Bella is absolutely just that...beautiful! And so are you! I'm thankful for YOU.
Thank you for sharing your heart. I am glad to know some specific things to pray for you for.
I am thankful for your friendship and would love to babysit your kids for you so you could go out sometime. Bryson would be thrilled to play with your boys again. :) I am thankful that I can spend my days with my kids.
Lisa
Thank you for sharing! I love the honesty and it must feel good to get it out there like that. Wouldn't it be awesome if we could kick and scream our way through some of this. I would if it would at all help anything! But it won't help so I will have my little tantrum inside my little head and go on with life. But picture this: Laying on the floor kicking and screaming for dear life. Then as the bewildered people looking on are saying, "ok, she is calming down let's see if we can get the oxygen mask on her to give her a breath." well....about that time inside my innermost being I recall someone saying to me, "Remember God never gives us more than we can handle!" And I start all over by lifting my...ahem..."buttocks" off the floor and slam my feet into the ceiling fan. (at least that high if not higher)And round 2 has begun, viciously kicking and screaming my way through the statement that just went through my mind!!!!
Oh dear! That was off the wall but that is one statement that about fries me. We have more than we can handle actually. But we have no choice but to keep going and it always looks a little better the next morning after a nights rest. That is if the night was restful!
The picture of you and Bella is truly breathtaking. She is one very beautiful girl! God bless you Julie.
I love this post! Wish I had half the courage you do!
I love the photo of you and Bella. She is gorgeous, and that smile....it's something. It was so good to see you a couple weeks ago. Love and strength to you...
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