POW! Right in the Kisser!
Most days I forget that my kid has special needs. She’s smart, beautiful, rotten, and lives to aggravate her brother. She’s your perfectly normal average kiddo. Then one day, WHAM! It hits me like a ton of bricks and I remember what a long road we have traveled and how much further we have yet to go. Of course it can’t ever happen when I’m home alone with a glass of wine. No, of course not. It’s always when I least expect it and have zero time to deal with it. Which is exactly what happened today… over and over and over again.
Lizzie has been begging to have a friend over, so today we had cousin H over for a play date. She was so excited! We picked him up on our way home, and once we got in the house I asked Lizzie to change her pull-up. No problem. She went right in, changed herself and that was that. I started herding them towards the door to play outside when she stopped me and said, “you have to change H’s pull-ups!” I explained to her that H wasn’t wet, and she said I needed to change him anyway. This is when things started going very badly.
Lizzie suddenly realized that H (whose younger than she is) was wearing big boy underwear, and let’s just say it didn’t sit well with her. Ok, let’s be honest and say, she went absolutely berserk! She ran in her room, slammed the door shut, and leaned against it so that I couldn’t open it. She then proceeded to yell through the door at the top of her lungs in several different languages. She was apparently never coming out of her room again unless I let her wear underwear. Never!!!
Eventually I convinced her to open the door. I’d love to say it was my fabulous parenting skills, but it was mostly the Valentine’s Day cookies that convinced her to finally come out (is there anything that girl won’t do for some sugar?). She came out, wiped her tears and climbed up in my lap. With a mouthful of cookie crumbs she whispered in my ear, “I’m bigger than him, and it’s just not fair mom. It’s just not fair at all.” She then grabbed her second cookie and ran off to play. She was over it. The end. I on the other hand, was just getting started.
Talk about brokenhearted. I was barely holding it together. I sent the kids to the swing set and I sat on the porch for a little time out and a tear or two. I learned a long time ago that sometimes you need to take time to grieve. It’s ok to be sad and broken …. sometimes. You just can’t let it take over. A quick little pity party, no more and no less. It’s surprisingly therapeutic, and then you move on.
About an hour later, as I’m eavesdropping on the sweet conversation between 3 year olds, it hits me all over again. Boo: “H, will you hold my hand?” H:”Sure!” Boo: ”I can’t wear underwear.” H: ”Sorry.” Boo: ”Yeah, me too. But I don’t eat baby food.” And then they jump on the swing and begin talking about the weather. Literally! So innocent and so beautiful. And so hard for a mother to hear.
I just had no idea how strongly she was feeling about it all. I’m her mom, how could I not know? We’ve had the great underwear discussion a number of times, but she’s always seemed to understand it and accept it pretty well. She’s never been happy about it (who can blame her?) but she’s a smart girl, and she gets it. Kids with a vesicostomy are wet all.the.time. It’s just a part of who she is, for better or worse. Unfortunately, that doesn’t make it any easier for her and it doesn’t make her feel like any less of a baby. Where’s the manual that tells you how to fix that?!
We had one last discussion about it… over dinner of course! We were hanging out at the local Mexican restaurant doing the whole family thing when Lizzie busts out (at the top of her lungs I might add!) “Hey mom! Do you wear underwear?” Nothing like living in a small town and having your kid yelling about your underwear at the dinner table. Might not have been so bad if it had stopped there, but of course we spent the next 20 minutes discussing the ins and outs of undies. Isn’t that what your family talked about over dinner?
So here I am tonight feeling a little sorry for myself and a lot sorry for my sweet babe. She’s been through so much, and it’s just not fair. Don’t get me wrong, I know how very lucky we are. And most days that’s enough. But being mom isn’t always easy. Making decisions about your kiddos isn’t easy. Some days it just sucks. It happens to the best of us. Lucky for me tomorrow is a brand new day!
And We Have a Date!
Not the fun, hang out with your friends kind of date, but a date nonetheless. And even though there’s no dinner involved we’re still pretty excited about it. At least I think we are. Today was Boo’s urology appointment and as usual she did fabulous. Have I mentioned lately how much that kid amazes me? Her renal ultrasound looked great with no new abnormalities or hydro, and the kidneys appear to be growing well. Blood pressure also looked good today, so we couldn’t be happier.
After all that fun testing, we met with Dr. P and discussed what our options were at this point. Basically we have 2 options, surgery now or surgery later. Originally we thought the plan was to only have the vesicostomy for about 12 months, but that was almost 3 years ago. We’ve known all along that at some point she would have the vesicostomy reversed, but we’ve been in no hurry to take it down since it has been working so well. We were actually expecting another year or 2, but apparently the time has come. On most levels I’m really excited about the reversal. It’s exciting to be moving toward something a bit more normal. Heaven knows we’ve got very little normal around here to begin with.
There is of course another big part of me that is completely terrified. Like the doctor said, “we’re going to take it down and cross our fingers” because that’s about all we can do. Reassuring huh? You don’t really want your surgeon saying he’s going to cross his fingers when talking about your kid and a knife, but the truth is that we really have no idea what the reversal will mean. We can’t do any testing to see what is going on while the bladder is open, but we have to reverse it sometime.
Obviously our hope is that everything goes well, and her bladder works correctly on it’s own, and that the VUR is resolved. We realize that that’s a lot of hoping, and as much as we pray it happens, Dr. P made sure that I knew that this might mean we start back at square 1. And believe me, square 1 is not a place I ever want to go back to. Never. Ever.
After weighing all of our options, we made a really tough decision, but one that we feel really good about. We’re moving ahead with the surgery and we have a date. June 1st. Just saying it out loud makes me nervous, and I have a feeling that the next few months are going to be really long ones. Time ceases to fly when your waiting, waiting, waiting…. and we all know how very patient I am (haha!). So do me a favor and put Boo and Dr. P on your prayer list. I know they will be on the top of mine!
We’re off to see the Wizard…
The wonderful Wizard of Urology. Doesn’t sound that exciting, but believe me, it’s more like Oz than you might think. Fortunately for us, it’s been 6 months since we’ve seen the wizard, and that alone is pretty darn exciting. Even better? We’ve somehow managed to avoid not just Urology, but Nephrology and Immunology for the last 6 months as well. Ahh the ever elusive trifecta. Now that’s what I call a nice vacation.
But then, all good things must come to an end.
Too be honest, I’m actually looking forward to today’s visit. Crazy I know. I mean who looks forward to sitting in a doctors office all morning with a rowdy 3 year old? Why me of course!
Really I’m just excited to finally have some good news to share with Dr. P! Boo can’t wait to tell Dr. P her “super big news”…. she is pooping in the potty! All by herself. It’s a pretty big deal for us. She’s really excited about it and we couldn’t be more proud. She keeps telling me how proud Dr. P is going to be, how he’s going to be excited. Don’t worry, I have every intention of sliding him a note letting him know that jumping up and down is fully expected upon hearing the news. After all, I’m pretty sure I’ve paid for his middle child’s tuition. It’s the least he can do.
In all honesty, I’m sure he will be super excited for her! She’s only had a handful of accidents since Christmas, and for the first time I feel real optimism about the future. Don’t get me wrong, I’ve always been hopeful, but 24 months ago we were discussing the possibility of nerve damage to both her bladder and bowel. Now we know she has sensation to her bowel, and we’re pretty sure to her bladder as well. Believe me, that’s exciting news! Who knew poop would be so exciting?!?!?
So what does it all mean? Well, who knows really? It is Oz after all, so anything could happen. What we are hoping is that this may move her next surgery up about 6 months, which would mean she could have the vesicostomy reversed this time next year. Then we’ll only be 3 years past our original projection of 12 months (haha!). Hey, I’ll take it! Other than that, we just keep on keeping on as long as her blood pressure looks good, and she isn’t showing any new abnormalities in the ureters or kidneys. If everything is growing and looking good then we climb back on the waiting train until our next urology visit, which we hope is not for another 6 months!