Monday, September 17, 2012

Some days are just hard.

I hate to do this.  But, I cannot help that it is what it is.  And that this is not going to be an uplifting post.

We are struggling right now.  Harlie's first Daisy meeting was tonight at 6:30.  It is now 6:49 and we are still at home.  She is struggling on the potty.  Despite the fact that she gets almost exactly the same amount of formula and water each day, she is struggling on the potty.  WTH?!?!?

I know she wants to go to the meeting.  And I'm sure she is going to be really disappointed when she realizes that she missed it.  How the hell do I explain that to her?!  This is killing me.  I would rather her fall in the street and get a skinned knee than have her miss her first Daisy meeting because she's stuck on the potty.  We deal with pain on all levels in this house and I am so, so tired of it.  Why does everything have to be so freaking hard?!?!?!?  Can't she have anything normal?

It doesn't help that we are at our wit's end with her drooling.  I have to pack her two backpacks every day - one for her medical supplies and school folder and one for her extra clothes and burp cloths (which she carries around with her to wipe her mouth).  She is going through 10 to 20 shirts and several pairs of pants per day.  The laundry adds up quick when you're going through that amount of clothing.

I emailed her surgeons to ask about the drooling.  I didn't hear what I wanted to hear, which was that it would take x amount of weeks, and then she would be able to swallow again.  Although, I knew in my heart that I wouldn't hear that because one of her surgeons said they wanted her to eat soft foods, like pasta as soon as possible after surgery (to get her to move her jaw).  Of course I told him that she's never been able to eat solid foods (which was part of the point of the surgery in the first place).  So, clearly not being able to swallow isn't normal.

One surgeon said that because her back teeth touch before the rest can overlap - an open mouth posture happens.  So, it's even harder for her to close her mouth and lips.  Try to swallow with your mouth open.  Seriously, try it right now.

Yeah, it's impossible.

And thinking about it makes me sick.  I was unloading the dishes earlier today and I opened the cabinet where her squeeze bottles are (the ones that she drank out of).  I looked at them and wanted to cry.  It took us YEARS, countless hours and more energy than one should ever have to give, to get her to the point where she could eat pureed foods and drink her formula.  And now she can't.  Simply cannot.  And it makes me so sad.  Today I watched Cooper eat a granola bar while standing next to Harlie, who was drooling.  No words to describe those feelings.

Oh, it's 7:05 and she's done and wants to go.  I hate to go late, but I simply can't tell her no.

It's 10pm now.  It's just been a rough day.  A rough month.  A rough six freaking years.

Just so you know, I'm not a crier.  At least not because I'm sad.  I cry at commercials, movies, when I laugh, or when someone else cries - but typically, I don't cry much.

So, I put Harlie in the car and we go to her Daisy meeting.  I get her out of the car and one of the moms happens to be in the parking lot getting something from her car.  She comes over and says hello and asks me how I'm doing.  And I started to cry.  Ugh.  I didn't want to.  But, I was just so overcome with sadness for Harlie.  For how much she has to deal with.  For how much we have to deal with. For how incredibly hard it is to do normal things.  I can't tell you the effort that goes behind everything we do!  And the drooling.  It just makes everything THAT much more difficult.

It's the proverbial straw.  We've handled and dealt with so much, but it's the drooling that's going to push us over the edge.  But, what are we going to do?  Stop dealing with it?  Well, that's not an option.  Tonight one of the girls sat next to Harlie and squealed, "Ewww!" when she drooled.  I know.  I get it, sweetheart.  It's gross.  And I don't blame you for thinking that.  But she can't help it.  And it breaks my heart.  Then they started to play duck, duck, goose.  Not exactly the best game for a kid who can't talk or run.  But, she didn't care.  And she did it.  She didn't sit in the right place when her turn was over.  And one of the girls said, "That's okay, Harlie, you can sit wherever you want to."  And I wanted to cry all over again.

The reality of knowing that there will be no true break (from heart break or the physical demands) in the future is exhausting in itself.  No weekend away would ever be able to touch the heaviness of all that's involved with a child like Harlie.  We've left the medically fragile intensity of years past and entered the emotionally difficult phase.  With medical oddities and challenges thrown in.  And when I find myself asking God to make things easier for us, I take it back.  Because I know it won't ever be easier.  As long as she's here, she's going to have challenges to deal with to try to overcome, or accept.  So I tell God, never mind.  Just give us the strength, okay?

I am trying to be patient.  And hopeful about this surgery.  But to be honest, right now, I hate to say it - but I regret it.  There, I said it.  I wish we could go back in time and change our minds.  I know her jaw was only holding together by a piece of scar tissue, but it was better then.  She could swallow and she was able to verbalize so much more.  We did this surgery to gain function.  We want her to have the ability to swallow, chew, speak and breathe without the trach.  But we have less function now than we did prior to surgery.  It's heartbreaking.  And I don't know how they are going to fix it her open mouth posture.  If it were easy, they would have done it while they were in there.

I have to go.  I know this was a sucky post.  And I'm sorry.  But I also know that we'll find a way. We love her so much.  She's worth whatever we need to do to give her the best life possible.  She didn't ask for any of this.  And she's still happy.  If she can do it, then so can I.

Much love,
Christy

11 comments:

B-Mama said...

Oh Christy, my heart breaks for you. She WILL conquer this. You will too. You naturally are going to take some steps back before you march on forward. And you WILL march. But in the process you have EVERY right to cry... go on, sister! It IS hard and you're working so hard and she's working hard and some days are just miserably tough. Hang in there! You all have overcome so much and you're going to overcome this too!! We believe in you. Keep the faith. xox

Ann said...

I get it Christy, I so get it. I don't cry often either, but I'm crying with you - for you and for this sucky life that you and Harlie are living right now.

Hugs my friend.

xoxo

Anonymous said...

I ache for you and Harlie. I know it's tough, but you have to believe that things will get better. Harlie's jaw function will improve and you'll wonder why you ever doubted your decision to have the surgery. But until that time, just know that people are rooting for your family and sending prayers your way. And know that you have the right to cry. Please let Harlie know that she is brave and strong.

Hartman 3 said...

My heart hurts so much for you... it's a different sort of difficult, and i'm finding it equally hard... Funny you posted this today, i was totally right there last night as well. We'll figure it out, we always have (and always will). in the meantime, cry on...

Vicky Rauchle said...

Christy -

You are a strong wonderful woman and mom and Harlie is a strong (and stubborn!) beautiful little girl. My heart goes out to you! I don't know how you do it every day, but you do - you have more strength than you know. Hang in there!

Anonymous said...

You have been through so much that it would be shocking if you didn't feel exhausted and worn out.

"We want her to have the ability to swallow, chew, speak and breathe without the trach." This line really hit me because those things are things that the majority of us take for granted, things that impact our life every second, and that you fight so hard for Harlie to have the ability to do those things is truly inspiring, even as you feel that you are deep in a trench.

Be gentle with yourself. You have been through so many difficult experiences and your day-to-day tasks are infinitely more challenging than the norm.

Sue Mitchell said...

We are all praying for you and Harlie, and we hope you know that even though you probably feel all alone sometimes, we have your family in our thoughts and prayers. We can't begin to imagine what all you deal with on a day-to-day basis but we're rooting for you! You're a strong woman and a wonderful mom and most of all, you're human. And you're loved by so many people.

Beverley said...

I have waited all day to.write here...hoping for some magical words.....but I just have hugs to offer...{{{{{Christy and Tom}}}}}

vtkthies said...

I've got nothing profound to say. Just that I'm thinking of you, and so I stopped by to check in on the blog and saw this post. Hugs and prayers sent your way tonight.

Anonymous said...

Wow Christy- I know I have said it a hundred times but you are such a wonderful, strong woman that I am so proud to know and one of the best mothers I have ever met. LOVE TO ALL OF YOU !! Marcy

Veronica said...

I know nothing I could say would really be of comfort to you except that you and Harlie and the family will be in my prayers, and that I hope things smooth some, as much as they can. I'm so sorry about the mouth issues, the emotional issues, the complications that just don't seem fair. I appreciate you keeping it real and raw, to be trailing behind you in this Goldenhar Heart journey, I learn from you every.single.time I visit. If I am half the mother to my son that you are to Harlie, I'll be doing good. Sending Texas sized hugs.