Monday, March 26, 2012

"Normal" By Now

I'm going to rant and I apologize in advance. I know it's ridiculous to put something out there for everyone to see and ask "everyone" to keep things confidential, but I am going to anyways. Please keep these matters in your prayers, but please be sensitive to the feelings of my sweet daughter too.

I should be used to this by now, but I'm not certain I ever will be. The waiting, the doctors, the uncertainties, the tests, the questions, the tests that lead to more questions and more doctors, the doctors who won't simply say "I don't know", the waiting rooms, the copays and deductibles, the endless prayers, the explaining to my kids when there aren't any explanations, and so on and so forth. When does it end? How far do we go? Do we keep trying or do we quit?

We got Leah's biopsy final report today and everything was "normal". The only problem is things aren't normal. Leah still struggles with muscle weakness. She's made great strides in some ways, she's learned to ride a bike 2 wheeled. In many other ways she still deals with weakness though. She's had lab after lab run to the tune of $50,000 and everything is "normal" in the end. She still struggles with putting on weight and despite eating more that she ever has this year, growing is still slow going for her.

She's 7 and on a BiPAP machine every night because her muscles aren't working well enough for her to breath enough to really sleep. We know she needs it. She couldn't have faked or skewed the tests. We see the difference in her emotionally and physically when she does use it and so does she. When your CHILD tells you, "I like how my BiPAP works because I don't have to be afraid I'm going to run out of energy when I use it. I can just keep going and going" it kind of breaks your heart and gives you peace at the same time. Still, it's not "normal". We are on our 7th mask in 2 months to try and find the perfect fit for her sweet face. I've even gone to the extreme of cutting up one of Glenn's silk shirts to make soft liners for her mask so they would be more comfortable. She's gone to school on many occasions with marks on her face from the BiPAP masks rubbing her raw. Worth it? YES Normal? NO Every night she asks, "why do I have to do this again?" and I fumble for an answer that makes sense. The truth is I don't know.

Then there are the BIG issues. The pain that is so intense at times that she is on the verge of vomiting. You never know when it's going to hit or what will set it off. Nine months ago she started having accidents. They were very sporadic and seemed to us like a possible UTI or just waiting too long and being too distracted to go. Sometimes it was an issue with not being to work zippers or buttons on her clothing so we've modified what she wears. We've been in for many urinalysis and they are all "normal". But here's the thing. It's not normal. It's getting worse. It happens at home, it happens in public. I'm not talking a little trickle, oopsie accident. I'm talking about a full bladder in the shoes accident. It is absolutely humiliating. She is so embarrassed and angry about it. They've gotten more and more frequent and the urgency of her need to use the bathroom has increased greatly too. When she's gotta go, you've got seconds at most to get her where she needs to be or it's too late. We've talked about not waiting so long, about not ignoring the little signs, etc. until we are blue in the face.

It seems that if distraction or waiting too long were the cause, at her age, she would have caught on by now and would compensate for it. But they continue to get worse, not better. She has been fully potty trained since she was 2 and has never had any issue like this before. Is it psychological? Is it behavioural? Is it physiological? Despite the doctors lack of concern over it, I as her mother will tell you it's NOT "normal". What would cause a child this age to have a sudden onset of this? She is shy, timid and does not like to draw attention to herself. She is humiliated when it happens and becomes hysterical when I have to help her take care of the mess. It's been pretty rough on her and it's indeed not "normal". If it's psychological, fine, lets deal with it. We've spent hundreds of dollars on play therapy and been told it's not, but we can go back. If it's behavioural, fine, let's deal with that. But with all that's going on does it seem so far fetched that maybe it is physical?

I warned her teacher and the school nurse about what was going on and asked if we could come up with an emergency plan just in case this happened at school. This was one of my biggest fears as I can only imagine the humiliation that would occur. Last week I picked her up early for therapy and as she got in the car she told me that she had an accident at school. My heart sunk. She explained she had taken care of it with the spare clothes in her bag and that it was okay. I was surprised at how well she was handling it. Then I realized she had the same pants on. I sighed a sigh of relief realizing we were off the hook this time, it was just a little accident. When I asked about specifics she shared something that just about ripped my heart out.

She had been at PE and felt like she need to go potty. She went to tell the teacher and knew it was too late. She went away from the other kids and hid. She was too embarrassed to tell the teacher. Just then they paged her to the office because I was there to get her for therapy (Praise GOD!). She ran in and grabbed her bag and went to the bathroom to change before coming out. It was then that she told me it was her bowel, not her bladder. I honestly didn't know what to say or do so I went into "deal" mode. She was fairly confident that no one saw her or knew. I can only pray so. We got to therapy and I took her to the bathroom to make sure she was all cleaned up. The mess was bad despite her best efforts to do what she could with what she had. Once again this wasn't anything "minor" this was an entire accident. She was hysterical and on the inside so was I. She realized our "spare" clothes that we keep in the car weren't there because she had used them earlier in the week for a different accident. She kept crying, "please don't make me wear a diaper". I scrounged enough clothes together (thank God for that not growing part and a pair of 4T panties) and she went off to therapy. I on the other hand walked out into the woods and fell apart.

After a sobbing phone call to my mom, I called her pediatrician and her MD doctor. THIS is NOT normal. Or is it? What is normal? What isn't? How do you know where the line is? Leah has always had signs of some underlying muscular issues, but what now? What's next? Is this permanent? Is it a one time thing? What is going on? Is it too early to panic or is it too late? Should I have made a bigger deal out of the bladder issues? If so, to who? Two days later I heard from the pediatrician and he wants an MRI of her spine and brain done. He doesn't think it's "normal" but doesn't know what to make of it. Her MD doc finally called today, 5 days later, and said that since her biopsy was "normal" he'd do an MRI if that's what we wanted. He "wasn't ready to say that this had anything to do with anything muscular" whatever that means.

Is this normal? Quite honestly I don't care. I am so tired of the run around. I am tired of doctors who want to treat their "specialty" instead of MY DAUGHTER. I am tired of trying to wrap my mind around it all. I'm tired of worrying about what symptom is next. Or who I need to call to make sure they will schedule whatever needs to happen next. Or which doctor is going to care enough to do anything about it. My daughter is hurting, physically and emotionally and probably psychologically too. I want help for her. I want peace for her. I want comfort and rest for her. I want NORMAL for her. Is that abnormal for a mom to want? If so, I guess I'll just have to be abnormal.

God give me patience, strength and peace. Help me know when to push and when to back off. Help me comfort and guide my daughters through this "abnormal" world we live in and help us find and live in the "normal" your grace grants us. Give them both peace that passes ALL of our understanding.


brianna said...

My dear are an abnormally wonderful mother. Your daughters may never know everything that you and Glenn have gone through to make their lives "normal". Keep fighting for them. I don't know what this is all for but when God picked parents he gave your girls to someone who would never except sub par for them. You keep going grl with the knowedge that your village is behind you waiting to help, scream, listen, yell, and drink..... my heart breaks that the people you are suppose to go to for answers do not have answers for you. I am here....let me know how i can ya girl

jennifer m said...

Becky, I've been praying for you guys and clearly should have listened to the holy spirit when he put you on my heart to call last week and I did not put it on my to do list. We love you guys so much and a thankful for your friendship. and you know I always have time on " my couch" for you! We all have our times when we need to be the one taken care of and my friend, you can use some lovin! let's make a game plan this week!