Monday, March 03, 2008

How am I doing???

That is the popular question. It depends on what time of the day you ask me. If you ask me first thing in the AM, I am normally upbeat about the day. If you ask me around lunch time, I am still hopefully. By dinner time I am just wanting to get everyone fed, hope that they eat and then fairly easily with as little pain, in bed. By the end of the night I am emotionally, physically and spiritually spent. Drained. Empty. Bankrupt. Exhausted.

I was recently accused of using my “sick child as an escape” by using that comment (feeling emotionally, physically and spiritually drained). But, it is true. I do not expect others to understand. But that is how I am doing.

Lindsay’s chiari diagnosis sort of threw me for a bit of a loop. I *KNEW* in my heart she had it, but I was hopefully that she did not, if that makes sense. However to see it on a computer then in writing, it just gives another blow to us. She will need to have a completion MRI of her thoracic and lumbar spine to check for a syrinx or tethered cord. If she has either of those (which I do not believe that she does) then she will need surgery. Right now, I believe that if she does not have either of those then we can control her symptoms with meds. Of course when we told her she handled it with the grace that is part of her. No tears, very matter of fact. She discussed that if she needed surgery that could I please put her hair into 2 French braids on each side of her head with a part in the middle where her incision would be. The thing that just put a bee in her bonnet was that fact that she cannot ride roller coasters. She is a strong little girl.

I have been struggling with the fact of my infertility. Maybe it was truly God’s meaning for me not to have children. Is this my punishment? I struggle with the fact that I am symptomatic and I probably gave this to my children. Then I think about my grandchildren, should there be any. I think about their pain and hurting. It gets overwhelming. I know in my heart that there is a purpose for this. I want it, need it, pray for the purpose to be shown to me.

This world that I live in, is not an escape. Watching my children suffer is NOT an escape. This is nothing short of hell for my kids, hell for me. THIS is not fair. This SUCKS. I do not care that life is not fair, my child(ren) should not have to suffer.

Though right at this moment I am ranting, I am really holding it together well. Right now would be a low moment. But I will get into a little further down the page.

I have a few very close friends who have walked this journey with me. I have met a bunch of great families who are walking this journey and are there for first hand support. The ones who have lived it and are living it. I have people that I do not even know, praying for my family and that is a wonderful feeling.

We are NOT quitters. We fight the battle when it is WORTH fighting for. We will FIGHT this battle and we will win. I refuse to believe that my children will suffer. I will not accept that.

5 comments:

Jessica said...

What you, Darren and your little ones are going through is something that none of us can understand. I think a lot about how you are holding it all together and that I know you guys are going to beat this because of your strength. Don't ever forget that for a moment. You are strong. Darren is strong and so are your children.

Lynn said...

Hugs, you are going through so much, but you guys are fighters! You have wonderful, special, funny, loving children and everyone knows how strong they are. Everything happens for a reason, we may may never know why.

Just know that we all love and appreciate everything you do for your kids and teaching everyone you meet about Chiari. Before you guys, I have never heard of it, now I see it seems like everywhere.

Hugs!!!

Wendi said...

(((MICHELLE)))

I am just horrified to realize that you think this might be some sort of punishment for going against God's wishes. No God I could ever believe in would punish someone by inflicting harm on innocent children.

I'm so sorry Lindsay has been diagnosed with this condition. I can't even begin to imagine what goes through your head on any given day.

Please know you're all in my thoughts and prayers. I think about you guys often and never quit hoping that soon, they find a way to resolve Gabe's pain and let you all get on to something resembling a normal life.

mom2babybirds said...
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Anonymous said...

I am sorry Michelle for Lindsey's diag. I wish you only all the best as you travel this journey with your children. You are survivors, fighters, FAMILY....you will win the battles and eventually the war. I have faith.
IT is beyond what I can imagine- the emotions that you must have DAILY--- I wish you inner peace and strength so that you can continue to do such an amazing job.
All the best,
Tammy