Wednesday, March 7, 2012

Is there a breaking point?

I think we all feel like we have a breaking point, a place where you cannot take on one more thing, one more worry, one more fear, one more responsibility.  I feel very close to my breaking point, but know that even if I reach it, I have no choice but to keep going and bear my load because I am the mom and moms don't quit.

We still don't know what is wrong with Grayson and he is getting worse.  He is incredibly pale and his eyes are black. He is getting horrible hives daily and has constant pain in his neck.  He is exhausted most of the time, he wakes tired, has some energy through the morning, is tired by lunch and rests, has a bit of energy in the evening and by dinner he is wiped out.  This was my never stop moving kid and it is sad to see him sit so much.  He is having such a hard time with this and hates being home from school and feeling yucky.  We have had two sets of blood tests, all normal.  We have tested for Lyme, thyroid, arthritis, lupus, liver function, inflammation.  He has had an MRI of his head and neck which were clear.  The doctors are concerned, he came in months ago when we suspected he was a bit anemic, he had been tired and pale.  Over the last few months he has gotten worse and we have not found out why.  We met with his doctor yesterday and she has run out of options and feels we need to see oncology this week to rule out cancer.  I know what she is looking at, lymphoma, and he does have a number of the characteristics of lymphoma and fits in the age and gender for the disease, but right now I can not and will not accept that is what is wrong.  We will see the specialists at Children's Hospital Friday to have him assessed and they will have all of his medical records, so I am confident that they will be able to determine if more testing is needed and if they suspect a lymphoma as well.

Breaking points.  We have had our fair share of health concerns and issues with our kids and I have not reached my point yet.  I have shed tears, been afraid, been angry, but each day I have no choice but to keep moving forward to make sure that all the kids have the best mom and advocate they can have.  We came through Finn's diagnosis well, and while we wish he did not have Cutis Laxa, we were relieved that while he has the rarest form, it is also the mildest.  We hold the same hope for Grayson, that whatever is making him ill will be discovered and will be treated and we will get our boy back.  I am not broken yet.

1 comment:

Casey said...

Hey - I have another friend who is experiencing medical mysteries with her daughter. Hives are a recent thing that has developed. I thought maybe you two could offer virtual support to each other and maybe....between two smart moms, can help figure out what is happening with the kids.

Here is her blog: I've known Jenn since she was pregnant with Athena.

Habg in there!