Friday, October 1, 2010

Gracie update

I have been rather vague about what is going on in Gracie's life because, to be perfectly honest, noone really knows! That is...noone here on this earth knows! We take great confidence in Psalm 139 knowing that the One who made her, who created her inmost beings...He knows! He knows each fiber of her being, He knows her days---not only the number of them, but what they are filled with. Right now, today...this day...is filled with laughter, with Charlie Brown, with making eggs, with filling the bellies of our local ducks...today is a good day.

These past months, however, have had some very interesting, painful days for Gracie. She is battling through some severe leg pain, now some arm pain, and also has had an episode which initially appeared to be a stroke. We are still awaiting answers for what is taking over her little body, but in the meantime...we are enjoying today. When I say she is battling intense pain, that is true, but it is not all the time. She may go days with none that she complains of anyways, then have a day where she cannot function at all. When her legs hurt, she cannot walk...she just sobs. In the past two days, her left arm is also hurting.

We seriously see God's hand ALL THE TIME in her life. He has continued to bless our family with the best caregivers and doctors, here in Charles City and at the Mayo Clinic. The doctor that is overseeing these new symptoms is seriously one of the kindest people I have ever met. He so wants answers and he so wants the answers to be treatable and fixable. It is so puzzling to him as he rules out one thing after another. We spent a considerable amount of time with him last week. All involved do not think this is directly related to her heart disease. At this point, he is thinking she may have an issue with her bone marrow. Obviously, our minds race to leukemia...as does his. The good thing--the simple bloodwork they took is not showing anything too out of whack, but 20% of the time, it is not a red flag. The next step for Gracie is to meet with an orthopedist, just to make sure they are like-minded when pursuing this next avenue of diagnosis.

Our family has amazing peace. In my heart, I do not think she has leukemia. She has something...that I know. Throughout these last four years, Gracie has had many, many issues. Her heart is not good. Yet, she has never had pain until these last months--at her young age, she should not be in pain. As her mom, this is what breaks my heart. I know God made her perfectly...heart and all. I just plead for Him to take away her pain...that is the part I do not understand. I know we live in a broken world with sin and pain and heartache--but, a child in pain is too much to bear.

The silver lining--most of the time...she feels just fine. She runs and plays and gets into mischief. There are times I'm pulling my own hair out because she is so incredibly normal...naughty!! She is taking dance with my dear friend, she just went to her first princess birthday party, she loves, loves, LOVES feeding the duck and going down the biggest slides at the park. Her life is so full! Her spirit is so free and amazing! She's doing things I never dreamed she's be doing...talking up a storm, telling stories, joking around, enjoying life. I, in no way, want this post to sound negative...it's just real life. And sometimes, real life is just hard. When the tough stuff happens, we are learning to just completely treasure all that is good, realizing that it's all temporary...joy always comes.

Our neurology appointment was cancelled on Friday morning due to a sick doctor. It is now scheduled, along with a cardiology appointment and bloodwork for October 29, unless there is a cancellation. We have the benefit of being able to drop everything and head north, so we may be there next week--we shall see. She is scheduled to see the best of the best--for that we are grateful. I will try to update when we hear anything. Know that we appreciate your prayers!

Have a super day!!

Love,
Gayle

3 comments:

Holly said...

I often come over here and check your blog, and I love it when there is an update! I know how hard it is to watch your little girl in pain, and I also know exactly what you mean about how good God is and how normal life can still be in the midst of it, and how peace can surround you. Our two year old sweetie from China was diagnosed with cancer called Retinioblastoma in June. We are going to the hospital October 12 for a high dose of chemo and a bone marrow transplant. Not fun times, but times that bring us so close to God. Praying for you!

Anita said...

Dear Gayle - Your post is NOT negative, but real! And we are praying for Gracie and for your family. So, so sweet to know how much she enjoyes life and brings such sweetness to your family's life....and momma hair pullin' too! LOL! Yes, the Lord knows and in that we all take each day and rest in HIM with the peace HE gives! HUGS and Much Love to your family!

God's Grace said...

Praying Gayle. She is precious in His sight...and we all you her, and you...God Bless, Terry