Always Good

I heard this tonight and just had to put it here before I go and download the entire album. Andrew Peterson is such a wonderful writer; his use of words is staggering.

Always Good
Do You remember how Mary was grieving?
How You wept and she fell at Your feet?
If it’s true that You know what I’m feeling
Could it be that You’re weeping with me?

Arise, O Lord, and save me
There’s nowhere else to go

You’re always good, always good
Somehow this sorrow is shaping my heart
Like it should
And You’re always good, always good

It’s so hard to know what You’re doing
So why won’t You tell it all plain?
But You said You’d come back on the third day
And Peter missed it again and again

So maybe the answer surrounds us
And we don’t have eyes to see

You’re always good, always good
This heartache is moving me closer than joy ever could
And You’re always good

[Bridge]
My God, my God, be near me
There’s nowhere else to go
And Lord, if You can hear me
Please help Your child to know

That You’re always good, always good
As we try to believe what is not meant
To be understood
Will You help us to trust Your intentions for us are still good?
‘Cause You laid down Your life and You suffered like I never could

And You’re always good, always good
You’re always good, always good.

by: Andrew Peterson

 

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The doctors are so happy with how Little is doing that we were told to “go home” on Thursday, September 20. Because of the number of appointments we still have at the hospital each week we are planning to split our time between the apartment and our home. If another family needs the apartment we will make the move home for good. I am asking the Lord to hold off and please let us stay in the apartment until my class ends on October 19.

We did spend this weekend at home and Little slept in her own bed for the first time since mid-June. We all went to church together too. Such a joy.img_2519.jpg

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Cath Results

I am so thankful for the prayers of our friends and family and the calm that comes from my Father. So many people responded to the last update and I really could tell that we were, once again, being brought before the throne. My mom sent me an email which contained the sweetest prayer from the mother of a boy with whom I graduated high school.  I am going to include it here so I remember:

“Oh Lord, as we enter this gift of a day, I pray for my friend Kathy as she prays with Me and So many Others for Her Dear Becky and Precious Granddaughter and Grandson Today…Esp. do we pray for all the tests being done on Miracle Girl………….May they each be done and good results found…..Bless dear Becky each moment of the wait and may they soon have a Huge Tricycle to take home making for some Fun Exercising!!!! May Brother’s Birthday be This Huge Blessing to His Heart and Spirit…May He be amazed at all he is learning this Year and look back on it as a Major turning point for Good in His Life as He is the Cheerleader!!!! May Daddy continue to have a beautiful Smile on his handsome face as He looks to YOu for guidance for Every Moment for He and His Precious Family….

And Bless Grandparents wherever they are esp. Kathy today as She prays , prays and prays more…..May She feel Your Love and Protection as never before as she meditates and looks out at her amazing back yard… We love You Lord and thank You for the opportunity to knock at your door and be welcomed in with a big hug and a loving forgiving heart!!!

In Jesus’ Holy Name,
Amen”

Monday went well.  The hospital scheduler called mid-morning and asked us to come an hour early and I felt like that was a kindness from the Lord. Little had just started complaining about wanting lunch and it was wonderful to have a distraction.

Bubba was great all afternoon. We had one moment of tension but one hiccup in six hours is pretty remarkable. He read an entire book, did schoolwork, and played video games all before joining Little in recovery to watch the first half of SING! I was proud to be his mom and thankful for the Lord’s grace.

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Storybook of pictures to prep Little for each step of the procedure. Megan from Child Life is such a blessing.

Little was so brave. She’s a pro when it comes to an echocardiogram and EKG! Then when it came time to take her back for her test, she waved goodbye and asked me to keep and eye on her Kindle for her. She woke up effortlessly and endured the two hours of laying flat before popping up, marching out, and asking about dinner.

I did fine. I remained calm until our Transplant Coordinator, Christine, came to the waiting room to see me and discuss the possible results and their effect on our lives. That’s when I got teary; it only lasted a minute. The prayers of the multitudes were palpable.

The heart cath covers three different areas – the blood pressures, cellular rejection, and a fancy name I can’t recall that addresses the measuring of any created antibodies. The only result I was given immediately was the report that the pressures in Little’s heart measured perfectly! Every number the doctor shared was exactly what she was hoping for! Rejoice!

This evening the phone rang and Christine reported the cellular rejection findings: Little is level 1R on the Acute Cellular Rejection Grading Scheme. A great explanation of what that means can be found on The Society for Cardiovascular Pathology website. Here’s the basic scale:Screen Shot 2018-09-18 at 10.54.45 PM

“Interstitial” refers to spaces/gaps and “perivascular infiltrate” roughly means inflamed cells. “1 focus of myocyte damage” means that there is one area where the heart muscle’s cells have died. Christine explained that many of the children who have received transplants from Children’s Hospital have 1R level rejection and they sit at that level for years and years with no change. There is no required treatment for this level of rejection. The cardiology team will go in tomorrow and double-check the findings to make sure they all are in agreement and, if they are, we go on with the present treatment plan.

I still haven’t heard any results concerning the third area assessed during the cath. Christine has promised to call and fill me in when she knows if Little’s body has begun building up any antibodies against Dwayne. We haven’t talked much about this portion of the testing and so I don’t know what potential action steps would even be. The Lord will make it all known in His time … “He who called us is faithful and He will do it.”

So, I go to bed tonight comforted that the Body of Christ is alive and well and surrounding us with prayers. I am thankful for this Church family and the taste of Heaven they provide. But I go toward bed with a heavy heart as well. The truth that our journey is far from over weighs on my weary heart. The Truth of His victory does not remove the reality of present grief and brokenness. So I go to bed and I will sing the words of Isaiah 40:11 as I hopefully drift off to sleep.

(When I was in college a friend involved in the same college ministry as me put out an album. On it was a song written from Isaiah 40:11 and the parts I can remember run through my head to this day. I can’t find my cassette, and who are we kidding, what would I play it on if I did find it! I have written him to ask him for the lyrics in their entirety and when I get them I will come and add them here. I bet Andy still has that cassette…)

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