Mar 21, 2015

Not Expecting This

Say whaaa???

(This was me on the phone yesterday with my 'Oh no you didn't' look.)

As most of you know, Anna has Gorlin Syndrome, and you can read more about that by clicking here. She's had close to 250 cancer spots removed from all over her little body; however, some of her other issues don't fit exactly with Gorlin. After some Googling extensive online medical research, we thought we had found the missing link! We mentioned it to our absolutely fabulous doctor, and she had already been working behind the scenes to have Anna's DNA tested for this exact syndrome. Brilliant! So we did the blood test and have been waiting for 4 weeks to hear back, really, just to confirm that she did indeed have this other syndrome tacked on to Gorlin (it's on the same gene, for pete's sake, so of course THIS is the missing piece!).

Well, the call came yesterday, and she tested negative for this other syndrome.


Shocked. Stunned. Floored.

But this was going to tell me everything I needed to know about Anna's future!

I am a planner. A PLANNER, people!

Mary's life is all planned out; I'm trying to work on Anna's now, and this phone call was a major set-back! What in the world am I supposed to do now?!

This is how I feel:

And I feel as if I've been 'loading' for a loooong time.


I know what to do.

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." ~ Jeremiah 29:11

Oh, friends, we throw this verse around don't we. We offer it up as comfort in a myriad of circumstances. But, to really put our faith and trust in that verse, in God, to handle our unknowns, well, that's something else entirely.

That's. just. hard. 

Especially for me, the over-planner.

But, God made me this way, the over-planner that I am. And He made Anna the way that she is. And He made you the way that you are. And He does have plans for us. And even though I have absolutely no clue as to the future, God already has it planned out, and it's for my good, and Anna's good. So, as hard as it is, I have to keep trusting and looking to Him.

And it's so hard for me because I want to DO something. You're that way too, right? Trusting and resting in God's peace is much, much harder than actually 'doing' something. It requires patience and self-discipline, things I'm pretty crumby at personally. But, really, I think we make it hard ourselves - God doesn't make it hard, quite the opposite:

See, I make it hard, but it's not. God is not hard - God is love and rest and peace, and I have to remind myself of Him and who He is all. the. time.

I was trying to describe to a dear friend the other day what life is like right now. And this was the best thing I could think of:

Remember this from Dumbo? I'm like the baby in the sack on the cloud, and when I stop thinking about Jesus, I start to fall through the cloud. And then as soon as I look to Him, He pulls me back up. 

That's me, and that's where I've been for a while. And I'm sure you've been there, too, and you might be right there with me now, on that cloud. And you might be thinking, as I do, "God, I can't handle this!" And you're right. WE can't handle this, and we're not supposed to, friend. Our job is to trust in God and know that He will handle it - He has plans that are for our good. And I'm not throwing that around lightly; I'm right here living it with you. It's hard, but God is good, and He will handle our fears, our doubts, our diagnoses, our wayward kids, our sick parents, our everything-that-could-go-wrong. 

Let's focus on Him, and He'll put us right back on that cloud. And if you are indeed on that cloud with me right now, please know that you're in my prayers.

Thank you for your support during this journey, and I'll be sure to keep you updated.


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  1. Dear Melody, I did not not know!! I now know to pray extra for you and your little one!! Life is just hard at times,but in GOD's plan it is good and we can trust and rest in HIM on this cloud!! I am sad you and your family have to go through this but keep your eyes on JESUS ad HE wil see you through. I can handle wait,but wait patiently? I really have to leave that in HIS Hands! HE's always Faithful! We had a real spiritual battle going on this morning - it felt like GOD and satan were battling for my body! I was shaking uncontrollably! My husband read scriptures, we sang praises we put on our ARMOR and we rebuked satan in JESUS NAME! It took awhile but he was defeated!! Praise GOD! It does feel like time is getting shorter, but that is up to GOD. I'm praying i can make it to May 10th for my first grandchild's wedding and all our family will be together! :) Or beyond if their are more Cuddle Bears to give away. :) I just have 5 more and can't decide whether to order more - maybe for each of my grandchildren! I gave my 12 year old son one last night for Spring. He was delighted!! I will be praying for you all and i would appreciate your prayers! Does your little girl have her own CB :)
    Love and Blessings, LaNita

  2. Thanks for the update.. I'm following... I'm praying!

  3. Thank you for sharing your heart and struggle. I know us Momma's of special needs children need to be vulnerable enough for others to know how to pray for us, and how to be compassionate for the different road we travail. Hugs Colleen :)

  4. Sending up extra prayers for you, my friend!

  5. Prayers to all of you for everything. May God answer your prayers and grant you peace.


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