She's getting better.

Weary turns into worry.

Have mercy. I should not have complained about being weary, clearly.

On Monday of the week I last posted, Norah was admitted to the hospital for her high fevers and swollen glands. After treating her for Kawasaki's Disease, she wasn't getting any better and the doctors began looking for other causes. Some of them feared a bacterial infection in her body and started her on IV antibiotics. Meanwhile, she had blood drawn for a variety of viruses, blood cultured, a chest x-ray to rule out a tumor, and two ultrasounds to look for an abcess (infection) in her lymph node. By Saturday she looked like she was responding to the second IV antibiotic they tried, and we went home. (All tests were negative for the things I mentioned.)

On Sunday night, she was readmitted. The lymph node had grown larger and developed a red streak over top of it. The fever came back. Today she had an MRI which showed an abcess in her lymph node and there is question as to whether or not the infection has settled in her bone as well. Tomorrow she will have surgery to drain the abcess, culture the bacteria growing and decide whether or not she should be treated for bone infection as well. She will likely be in the hospital for another 2-5 days following the surgery. She will come home with a PICC line so that she can receive IV antibiotics for possibly up to 8 weeks.

But you will not catch me saying I'm weary. I'm tired, I'm worried about her, but at the moment, I'm just thankful that she's okay and that we are going to get to the bottom of what's been going on for the past two weeks.

sick girl attempting a smile

Today I'm weary.

A two year old going on four days with a temperature over 104 degrees.

A seven year old who enjoys annoying said two year old while sick and whiny with a fever.

A dossier stuck in California, making it feel like forever until we meet the three year old.

A five year old who thinks it is super fun to be naked. AGAIN. (I thought we passed this stage?)

I love being a mom, but tonight, I'm tired and weary. Good night.

a rare moment

Tennessee Girl

We recently went to Tennessee to visit family. Norah's cousins took care of "Tennessee-ifying" her, as her dad and I put it.

If you know our extended family, this totally makes sense. Bows in her hair, riding a quad. This says it all.

We had a wonderful time.

Hope does not disappoint us

Having a child with special needs is a journey unique to each family who deals with it. Our family handles much of our struggle and journey through faith and through community. We are fortunate to be surrounded by a community who carries us when we need it most.

I've written and rewritten this blog post in my head, and maybe later I'll expound on my beliefs, but for now, I wanted to get some thoughts down in print.

When I have times that I can not deal with what's going on in the daily grind, or when things hit me like a ton of bricks like they did when I received the results of Will's psychological testing two weeks ago, I fall back on my community and on my faith.

One of the verses that I have posted in a special place is from Romans 5: 2-5.

And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out His love into our hearts by the Holy Spirit, whom He has given us.

While I would never choose to suffer or see my son suffer, my life and my character have been shaped by our journey with Will.

I am a better person because I am Will's mom.

We're ready!

Or, at least his room is.

Hope he doesn't mind that all three of his siblings have been in there to make sure the bed is comfy.

With every season change....

....comes shoe shopping.
As if the money I spend on three kids' shoes and the torture of taking kids shopping weren't enough, Will hates the change. At the beginning of summer, I buy him sandals because he doesn't tolerate heat as it is. It takes him a couple of weeks of trying to take his shoes off every waking minute I have them on him, and then all is okay.

THEN comes my favorite season....FALL. Favorite except for shoe shopping where I go to Stride Rite because the worker knows the shoes cost too much is kind enough to wait while I wrestle socks onto my son's feet and then shove shoes on faster than he can blink. The worker might get kicked a few times, I say I like the shoes, I pay the bill and we're on our way.

If you are looking for me, I'll be the one repeatedly putting the shoes back on my son's feet while enjoying the apple cider.