Archive for April, 2013

30 Apr 2013

The Best Day Ever

6 Comments Adventures, CAH, Everyday

My Jake is back.

He is talking, up, alert, reading, smiling, and being Jake. The improvement is vast considering where we were 48 hours ago.

Thank you, thank you thank you for everyone’s prayers. Knowing that everyone has been thinking of our family has been overwhelming.

We are still watching Jake in the ICU.

The brain/ body is an amazing thing not to be taken for granted. Chance and I have learned more about the kids condition and what lies ahead of us for the kids and how we can better take care of them when they get sick.

We are blessed that Jake has come so far. All signs point to Jake making a full recovery. I don’t know if I’ll ever get back the years back I lost since Sunday morning.

So kids your kids, kiss your loved ones and be thankful for today.

Jake earned the game ball on Saturday. Life moves fast and furious. It can change in a matter of moments. Today I am thankful that Jake is back, Shelby is healthy, Mia is happy and Abby is recovering from surgery beautifully! One day at a time. That’s all I can ask for. I’ll worry about tomorrow later.

29 Apr 2013

I Would Sell My Soul.

No Comments Adventures, CAH

Have you ever made a deal, plea or promise to the greater powers for a wish to come true? You close your eyes tight, talk out loud and pray to see a sign that your wish will be granted. You wish with all your body and soul. Your heart hurts because you know that your wish HAS to be granted.

You wait. You pray. You promise ANYTHING if it would grant you your wish. I would sell my heart and soul if I knew that my children would be kept out of harms way.

And I did. Last night. I made promise after promise about what I would do if my wish was answered. There was no negotiating. I offered up everything I had, begged and pleaded.

My wish, our prayers have been answered. Jake is doing so much better. We are talking, laughing, crying and planning. Planning all the things I said we would do. Or that I would do… For him, for them.

As parents, our most prized possession is our children. We do anything it takes to keep our kids happy, healthy and here, where they belong.

29 Apr 2013

The Perfect Storm

1 Comment Adventures, CAH, Everyday

The perfect storm consists of everything in my most darkest nightmares to happen at one time. Today was that day. I knew that it was always a possibility but I didn’t think I would see it happen for a while.

Both Jske and Shelby are resting in ICU from an adrenal crisis. It was the stomach bug, low sodium, low sugar and other levels that were thrown onto a spiral that I could not control.

With 2 kids side by side in the ER at 5am, my world came to a stand still. This is what it feels like to have your heart torn from your body. We waited for both kids to be transferred to the ICU where we wait. We wait to see the damage caused by the perfect storm we couldn’t prevent.

CAH is the condition that we live with daily. It’s not something that is common. Nor something you would even be able to know the kids have. But when it is time, it comes out with a vengeance and makes sure we know it lives with us.

My disaster relief team is large and strong. They come in packs, doing everything to help us get through this tough time. I lean on them for support and for honestly do not know how I could make it through some days without them. I hope they know I would do the same for any of them on any given day.

But now we wait. We wait for Jake to show us signs that he is ok. Shelby is doing much better. Resting but here. I do not like to sit still, but when you are in the eye of the perfect storm, that is what you have to do. Sit still and wait for the storm to pass to see the rainbow.

23 Apr 2013

Now I Can Rest.

No Comments Adventures, CAH

I type by the light of the ipad.

In a room the size of a closet, shared by another family.

On a couch the size of a toddler bed, harder than a rock.

I try not to move or to make a sound.

I try not to wake The baby as she rests and partying that the baby next to her does not wake her.

I am thankful that we have made it to Tuesday. I didn’t think I could make it. I have waited for today for 12 months.

12 months ago, I knew that today would come. I was pregnant and knew the next steps. We had been through them before. The dexamethasone, the weight gain, the insomnia, the visit to New York, the surgery. I calculated the days, the months and tried to plan it out in my mind.

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So here I sit, at 3:30 in the morning, typing away as I do what I do best. Earning another badge on my parenting uniform, that I wear so proudly each day. This is what I do because it is what we all do as parents for our children. We do the best that we can.

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But now it’s over. The trip is almost finished, the recovery has started and now I can rest. I can rest knowing that her father and I have made every decision for her with the best of intentions. We have the best doctors looking after our daughter. I would have it no other way and neither would you.

But now I can rest. I will rest knowing that my daughter is healthy and will go home soon. It’s been a long road to get her but for now, it’s time to rest.