Archive for CAH

15 Aug 2013

Life With CAH

1 Comment CAH

Life with CAH

What you don’t see is this….

You don’t see the tears, or the look of pure torture in their eyes begging you not to do something. You can hear the screams through the lobby. You can feel her pain through the screams.

The begging and pleading was too much this time. I broke down. In front of her. You aren’t supposed to do that. You have to remain stoic and tell then that it won’t hurt. It will be all over soon. Smiling through your tears, that you must hold back. I just couldn’t do it.

I have been dreading today for along time. 4 yrs old they know the difference. They know fear. They can tell you they don’t want to.

Life with CAH has been alot of work. I know it will get easier. Jake is a rock star with blood draws, but he has been 9 yrs in the making. And this is life with CAH. I understand it. I have my WebMD and will challenge most doctors to talks about the ins and out of this condition, with my children or as a pregnant mother.

I will push back the memory of today and only return to it in another 3 months when we have to do it all over again. This happens often.

I tell myself it will get better. Stay strong. They will someday understand. They will appreciate my strength as a parent. They will know I never wanted to hurt them. I would give anything if it could be me and not them. But it could be worse.

We get to go home. We don’t have daily shots. We don’t have long hospital stays. We get to live our life outside the hospital walls. As normal as everyone wants. And with family by your side, everything will be ok.

This is just a part of life with CAH.

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.

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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.

****

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.

***

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.

02 Oct 2011

The Best Lives Are Never Planned

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If you are wondering what I have been up to for the past 7 years, here is a link to my previous blog: Good Livin’. I still try and post occasionally on it as well as here. Looking back, I don’t know how I managed to fit in everything I did. I guess when you are having fun time flies. This post is my first post in a while. I realized that I really didn’t plan for what my life has given me. Kind of ironic since I’m definitely a planner.

http://tampamama.blogspot.com


02 Oct 2011

7 Years Ago, I Learned Three New Words

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Congenital. Adrenal. Hyperplasia.

3 words that will forever change my life, the people in my life, and the way I feel about so many things.

7 years ago I learned 3 new words. These words combined form more than just a rare genetic condition. They have a meaning to myself and the select group of people that have also been introduced to these words.

Learning how to say these words was a challenge at first, but understanding what they mean will take a lifetime.

The first day that any parent learns of any condition that their child has, or could possibly have, you immediately become AWARE. Aware of the what could, what will, how it does and can affect you, your family and most importantly your child.

You wonder what will happen. Will they have it forever? How do they get rid of it? Will they live to be 100? Will they live to see tomorrow? What happens if they don’t get the medicine? What happens if…. The questions go on and they never stop.

Because of my children, I am a better person. I am more AWARE. I am more aware that there are so many other rare conditions that children are born with or will end up having. For any rare condition, having AWARENESS if half the battle. If your not aware, it doesn’t exist. But it does.

Today, 7 years ago, I was made aware of a condition called Congenital Adrenal Hyperplasia. I will forever have the day permanently etched into my memory. I made a promise to Jake that I would fight for him and this condition. Awareness of the condition is the first step.

Most of our friends know about what CAH is and that 2 of my 3 children have it. I always like to say that we got lucky getting this rare condition. My kids are healthy, happy, and full of life.

Thank you to all our friends and family who support us in just being aware of what our kids have. There is much work to be done on this condition. 1 in 16,000 children are born with CAH. Medicines and technology are constantly evolving. Laws still need to be written that will directly effect MY kids. I am only one person, but as any parent would, we would walk to the ends of the Earth to help our children. I do my part and wanted to thank everyone for doing theirs. Just knowing that others know about CAH means more than you will ever know.

28 Sep 2011

We were REALLY hoping for a boy.

1 Comment CAH, Random

As I was watching this weeks epispode of Parenthood, the characters, ….were in the doctors hospital office talking about weather they wanted to learn the sex of their new baby. Obviously, they would find out eventually, but because their son has Aspergers, they were hoping for a girl because there would be less of a chance that she would have the same condition. The highly controversal process of “gender selection“, is something that many debate over…heatedly. I can see Read more