SNOWSTORM 2014......Part II....lol!!!!

Compared to my friends and family up north our snowstorm is a drop in the bucket. Where we live we received about 10-11 inches of snow, sleet and freezing rain; with snow drifts up to a foot and a half. Growing up in Ohio we would have not missed school for the storm that occurred. However, my children were dismissed after only three hours of school Tuesday and are scheduled to return Monday. They were supposed to have Monday off for President's Day but it will be a make up day instead.

We made sure to enjoy the time we had together.

 

 

 

 

 

 

 

 

 

 

 

With today being Valentine's Day my kids are missing their classroom parties. I will get to be their Valentine's today. As Congenital Heart Defect Awareness week comes to a close we will also celebrate our Miracle (Madelynn). Hopefully, the kids will be excited to spend the day with me.

 

At 11:00 am Thursday we were covered in ice and snow. I was a little worried we would have a huge mess to clean up from the ice. This is what I saw.

 

 

 

 

 

By 4:00 pm all of the snow and ice had melted off the trees. We took the opportunity to shovel the walk since everything that was melting was expected to refreeze Thursday night. In between the snow finally stopping and the Big Melt beginning, the kids were able to make a snowman. I must say layers of snow, ice and more snow made it difficult to build a snowman. There was a lot of ice.

 

 

 

 

We hope everyone in our area enjoyed the snowstorm by Sunday it will only be a memory. We hope everyone has a wonderful Valentine's Day. Please remember all of the Heart Warriors and their families. Some children are in the hospital now fighting a good fight. Some are walking around today with no hint of their previous fight. Some of our warriors lost their fight and earned their wings. It is a club we never asked to join but are members nonetheless.

 

Happy Valentine's Day!!

 

TTFN~

Snow Day.........

Sometimes being a CHD family can be a bit overwhelming. Not only for the parents who have to have the strength of Hercules or Thor, what about the siblings who have to stand by and wonder what is truly going on. For us Madelynn's sibling's were so young, Kaitlynn was 4.5 and Jack was 3. There were days I just wanted to cry because something or someone always fell by the waist side.

With the crazy weather, I have been spending a little bit more time with the kids bordering on insanity. Cooped up in the house, when we can go out trying not to spend unnecessary money a little boring for the kids. Today the girls were unable to play outside due to the bomb that exploded in their room. So Jack had a little fun outside while I took a few pictures.

It was snowing like crazy and he was dying to go play in it. It was one of those rare moments where life feels incredibly normal. More importantly it was just a Mama and her son. Once we came inside we made some hot cocoa.

Before our first snow about two weeks ago, I put two new bird feeders out front. I find sitting watching the birds very calming and good therapy. Today with the heavy snow the birds were fighting for food. Jack and I watched the birds and drank our cocoa.

As I flip through my FB account this week I am regularly reminded at how lucky we are Madelynn survived her CHD journey. But today I was just a mom to a son who loved being an only child where CHD didn't matter if only for a few hours.

TTFN~

Camp LUCK.......

Though our experience with Madelynn's CHD we watched the idea of camp for kids with CHD's come to fruition. Like all projects created by a passion it has not been without a bumpy road but we are proud to say we truly believe in this cause.

Children with CHD's get to go to camp for a week at Kids Camp. They get to truly experience camp. Families with CHD's also get a small taste of this experience with Family Camp. It is a weekend to "unzip" and just spend time with your kids and other heart families who have travelled our road. We have experienced Family Camp since it's inaugural year and will be going again this May.

But Camp LUCK isn't all about Camp. I am involved in another aspect called Camp LUCK Cares; the support side of the CHD experience. Sometimes just being there for a CHD family is just as important. But I do not need to re-invent the wheel you can read all about Camp LUCK and what it offers www.campluck.com.

Today we have been invited along with all the other Camp LUCK families to attend a Charlotte Checkers games and spread awareness about CHD's. We are very excited it should prove to be a fun afternoon.

Our journey has been an amazing one not as amazing as my HEART WARRIOR though.........

Thank you Camp LUCK for being there when we needed it and allowing us to show families there can be a great life even with a CHD.

TTFN~

A Warrior of a Differnt Kind....

Today begins Congenital Heart Defect Awareness Week or CHD Week. This is something our family feels very strongly about. During our CHD journey, I have developed a few things I am very passionate about. One of those is remembering the siblings. Every family is different only child, oldest child has a CHD, youngest child has a CHD.

For those families that have more than one child, please do not forget the siblings and helping them find a new normal as well. I can honestly say there is a small time period I have no idea who took care of my other children. While Madelynn was in surgery and recovering in the hospital, I don't know who took care of her older siblings.

I remember calling people telling them what happened and asking if they could pick my children at day care. I remember calling the day care telling them I do not know who will pick up my children. It may be a different person everyday. But I promise you it will be someone you it will be someone they know and trust. I do not know when and if they got a bath. I do not know what they ate for dinner.

What I do know, we had an amazing group of people jump into action at a moments notice taking care of Madelynn's siblings as if they were their own children. But I also know that Madelynn's experience not only changed her forever it changed her siblings forever too. Everything they knew also changed forever too.

Please take time to focus on the sibling(s) like you focus on your CHD baby. Imagine being 4 1/2 and suddenly mommy is never home, you think your little sister died and Mommy never picks you up from school anymore. The fear of not being able to trust mommy any more because she is always gone. When you are able to spend time with the siblings  they are scared you will leave and not come back. I know it changed Madelynn's sister, forever.

The first night I was able sleep at home after Madelynn's surgery her siblings would not leave my side. They sat on my lap or so close to me they should have been in my lap. They begged me to sleep with me in my bed. Being questioned by a young sibling, questions your aren't prepared to answer. How do you assure a sibling their sister is still alive but you can not see her.

It is so many emotions for both the parents and the siblings. One of the things we changed about our family and made a new normal was birthdays. If it is your birthday you get to choose whether you celebrate with everyone or a night out with just Mommy and Daddy. One year my oldest child (not a CHD'er) decided she would not share Mommy and Daddy for her Birthday. Mommy and Daddy took her roller skating, shopping and dinner.

It was GREAT therapy for Mommy, Daddy and sibling. We continue to offer it today. The children are all so close they would all rather be together most of the time. I believe as the children grow and mature a Birthday with just Mom and Dad will be appealing again. As you go about this week please remember our Heart Warriors and all they go through, but don't neglect the siblings and how they are a warrior of a different kind.

Love you all.

TTFN~