Staying Grounded.............

Today was not what I had planned. I realize Mondays usually aren't but this was a little more than I had planned. My day started out with the girls refusing to get up and arriving to work 30 minutes late. I walked them over to camp and on my way back to the office I got stuck in a rain storm with no umbrella and my office was about 20 degrees. About 12:30 I realized I should have left work 15 minutes prior to pick Jack up from his camp stop. I made arrangements for my friend to meet him and keep him for the 10 minutes I would be late.

It was pouring down rain and Jack did not see my car or my friend so he had the bus driver call me on my cell. I told them the plan and they hung up. I then get a call that my friend she watched the bus pull up and Jack did not get off and she had no idea where he was. I am driving down a busy six lane road, it is raining small children, I suddenly have NO idea where my son is and no one can tell me.

I called the camp and as sanely as possible demanded they find my son immediately. While on hold, that seemed like an eternity, but was probably about 7 minutes; they found him and dropped at his stop. I then called the highest person on the food chain and asked them why it is acceptable for them to break protocol without my permission with my child. I have never heard so many apologies and was promised it would NEVER happen again.

So I am back at work trudging through fiscal year-end reports and suddenly realize 5 minutes ago I was supposed to be across the parking lot to pick the girls up. I was suppose to leave the office at 3 and left at 4:30 with 3 exhausted kids and one Mama wanting a very strong drink. Instead I finished dinner and walked/ran about 4 miles with my walking buddy. God knew it was what I needed because before I could text her she texted me. I felt 100 times better when we were done.

I logged on to facebook to see how things were going and suddenly felt so small. My day that seemed so overwhelming and out of control wasn't even a drop in the bucket compared to what I was reading. Families coping with sudden loss of loved ones, a mother posting her daughter, about Jack's age, had a heart attack from a multitude of heart issues, and another family posting about their child's upcoming second open heart surgery.

I have always heard "God will never give you more than you can handle." I handled today and am getting ready to go to bed so I can handle tomorrow. But these other families I can't possibly imagine the grief, fear and sorrow they must being feeling. Even in my worst moments my life was perfect. But it was only perfect because I had family, friends, prayer warriors and Good Samaritans who arrived and stepped in when we needed it most. We would have never survived with out them.

Some how God always knows how to keep us grounded and KEEP MOVING FORWARD.

HAPPY MONDAY!!

TTFN~

Happy 9th Birthday Jackson!!

It seems that so much of our life revolves around Madelynn and everything she has changed in our lives. But her journey is only a small part of where we have been and where we are going. Today my son, Jackson, turns 9. His journey has been one I wouldn't trade for anything.

There are so many things that make Jackson special; he is my only son and only grandson on my side of the family. He is a middle child which is something I can help him relate to. He had a rough start with tube surgeries, adenoid surgery and having his tonsils out by the time he was three years old. I have watched him play soccer and make his first goal from mid field. I have watched him run down the court on a fast break and make a beautiful lay-up.

But the one thing that I love about him more than anything else is his "Gentle Soul". To see him watch over Madelynn and help other little kids, to hear his teacher tell me he assists those when they don't understand, and to see him give others a chance when they are weaker or smaller melts my heart. His sense of humor and sometimes brutal honesty makes me laugh and brings me back to what is really important. I love his inquisitive mind although sometimes it makes me crazy, he always wants to learn.

Today Jackson starts his last year in the single digits. So much of life will start changing very quickly and I will not be his whole world any more. As long as he knows I am always on the sidelines cheering him on and there when he needs me, I can live with that.

 

Happy 9th Birthday Jackson!!

 

Love, Mama

Miracle Treat Day!!

As part of the Family Advisory Council for Levine Children's Hospital (I joined in 2011) we are encouraged to attend fundraising events when time permits. Last fall was Miracle Treat Day at Dairy Queen. For every Blizzard sold that day a percentage of the sales goes to Children's Miracle Network. Levine Children's Hospital where Madelynn had her open heart surgery is a benefactor of this program. I was told by a representative of the Carolina Healthcare Foundation that if we let them know we attended Miracle Treat Day the kids would get free t-shirts. The kids were very excited to go.

So after an early dinner that night we drove up to the local Dairy Queen (DQ) and bought Blizzards. The kids received stickers, temporary tattoos and other fun goodies from DQ they were so excited. While we were eating our Blizzards I snapped a picture of Madelynn with my phone and emailed it to the representative at Carolina's Healthcare Foundation (CHF). I thought what better way for her to see we went to DQ but a photo of Madelynn eating her Blizzard.

A few days after that email was sent I received a phone call telling me how cute Madelynn was eating her Blizzard. DQ has a photo contest would it be ok if the photo of Madelynn was entered. Thinking nothing of it I said sure.

Madelynn's picture WON!!!

 

 

I did not know what it meant at the time but I was excited nonetheless. I was informed as part of the win DQ needed some additional pictures of Madelynn. Here is one of the additional pictures that was taken.

 

 

 

 

As this journey continued I received a call from the CHF asking my permission to put Madelynn's story in their publication Show and Tell. This is a bi-annual magazine sharing all the fundraising efforts for the hospital and highlighting some of it's patients. Again I didn't thinks a whole lot about it and went on about my day. Then the magazine came out and I received a very excited call from the CHF rep that not only did they highlight Madelynn as a patient she was ON THE COVER!!!

 

At this point all I could say was......"OMG!!!" Two days later Madelynn received this in the mail.

 

 

 

 

 

 

 

I did not tell Madelynn about this magazine cover or the article about her. I let her open the mail. It was a very exciting day. All of the kids wanted to take a copy to school and things continued to snowball.

 

 I received a call from Madelynn's gym teacher asking if she could be the face of this year's Jump Rope for Heart for her school. Because the children knew someone that was truly affected they raised double their goal. Madelynn's gym teacher called me again asking if I wanted to be interviewed for a story in a local paper praising the fundraising efforts. Check out the link here.

 

One night I was cleaning out some old emails and came across something that reminded me that Madelynn had won the photo contest with DQ. I emailed the rep at CHF reminding her I agreed to let them use Madelynn's picture as long as I received copies of everything and had she seen anything yet. Suddenly the snowball picked up speed. I received this in my email.

 

 

 

 

This flier and the poster below will be going out to all the DQ's NATIONALLY  for the second quarter of 2014. The winning of the photo contest last Fall just became VERY REAL!!! Madelynn was stunned when she saw herself in poster form.

 

 

 

 

 

 

 

I wasn't sure she understood how extraordinary things really were until people came to the house who had not seen the flyer or the poster and she very excitedly comes running them.

 

For me I am truly speechless at how the events have unfolded and her beautiful face is everywhere. If I ever had one goal in all of this it would be to spread HOPE to those families that struggle. One day they will also be on the other side of the journey like us. One day they will be living their new normal as if it were the only normal they have ever known. We pray for those families that don't see it or believe it that soon their eyes will be opened to it.

 

 A HUGE THANK YOU to those at Carolina's Healthcare Foundation, the Dairy Queen Foundation and the Children's Miracle Network for allowing us to spread HOPE to all of those who read Madelynn's story.

 

TTFN~

Chelsea

The last and most important quarter of my whole world.

As this day began I kissed my husband good-bye and wished him a Happy Birthday. Today he celebrated his 38th Birthday. He is the youngest in our circle of friends. He grew up being the youngest so this suits him. His sense of humor and silliness is what keeps most of us young.

Lately he hasn't been feeling very young. Working sun up to sun down and then some. When he gets home he is so exhausted he usually passes out on the couch. I don't blame him right now the work is there and he wants to take it while it is hot. Lucky for me I already have our dinner reservations made and his gift for our celebration Saturday. In years past this dinner out with friends has been such a good time I leave the restaurant and my face hurts from laughing so hard.

Thinking about it this is my 16th year helping Phil celebrate his birthday. The first present I ever gave him was a dog, Lady. He was crazy in love with that dog. Two of his birthdays were celebrated by finding out he was going to be a dad to boy, Jackson, and a girl, Madelynn. He celebrated another birthday with the Baptism of Kaitlynn. He even celebrated a birthday in Savannah, GA for St. Paddy's Day. At least 4 of his birthday's were celebrated at Waldhorn's (a traditional German restaurant, he loves, we will be there Saturday).

I am sure not all of them were as exciting as the one's I mentioned but neither is life sometimes. One of Phil's birthday's was spent in a waiting room while Jackson had surgery for a second set of tubes and adenoid removal. One was spent stressing about all the medical bills we incurred from Madelynn's surgery and the housing market crash, would we make it.

Today was that reminder no matter what life throws at you, ALWAYS FIND A REASON TO CELEBRATE. So today I celebrate Phil he is a great dad, he works hard to provide for all of us, and he makes me laugh. Kaitlynn runs out the door yelling, "Daddy!" as soon as she sees his truck (and yes, Jackson and Madelynn are right behind her). The kids don't realize it but he LOVES when they do that. It makes all the long hours worth it.

Happy Birthday Pilbert!! I Love you to moon and back, to infinity and beyond, forever and ever.

Chelsea

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~