Meeting "The Other Side of 615"........

Every May for the past five years  we have travelled to Blacksburg, SC for Camp LUCK Family Camp. This past May was no exception, this year we took Phil's sister Jacquie and her husband Tony with us. Each family is assigned a Camp counselor just like when you went to camp as a kid. However they did not stay in our cabin, but they did have meals with us, helped us if we had questions and just made our camp experience fun.

Our Family Camp counselor was Amanda and Madelynn just loved her instantly. At meals I did not exist, Madelynn was only interested in eating if she could sit with Amanda. It was very cute to watch her weasel her way right next to Amanda for each meal. When Sunday came Amanda had to leave before camp was over and would miss our last meal together. Madelynn was heartbroken. It was pitiful.

You see Amanda had a long ride ahead of her. She is an up and coming songwriter from Nashville and one half of the group Aberdeen Green. She was sad to depart but did not leave us empty handed. She gave us a paper bag CD with a sample of her songs she wrote/co-wrote with Carley, the other half of Aberdeen Green. Through facebook I have kept in touch with Amanda and discovered she was going on tour for the summer and part of the Fall.

Snooping through the tour schedule Aberdeen Green would be close to us near Madelynn's birthday. As luck would have it we were able to surprise Madelynn and see Aberdeen Green, Alexa, and Jessica Cayne during their "The Other Side of 615" tour. So Saturday August 9th we, along with Phil's sister and her husband, travelled to Southern Pines, NC and found Amanda and all of her tour mates. I had no idea what we were in for but they did not disappoint.

 

Aberdeen Green gave us a private concert, in honor of Madelynn. They recently completed and released their first record entitled, "The Oak Tree". They gave Madelynn a signed copy for her Birthday and sang Happy Birthday both during the private concert and when they performed live during the public show. We met Alexa and Jessica and were able to listen to them sing live as well. The whole night was pretty amazing and we could not have asked for a better evening for Madelynn. Every time I looked over at her she was grinning from ear to ear. As her mom it melted my heart to see Madelynn exuding so much joy.

 

 

 

 

 

 

Amanda gave up a weekend to volunteer at Camp LUCK Family Camp, she has been on tour for about two months and stopped everything to help celebrate Madelynn's birthday and even spent two days at Camp LUCK Kid's Camp this week. I admire her for staying grounded and remembering what is important and focusing on what is real. I was truly touched how kind she and her band mate, Carley, and her tour mates, Alexa and Jessica, were. They treated us like old friends, hugged us like we were family they had been missing and treated Madelynn like a princess.

Thank you, Amanda, Carley, Alexa and Jessica,  from the bottom of our hearts for making Madelynn's birthday a night she will not soon forget; even if she did fall asleep before the whole night was over (LOL!).

TTFN~

Experiencing the New River........

This has been a very busy summer. At least once a week someone asks me, "Where are you going now?"

This summer did not start out the way we had planned but we adapted and moved on. A few weeks ago was our last official week of camps. I could have taken a week off just to recover from that. Instead my friend Stephanie (The Groupon Junky, LOL!!) and Phil bought passes to tube down a NC mountain. At least that is all they told me when the purchase was made.

However that isn't quite what it was. It was all day passes to get in a tube and float down the New River in Boone, NC. I had no idea what we were in for. I have to say I was a little nervous, I didn't know how safe this would be for the kids. I had visions of  spending all my time keeping them safe instead of enjoying myself. Again I was very, very wrong.

The weather was exquisite, the water was calm and shallow, it was the PERFECT environment for kids. If I tried to plan this day myself it would have been an epic fail. Instead we were given a gift beyond measure.

 

 

 

Once we got in the van that carried us further up the mountain and we entered the water I put the camera away. I was too afraid to take it down the river. Hindsight is always 20/20, I wish I had taken it. The water was calm but yet flowed just fast enough to enjoy every curve of the stream. The rest of the world did not matter, no cell phone, no one demanding one second of my time it was true perfection. I could hear the kids giggling and laughing, every time I looked over at Phil he looked like her was sleeping down the river; it was truly an awesome day.

 

When Phil and I chose where we wanted to live it appeared to be far enough away from the hustle and bustle of the city. Today that it not true since we used to be listed as the fasted growing county in the US. Now I can walk to the grocery store, hardware store and the gas station. Going up to Boone we were so far up in the mountains my phone stopped searching for signal because there simply was no signal, land line required as I liked to call it. The farms and the land were in their original, honest form, the way God made it. Needless to say I can't wait to go back.

 

 

 

Thank you again to Stephanie for being the Groupon Junkie and to Phil for always trying to find us a new adventure and making memories the kids will not soon forget. If you ever get the chance to try something new head up to Boone, NC until your phone can't even search for signal, take a deep breath and just savor the beauty in front of you.

 

TTFN~

 

 

 

Happy 6th Birthday Madelynn!!

Six years ago today I checked myself into the hospital hoping Madelynn would be born sometime today. Fifteen hours later Madelynn joined us, we had no idea what surprises of her own she came with.

Madelynn will always have heart disease and she will always be a CHD baby. For a long time that is what defined her, that was our whole world. As Madelynn has grown, life has been less about being a heart kid and more about being a kid. Life used to be all about her medications, her specialists, what she couldn't do and what she had to do.

Life is much different today. My heart warrior still exists but she exists in a new persona. She is a princess, a soccer player, a computer gamer or a basketball player. She wants to try everything and her world has no limits and she has NO FEAR!!

This is the ultimate goal every parent wants but heart families yearn for normalcy or their idea of it everyday.

Madelynn and her journey has changed us forever. She gave us a new vision of what we wanted out of this life. As hard as it is, I love helping other newly diagnosed families. Whether it is as simple as telling them all of this is "normal" for a heart kid, giving them a much needed hug or reminding them they have the power to be their child's advocate. Some families I meet once, some families I have known for years. Without Madelynn I would have never understood this empowerment or known how important it is to share with other heart families.

Don't get me wrong Madelynn still has her struggles. She still weighs less than 40 lbs, food is still the enemy, she still has problems with her lungs and her heart still has to be checked for the rest of her life. They are just that struggles,we don't let it define her. At least we try not to.

The other day Phil was looking at the soccer schedule and the age groups. He told me there is no group for Madelynn. I asked him if he was sure about that. He told me they only have a U7 group. I laughed and said, "Phil your daughter is going to be SIX she belongs in the U7 group." As surprised as he was by my answer I was just as surprised as it came out of my mouth.

As Madelynn celebrates each birthday my heart is filled with more and more joy. She beat some very grave odds. She reminds me daily that everyday is worth fighting for. God had a beautiful master plan when there was no earthly reason she should  have been born. Madelynn changed everything for us and we are better for it.

Happy 6th Birthday Madelynn!! Thank you for making me a better mom and person. Thank you for being that shining light that sometimes is just what people need. Thank you for reminding me everyday there is always something to smile about.

Love, Mama

TTFN~

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