Ending and Beginnings......Part 1

In the last few days I discovered I had not posted since the end of May. So I am going to attempt to catch up over the next few posts. Since the Memorial Day Holiday life spun out of control. Besides my involvement with Levine Cardiac Kids (LCK) and Family Advisory Council (FAC) at Levine Children's Hospital and the required meetings, I feeling like I have been chasing the bus I missed.

I attended a meeting at the hospital where we invited families who had recently joined LCK. We met some amazing families. I met the Jackson family whose son is in the hospital now and earlier last week had his third open heart surgery and reached the 100 day mark in the hospital. I am not going to lie I felt incredibly blessed Madelynn was only in the hospital just under 30 days all together. The strength it requires to be a parent of a heart patient or any other chronically ill child is almost unbearable.

In talking to some of these families and my heart family friends, I discovered something I am not sure I ever did until recently. At some point in life you have to grieve the loss of the perfect baby with all 10 fingers and toes. You have to let go of the normal life you dreamed about and accept the massive curve in the road during a rainstorm that is now your life.

For us personally, we had to accept all the 'ologists', the revolving door medical bills and most important find the new "normal"; what ever the he** that is. I used to shelter Madelynn and I believe in some cases hold her back. But I have discovered when given the chance to fly she will soar with the best of them.

Don't get me wrong there will always be that reality check when  we walk through the pediatric cardiologist door and I mentally hold my breath until we walk out. Most parents just get an annual physical for their child, Madelynn also has to get a heart and lung check too. Because of the way Madelynn was diagnosed, I am always leery walking into the appointments. I will never assume everything will be fine again.

On a day to day basis, I let go of that stomach twisting chaos and focus on the fact that Madelynn will be four at the end of the summer, can write her name, log-on the computer and play games and asks a plethora of questions everyday. The amount of questions she wants answered is absolutely exhausting. However, I just remind myself it is how she learns.

Every heart family has a different but similar journey and are also at different mile markers on that road. Knowing we are all traveling together and there are certain things you never have to explain to them is a huge comfort. I am grateful to them and hope I can always return the favor to new families.

TTFN~

Camp LuCK 2012

We arrived as Doctors, Nurses, Lawyers, Architechs, Banking Executives, Accountants, Police Officers, Stay-at-Home Moms you name it, all walks of life were represented on the hallowed grounds of Camp Cherokee. Only this weekend it was Camp LuCK: 3rd Annual Family Camp Weekend.

Camp LuCK isn't for just any Family. To qualify, you must be a Congenital Heart Defect (CHD) Family. Rest assured NONE of our Families asked, insisted or wanted to be a CHD Family; we were CHOSEN. We have all wrestled with wanting to know , "Why us?? Why do we have to experience this journey?" In some cases with terrible uncertainty. Once I discovered, accepted, wrapped my head around "CHOSEN" and lived my life as a CHD Family, I realized it truly was a GIFT.

Not only as Parents do we become these AMAZING people, we are raising some of the most OUTSTANDING children.

Shortly after arrival "unzipping" is completed. We were no longer these professionals, we are just parents raising a "Heart Warrior" and their healthy siblings in a world that doesn't always comprehend the battle. Walls are shattered and crumbled, everyone has a similar story. Every family is marked with a scar. Only here at this camp we see the Glorious Gifts beyond the scars.

We observe our children laughing, playing, dancing, running, thriving and in that moment when nothing else matters and it will be a memory burned in our history.

This year, my goal was to truly enjoy and collect as many memories as one person could hold. I didn't even take my first picture until 18 hours after I arrived. We made memories my children will carry for a life time. We laughed more, strengthen friendships and down right wore ourselves slap out thriving on every moment.

If I had to guess with all the cameras brought to the camp grounds more than 5000 pictures were taken. Here are just a few of the photos (memories) I collected.........

Thank you again to Levine Cardiac Kids, Camp LuCK Staff and the Fabulous Volunteers  who helped emblazoned outstanding memories we will cherish forever.

TTFN~

Camp LuCK 2011

Things have been a little nuts and I am trying to catch up on my postings. Over the weekend we were able to go to Family Camp and get "unzipped". We arrived at Camp LuCK Friday evening and settled in for good ole Family time. By the time lunch time came Sunday afternoon we were absolutely exhausted but the best kind.

We are grateful for all of those who worked tirelessly to make our weekend unbelievable. Now that we are home, unpacked and all the laundry done we are already looking forward to next year. Thank you Jay "Bird" Thompson, Dr. Rene Herlong, The Jackson Family and everyone else who helped make our weekend of fun memorable.

See you all next year.................

TTFN~

I know I posted this on Facebook too but for family not on facebook I thought I would share.

Expected and Unexpected Visitors

Friday afternoon we patiently waited for Phil's brother Jason and his wife Franka and two of Jason's boys to arrive. I don't think I have seen Jason and Franka for almost two years. It was very nice to see them. The kids were thrilled when they realized they were here.

We didn't do anything spectacular but it was nice enough to grill out dinner, the girls got to escape to get pedicures and the kids played until they were literally exhausted. Today as Jason, Franka, Jared and Kaden headed to the beach we started preparing for the craziest week this year.

Kaitlynn, spent most of the day completing all the work she will miss being out of school a few days. Jackson after watching a movie or two completed his as well. We head to DC this week to bury my best friend's father at Arlington National Cemetery. I know her father would appreciate the fact that he has brought us together even if it was to wish him farewell. I am so excited just to see her.

We will head home so that we can see Jackson and the rest of the kindergarten's in their year end performance. I love kindergartner's and this musical performance ought to prove a little comical. Most of all it will be nice to just highlight Jackson. Sometimes I think he and Kaitlynn feel a little left out and night's like this help remind them they are important.

But oh the week is not over, Friday afternoon as soon as school gets out we are on the road again for a weekend to get completely "unzipped". We are headed to CAMP LUCK - Family Heart Camp for the weekend. No phones, TV, or other electronic devices just time to spend with Phil and the kids and other heart families. Sometimes it is nice to be around others who have walked our road and understand a new "normal".

Thinking the upcoming week could not get anymore exciting..........I was soooooo wrong. Over the last few weeks we have heard strange noises in the wall behind the dryer. We knew we had a momma bird make a nest on the outside of the dryer vent and where we live you can battle with other small critters. Phil however was convinced it was a bird.

After dinner he decided to move the dryer and investigate. He pulled the dryer vent off the dryer using Jack's flashlight to look down the vent. But there was nothing there.......Seconds later a FULL size robin flew out of the DRYER right over the top of Phil's head. A slew of expletives "flew" out of Phil's mouth to described his shock.....I yelled WHAT, WHAT, WHAT, is it!!!! There was this dramatic pause and Phil yells "BIRD!!!" Here she comes rounding the corner to the dining room and I hit the deck.

It was utter chaos the kids are jumping up and down yelling THERE'S A BIRD IN THE HOUSE!!!, Phil is trying to compose himself not to swear any more and you can tell his brain is burning "How in the H_LL do I get a bird out of the house. As the momma bird is making her rounds about the ceiling, the kids are really freaked out to see the bird up close and personal and I just kept ducking hoping not to get pooped on from above; the bird flew into the blinds.

We were able to trap the bird between the blinds and the window. As Phil kept her trapped and hoping not to cause injury I stuck my fingers through the blinds and opened the window, popped the screen and away the momma bird went to freedom. I would have never guessed the noises I have heard over the last two weeks was a bird in the dryer vent.

But I believe the best part of the story was listening to Maddie retell it to Phil as if he weren't here. Never a dull moment in the Addler household.

To Jason and Family: So glad you were able to stop by on your way to the beach.

To Justine: My friend I am so sorry your Father is gone but I am so glad he is no longer suffering and the thought of your mother meeting him as he entered heaven what a joyful reunion that must have been. Can't wait to see you.

To all the Camp Luck Campers: I hope that all of you take full advantage of Family Camp this coming weekend. To Jacob's Family: I can't imagine what it will be like entering the camp ground without him but I know he will remind us he is there in spirit all weekend.

To Phil, my bird rescuing hero: Thank you for always reminding me there is nothing in life that a little humor can't cure. Hopefully the kids didn't hear the potty words, LOL!!!!

Hope everyone has a great week!!

TTFN~

LCK Walk A Thon 2011

For those friends and family who are not on Facebook, I wanted to make sure you were included. This weekend we participated in a Walk A Thon to raise money for Camp Luck. This is the Heart Camp that we went to as a family May 2010. However, starting in sometime in 2012 there will be Family Camp, for the weekend and also Camp Luck just for the 'Heart Kids' and their siblings for a week.

We are very excited to participate in this. To see all of those bright shinning faces with there walking shoes who could have asked for more. To learn more about Camp Luck click here. If you feel so inclined to send a tax deductible donation to Camp Luck (5013C applied for) please use the following address Cadwalader, Wickersham and Taft 227 West Trade Street Charlotte NC 28202, Attn: Bryon Mulligan.

We are thrilled to watch as a young boy's dream comes true.

TTFN~

Pray for Jacob's Family

After Madelynn's surgery two years ago, throughout her recovery we would find gifts in her room. Different non-profit groups left gifts as she recovered. One of these groups was Levine Cardiac Kids (LCK).

One night while Madelynn was recovering in the hospital Phil and I went down to one of their meetings. What a stellar group of people! I came to know an Amazing LCK mom, Kim. Her son, Jacob, had a few defects with his heart; one was the same defect as Madelynn.

It always gave me some sense of relief when I would see Jacob because he was a teen-ager. One of the oldest cardiac kids in the group, he gave me hope. Just looking at his infectious smile and watching his teenager antics, he showed us life would find normal again after Madelynn recovered.

Over the last two years as I have attended meetings and events I have talked to Kim some about Jacob and his needing surgery this year. The surgery took place Wednesday December 1st. I didn't want to pry so I would check his caring bridge page or face book pages of other LCK moms for an update. Thursday a one sentence post took my breath away. "Jacob needs a miracle. Pray Hard."

I just started to pray harder.

This weekend was Kaitlynn's Birthday and Party so I was trying to stay focused on that. But Saturday Morning something struck me as I got dressed, I put on my Camp Luck shirt said a little prayer and started my day. Finally, late Saturday Night I checked a few web pages to find an update.

Jacob passed away from complications of that surgery.

This was a wonderful young man who will be missed by so many. He was a true leader among the cardiac kids in so many ways. It has been difficult to explain to the younger children that he is gone. However, it was nice to hear they were able to donate his liver and kidneys to save other lives.

Please just pray for Jacob's family as they mourn his loss and celebrate his life it is going to be a long road.

TTFN~

Things I have learned: Part 1

As we are approaching Madelynn's second Heart birthday I wanted to start sharing the things I have learned over the last year.

Shortly after Madelynn's surgery there were many days I would write. I would write letters to Madelynn sharing my exact feelings that day as we were living this terrible nightmare. Until recently I never realized how much I wrote and wrote and wrote.

Last year I decided to make changes in the house as to who was in each room. Phil rolled his eyes and me and I am sure all he could think was, 'what in the world do I need to help with now'. Knowing that look I told him not to worry I did not need his help I would handle it myself. And away I went......

I had to move the girls and re-paint the room to make it Jack's room, move everything out of the bonus room and move the girls in to the bonus room, move the bonus room items into Jack's old room. Sounds simple enough right. It took me about 3 months after work, on days off and any chance I could find. By the time we celebrated Madelynn's first heart birthday I was finished. That is except for a few boxes of stuff I had no idea what to do with.

In hindsight, I suppose this was my therapy on how I kept it together during those ridiculous times.

For almost a year the boxes sat. That is until one day I got sick of looking at them and started going through them. Oh the stuff I found.....gifts from friends I had in another life, a few pictures of much younger days and lots and lots of writings that I knew some day I would do something with.

At a Levine Cardiac Kids meeting there was a therapist that came in an spoke. Not about the parents or child's heart journey but about the other healthy children in the house and how you can help them cope and bring the closest thing to normalcy into your home as much as possible. She really was a great speaker and I learned so much that evening.

Then one thing stopped me in my tracks. 'For all of you parents who are dealing with this on a regular basis remember you were chosen for this job'

CHOSEN.....are you kidding me. There are many things in life I want to be chosen for but this was not one of them. I want to be chosen to win awards and be acknowledged for all of my hard work and success'. This was not what I had in mind. But I suppose what I had in mind was not the road I was to travel.

When I looked up the definition of the word chosen I came up with ...preferred above others....once I accepted that life changed. I was chosen above all others to be Madelynn's Mom. To get her healthy again I had my work cut out for me.

I learned that no was not in my vocabulary and no matter what the result, we could always do better. In less than a year, Madelynn went from being a very sick, 5 month old who could not hold her head up and not being able to keep a bottle down to......walking, talking, learning to love, eggs, peanut butter and chicken nuggets.

What I supposed I learned most is the following........

"I am challenged to receive life just as it is to experience all that is serene and all that is difficult."

TTFN~

Carolina Panthers and LCK

Earlier today we had the opportunity to take the kids to the Carolina Panther Stadium for a tour and for the kids to meet and play some games with Sir Purr. This event was sponsored by LCK (Levine Cardiac Kids) and the kids had a ball.

(Kaitlynn)

(Jackson)

We were in the group that met Sir Purr first and I had no idea what I was about to witness. Sir Purr comes roaring up on a four wheeler and the kids and parents are all cheering. All of the sudden Katie, Jack and Maddie are gone. Phil tells me they are hiding behind a sign. I find all three of them crouched in a corner sobbing.


They are afraid of Sir Purr.


I assured them that he would not harm them and went with them to stand in line to meet him. They were so afraid if they could have found a way to velcro their bodies to me they would have. Between the three of them every time I took a step it was like dragging an extra 100 lbs (Literally!!!). Maddie wanted nothing doing with the big black cat though. She wouldn't stand next to him for anything.





By the time it was our turn I had calmed them enough to meet him, hug him and stand long enough for a picture. Once they saw that the other children weren't afraid they relaxed and enjoyed the rest of the visit. I couldn't get them off the mini football field or to stop running.

After the visit with Sir Purr we were scheduled to tour the stadium. We had to cut it short as we had a mandatory meeting at church for Katie and Jack to meet their Faith Formation teachers. I was disappointed that Phil didn't get to tour the rest of the stadium but the kids had fun.

Overall it was a great day and hopefully one the kids won't soon forget. THANKS LCK!!! We had a great time.

TTFN~

The Results Are In..........

I leave work and get home only to have to wait for Phil so we only have to drive one car. I am doing everything I can to pass the time and wait. Did I tell you I LOATHE waiting!!??


It has been a while since I have been to the Sanger Clinic so I was quite surprised to see the decorations on the wall. I knew they would go up but I was still very surprised to see it. The picture taken of Madelynn in December was converted to black and white and posted on the wall. All of the Levine Cardiac Kids had their picture taken last year and they were now covering the clinic wall with beautiful bright shinning faces. As I walked in there she was. It was as if a kind of peace came over me. I knew what ever we would find out things would be ok.

Madelynn started with Great News because she had gained a half a pound in a week. As the nurse tested her arms and ankles for blood pressures they could not get any readings when they finally get one it was so high you knew it was wrong. Finally after a few worried moments it finally registered and it was right where it should be in both her arm and ankle. I think Phil and I held our breath for 10 minutes because when we exhaled it was so loud.

We were then taken back for her echo. The tech was really funny she kept offering a DVD for Madelynn to watch. I assured her that Madelynn would be just fine she has her Mommy and her Daddy lets just get on with it. After about 45 minutes Madelynn started to get antsy but it was almost over. When the tech was finished she complimented us on how amazing she was and that she was her best patient of the day.

When the Dr. came in Phil and I held our breath again and waited for words any words to come out of his mouth. Then they came, "Madelynn is great!" huge exhale again. He complimented the surgeon for his stellar work. He then took her pulses, listened to her heart, saw how active she was and his only other comment was, "There is nothing wrong with that child."

Phil and I were so stunned we actually asked, "Are you sure??" (insert laughter here)

We were so prepared for something to be wrong we weren't prepared for it to be all okay!!!

Because Madelynn is in the 50th percentile for her height at 34 inches but only the 5th percentile for her weight at 23.7 lbs it is hard to keep her body warm. So I guess all we need to do is make a conscience effort to keep her body warm since she is such a bean pole, while swimming.

So yes she has been cleared to swim, we were instructed to spoil her rotten this weekend to make up for being poked and prodded on her birthday. So we will follow doctors orders and have a great time.

Thank you to all of you that prayed for her today. We would have never made it this far without all of your prayers and they are greatly appreciated.

Have a great weekend!! We're going to...............

TTFN~

Heart Families Dinner

So it is 4:30 in the afternoon and I am saying good night to the Business Manager before heading out the door. All of the sudden my alarm on my phone goes off. It is reminding me I need to be at the hospital in less than an hour through rush hour traffic. I am so glad I put in my calender I almost forgot.

I used to have to work myself up to go into the hospital to keep from losing it. I don't know why because Madelynn is doing well. But today it was easier. So I went the guest services desk to get my ID badge to volunteer. Once a month, the LCK families bring in dinner to share with the parents and other family of children in the CVICU. It gives the parents a few minutes to step away, get something to eat, talk to an adult that is not a nurse or doctor. I think it is a great idea and like to do it.

Well I waited and waited only to eventually discover that is was cancelled this evening and there was a communication error. But the hour I was at the hospital was not a total loss. I was able to talk to some of the nursing staff for just a few minutes. This is just a stellar group of people anyway, never a waste of time.

I waited in a hallway in case someone needed help carrying food (not knowing no one was coming) and I discovered many things.

-I discovered that my daughter is in a picture on the wall leading to the CVICU promoting the LCK kids support group with the help of the Child Life Specialists.

-I discovered that on a LCK Badge hanging on the wall both my daughter and my son wrote their name I could pick it out anywhere.

-I discovered that my friend who realized at Camp LuCK her daughter could write her name could write it long before camp as I saw her daughter's name on the wall with my children. (Yes Roxanne I am talking about your daughter).

Then I saw something that I remember like it was yesterday. I saw a mom and dad walking along side a crib as the child was being moved up from the CVICU (6th floor) to The Progressive Care (8th floor). This was one of the best days in the hospital. It means you are that much closer to taking your child home. You could see huge smiles on the parents faces. It's like your child won their first award.

Before I left the hospital I went up to the 8th floor just to make sure I hadn't missed the event on the wrong floor. Who should I be on the elevator with, the Mom gleaming with pride about her daughter moving to the 8th floor. I tried not to be too nosey but I learned she was 6 months old, born with three different heart defects and was recovering from her third and final surgery. I wished her well and headed back down the elevator.

As I pushed the button to go down I decided to head down to the chapel (on the second floor). I stopped in and wrote in the journal wishing the heart families well. I prayed for the health and well being of my own children and said a special prayer for that very, happy mom. Then I just took a minute to breathe in silence; and I went home.

This evening was not what I thought it would be and I could have gotten upset but mistakes happen and I learned a few things too.

What did you learn today???

TTFN~