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~

Room #6 and some of my cool finds......

In the Fall of 2012, Phil and I started an insane adventure. We decided to gut our living room and start from scratch including removing popcorn/acoustic ceiling. We only had two weeks to complete the project. I have never been so physically exhausted in my entire life.

After a small reprieve I continued to the foyer and dining room. When the dining room was finished Phil looked at me and said, "No more I need a break." So my choice became do it myself or pester Phil until he helps me. Since I wanted to remain married to him, I tackled the next room, downstairs powder room myself.

I have learned, I can do it myself. I can take my time and I can do it. One of the few things I had to learn to do myself is tear down the toilet without flooding the room. I finish each room as much as I can alone and then recruit Phil to help with what I call.....above my pay grade.

Since finishing the downstairs powder room I have also finished the girls room and Jack's room. Tonight I was THRILLED to find Phil came home early. I have been working on our upstairs Guest/Hall bathroom. I was inspired  by this sign.....

I found it 50% at a consignment shop. If Phil heard me say that there would be a big eye roll. It is a weathered piece of wood, LOVE it. Then I found this piece  at a competing consignment shop also for 50% off on a different day.

This mirror has real star fish and sand dollar's. It looks really nice against the blue wall. It hangs below the beach sign. Then we have my latest creation. This bathroom does not have a window it, even though it is on an exterior wall. There is not a way  to add a window without it costing BIG BUCKS!! Big Bucks I wasn't willing to spend.

Sunday I was again consignment shopping. I found this booth that only had painted canvas. These canvas's were not mounted to anything. The corners of the canvas' had pin holes that they were either displayed or from originally being painted. The vendor had a very clever idea to use this curtain rod with the circles with the clip on the end, clipping the canvas and free hanging it. However, I found a particular painting and decided to do something different.

I had Phil case in the painted canvas with left over pieces from casing Jack's window in. The blue in the sky of the paining matches the blue I painted on the wall. I haven't decided whether to paint the casing white or leave it the natural wood. Needless to say, I love it!!

I still have to touch up one small area of the bathroom wall behind the light, clean the tub/shower area and scrub the floor one more time it is coming together really nicely. I was also able to find towels at two different stores.

 

 

As of this moment I have completed half the house in removing the popcorn/acoustic ceiling and giving each room a fresh coat of paint and a few new pieces of décor. I have not paid full price for any of it. Being able to take my time I can find just the right pieces and save a little money. For those that have asked me to post some new pictures here you go.

 

Happy 2014!! My goal is to have the rest of the house finished by the end of 2014. Wish me LUCK!!

 

TTFN~

 

 



10 years old.....

Happy Birthday Kaitlynn!!

I can not believe you are 10 years old today. You were born with these stunning blue eyes that you must have gotten from Grandma Bacho and those crazy beautiful freckles from your Daddy. You know how we love to count them. I am so proud of the person you are becoming. Everyday I learn something from you and I am over the moon you are my daughter.

I hope you like your video. Always remember I love you to the moon and back, to infinity and beyond forever and ever.

Love,
Mama

TTFN~

Thanksgiving 2013

Like everyone else.....I am thankful for my spouse, my children, my parents and those friends that I consider family. My life would never be complete without them and you all make me want to be a better person.

However, my life also needs other things that are overlooked on a regular basis. God brings families, events and circumstances into my life that change it forever. There have been weeks I have no money until pay day but I have a tank a gas. I find my way to the children's hospital for whatever reason meeting, education session, or family visit. When I leave half the time I am in tears. The burdens these families carry I could not fathom.

I find myself praying for them, crying for them and hoping for their miracle. I have seen those miracles come to life right before my eyes. Most people wait their entire life for a miracle. Not only have I seen my own come to fruition, I have watched families sitting at the nth hour thinking their worst nightmare is happening and God swoops in and says not today. Watching that happen takes my breath away.

Sometimes I just get the urge to call someone in my phone list. I call to check on them ask them how they are. Oddly enough, they are having the worst day and needed that pick me up. Reminding them that someone was thinking of them or praying for them makes their day. You have no idea what kind of power that type of phone call has.

Then there are my own circumstances.....most times it is because of the choices I made were not the most ideal. But I accept them and figure out how to KEEP MOVING FORWARD.....NEVER going back. I get to the point "Ok God yes I made a mistake. I accept that. But how do I fix it.....SHOW ME". Most certainly I have to do something that is most humbling. Usually those on the receiving end of my sometimes humiliating experience are complete strangers or someone I don't know very well. But this was God's way of making the introduction or making us better friends.

I realized that sometimes I have to stand back as ask why am I here or how did I get here. More times than not I ask, "Ok God what do I need to learn from this today??" If I just accept that and stop fighting it my life has become amazing.

My husband has put up with me for 17 years, my children know that I love them NO MATTER WHAT, my family is always there (sometimes only in spirit), my friends understand sometimes life is just crazy and those people, events or circumstances that come into my life if only for a minute all make me complete.

As you think of all the things you are thankful for today, don't forget those families, events or circumstances that are sometimes forgotten that helped complete you.


Happy Thanksgiving!!!!
TTFN,

The 3/4 of my Whole World.....Remember to find Joy in the Journey.......

Five years ago yesterday I was told, "There is NO medical reason Madelynn is alive today. Tomorrow we will be doing open heart surgery to correct her congenital heart defect (CHD). She has an interrupted aortic arch with complications of it's own. She is truly a Miracle."

Phil and I sat in stunned silence.

For 10 weeks our "Peanut" had been living at home with us eating sleeping, pooping, all normal baby things. Had it not been for God's perfect timing and a brilliant former pediatrician, she would have died at home. I am immeasurable grateful daily God chose to save her life than take her from us too soon.

There is NO Experience in life that will ever prepare you, as a parent, to be told your child almost died, still might die and has a long road to recovery. There is no comparison to the feeling of surrendering your child to a doctor hoping with every ounce of your being you will see your child alive again. Even though I have tried with newly CHD diagnosed parents, you can never be prepared for what your child looks like after open heart surgery. NEVER!

I can honestly say I was stunned into silence. I was afraid to touch Madelynn and every alarm on the machines made my own heart skip a beat. It was a long road to recovery filled with lots of tears, shaking my fist and God wanting to know why, savoring the little victories and just being grateful we had another day with her.

Those days have turned into weeks, weeks turned into months and now those months have turned into years. Last year Madelynn's pre-school director told me I needed to enroll Madelynn into kindergarten. I questioned her about this multiple times. She was turning 5 two weeks before school started. But I was assured multiple times she was ready. She is the youngest kindergartener in the school.

Madelynn is reading, identifying high frequency words and spelling them correctly, solving math problems with almost no help from me. The director wasn't lying. Although she does not plot on the growth chart, she has to ride a special seat on the bus, and her clothes for her age are still way too big she is still pretty feisty and taking on the world EVERY DAY!!

As we celebrate the 5 year anniversary of her open heart surgery, I am overjoyed she never gave up and uses ever ounce of her 34 pounds to show she can plow through life just like everyone else.

Happy Heart Day Madelynn!!

Love, Mama

TTFN~