A little something to share.......

Thursday I thought it would be a very boring weekend. I was very wrong. After I picked the kids up from school Thursday, I let them play outside. It was the warmest day of the year at 78 degrees and I didn't want to waste it.

Later that evening, Kaitlynn's first grade class performed during a PTO meeting. The bug theme was very cute. I didn't notice until I was watching the show that Kaitlynn had been practicing the songs for weeks. I heard her singing in the shower, cleaning her room and doing her homework. I loved all the bug hats.

During an earlier conversation, I thought Phil would have to work late Friday and most of Saturday. It turned out he made it home sooner than expected Friday and he and the kids goofed around on the trampoline. Maddie and I took a few pictures. It was a fun afternoon and the kids slept incredibly well Friday night. Saturday, except for a short visit with my mom, was a bust because Phil was gone working most of the day.

We made up for it today as we grilled out dinner with friends and rang in the beginning of racing season with the Daytona 500. While nobody's driver, in the room, won I thought it was kind of cool a rookie won. To be honest, I didn't want any of our driver's to win because in the last five years which ever driver won the Daytona 500 the driver tanked the rest of the season.

So although I didn't get to do the things I wanted this weekend I thoroughly enjoyed the First Grade Bug performance, I did have a good time with the kids Friday and excellent dinner and fellowship Sunday afternoon.

Enjoy the pictures. Have a Great Week!!

TTFN~

From this weekend

To my sister.............

So there is no doubt in my mind that I might be slightly in trouble for this post. However, it was done with great love and not for embarrassment purposes. Today is my little sister's birthday. However, my little sister is not so little anymore, in fact she is an amazing woman, wife and mom.

As her birthday approached I wanted to do something other than the mailing of a card with a gift card enclosed. But what for the woman who has everything. She has three beautiful daughters, a wonderful husband who loves her completely and this incredible, charming way about her; even when she is knocked down by the worst curve ball imaginable, she can still find sunshine.

For whatever reason, a very long time ago I collected her school pictures. The first photo in the collage below is prior to kindergarten, then her kindergarten through eighth grade photos. I know when she sees this she will be squirming inside, shaking her head wondering what was she (our mother) thinking at all the outfits.

On the back of one of these pictures she wrote the following: "Chelsea, Parents don't listen but oh well. I hope you like it. To the best sister I love you even when we do fight. Love, Jennie"




I realize some of these pictures are not her favorites and is probably wondering "I thought all of those were burned." I see my best friend I shared a room with, laughed with, cried with and oh fought with. From the outside, we are very different she looks like and sounds like my mom in so many ways and I look like and act like my dad not to mention I am almost 5 inches taller than her without shoes. With shoes, some days I feel like the jolly green giant. Our journeys in life took us in opposite directions until we had children.

From 2003 to 2008 our parents went from having no grandchildren to having 7 grandchildren. However, in 2004 one of those grandchildren, my sister's daughter, passed away due to complications from pre-mature birth. How do you recover from that? The courage, strength and ability to be human she showed all of us, she became my hero. I don't know if I could ever recover from that and she did it with such beauty and grace.

Thank you for being there when I needed it, being a sounding board when I just wanted to be mad and laughing with me when our children did something totally ridiculous. I like knowing when I am sitting in the car pool line with nothing to do, I can call you and we can talk about nothing and everything.

I am truly blessed to have such a wonderful sister and her beautiful family. Although we are not there to help her celebrate, please know we are sending lots of hugs and love.

Anna, Jen, Ruthie, Dave and Lily

And.....Oh by the way.....since we never seem to get our birthday presents to each other on time I didn't want to break tradition, it is on its way....HAHAHAHA!!!

HAPPY BIRTHDAY JEN!!!

TTFN~

A Mother's right

As a mother we have lot's of rights....the right to run and play like my 5 year old, the right to cry because I stubbed my toe like my two year old or the right to sit on the floor and play dress up with the Barbies with my 7 year old. Today I am going to evoke a different right as a mother, I am going to try and express with words about beaming with pride.

Two or three months ago I received a letter home from school that almost caused my teeth fall out. Kaitlynn's Art teacher sent home a letter asking us to give our consent to allow her art work to be displayed in the education building for an entire year.

My first thought was what in the world did my seven year old produce that required recognition like this. We had to wait several weeks for it to be ready for viewing. About two weeks ago, we received a letter from the superintendent of schools letting us know it is now on display and the hours it can be viewed.

Today was the day we went to go see it. The building is actually a rather boring square box. When we walked inside we were greeted by a very sweet and understanding receptionist. There is a hallway that goes all the way around the building with offices on both sides. About every 4 feet on both sides of the hallway are matted, framed artwork from kids all over the county. My best guess says there were about a hundred framed pieces out of thousands of kids in the county.

Truthfully I was speechless to see all of the beautiful works of art and that my daughter was chosen to be one of these few. As we started our jaunt down the hall the receptionist reminded us to please be very quiet as people are working and we would not want them disturbed. What I did not know was how serious she was about that final comment.

As we rounded the second corner of the hall I hear Kaitlynn say, "I found it."

After taking a few pictures I looked over and realized Kaitlynn's art is right outside the superintendent's office and he was there. I know it sounds kind of hokey but everyday for the next year when he comes to work Kaitlynn's art will start his day off right. When we left I thanked the receptionist for allowing the interruption and left with a HUGE smile.

Below are the pictures of our venture today.

Thank you for allowing me to brag about my artist.

TTFN~

Valentine's Day

Earlier in the week on Facebook I saw someone do a post about the upcoming Valentine's Day. You were supposed put a photo of you and your significant other and tell how many years the two of you have been together. Because of Congenital Heart Defect Awareness Week (February 7-14) I left the Heart Tree up.

Also throughout this week I was urged to not only talk about my heart child but my other children. But what I haven't done is tell you about the glue that holds this family together no matter what, Phil. Whenever we are knocked down and faced with a new task, Phil wants to know what are we going to do about it, not mope about it. He always reminds me not to waste my energy getting upset but work on a solution.

February 14, 1998 was the day he proposed and my world hasn't been the same since. We have been together for 14 years and this year we will be married for 12 years.

We have experienced huge highs (the first time I told him he would be a dad) and astronomical lows (the day before Madelynn's surgery) but we have always done it together. Thank you for never getting off the ride and some days adding a few loop to loops just for fun.

Happy Valentine's Day Pilbert!!!

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~

Leader of the Pack

To see her whether in a photo, playing with her siblings or standing back in awe at some new accomplishment all I can do is sigh. She is such a leader in this small pak I have and a drive like nothing I have ever seen.

Earlier this week we finished up the first session of winter swimming. At the end of the lesson I was speechless. Not only had Kaitlynn swam close to 300 meters, she learned how to dive. I watched the instructor ask her if she wanted to get out and walk back after swimming the 50 meters down. The answer was always no.

In the last 10-15 minutes of the lesson the kids swim down to the "deep end" to practice diving. In the phases to teach this skill the kids first sit on the edge of the pool and push down under water. Next they stand them up and have them dive in. Katie could not get the standing part. She was constantly belly flopping because she would lift her chin up.

After each child had two tries they were allowed to do any jump. Kaitlynn did not want to do any jump she wanted to keep practicing the dive. That is until finally she figured out how to marry herself into the water. It was perfection and felt almost like slow motion as her body melted into the water. My first thought was OMG SHE DID IT!!! But that wasn't enough she wanted to do it again and she did.

Today we went to the Levine Cardiac Kids Walk A Thon to raise money for Camp Luck (Heart Camp). For each lap the kids walked they earned a silly band in the shape of LCK with a maximum of 25 laps. As we counted her silly bands, she walked a way with 20. She, another heart sibling and a chd survivor all about 7 walked it together. It was very cute to see the girls round the corner and giggle all the way. Just like the swimming, I would ask her if she wanted to rest. She would always say no.

On Kaitlynn's most recent report card her teacher was very impressed with her outstanding math skills. However, she wanted Kaitlynn to practice her reading out loud to help her fluency. I talked to Kaitlynn about it explaining it wasn't like she received a bad grade but that extra practice was required. As I was cleaning up from lunch today, I found her sitting on the couch with Madelynn reading her poetry notebook without being asked.

She has this drive like I have never seen. In about a week, Kaitlynn will participate in the Jump Rope for Heart in honor of Madelynn. When all is said and done I believe she will be $50.00 over her goal. She is very excited about jumping and has been practicing.

Phil asked me one day where does all of this come from. I reminded him of all the compliments she received last year about her impressive leadership skills. As far as the Math expert she is becoming she can thank her Daddy for that. I could tell he had to stop and think about that and he walked away smiling.

It is no secret we are a family living with the Congenital Heart Defect but it does not control us and we are learning thrive at any challenge. Kaitlynn is my true example of that. No matter what crosses her path she comes out successful.

TTFN~

More to life.....

As I said in yesterdays post there is more to life than having a child with a CHD. For example, I have two other children who have the most normal, crazy lives as far as being 5 and 7 go. So I can't spend all this time talking about my CHD family without telling you about the rest of the family.

So today is Jackson's turn.....ahhh my sweet boy....No really I promise he can be. LOL!

Some call him.....Opie Taylor......or Dennis the Menace....and some days even Ralphie......

Jackson has challenged me from the day we found out he was to be a boy. I started really gaining weight; that was until the day he was born. Of course I should have felt some relief since he was almost 10lbs!!!

When Jackson was about three months old he started getting sick all the time. He was cranky, irritable and simply misunderstood. After talking to his caregiver, she suggested he might have a need for tubes in his ears due to poor drainage and lots of infections. After plotting all of the ear infections and talking to his doctor, off to the ENT doctor we went. The caregiver was right he would be scheduled for tubes right away at 11 months of age.

The weeks before tubes I would play with him on the floor and make sounds for him to mimic but he wouldn't repeat them. Three hours after surgery we were at home playing on the floor. I started making the same sounds again and too my surprise he made the exact same sounds back to me. His ears were so bad he could not hear. Or at least what he could hear was like talking to him while he was underwater.

The victory was short lived as 21 months later he was to have a new set of tubes put in and his adenoid removed. Still not quite right, five months later just two weeks after Madelynn was born we were back at the ENT to talk about his tonsils. It took some convincing by me to the doctor but he agreed to also take his tonsils in a third procedure. He had to be three to have the tonsils removed, so 4 weeks after his third birthday they were gone.

Finally Jackson was really thriving and even though at first it was just me, he is really smart. I am sure Katie had a small part to play in that fact as he is always wanting to do what she does. Reading, writing, games......He wanted to do everything she did.

But if I had to describe Jackson, he has a gentle spirit. Don't get me wrong he is just as rough and tumble as the next boy but he has a huge heart. Eight weeks after Jackson's tonsils were removed Madelynn's damaged heart was discovered and two weeks later had her open heart surgery.

One day in the middle of all the pre-surgery drama, Jackson came up to me like we were best friends put his arm around me and asked, "What's wrong Mommy?"

It is truly by the grace of God that I was able to muster up the following answer. "Well Buddy the Doctor says that Madelynn's heart isn't shaped like yours and mine." I took my two pointer fingers and traced a heart on his chest where his heart is. I continued, "Her heart is broken. We have to go see a doctor to see if he can fix it." At this point I could not see as the tears rolling down my face were blinding me.

But what I felt was a three year old little boy hugging me as tight as he could.

When he let go he walked over to the bassinet, picked up Madelynn's hand and just held it. Today, I still see him pick up her hand the exact same way; as if he is going to guide her.

Watching Jackson now, I know I have my hands full with a five year old in kindergarten. In his most recent parent teacher conference, which I requested, I walked away speechless. His teacher started out by telling me that he needs to be reading level three books by June. He is reading level four and starting level five. By June he needs to read, write and recognize numbers one through thirty. He is reading, writing and recognizing numbers over one hundred.

In my mind I am thinking...."Holy Crap!"

The teacher shows me his first day of school Math assessment and it was off the charts. She looked me in the eye and said, "He is really smart."

Jackson still has a lot of maturing to do. This is his down fall. People see and hear him and expect more from him and forget a few weeks before kindergarten started he turned five. At this same time, he was starting a swim class that was designed for 6-12 year old.

There are days he thrives on showing others how smart, strong and independent he can be. But I won't lie I like to spend time with just him; my heart overflows when he hugs me every single day. I love to rush home from work to be one of the first moms in the carpool line just so I can see that beautiful smile.

Eventually, I won't be that person that surrounds his whole world. I will be standing back but cheering the loudest and whatever he has accomplished. I hope he never loses the gentleness about him and finds a way to celebrate it as often as possible.

Complete strangers come up to me sometimes and see the three kids in all of our normal chaos and say, "You have your hands full."

To which I usually reply, "You have no idea." I just smile and walk away.

Not sure what I would do if my hands were empty.

TTFN~

Congenital Heart Defect

This week is Congenital Heart Defect Awareness Week. What I hear most of the time is that 1 out of every 100 babies are born with a Congenital Heart Defect (CHD). The more astonishingly statistic is that each year 36,000 babies are born with a CHD (according the the American Heart Association). In November of 2008, Madelynn became one of those 1 in 100. I must say it has been an amazing journey.

Below is a photo of Madelynn 3 days after surgery (November 2, 2008) and a photo I can pull out of my purse at any given moment. I don't want to ever forget but more important any chance I get to make others aware, I will do it any day of the week and twice on Sunday.

But if I was really going to do my job to spread awareness, having a child with a CHD is NOT the end of your world.....It is only the beginning. It is true your life will never be the same but at some point you find your road to be travelled and voice to educate others about your incredible journey. Levine Cardiac Kids is a support group for CHD families and they have really helped us see there truly is life after a CHD diagnosis.

CHD kids want to be and treated like everyone else. They don't want to be picked out of the crowd they want to blend into the melting pot and be as normal as possible. Most times unless someone tells you it is hard to pick those 1 in 100 out of the crowd. Does the smiling face below look like a heart patient to you. It is a recent picture of Madelynn that will soon be hanging on my wall.

If you are ever moved to make a tax deductible donation to the American Heart Association please note Legacy for Life on your check. Your donation goes specifically to Congenital Heart Defect research.

Today, Madelynn sees the cardiologist once a year, the pulmonologist twice a year (collapsed lung and paralysis in her diaphragm, side effect from surgery), a nutritionist as needed to help with her weight gain and we sneak in the pediatrician's office for weight checks once a month. She's doing stellar and her outlook is better than we could have ever asked for. We celebrate all the little details and worry about the big stuff when and if they ever happen.

Happy Congenital Heart Defect Awareness Week!!!

TTFN~

HoneyBells

As a Christmas present we received a three month gift of "Fruit of the Month" from Harry and David. If anyone knows our family even a little bit, fruit is a very exciting gift. My kids fight over fruit, who will get the last bite or banana you name it. They eat everything from, apples, bananas, pineapple, oranges, kiwi, strawberries......I don't think they have met a fruit they don't like or won't eat. So when the first box of fruit arrived you would have though we won the lottery.

When the second box of fruit landed on the door step, Jack was ecstatic, it was oranges. I had never heard of honey bells before and there was a pamphlet about them and some bibs in the box. The literature mostly spoke of how juicy they are and recipes to use them to their potential. I thought the bibs were really funny until I cut one into slices for the kids to snack on. All I have to say is it was one of those, "Someone could lose an eye moments". The bibs and possibly safety goggles were required.

Phil taught Jack something silly to do with oranges added to the wearing of the bibs proved to be quite the comical snack time.

Thanks for sending laughs to the house Aunt Joy, Nana Patti and Papa Dave.

TTFN~