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~

Phil and Chelsea the DYI's are at it again. Lord Help Us!!

This weekend I have worked harder than I have in a long time. I have probably hauled 10 to 12 times my weight in lumber to the back yard. I was smart enough to wear my gloves to protect my hands but my body hurts in the weirdest places. The back of my thighs, my shoulders and my wrists hurt the worst.

I lifted walls, swung a hammer (like a girl, if you ask Phil, LOL!!) and was allowed to use the cordless saw. One thing I learned......I do not envy a Framer!!

As we worked, I would glance over at the kids as they played. Every once in a while I would run and get my camera and then it was hijacked by Katie. She does have her own camera but she liked using mine.

Jack constantly asking what we were doing and if he could help. He was a GREAT helper!!
 

I did not take this picture. Nice Job Katie!!
 

If you have a big empty box, Maddie will steal it from you. They are her favorite toys.
 

I love this girl!! With those blue eyes and freckles I could just gobble her up.

As soon as we took a break, they were on the floor of the shed dancing.

When I showed her how to do a cartwheel on a 2x4 she was bound and determined to do the same.

We stopped working about 3 today and cleaned up. We were able to get all four walls and the door of the shed up this weekend. We had to put a tarp up for the roof since there is a chance of rain this week. Hopefully next weekend we can finish the roof and the siding.

Maybe I can get an extra nap in before I have to carry more lumber to the back yard.

TTFN~

Another 1/4 of my whole world.........

 

Stewards have the responsibility to care for what has been entrusted to them. I am truly blessed with my oldest child, Kaitlynn. She makes me want to use every ounce of my being to be that good steward.

 

However, there are days as a parent I make mistakes with my children. I have learned apologizing does not always mean that I am wrong and Kaitlynn is right. It just means I value my relationship with Kaitlynn more than my own ego. The most important thing I always want Kaitlynn to remember is that I love her. Even on her worst day when she gets in the most trouble or says something that inevitably hurts my feelings, I love her.  

 

This year Kaitlynn will be ten years old. It is still hard to read, say or believe. For ten years I have been raising her and just look at her. She is beautiful. I wish I could kiss every freckle on her sweet face. She loves art. There are days she stuns me when she sees something that without her artistic eye, I would have totally missed it. She loves to play sports. She acts so girly but as soon as I get her in a sports uniform all bets are off. You better forget she is a girl, she will give you a run for your money. 

 

I.LOVE. the person she is becoming. I have no idea what GOD has in store for her but I can't wait to be a part of it. I pray every day I can continue to be that good steward.

 

Remember Punkin, I love you every second of every minute of every day.

 

 

 

 

TTFN~

1/4 of my whole world.......

You will be his first kiss

You will be his first love

You will be his first friend

 

You are his Momma

And he is your whole world

He is your little boy

 

When I first saw this I thought how lucky am I to have been blessed with a boy. These things are a gift just for me because I am his Momma. As each day passes, I see him maturing and slowly finding his own way. Most parents are sadden by this separation. I am sure one day I will be sad and miss him terribly since he will no longer be under my roof.

 

But I can not lie.......I am truly excited to watch him grow and change each day.

 

When he chooses to he has a huge heart and will do just about anything for anyone if you ask. I watch him at the bus stop watching over Madelynn to keep her safe. Math comes very for Jackson. When he gets something and his sisters do not he takes the time to teach them what he knows. He almost never flaunts that he is smarter than many children his age.

 

He is my whole world when it comes to little boys. I am one lucky Momma.

 

Thank You Jackson!!

 

TTFN~

Chelsea

 

Never, Ever Stop Fighting......

It has been so long since I posted anything, when I went to long in I forgot my password. Crazy!! Well what's crazier yet is my life lately. In the last two weeks, my ac went in both of our cars. It has been in the high 80's and 90's with humidity. I probably left 10 lbs on the trip to work. At least God was kind enough to let it go out after the kids camps were over.

Phil also spent a chunk of change buying car parts for the van to assemble himself to save us money. Remember he is a "motorhead",  it is what he went to school for, not to mention I LOVE his mechanical mind. The day before he had planned to put all of these parts on the ac compressor in the van goes out. The same day the dryer stops heating. It runs cold air but the heating element went out.

The list goes on about all the things that happened in the last too weeks. Monday evening was my breaking point. I yelled, cried and finally went to bed emotionally exhausted. Every Tuesday morning at work there is a group of us that meet for a 15 minute break and just pray for whatever is on our hearts that day.

I broke down.....I just asked God to take it all away and just fix it because I could not and was at the mercy of anyone who could help. I was no longer in control and God showed me He HEARD me LOUD and CLEAR.

My good friend's husband found the dryer part for $25.00, when I was about to pay $100.00; and then wouldn't even let us pay for the part. Thank You Roger!! Phil and Roger worked endlessly on the van because the parts that needed replacing reared their ugly head and gave them a run for their money. The AC still needs to be fixed but when we get the money in another week or so it will be an easy repair. Everything else is finished.

The dryer part arrived Friday afternoon. Once the van was put back together, about 11:30 pm the dryer part was put on and a glorious heatwave was coming from my dryer and clothes were tumbling around and around. I have been doing laundry non stop for 24 hours. On top of our regular laundry, Jack had a few bed wetting mishaps, I had towels screaming to be cleaned and it was tax free weekend on school supplies including clothes. I had two loads of new clothes to was too.

But today was the icing on the cake. Today was the day my cup runneth over.

This morning we had soccer evaluations. I did not have all the money today because the school clothes and the car were more important. My children do not understand that concept. I went to the evaluations and talked to someone in charge. I told her I only had half the money. In her best smile the woman said, "We never turn anyone away just pay the balance before the end of the season." I almost fell on the floor. I just needed two weeks not 12 weeks.

While at the evaluations I sat and watched the kids stand in each line and give it their best effort. Jack and Katie because of their ages had to stand in a different line than Maddie. Yes, Maddie is going to play soccer. When I saw Maddie standing in a line without her siblings and I saw all the other parents standing with their child I walked over to her. I asked her if I could stand here with her. She told me, "No Mommy, I can do it myself. You can sit over there."

All the Parents standing around just looked at me with dropped jaws. I said, "Ok, I love you."

I wanted to cry. I wanted to cry because she did it!!! She is living and thriving even though she almost died. We made it to the day where she feels just like everyone else even though she knows she's not. She has more specialist's than most of the kids in her school. But today she looked, breathed, laughed and ran just like all the other kids.

Well not quite........

When the evaluations were over, I looked and all three of their results before I turned them in. Maddie ran the fastest 10 yard and 20 yard sprints and scored the highest on the goal kicking. Katie scored the highest dribbling around the cones and Jack scored the highest on the free dribbling.

I truly had no words for this........

So all though we still have a ways to go to get things back to normal, we don't need normal it is SO overrated. We have EXTRAORDINARY!!! 

This is my PSA reminding all of you to never give up and never ever stop fighting.

TTFN~

School mates

People come and go in our lives everyday. The best friends are the ones that you share an inseparable bond with. Sometimes these friends get lost for a while but somehow always manage to circle back around in your life. You know they are real friends because you can talk to them today as if you talk to them everyday even though it may be years since your last conversation.

In the last two years one of those lost friends found their way back to me and we talked as if we talked everyday. He trusted me enough to fill me in on the missing years. He trusted me with both the good and the bad, knowing I would never judge him. I felt as if this friend gave me a gift because he had no fear to share the truth.

Sadly, Saturday the Lord decided it was time for him to come home. It was like one minute he was here and the next he was gone.

In recent weeks I had reached out to him but had not heard from him. There was a part of me that worried when he did not respond but I trusted when he was ready he would circle round again. That never happened.

When people die their friends and family wish for one more day with them. When people die suddenly the longing for one more day is much greater.

If I had one more day with Brandon I would want to meet him at the park with my dog and let him meet her. We would talk about his wanting to help others with service dogs. It would probably turn to something silly, like crazy things our dogs did and we would be laughing.

If I had one more day with Brandon I would want him to make me his favorite meal. He loved to cook and was quite good at it. It seemed to be something that brought him peace.

If I had one more day with Brandon I would want to go to his favorite club and listen to him play. Music was something he could get lost in and the rest of the world didn't matter.

Today, there will be a celebration of Brandon's life. I will miss talking to my friend, I will treasure the gift of trust he gave me but, most of all I will miss listening to him laugh. I am so glad he will finally be at peace.

RIP Brandon

Love ~ from my 9 year old.......

About once a month I really get on the kids about cleaning their rooms. Once they tell me they are clean I then go through them with my "Mama-sense" (my spidy sense, LOL!!). It is crazy the things I find everything from food, this mornings dirty pj's, last weeks stinky socks, my craft scissors, you name it I find it. I am rarely surprised at what I find but it doesn't mean I still don't shake my head.

Today I decided to do my monthly check. I was truly shocked at what I found. In the girls room there was tons of trash. Waded up paper, ripped pictures and pages, as I looked through the papers before I threw it in the trash I found a poem that Kaitlynn and written May 2013. Last year she received some blank journals for a gift from First Communion. Lately she has been sketching and writing in the journals and this is one of the pages she left on her bedroom floor.

She doesn't know I am posting it but I though it was sweet.

Love

 

Love is a heart

Love is something sweet

Love is something everyone has in their hearts and minds

Love is special

Love is a heart

Kaitlynn May Addler 2013

TTFN~

Today's the Day!! Today's the Day!!!

This morning about 10:30 Madelynn will be graduating from Pre-School. I am sure there will be a part of me that will be sad and want to cry but, I am very excited for her. She will have reached a peak in the mountain of life at one time I didn't think was possible. So to celebrate her achievement I thought I would share a little photographic journey.

 

For each of these pictures I could share something the photo does not tell you. But instead I thought you could just enjoy the journey.

 

Congratulations Madelynn!! Mommy and Daddy are more than thrilled to share this milestone with you. Each day you amaze us at all of your accomplishments. We love your personality and EVERYTHING that comes with it. Thank you for showing us our life would not be complete with out you. Mommy and Daddy love you to the moon and back, to infinity and beyond, forever and ever.

 

TTFN~

Need Reminding......

Tonight I talked to a friend who is having a very difficult time in her life. It made me so sad I wanted to cry for her. If nothing else to give her a hug. The average divorce rate in the US is about 50%. When you have a family with a child with a special need the percentage jump to as high as 80-90%.

Marriage is hard to begin with. Adding a child with some type of health condition makes it that much harder. Having lived this road for a while it is no joke. Some times it requires taking a step back and remembering the simple things.

10 Ways to Love

1. LISTEN - Without interruption
2. SPEAK - Without accusing
3. GIVE - Without sparing
4. PRAY - Without ceasing
5. ANSWER - Without arguing
6. SHARE - Without pretending
7. ENJOY - Without complaint
8. TRUST - Without wavering
9. FORGIVE - Without punishing
10. PROMISE - Without Forgetting

I am far from perfect and need reminding every once in while of these ten words so I thought I would share them. Hoping my friend sees them and finds peace in her difficult time.

TTFN~

The house that built me.....

About two years ago a childhood friend who I hadn't seen in 25 years pulled me aside and says, "Do you know why we didn't always get along.....We both wanted what the other had."

I was very taken back by this comment.

She continued to say, "There was never a doubt that your parents loved you......."

I dreamed about this comment and what it meant. After a while I felt pretty horrible.

 I could remember wanting to go to a school dance and not having a new outfit to wear. My mother took the sewing skills her already deceased mother taught her and altered a skirt out of something she already had.  I still wanted a new outfit. My father was really angry. I was such a selfish teenager and completely ungrateful. Little did I know the skirt she altered for me was wrapped in love. My mother loved me so much she wanted to make sure I would look my best and I didn't see it that way.

This year my parents will be married 45 years. There is never a day that goes by that I am not 100% sure that my mother loves my father and my father loves my mother. I may not have had all the latest things but I always had the greatest the love of my parents.

When I think back about the house we grew up in a dam of memories breaks and everything comes rushing back and I can barely breath.

I remember the single rose bush that would bloom every summer on the side of the house. The big tree on the side of the house we would play around. The brick patio we built a clubhouse on and sunbathed on. Jumping the pricker bushes and sometime falling into. The stairwell we would fly down on our pillows. All the birthday parties and holiday dinners we had around the dining room table.

Being awakened by church bells, and walking across the street to church and still being late. Diving off the top bunk and scaring the crap out off my mom. Shooting the bb gun in the closet and accidentally getting shot with one. Sharing a bedroom with a baby sister. When we would get grounded to our rooms, my brother and I would send notes back and forth with his toy jeep.

Playing super heroes and jumping out of the TV cabinet my father was finishing. Watching my father build the train table in the basement. My parents would have friends over and they would play cards and watch TV. On the hot summer nights sitting out on the front porch watching people go by. Walking to the river to watch the fireworks for the fourth of July.

Fighting with my brother and calling my mom at work to make him stop. Like she could do anything from across town. Sitting on a bee and screaming half way down the block. The sitter thought I was dying. Coming home from school and finding the dog sitting on the portable dishwasher.

When I stop thinking about it 20 more memories will pop in my head. The result however will always be the same. My parents made their every effort to make sure we knew we were loved.

Don't get me wrong I caused lots of trouble, was regularly grounded, and claim responsibility for more than 25% of my mother's gray hair.  My father had this habit of rubbing his head when he would get frustrated with me. I also claim at least 25% of the lack of hair from that motion. No matter what they never gave up even though some days I am sure they wanted to.

When life gets complicated we want to retreat to our "happy place'. My husband's "happy place" is Fort Macon at Atlantic Beach. For me, my parents first house in the old neighborhood.

I hope one day my children look back never doubting I loved their father or that he loved me. I hope their "happy place" is their first home. I hope as many times as they were in trouble they have equal or more happy times to laugh themselves silly. I hope they have a house that helped build them.

TTFN~

Happiness is a choice!!

Happiness is a choice!!!

To different people Happiness is different things. Happiness could be finding 20 bucks in a winter coat, languishing about something you need to do only to find someone did it for you or discovering you and your spouse have the same afternoon off.

 As a Heart family we have had to make many choices. To agree to turn your child over to a surgeon to save a life, a feeding tube because bottle feeding is too stressful on the heart or trust complete strangers with the health and well-being of your most treasured gift.

After what can be a traumatizing hospital stay, most families assume being at home will help in the recovery. While many times this is true, it can be very scary; the ups and down of weight gain, creating proper sleep schedules or just plain finding your way without hospital staff to guide you.

All of these things are incredibly emotionally exhausting. As heart parents we make a choice to fight, fight with every ounce of our being. We go without sleep, miss meals and sometimes even forget what day it is. However, I promise you each day we find Happiness.

For us Happiness was the surgeon reporting the surgery went better than expected, the first time Madelynn smiled eight days after surgery, and a year after physical therapy Madelynn was walking and entering elementary school to register Madelynn for kindergarten.

This experience could have ruined my family in so many ways. But we made a choice and that choice was Happiness. We chose to find Joy in even our worst days. Hoping you find Happiness and you make it your choice.

Happy Congenital Heart Defect Awareness Day!!

TTFN~

Guest Blogging......

A few weeks ago I was contacted by another heart mom who has a blog. She wondered if I minded having Madelynn's story posted. She decided to collect other's stories and post them on her blog for Congenital Heart Defect Awareness week. Yesterday Madelynn was the highlighted story. Click here to see it.

Kuddos to Stephanie for such a HUGE undertaking. Thank you for finding creative ways to spread CHD Awareness this week. I didn't plan on re-posting Madelynn's story on my own blog since Stephanie was highlighting Madelynn. Thank you for allowing Madelynn and I to invade your blog.

HAPPY CHD WEEK!!!

TTFN~

Congenital and Acquired.......

When I made my list of things to blog about for CHD Awareness Week, I felt like I was ready for the week. Then today came and I had writer's block. How does that happen? I had mentally made a commitment to do this and I was drawing a blank. It has been a long day and my post still isn't done.

 

Too lazy to get the laptop downstairs, I decided I would blog off my nook and see what inspires me. I clicked on the web and it took me to the last thing I searched for on the web......blood clots.....it almost took my breath away. The last time I used my nook it was about midnight, two weeks ago, my father was being rushed to the hospital for chest pains.

 

I later found out he had a mild heart attack, the doctor found the blockage, worked his magic with a stent in the cath lab and 48 hours later he was on his way home. The advances in medical technology made this a very non evasive procedure for my dad. I was very happy my dad would be ok.

 

Once I knew this I told my children. They were visibly shaken and did not fully understand. They asked to see him. I explained the doctor told him to rest and promised we would see him soon. I was so glad everything worked out with the best possible result. He is one very lucky man.

 

During CHD Awareness Week we try to spread awareness about CHD. Some heart conditions are not congenital they are acquired. My dad's condition was acquired over time. Spreading Awareness about these events are important too. Encouraging healthy eating, exercise and being smart about choices you make to protect your body are good examples.

 

Just because you aren't the patient doesn't mean you might not become one. I urge you to please be aware of all your choices because you never know when your life will be altered.

 

TTFN~

 

SMACK!!! Looking for an answer......

Sometimes because Madelynn is so far past her surgery, I consider stepping back from the support group for heart families I am part of. Madelynn had one of the less complex heart conditions. With today’s technology and advances most children with her CHD are repaired without open heart surgery. Granted Madelynn had a twist to her CHD and would have still had to have open heart surgery.

The last few weeks I have really been wondering if this is the path I should stay on or do I need to find a new dirt road to explore. When I am truly unsure I will lie in bed and pray about it. I am one of these people who need God to almost smack me in the head and say, “UM……Hello Chelsea…..is this answer PLAIN and OBVIOUS enough for you?”

When I started posting for CHD Week Awareness I thought of things I would write about for each day. Made a few notes about each of these topics and set it aside until it was time to post. I work better this way and sometimes by waiting find a better answer than writing it all in advance. Today several things rang true for me about this process.

For starters I am going to continue to help support families in anyway God presents it to me and sometimes it is in the oddest forms. My “smack on the head” came when a family in Canada found my blog. They are concerned about a family member who might have an undiagnosed CHD. I shared with them about the pulse ox test, a few things we learned after Madelynn’s diagnosis (we should have known before) and told them I would pray for the best outcome.

The best outcome would be for there to be NO CHD. However, it does not sound like that is the case. So I went to work sharing with this family everything I knew and learned that might help them ask better questions and hopefully find the right answers, hopefully without overwhelming them. When I finished typing my response I thought, “Yes God, I asked you to show me the answer and SMACK!! I get it LOUD and CLEAR.”

You just never know who will cross your path I will always be ready to share. Please pray for this baby girl that her family finds the answers they are looking for and they do it soon.

TTFN~

Lending Support.....

Since Madelynn is so far past surgery, I started lending support to other families. I am part of a family support group that does what we call Heart to Heart matching. When families find themselves in the children's hospital, the Child Life Specialist asks the family if they would like to speak with a heart family who has the same or similar diagnosis. It is a great program and I love helping other families.

 

In most cases, I meet families after surgery. There is a lot of shell shocked and speechless families. Once the families discover I really did travel this road, they relax and ask lots questions. Reminding these families they are not alone is very important.

 

One rare time I spoke with a family after diagnosis but before surgery. The mom had a slew of questions and I was able to calm her fears. I was even able to warn her about the first time she would see her child after surgery. This is something I wish someone would have warned me about.

 

The wires, tubes and monitor sounds can be disturbing enough but the sight of your child laying there lifeless, fighting for their life is almost more than anyone can take. I was not prepared for it and it almost dropped me to my knees. Days later the mother I warned, thanked me. She was so grateful I had prepared her for what she may see.

 

Sometimes lending this kind support to families can be emotionally exhausting. It is not easy but it is so desperately needed. When the support comes from another heart family there is a comfort there that cannot be explained. My only hope for doing this is to give the family a little peace in the chaos of the journey.

 

TTFN~

 

What about you....

Thinking back during Madelynn's darkest days, I don't remember if I showered, brushed my teeth or even if I slept. Although this is part of trudging through that darkness and wondering if your child will survive, it is no excuse. As hard as we fight for our children's health and safety, we need to equally take care of ourselves. What good are we to our children if we make unhealthy choices?

 

Please understand I am no expert at this. As I have said before when looking back hind sight is 100%,. I was one of those parents that refused to leave my child's room for the first few days. There were so many unknowns; I was terrified something terrible would happen. If I had no sleep, barely any food, no exercise of any kind how could I make the best decision for my child with my brain starving?

 

Once my husband convinced me to find a sleep room and rest, I felt clearer to make better decisions. We also made sure that we left the room and took a walk as part of one of our meals. We may have brought the food back to the room and ate it, we still walked away to clear our minds. Stepping out of the room for anything felt like someone pounding on my chest, I could barely breathe but I did it.

 

One day as we were trying to re-enter the CVICU after a meal. We were told to have a seat in the waiting room it would be a few minutes. I had no idea Madelynn required emergency attention. It wasn't until the Intensiveist came out and told us what happened. I was angry, I wanted in that room, I was hyper-ventilating it was horrible.....then I thought what if she dies. At that point I sat and cried.

 

Again my husband reminded me....what could you do in there? They would probably have escorted us out, this would have been much worse. Because I left the room and ate something, I had a clearer picture of what was happening and we could make the best decisions in her care. Thinking about it today, our absence in the room was a blessing in disguise.

 

Taking care of yourself doesn't only apply while your child is in the hospital. Make sure you find a way to balance home care and everything that entails, and taking time for just you. During this regrouping time schedules do not apply. Find a book and start reading it, find a hobby that relaxes you or do something you have been meaning to do but home heart care gets in the way.

Good Luck in finding ways to keep yourself Healthy!!

 

TTFN~

 

Expectations, Hopes and Dreams......

As parents whether rookies or veterans we have certain expectations, hopes and dreams for our children. When you are suddenly given the devastating diagnosis that your child was, is or will be born with a broken heart your own heart shatters. Everything changes....forever.

 

There is a point where we, as parents, need to grieve for the loss of the life you thought your child would have. I know it sounds a little silly to some. Hanging on to these old ideals allows the demons of what we thought would be, to slowly tear us apart from the inside. Letting go of the previous expectations, hopes and dreams allows for an empty palette where the sky is the limit.

 

Having this clean slate we, as parents, can give our children that 110% they expect. It allows for educating ourselves about this new life, finding support groups of other families travelling the same dirt road and a new perspective of what life can really be like.

 

Sometimes we also end up letting go of friends we had before the diagnosis. Friends who have never had a chronically ill child simply do not understand. They want to make sense of it but they can't and sometimes we have to let them go. They don't comprehend germ control, special diets or required medical treatments. For no other reason than they have a heart healthy child. Other heart families know this as a way of life and don't bat an eye at it. Grieving for the loss of pre-diagnosis friends allows us to be open to accepting of new comrades in the battle of congenital heart defects.

 

I personally was lucky my best friend was a nurse. Even though she didn't know the first thing about being a heart mom, her medical training made her an invaluable resource as each day passed. Had I not let go of my expectations, I would have missed great opportunities and new friends that are worth their weight in gold.

 

Today my heart warrior’s prognosis is excellent. However, had I not relinquished my pre-diagnosis expectations, hopes and dreams, and took the time to redesign the empty palette I would not have my priceless piece of art.

TTFN~

Advocacy........

Today begins Congenital Heart Defect Awareness week. Each year I tell Madelynn’s story or some part of it to help spread awareness. This year I decided to do something a little different. Today I want to talk about being the parent of a child with a Congenital Heart Defect (CHD). This year will be 5 years since Madelynn was diagnosed.

Being on the other side of diagnosis, surgery and recovery, hind sight is always 100%. What I would share with a parent with a recent diagnosis is education, education, education. Find out everything you can about your child’s CHD. They tell you to stay away from the Internet it will only scare you. What is scarier than finding out your child’s heart is broken?? Find support groups of families who have travelled your road. Read everything you can get your hands on.

 It sounds like an overwhelming task. However, as you learn about the CHD and how your child is responding to it, you can filter out what doesn’t apply. The more you know and understand about what is happening to your child the more in control you feel.

I remember just standing at Madelynn’s bedside, helpless. As I read and observed what was happening to her, I could be a better advocate for her. The stronger advocate I became the more control I regained. For families with diagnosed babies, who is going to be their voice? As the parent, you are the voice.  It is your job to speak up for them, make decisions for them and always do what is best for them. How can you make educated decisions without the education??

TTFN~

For Justy.....

Over 25 years ago I would be walking into high school to give my very best friend a little something for her birthday. We met the first day of school our freshman year. Our first two classes were the same, our last names both began with B with the alphabetical order seating we were always sitting next two each other. It was always part of God's plan we cross paths.

She helped me get my first job and we worked at the same place for awhile. We went to school dances together, double dated for prom and spent many late nights at Denny's. Some of my favorite memories were the very late night laughs in Denny's. We were college roommates for almost two years. Suddenly everything in life changed.

She joined the Navy and I found myself lost in my life slowly spinning out of control. She found this plan for her life and seemed truly happy with her choices. I worked two full time jobs lived in an apartment and had no idea what I wanted in life. It always made my heart leap when I received a letter or call from across the states or the world.

Last week I turned the same ridiculous age, she turns today. Did I mention our birthdays are a week apart. Something else that always makes me smile.

For many years our friendship lived solely by phone calls. One day I decided that was not enough. She is like my sister. Just like my sister I make the time to see her every year. Some visits were not planned and included lots of tears. However there is no place I would rather be. Some laughter was so much it also brought tears.

If I had my choice I would be sitting with her in her back yard watching our children play and just revelling in the moment that 25+ years has brought us to. Something I was able to do this past November.

To my friend, my hero and confidant......I love you like my sister......My life would not be complete without you.....Thank you for all the memories. I hope as you celebrate your birthday today you know I am with you in spirit and surrounded by love.

Happy Birthday!!! Love, Miss and See you soon.

TTFN~

Focus on what is important......

"Life is like a camera, focus on what’s important and capture the good times, develop from the negatives and if things don’t work out, take another shot."

 

The last two weeks have been a whirlwind. I remember cub scouts, basketball, girl scouts, work, meetings, appointments but no blogging. Somewhere in there I think I slept but today it doesn't feel like it.

Most of all I am trying to stay focused on what it is important, my children and family. Today was a day off for Katie and Jack (teacher workday). Maddie was so mad she had to go to school. To make her feel better we had homemade sno cones after school. Not sure what I was thinking making sno cones in the middle of January but the were very excited. I truly had no idea, when I received this sno cone maker, the joy it was bring.

I came across the above quote and it struck a cord. There are some things that I will not post here that recently has really taken a toll on all of us. Trying to keep the balance in life hoping the kids don't notice the additional stress. Thank God for the sno cone machine. So as today comes to a close I am thankful we captured a few memories. For the things bringing us down tomorrow is our new shot.

TTFN~

 

 

 

Dinner with the girls.....

This week one of my friends celebrated her 40th Birthday. She was totally spoiled this week. Her husband cooked her favorite dinner, she said it was FABULOUS!! Some of our friends surprised her at work with flowers and sweet treats!!

Right before Christmas my friend was robbed. It has been an emotional roller coaster since then for her entire family. It broke my heart when she asked me how can I convince my daughter she is safe when I don't believe it myself. My friend had a rough 2012 and this was the final straw. I just wish there was more I could do for her. I wish I could be Jeanie and blink my eyes and nod my head and make it all go away.

Since that was/is not possible, tonight we had a girls night. We went to a restaurant my friend had never been to. It was great no screaming kids, nothing to worry about just enjoying time with my friends. It was good to laugh have a drink and not hear the words, "Mommy! Mommy! Hey Mommy" 5000 times.

After dinner, none of us had been to the new JCP that opened before Christmas. So we went and strolled around to see if it would be worth a second trip. I was impressed very clean, employees were very nice, LOTS of deals!! I tried on a few retro dresses, some very funky shoes nothing that fit my budget right now but I did find some great deals on some anchor pieces to my wardrobe at $3, 5 and 6 each. Sometime down the road I will be making a second trip.

It was such a long crazy day, great to shop with some girlfriends and some me time. Very much needed me time. Happy Birthday to my friend!! Welcome to the club!! Sending heart hugs!!

TTFN~

g-pa's project.......

Everyday after school the kids come running in the door at 3:00 on the dot. They are starving, excited to be home just utter chaos. We have a snack and talk about the day and then straight to homework. It is usually crazy amounts and no one wants to stay focused.

Yesterday, my friend and Kaitlynn's godfather, Raymond needed help with a photo project of his own. He was leaving in a few days to visit with family and wanted to take it with him. I can't explain it well enough but he is the youngest of ten children, he grew up on a family farm that his brother and other siblings still own.

He had a matte cut out in the letters of his last name and started filling it in with family photos. He realized he wanted each family member in their own space but did not have enough letters in his last name. He ask me months ago what would I do. I told him I would do something with the year his parents were married to provide enough spaces.

Because it was too costly to make one for each of his siblings he finished his and I photographed. We blew it up to a small poster size and he will be delivering them to everyone in a few days. I thought this was great idea. My dad even helped edit a photo of his parents so they fit in the space better. To me it was a huge labor of love and his parents would have been very proud. His mother, I am sure, would have been thrilled to receive one of theses.

While I was helping with the final phases of his project he took on the task of helping Kaitlynn and Jackson with their homework and entertaining Madelynn. The chaos heightened. When I finished I walked in the dinning room and he just shook his head. He grabbed Kaitlynn's math sheet and asked, "What grade is this??" I just laughed because Phil and I have asked each other the same question recently too.

I was glad I could help a friend but happier that Kaitlynn will have the memory of her god-father helping her with her homework. I remember growing up and my god-father always being in my life. He is a great friend of my father, I always loved to hear him laugh and someone I have great respect for. In forty years he has NEVER missed my birthday. I hope someday Kaitlynn feels the same way for her god-father (she calls him g-pa by the way).

Here is picture of the project my dad and I helped him finish.

TTFN~

Peanut's Canvas

 

Well part one of my annual photo project is finished. As I was going through my photos from this year I found this one. I have been meaning to take a picture of Madelynn standing next to her photo every time I take her to the pediatric cardiologist and always seemed to forget my camera. This year I remembered.

 

 

Photos of so many heart kids fill the walls of the office waiting room. The canvas of Madelynn  was taken a year after her surgery. I love it because she looks like any other child. I love it because when I see this picture I have no negative memories associated with it. At the time this photo was taken she had just finished a year of physical therapy. I felt as though she was finally on a road in her recovery that wasn't two steps forward four steps back. Every time I see this photo I can't help but smile.

I love sharing smiles.

TTFN~

stick a fork in me.....

I really should be in bed I am exhausted, I have to work in the morning and my brain has shut down. I am trying to watch the ND game but the Tide have rolled over them before half time. What an embarrassing display of college football.

I am not even sure why I have not gotten my lazy butt off the couch. We all have those lazy days where the drive is turned off. The dishes are done, kitchen is clean, three loads of laundry done I could go on but I am just done. I can do no more.

My original post for today will have to wait. Headed to bed to listen to the game until I pass out.

TTFN~

Rings....

Sometime between May of 1997 and December of 1997 Phil decided that I was the girl for him and picked out an engagement ring all by himself and put it on layaway. He wanted to have it for Valentine's Day 1998.

When he went to pick it up that faithful day in February the jewelry store had LOST it. As hard as they looked, it could not be found. In great frustration Phil looked at the jewelry store associate and asked what rings did he have for a similar price took that ring unsized and left the store.

After he proposed he apologized in case it didn't fit and told me the story. It fit PERFECTLY!!!

When we were shopping for wedding bands I was very adamant about what I wanted. My band had to match his. No diamonds or fancy art work just a simple matching band so that when I looked down at mine I knew exactly what his looked like. We shopped the city over. Most jewelry stores we went into had there own ideas of what my wedding band should look like. We walked out of those stores faster than we walked in.

The stores that did have what I wanted the selection was terrible. I didn't think I would ever find what I had envisioned. Until we walked into the jewelry store that lost my engagement ring. There it was in the case EXACTLY what I wanted. The rings are simple gold bands with diamond cuts in the gold. Well because of the diamond cuts the rings had to be ordered special they do not size this style.

Two weeks before the wedding we went in and paid off the rings. I asked if I could see them and try it on just to make sure it fit. READY FOR THIS......they could not find the rings. I wish I were kidding about that. They shut the store down for about two hours turning it upside down trying to find them. We finally left the store totally distraught. They promised they would find them and have them ready for us before we left town to get married. A few hours later I received a message the rings were found.

Fast forward about 10 years later I was giving Katie, Jack and Maddie their baths before bed. I used to have this nervous habit of spinning my diamond from my engagement ring around my finger. Not realizing I was doing it I felt pain and my finger was bleeding. My diamond had fallen out of my ring and I cut my finger on the broken prong. Read here for the story.

I have been carrying the ring with the broken prong and the loose diamond around in my purse for 3 and 1/2 years. Finally Friday I walked into the SAME jewelry store Phil bought it from and asked them to confirm it was in fact my diamond, could they reset and repair my ring. It will take about two weeks and $100.00 but it will be repaired. I am very excited to get it back.

I was telling my neighbor this story and about getting it repaired. She jokingly asked me didn't you take the hint maybe those were signs. I told her I didn't believe we weren't supposed to be together. She says why not. I told her because to this day my matching wedding band fits exactly inside Phil's wedding band like it belongs there. I saw Phil smile.

As long as they do not lose my original ring they are repairing I will be one happy wife. LOL!!

TTFN~

don't forget to laugh......

I have mentioned this before but, I have been working on my picture project that is far from done. I came across this picture.

 

I LOVE this picture!!

 

However, the amount of times the shutter clicked to get this one picture and the giggles, begging and fussing that came along for the ride was ridiculous. This picture was taken the last day of three weeks of day camp. Kaitlynn was in fine arts camp, Jackson sports camp and Madelynn was in mini camp (for mini people like her). Each week of the fine arts camp, Kaitlynn was able to make a tye-dye shirt. She was so thoughtful and made a shirt for each of them.

 

Thinking Jackson was stronger than Kaitlynn I originally tried something else. However he was having problems balancing Madelynn. All the sudden I hear, "Jack I'm falling", "Maddie I can't see", "Mommy Maddie just kicked me".

 

Which resulted in this:

 

 

 

Whenever I see the the good picture I will always remember what ensued to actually get it. It will always make me laugh.

 

 

Don't ever forget to laugh......

 

TTFN~