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~