Meet My Heart Hero – #CHDAware

Meet My Heart Hero

Meet my heart hero – my son!

February is a very important month for our family, because we celebrate a very special hero.  During the week of Feb 7-14 we are celebrating my son’s courage and strength, as my son is a Heart Hero!

Jacob after heart surgery

During this coming week I will share with you different stats about congenital heart defects.  My son was diagnosed with Tetralogy of Fallot.

Listed below are examples of different types of CHDs from the www.cdc.gov website. The types marked with a star (*) are considered critical CHDs.

If you are looking for more information about congenital heart defects, check out this list from the CDC website of other organizations committed to understanding more about congenital heart defects.

You can find out more of my son’s journey in my book at “Jacob’s Journal – My Journey Home.”

Jacob's Journal

This book is a recount of what Jacob went through the first 6 months of his young life, and the unique thing is I wrote it as if Jacob was telling the story, because in fact it is his story. I also created a glossary of terms so if families hear those words, they have a better understanding of what they mean.

 

If your child is a “Heart Hero”, please comment below what their diagnosis is.

 

About Our Family

family-pic-in-fl

Hello we are the Murasko’s (Paul, Marla, Amanda & Jacob)

We are a fun, loving family of four! Grateful every day for having each other and the blessings that have been bestowed on us.

 

My husband and I have been married for over ten wonderful years.  We have definitely had our share of worries and struggles, but we as a family have come out on top and are so grateful for what we have – EACH OTHER!

We are your typical family we love to spend time together, love to travel, we love to dance, sing, play games, cook together, clean together and laugh together.

We have been very fortunate to have gone to many different places for family vacations.

About Special & Determined

The eyes are the windows to the soul. If you see what we see, then you see a beautiful, loving, special and determined young boy, with dreams and aspirations much like that of his peers.

He’s special not because of his extra chromosome, but because of his unconditional and selfless love for people. He truly has a magnetic and loving personality, and you can see it shine through his eyes.

He is determined to make our lives and the lives of those he meets better. He teaches us to love and to have faith that all things are possible, but mostly he makes us laugh.

Jacob is making his mark on our community by spreading awareness, teaching that inclusion and acceptance of children with Down Syndrome is “cool”, and as his mother I am determined to give him the voice and platform to do that.

All things are possible when you believe, I learned that the day my son was born!

This blog is to share about our everyday life as a family, while offering support  and encouragement to mothers of children with special needs. I look to share my perspective of why being a mother of child with special needs is truly a blessing!

I’m not going to stand here and tell you that caring for a child with special needs is easy, it’s not.  There are days that I wished I could wake up and start my day all over, but really what parent doesn’t feel like that a time or two.  I can say that as exhausting as it is, it is so much more rewarding.

I am passionate and driven about my cause to raise awareness and acceptance for children with special needs.

I leave you with this “just believe“!  Believe in your child, believe in each other as a family and in the end know that you are doing the best you can!

 

My Birth Story

I was born March 22, 2006 at 1:32pm in Naperville, IL by cesarean section. I weighed 7 pounds, 12 ounces, and was 20 1/2 inches long. The picture above was my christening picture in the hospital before my shunt surgery (16 days old). [Read more…]