Miracle Monday: Special and Determined - The Blessing of Jacob

I wanted a child of my own.  I had a beautiful stepdaughter, who I adored, but still had this longing of bringing my own baby into the world. My husband Paul and I prayed and prayed, enduring months of infertility. Once we stopped trying and striving to get pregnant, God answered those prayers. We were going to blessed with a son.

I was older and at high risk, and underwent a  Level 1 Ultrasound and an Alpha-fetoprotein blood test.  Doctors discovered an abnormality in his tiny heart. They said, “We are 99% sure this baby has Down Syndrome, do you want to have an amniocentesis?”

We went home, thought about it, prayed about it and talked about it, and decided, “NO”.  We are Catholic, and believe that there was a reason why God had blessed us with our son.  Whatever child we were going to have, we were determined to love.

His birth confirmed that - Yes, our little Jacob had Down Syndrome.
 
We looked at our son, who was so fragile, and we weren’t sure how his life was going to be.  Here he was laying in this hospital bed hooked up to so many tubes and wires, alarms and bells are beeping and going off, surrounded by nurses. It was so overwhelming, and a part of me was so scared of him – That I wouldn’t be able to care for him.  Yet I also fully believed that he was going to live a quality life.

I will always be grateful for the hospital chaplain that came and visited me in the NICU.  I questioned my faith.  I questioned, “Why would God do this?” “Why us, why him?”
 
His tender response was, “There is a reason for this, you’re not going to know this now, but you will discover the reason”.

I went through a few weeks of Postpardom Depression because I had to go through the grief process of the child I lost and dreamed of (as did my husband).  We had to overcome this grief in our hearts and minds, doubts that we could care for this little boy who would need SO MUCH. But my son needed for me to be strong, and that I became!

There really wasn’t an option, we came to the conclusion that, by the grace and help of God, we can do this, we needed to do this, because Jacob needs us. So, we were going to do what we could, whether that’s emotional, spiritual, physical, or financial. We were going to provide him with the best life possible.  We would need a support system and Jacob would need surgeries, early intervention services, and a team of therapists (Physical, Occupational, and Speech).

Because of his heart condition (which many DS children are born with), Jacob was a very fragile child.  Our number one concern was his heart condition: “Tetralogy of Fallot”, which was very serious and involved 4 different abnormalities of his heart.  His little heart was beating but was beating so fast, it couldn’t get the oxygen needed for him to breathe.  By 6 months old, he had undergone open-heart surgery.
 
There were many nights spent in emergency rooms where we weren’t sure if Jacob would pull through.  We had to put him in God’s capable hands, and trust “There is a reason”.
Thankfully, in those early months before and after surgery, early intervention therapists would come to our home and work with him.  Another issue babies with DS struggle with is hypotonia (low muscle tone) – which makes the muscles “floppy”.  Through therapy, he was getting stronger and as he grew, became more functioning.

As Jacob got older, we juggled another hurdle. Some of the necessary therapies like Speech therapy were not being covered by our insurance because of the diagnosis of developmental delay.  Therapies like Speech and Occupational are so important, especially in the early years even into school. Some DS children will need certain therapies all their lives.  Because we wanted Jacob to live a quality, productive life, we continued those therapies and paid out of pocket – Thousands of dollars.
 
We realized that we could not be the only family with a DS child experiencing this financial burden.  That is when we created a non-profit called “Special & Determined”.  Because of our faith, we believe all things are possible. When people believe, and children are provided the necessary tools they need, they can and will lead a productive life filled with potential.  We want to increase education and awareness that shifts the mindset and stigma of DS and focus on what these kids CAN DO.

Jacob IS a blessing, and there is a reason and purpose why God gave him to us.  He’s now 15 years old and thriving.  He’s a trail-blazer in the Down Syndrome community.  I fully believe that he is spreading awareness, providing education to society so that people, companies, and organizations can see that individuals with disabilities are capable of doing so many things -- As long as there are people around them providing them the support, encouragement, and necessary tools that they need.

Jacob is educating society.  He’s fully included in the community where we live in Hopkinton, MA.  He’s active in his school, and he is an example to younger families who’ve just been given a diagnosis of Down Syndrome.  If someone is looking for a success story, Jacob is that role model. He is a light and the best person I know.  He is involved in Special Olympics, winning medals, and he’s the manager of the Volleyball team at school. He plays Unified Basketball and is also a member of the Boston College Swimming and Diving team through a nonprofit called Team Impact.  To this day we believe that Jacob is Special and he is Determined.

If you remember nothing else, know this: You don’t have to go through this alone – Find an organization or community with people who are going through the same journey as you.  They become a family (outside of your family).  As a mom of a son with DS it’s hard to explain what I’m going through to someone who doesn’t have the same struggles when you have a child with special challenges. But we’ve found that DS community support. They get it.  At first, we felt alone but now we don’t.

My name is Marla Murasko, and this is just one of my miracle stories.

**Marla has written a book: “Jacob’s Journal-My Journey Home” to help other families with DS children navigate many of the challenges.  Her and her husband have also started Special and Determined, a non-profit that gives financial grants for important therapies that insurance does not cover.  More information is at:  www.specialanddetermined.org  **

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