articles and blog

Life has a way of pushing you in directions you never thought you would venture.

A little over four and half years ago, our son was born with a genetic condition called Trisomy 18. We discovered his diagnosis when I was 17 weeks pregnant. The rest of my pregnancy, we were bombarded with information, resources, and discussion about his death. We planned his funeral; we tried to plan for every possible death scenario from stillbirth to a few days living with us.

We didn't stop to consider that over four and half years later, we would be playing with our little boy and trying to help him grow and develop. As he has beat the medical odds, we've been pushed into new roles of having to be parent advocates.

As parents we're all advocates for our children - special needs or not - but advocating for a child with complex medical and physical issues is entirely different. The road to becoming a "parent advocate" for our son has not been easy.

At our son's diagnosis it was clear medical professionals had an established idea of what his life would be. It would be short - we were being prepared for him to die. We were assured that they would do everything possible to make his death comfortable for him. They did everything they could to make things easy on us by providing food, photographers, support personnel, and space for additional family.

I sometimes wonder what would have happened if we said "no" to all of the comfort things and requested full treatment for our son. But hindsight is 20/20. There is no doubt in my mind our son thrived because of his stubbornness and the love we surrounded him with.

It's a parent's right and responsibility to advocate and partner with their physicians and to hold them to the highest level of care.

I look back through our son's life and see the changes in myself and my husband. We have always wanted the best for our son. We have always thought deeply about his care choices, and we have always brought his medical care team into our discussions. But I can see a progression from compliant parents…following all medical orders, to parent advocates…suggesting what orders should be written.

This transition has not been easy. It has meant learning about options for care treatments. It has meant learning to trust ourselves. It has meant fighting for what we felt was necessary treatment for our son. It has come with inappropriate name calling when trying to be a "strong advocate" for our child. It has been hurtful. It has been tiring. It has been lonely.

Despite others wanting the best for our child, we are the only ones who will fight relentlessly to achieve it. We get to be our kids parents, and we're the best ones to help our children become everything that they can be.

Being the best advocate for our son doesn't always mean having to play a hard game. It also means knowing when to let our son's presence do the work and knowing when it is time for a change.

Our beautiful, caring, cuddly, active boy that I get to watch grow everyday makes it all worth it. When I feel defeated and scared of the future, I just think of our boy and how far he's come.

Terra Garst

Terra has lived in Omaha her entire life with her husband and four sons. She enjoys being a stay-at-home mom and driver for all her children's events. She is a nurse and uses creativity to get things done! Terra is Nebraska's state chapter chair for Support Organization for Trisomy 18, 13, and related disorders (SOFT) as well as their prenatal outreach contact. She also volunteers for Hope for Trisomy. ...

Learn more about this author

Categories: parent-stories,