The Importance of Community for Parents of Kids with Complex Medical Needs

The importance of community to kids with complex medical needs can't be underestimated as Jill Seaney has discovered since her son was born 3 years ago.

Guest blogger Jill Seaney is back with advice for new parents of kids with complex needs. The advice comes from her personal experience since her son was born three years ago.

When my son was born with complex medical problems, I faced a set of challenges I never expected. I immediately turned to my husband who was a pediatric nurse at the time and to the surgeons, physicians and nurses caring for my son with my questions and concerns.

 

In the beginning, these resources were a wealth of knowledge. But what I didn’t realize is that medical professionals are great resources, but that what moms really need long term is a support group of other parents walking the same path. Moms and Dads of kids with complex medical needs live in the trenches all day, every day, and have a vast knowledge of what its like to raise a kid similar to mine. Most medical professionals or friends/family don’t have that same knowledge simply because most of them don’t live and breath it 24 hours a day.

Medical professionals can teach me about anatomy and symptoms, fixes and long term side effects. But they cannot give me the practical advice and tools needed to fight our every day battles. The same goes for friends and family. I can rely on them for advice about potty training or sleep training their children. But they cannot offer the advice of what it’s like to do those things with a kid with complex medical needs that is so different from their own.

After we brought my son home from the NICU, I felt isolated because I wasn’t experiencing newborn life the way I had imagined. My caregiving duties became more and more overwhelming. I spent a lot of time online reading other parents blogs, joining Facebook groups for parents and individuals with the same birth anomalies as my son, and scouring the web for resources. I was searching for anyone who was walking a road similar to mine as a mom with a 3-week-old newborn who had already faced major surgery, was facing more surgeries and had a multitude of life long medical complexities. I can’t describe the feeling of chatting with moms who were or had been in my shoes. They understood the worries, the medical terminology and had advice to give.

I’m so thankful I figured out the importance of community for parents raising kids with complex medical needs. I am in at least 15 different groups currently and have gained so much knowledge from other parents. I can get on these groups 24 hours a day and ask questions that doctors or friends and family aren’t able to answer. Within minutes I typically have answers from more than one parent.

These groups have a wealth of knowledge and a camaraderie of parents with a mutual trust and respect. It’s a breath of fresh air to communicate with other moms who understand my fears. Its been a beautiful ride to go from being the new parent with all the questions to now being one of the veteran parents who answer them. I feel fortunate and thankful for the friendships made along the way. I can’t imagine momming without them!

My advice for new parents  is to seek out a community of other moms and dads raising kids with complex medical needs similar to your child’s. You will find solace, peace of heart and mind, and many incredible parents and kids to cheer you on.

Jill SeaneyJill lives in Tucson, AZ with her husband Jeff and their son Blake. She worked in Human Resources up until 2014 when her son was born with VACTERL Syndrome which included EA/TEF. Jill resigned to care for her son full time. Later he was also diagnosed with a Congenital Diaphragmatic Hernia and Eosinophilic Esophagitis. Jill’s personal blog (Beloved Blake) documents his surgeries and health challenges, their family struggles, and Blake’s milestones. Jill loves writing and teaching others about what it’s like raising a child with complex medical needs. She wants to be a blessing to other parents just starting on this journey.

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1 Comment

  1. March 24, 2018    

    Your story is very inspiring and you are really very strong.

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Meet Jolene

Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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