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4 Tips to Help Medically Complex Families

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I’ve always had a lot of health issues. I had surgery on my stomach when I was about 7. I was hospitalized a lot of my 6th grade year. Then I was diagnosed with hashimotos in high school. When I look back on my childhood, my health is what stands out to me; memories of pain, specialists and medications. I thought since my childhood was hard, life would get easier. Unfortunately, most of my teens and early adult years were also spent battling my health, but I learned to accept this.

Then I got pregnant with my first child. It was a rough pregnancy, nothing like I imagined, but I survived it. Our son had no medical complications and I was relieved. But at 6 months old, my son started having tremors. At first we thought it was seizures, but his neurologist assured us it was “his way of processing.” There were also concerns he was delayed developmentally, so we started occupational and physical therapy. He is now almost 3 years old and in therapy 5 times a week with a diagnosis of autism.

This is only part of our story. I became pregnant with our daughter when our son was about 16 months old. We were beyond excited, conceiving her was not easy for us, maybe because of my hashimotos. I had another rough pregnancy, this one much worse then with my son. I had hyperemesis gravidium. I don’t like to talk about this because I feel as though others automatically assume this is what caused our children’s health issues. You see, at 24 weeks gestation, our daughter was diagnosed with hypoplastic left heart syndrome, a severe congenital heart defect. This was not due to the medication I took for hypermesis, I was not even prescribed medicine until later in my pregnancy when her heart was already formed.

Our daughter was born and we savored each moment with her, never knowing how many we would have. The expected course of open-heart surgery was not working, she needed a heart transplant. But a donor heart did not come in time. Our beautiful girl lived for 4 months and 9 days before leaving this earth and entering heaven. Our world was turned upside down and we have been through what no parent ever wants to go through.

Sometimes I look at our family and I feel shock. All I’ve ever wanted was to be a mommy and my children have had to go through so much. So so much. It’s  hard to see my children’s struggles. It’s also hard to navigate a world who glorifies wellness, health and perfection when your family seems to be the opposite of that.

So what do we do? How do we cope when we have a family with multiple members who deal with health issues? We learn to do what we need to do to survive and make it to the next day.

Here are a few tips for those with a medically complex family.

Throw people pleasing aside.

People have an idea of what life should look like and they may expect you to keep up with them. But when your family has high needs, it’s impossible. Learn that saying,”no” is not only OK but imperative. If others are not understanding, they are probably not people to have in your life anyways.

Do not set yourself up for failure.

I have learned this the hard way. My son cannot do grocery stores because of sensory overload. But I kept pushing it. One day I finally realized I was setting us up for failure. So now, I shop when daddy is home to stay with him. This is just one small example, but by not pushing your family, it can cut back on a lot of stress.

Accept your family’s life may look different from others.

This can be a tough realization. Other families may be worried about things that feel very minor compared to the issues your family is facing. It’s frustrating. But feeling envious all the time can be draining and emotional energy is too important to waste.

Surround yourself by people who get it. 

We have found families who face medical issues to be the ones who understand what we are going through. Connect with other families whether it’s through social media, support groups, therapy centers, etc. It helps to know that you are no alone.

Above all, give yourself (and your family) grace! Savor the good moments. As a mom who has lost my child, I am so thankful for each moment I had with my daughter, even though they were hectic days spent mostly in the hospital.

I hope you find some of these strategies helpful.

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