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Children can often take over the lives of a family. There are so many activities, school events, play dates, and other scheduled tasks involved with having children.

When your child has special needs, this is only magnified. We have therapy appointments, school meetings, doctor appointments, specialist appointments, trips to the pharmacy, phone calls with insurance providers and supply companies just to name a few of the things that fill our time during the day. At night, our time is filled with finishing feedings, applying monitors and machines, and managing a child that has difficulty sleeping.

When our son was little, he had a very hard time sleeping. We went a few years where he only slept a total of 2-4 hours per night. My husband and I learned to take turns staying up. I took the first half of the night, and he would take the second half. We were both tired, but we both could at least function.

Our lives are busy. There is no denying that we are wrapped up in our children’s lives…and gladly so. But late at night, as I decide what TV show to watch while rocking a child, I think about who I have become.

I had hobbies in the past that I placed on the back burner. I don’t regret it. If our special needs son has taught me anything, it is to focus on the priorities. I can always take up a hobby again, but time I don’t spend with those I love, I can never get back.

I wanted to find hobbies to do with my kids, so I can not only care for my inner self, but also spend time with my children and teach them new things.

I love a good workout, but gyms aren’t kid friendly especially for a child with special needs. Even if they have care centers, they typically aren’t equipped to care for a special needs child.

I have been on the search for a good workout my kids could do too. I finally found one that works with our budget and I can take our youngest son while the other 3 are in school. He has made friends and has fun. Over spring break, all 4 of my boys joined me on this workout. Our special needs child played on his mat next to the music playing and he was smiling and dancing. We played peek-a-boo as I ran by him while doing laps. He loved it. The big boys played basketball and joined in to some of the exercises. We all had fun, and we were all doing it together.

My husband loves sports as does our 8 year old, so they play together. My husband also helps out with our son’s sports team. They are able to bond over their passions. Our oldest loves creating, so we all build Lego’s together - I still love Lego!

My husband and I have always loved hiking and camping. Our special needs son requires electricity, so tent camping is pretty much out of the picture. Instead we take day trips nearby to hike. We make camping food on the grill. We attend medical conferences each year and we plan stops to as many national parks as possible. All of our children love being in nature. And as a mom, this is an even better experience with my awe-inspired kids. 

Despite the crazy life we lead, we have to find ways to take care of ourselves as parents…discovering who we are while still incorporating the most important role we have been blessed with.

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. ...

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Categories: parent-stories, lifestyle,