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Sometimes I feel so isolated. Our situation is unique and it’s so much different than our friends.

I am an extrovert by nature. I thrive off of social interactions and friendships. I love my life, I really do but only having one babysitting option nearby is hard.

Through the four years of having a child in and out of the hospital, we have cancelled many social gatherings. We have backed out last minute to dozens of parties, graduations and showers. It’s been very hard on our friendships and we have lost friends that just don’t understand. It’s been a great indicator of who your real friends are.

Our very close group of friends have a yearly gathering at the lake this weekend and due to the pandemic and our need to be extremely careful we have to miss out. In fact, we have never made the full weekend since we have had kids. It’s one of many that we will miss in the future I am sure as well. Life goes on and we have been adapting for years, taking turns going to events and socializing. However, going out together with friends is very rare, as in maybe once a year.

You see, my parents and my sister in law are the only family that are capable and willing to take care of Sawyer.

If Sawyer didn't have unpredictable reflux episodes and hard to detect seizures we could have more options. Unfortunately, my parents live 3 hours away and are full time care takers of my grandma with dementia.

This means we are left with one option for babysitting and we often call on her for appointments and various help so we do not call on her for date nights or nights out with friends. I know she would be more than willing. I know she is reading this thinking “I am going to give them a night out” BUT she can’t do it all.

I know that having a child that has so many unique needs makes it hard to carve times for date nights, let alone socializing. When you throw in the current pandemic and we are down right isolated in our friendships and even our own relationship.

Throughout these past 4 years we have tried to adapt our date nights to simply enjoying wine on the porch after the kids go to bed, watching a favorite show together or playing games. The kids sleep schedules haven’t been ideal so we squeeze them in when we can or aren’t too exhausted.

The one thing that we are very good at is remaining positive and finding laughter in the small moments. It’s all we can do for now but this too shall pass and I know we will miss these days of the kids needing our constant attention.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Francie Khalaf

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I am a wife and mother of two children with cerebral palsy. I believe in making lemonade out of lemons.

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