Before jumping into any questions today, can you share with me all about your family?
My family consists of my fiancé Jeffrey, my three-year-old twins Dale and Zack, my god-daughter and three step-children. My step-children live in different states so we keep in touch over video chat and phone calls.
My pregnancy was complicated and the twins came at 26 weeks. I was told several times I would not see my children make it through the night. Dale spent 151 days in NICU and Zack spent 192 days. Of course, there is so much more to the story than just that.
What does a typical day look like in your home?
My day typically starts around 5:30 a.m. I get up and make coffee, start getting medicines ready, prepare Zack’s g-tube feed and get Dale’s breakfast ready. I get their clothes out, get them up and changed and fed. Then we check our calendar and usually head to appointments. Sometimes we have five appointments per day, sometimes one. In between, and even during appointments, I am on the phone with doctors, specialists, nurses and medical supply companies. I’m juggling a calendar that rarely has an opening. There is never really any downtime, that is for sure. Throw our new puppy into the mix and that just makes it even crazier.
If any of us were to see special needs parents having a hard time with their child, is there any way we can offer to help without sounding condescending?
One thing I wish people would do for me is hold open a door. A lot of times I find myself holding the door open for the people that stand there staring at us. I also wish people wouldn’t tell me they are sorry. My children may be different, one more so than the other, but there is nothing to be sorry about. They’re both amazing humans!
What are the biggest blessings that come with raising a child with special needs?
That although our life is busy and chaotic, I get to enjoy the things people take for granted. I am able to enjoy the fact that my children are alive. They fought so hard to stay here with me and I am able to watch them find pure joy in simple things. To see the determination in both of them to conquer the world is amazing. I always wanted to be a nurse and a mom. Although I don’t work in a hospital or have a degree, God gave me a way to fulfill my dreams, have a family and the “job” I always wanted. I witness two miracles every single day that remind me to not take anything for granted.
How does having a child with a disability affect your other children? What are the challenges and also the rewards?
Dale is more caring and wants to involve Zack in everything. He wants to help with every task when caring for Zack. He is also very protective of him. The siblings live in other states so it is hard because our main form of communication is video chat. Since Zack can’t talk with them, they don’t understand how to communicate with him. When they are able to visit, they tend to be more involved by trying to help him learn new things and play with him.
What should we tell our kids if they ask (loudly) about a potentially special needs kid?
I wish parents wouldn’t shoo their children away. It’s okay to ask questions. When they blurt it out loudly, just approach us and ask if we mind answering questions. I’d rather teach someone about my children than to have them not be included because people are afraid of them. There is nothing to be afraid of. Just teach your children how to ask questions nicely and appropriately.
What do you wish you could tell others, but don’t usually get the chance?
I haven’t experienced motherhood the ‘typical’ way. I wasn’t able to bring my kids home after they were born. I didn’t get the newborn snuggles and visitors. This whole experience has been a lot different than I imagined, and unless you’ve lived it, you wouldn’t understand.
A special needs mom’s life is hard and lonely. It’s chaotic, stressful and time-consuming. We lose friends. Family stops coming around. We often decline invites to things because being in our bubble, with our medical supplies at our fingertips, makes us feel a little more in control. We’re doing the best that we can. We truly give our children every ounce of us that we have.
As summer is coming to a close, I would love to know your most cherished memory made this past summer.
My most cherished memory is when we went to visit my parents in Kentucky. We went to the Cincinnati Zoo and met the preemie hippo Fiona!
If you could give your younger self one piece of advice, what would it be?
I would tell myself to cherish life and the things we take for granted every day. Some things don’t come as easy for others.
Patricia King and her fiance Jeffrey met in June 2018. Together they have five kids and a puppy. You can follow this family’s story on Facebook at @micropreemiesdalenzack.