by Stefanie Ryan
(Photos courtesy of Grace Photography)
I am married and have 2 kids. I work a job and am involved in lots of activities around my kids and community. I am a leader for one of my daughter’s Girl Scout troop and my other daughter is actively involved in her troop. I am on the Children’s Hospital of Orange County’s (CHOC) Parent Advisory Committee and I volunteer there. I am also on the board of the Community Advisory Committee (CAC) for Newport-Mesa Unified School District.
Tell us about your special needs daughter.
My daughter has Spina Bifida. She goes to school with a one-on-one aid that I trust now after quite a long time. She also attends a good after school program that is available until 6:00 pm, which is important to me. If I need to work until that time, I know she’s in a good place.
I started a chapter for Spina Bifida and had a walk two weeks ago. I set up volunteers for it. I also work for New York Life Insurance where I am able to run my own business and work 1 or 20 hours. That flexible schedule allows for other activities and I am able to work and fit in what’s important.
So what is Spina Bifida and what does that mean for you and your family?
Spina Bifida develops in the first month of pregnancy. It is the number one defect at birth and because of it, my daughter is in a wheelchair.
When she’s with me, I call it the rubber band effect. The rubber band doesn’t stretch too far because she doesn’t like to be too far from me. When we’re at home, she has chores, does what she can at home, puts away silverware and puts towels away in the laundry room. The other day I asked her why she didn’t take the plate off the table. She replied that she didn’t want to pick up the plate because it’s made of glass and she didn’t want to break it. She’s very funny.
She has a medical procedure that has to happen every 3-4 hours every day and procedures every other night as well. It makes it hard to plan family outings, because we need to be conscious of her medical schedule. We have to plan things out and not let it hinder what we’re going to do. I’ve worked with her medical doctor to ensure that she can be involved in an activity without being hindered by her medical procedure. Sometimes they’ll tell me about new medications or procedures and they say a certain product can allow her to go all day. So now she can go on school field trips.
She is very knowledgeable of the world and how to make her life easier. A while ago we went through and made things easier for her in the kitchen. Everything has handles so she can do the day-to-day things. We really wanted to keep it functional but pretty too.
Once the kids are in bed, 9-11pm is my time since my husband works the night shift. I like to read and make jewelry. My oldest daughter and I make jewelry together. It’s one of those things that allows us to spend time together.
People often ask me how I handle it all. It is a lot of work, but when I have a bad day I think about my friend that has children that don’t speak or others that have more physical disabilities. I put myself in their shoes and think my life is not that bad. It’s pretty good. Everything’s a gift.
If we lighten up a little bit and don’t have to be a perfect mom or wife all the time, I think we’d all be a little bit happier. We don’t have to be Mrs. Cleaver!
Each person needs to take 10-15 minutes to breathe. To do things that make you happy and what satisfies you at the end of the day, such as getting a massage or doing yoga everyday. We’re unique and we have our own thing that will let us relax and not have our mind in overdrive. I like to have my time at night so I can sleep better after I’ve relaxed, instead of running around the house right before going to bed. When I do that, it takes me so much longer to fall asleep. That’s why I read and calm things down before I go to bed.
What advice would you give moms who are struggling to find balance between their work and home life?
My daughter has allowed me to focus on how precious everyday is and to not let the small things get to me. Sometimes people drive around and get so angry. If someone cuts me off I just think to myself, “I hope they get to the hospital a little bit faster.”
Look at things through someone else’s eyes and maybe your situation isn’t as crazy and hectic. Life can really be simple if you let it be.
(Photos courtesy of Grace Photography)