Skip to main content

eSpecially Parents June Edition: Denise's Story

When Luke was a baby I was proud to say he was a mama’s boy. He would reach for me while someone else was holding him and cry for me to pick him up when he would wake or need comfort. I can’t say I didn’t enjoy this attention and I am glad I did while it lasted. Luke has since made a new best friend. His name is Daddy.

I love watching the two of them play together. Luke is all boy and loves to roughhouse with his dad. I often hear his signature laugh from across the house when he sees his dad and practices walking back and forth to his waiting arms. He also loves to hear his dad cheer him on while he plays with his basketball hoop. One of my favorite games that they play is ring a round of the rosy because I know Luke will include me in on this one.

Matt and I have been married for 12 years. Having a special needs child definitely changed our relationship. We have a lot of worry. Will he need more surgeries? Will he ever talk or communicate more effectively? What if he gets hurt? Do we allow him to be more independent or do we need to hover more to keep him safe. We also have a lot of joy. Despite all of Luke’s challenges I don’t have to question whether he is happy. As long as he is reasonably healthy and happy the other challenges can be worked out.

I know the statistics for staying married while having a special needs child are not in our favor and this scares me. The divorce rate for parents of typical children is high enough. Throw in the added stress of doctor’s visits, surgeries, hospitalizations, therapy sessions, medical bills, fighting with insurance companies, and worrying about your child’s future and you can have a recipe for marital disaster. Matt and I try to defy these odds by making sure that we spend lots of family time together. I look forward to our weekends together where we can just get out, have a good time, and de-stress.

One thing I know we need to work on to keep our relationship healthy is having a date night every so often. I know most married couples recommend this special one on one time to keep the marriage alive and vibrant. We recently had a night out for the first time by ourselves in a few years. Although we had a great time, it felt strange not having the kids with us and we spent most of the night worrying about them. On the other hand, it was nice to be able to engage in a full adult conversation without getting interrupted, not to mention several hours free of whining and crying. I think I need to shoot for a night out every month and will try to make this a priority for our sanity.

I know our marriage is not perfect but whose is anyway? Every couple has stress and issues to work out so we are no different. Despite all the challenges we face as a couple, I feel lucky to have a great husband who is also a wonderful father.

New to eSpecially Parents? Check out the series here.


Popular posts from this blog

Impromptu Pet Therapy

  Ben met Doodle today. One of the staff at his day program brought him in. Ben loves dogs and these photos made my day. 

Parenting an Adult Child with Disabilities

  "Parenting an Adult Child with Disabilities" is a series on eSpeciallyBen. As Ben approached 18, it was clear our role changed as parents. We needed to help Ben transition into adulthood. These stories are meant to assist other families who face, or will face, some of the same challenges. Talking About the Future Guest Post - Matt Wilson Legal Guardianship, Medicaid and SSI Researching Group Homes Questions to Ask at a Group Home Visit Referral Packet for Group Homes Getting Assistance from a Care Manager From Group Home Placement to Discharge Reaching for Independence

Parenting an Adult Child with Disabilities: Talking About the Future

Ben in the middle with Dad (left), Carla Payne with Aging Care Matters and Mom This is the first of several posts about parenting an adult child with a disability. Ben will be 19 this summer; I am learning along the way. As always, I hope to pass on resources and wisdom. Discuss the future.  If your adult child is able to participate in planning for their future, ask them how they envision it. Let them draw a picture. Ask them to tell you a story. Maybe they can sign a few words that mean a lot to them. Find a way to get them involved. How do they see themselves living? By themselves, in a group home, with another family or with a sibling? Where do they want to live? In another city, in an apartment, in a house? How far away do they want to live from family? What level of independence can they handle? Do they want someone to check in on them? Do they want to find a job? Do they need a job coach or supportive employment? Who will help them with their finances? Is there someone they tru