Picture this with me:
A dad. A mom. Two daughters — one who is thirteen years old and one who is ten years old. A nice little family that remembers the baby days with fondness but is content for them to be just that; memories.
This is a family that has finally reached the time where the girls can be left alone at home during the day. A family that can catch a movie or go out to eat at the drop of a hat. A family who can travel without having to lug strollers and diaper bags and car seats and baby monitors and bottles and…a mom and dad that are starting to think just a little bit about those empty nest days that don’t seem so far off in the future.
Add one very late night, a hasty look at the calendar, a husband’s panicky trip to the drugstore, and utter disbelief at the results of a pregnancy test.
And then there were five.
Little did I know, but adjusting to an unexpected pregnancy and a late addition to our family was the easy part.
Our precious baby girl was born with a host of medical issues that were discovered on her fifth day of life, the most serious of which was a hole in heart, requiring open heart surgery when she was just four months old. After recovering from all the physical ailments, Lily seemed to be doing fine, meeting milestones just slightly behind her peers. She was walking and talking and doing well.
Then at 18 months of age, our Lily started slipping away from us. By 20 months, she no longer had any words and at times, seemed to not even notice her family. She received a diagnosis of autism at the age of three, a little over two years ago now. While she has come leaps and bounds, is incredibly affectionate and smart as a whip, she is still nonverbal.
So how does a content little family of four get their heads around all this change and move towards becoming a content little family of five? Well, we’re still working on that ourselves. And every day is an adventure. But I can share with you a few things I’ve learned through the years.
- Beating yourself up over getting your hair colored or taking ibuprofen or riding a horse or skiing before you knew you were pregnant does not do one bit of good. Not at all. Let go of the guilt.
- It’s perfectly fine to occasionally wish you weren’t pregnant. It’s not perfectly fine to share your feelings with people you don’t know well. You never know who is struggling with infertility and would love to be in your shoes. So don’t complain.
- You know your children best so keep that in mind when preparing to share your pregnancy news with them. We told our girls right away because we knew they could handle it. Looking back, I’m not so sure that I wouldn’t have waited to tell them until I could talk about it without crying. Seeing a parent cry can be emotional for most kids so use your best judgment. Also, it’s never a good idea for us to lay something on our girls right at bedtime. No one gets any sleep that way. We try to share news with them early in the day so there’s plenty of time for talking things out. So timing is important to keep in mind, too.
- Be willing to accept offers of help. It’s hard for me to admit that I can’t always do everything all by myself. But spending the bulk of Lily’s first five months in the hospital taught me to set aside my pride and ask for help. Extended family stayed with the big girls. Friends invited them for sleepovers and drove them all over kingdom come so they didn’t miss dance class or soccer practice or church. I rarely had to cook during this time because meals were regularly delivered to both my house and the hospital by our church family and friends. People really do want to help out so let them. Then everyone is blessed.
- Let go of the idea of family time meaning the whole family doing something all together. It’s just not always going to work when you have a special needs kiddo, especially with a big age gap. We make an effort to spend time with the big girls only, doing things we wouldn’t be able to do if Lily was with us. It gives us a chance to really talk, listen, and hear about what’s going on with them without interruption. Our whole family time with Lily is more simple, like walks around the neighborhood or jumping on the trampoline. It took me a while to really be fine with this idea of “divided” family time. But it works better for everyone this way.
- A special needs child is needy. There’s no getting around that. And as parents, we tend to gravitate to the child who needs us the most. But keep in mind that our other children need us too, even if it’s not as openly visible. As hard as it is, try to steal moments throughout the day, one-on-one, when you can give each child a bit of your undivided attention.
- Allow your typical children to express their frustration. I know that sometimes, I just need to “get it all off my chest” so I can move on. It doesn’t mean I love Lily any less. Nor does it when your other kids feel the same way. Give them some time to vent while you just listen. Let them know you understand how they feel. While nothing can be magically fixed, a quick little pity party can occasionally feel good.
- Seek support. I cannot stress this enough. You cannot do this alone. Or with just your family. Look for groups at churches, schools, therapy clinics, and online and get plugged in. Visit several until you find the one or two that you really feel compatible with and that meet your needs. Ryan and I attend a monthly couples support group and I go to a mom’s of special needs kids group as well. These support groups are my lifeline. I cannot tell you how much being with a gathering of people who “get it” means to me. So find your group. And go. You won’t be sorry.
I still have moments when I wish that things were different. When I wish things weren’t so hard for my little family of five. When I think of the dreams I had for my family and understand that things might not turn out like I planned.
No, life might not turn out like I planned.
It just might turn out better.
Photo by SCA Svenska Cellulosa Aktiebolaget
