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
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
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
- 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
- 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
- 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
Photo by SCA Svenska Cellulosa Aktiebolaget