Days like Easter Sunday always came with an extra bit of anxiety in the first several years of Elise’s life. I would get the kids dressed up in their best church clothes and arm them with Easter baskets, ready to be filled with eggs. Lane would take off into the backyard with his sights set on last year’s best hiding places. Elise would sit in her wheelchair, basket hanging off of the handle, with me struggling to push her through the grass while plucking up eggs to add to her collection. All the while, I would struggle with my video and digital cameras to capture memories of my two kids enjoying their annual Easter egg hunt in the same way my brother and I did as children.
Did Elise enjoy the experience of bumping along over tree roots and rocks in her wheelchair? Probably not. Did she know what was going on? Definitely not. But I knew -- and for me, in those first few years, it was extremely important for Elise to be involved in all activities that a regular little girl would enjoy with her family. This routine has been repeated several times over the years. Not only for Easter, but for decorating the Christmas tree, coming along on far-away family vacations, and parking her wheelchair right up to the dinner table for our nightly meal. Yes, this all probably sounds reasonable to most. Why shouldn’t she enjoy the parts of life that all other kids get to experience? Well, what most people don’t realize, is that including Elise in all that we do as a family can be downright stressful, and at times, nearly impossible.
Having Elise at the dinner table every night was distracting to us all. She’s tired around that time, and either Chris or I would take turns on who would pacify her cries so we could talk as a family. Including her in Christmas tree decorating usually meant waiting for her to be cooperative, happy, and willing to sit for numerous pictures of me holding her hand up to the tree as if she was helping. The thought was sweet, but the process was sometimes unnecessary.
I now understand that I can show her my love by just leaving her alone sometimes. There is never a question as to how much interaction and attention Elise gets on a daily basis. Between school, therapists, and her family, she is thoroughly spoiled...as well she should be. My feelings of guilt are slowly but surely melting away, as I realize that my quality of affection and care for her are not measured by how many times I include her in things that she doesn’t even benefit from.
Earlier in Elise’s life, taking her along with us wherever we went was easy. She was just like any other baby. Even as a 3-4-year-old, transferring her from the car to her chair, changing her diaper while out, and feeding her on the go were still pretty convenient. Now, however, it is a drastically different story. She is bigger, heavier, and harder to handle. The back of our van has become a make-shift changing table, and I definitely get a full work out when I’m alone and have to transfer her in and out of the car.
There have definitely been times when we have thought twice about bringing Elise along. Several years ago, we took a weekend trip up to Robbers Cave in Oklahoma with our church Sunday school class. We could have left Elise with my parents and other close caregivers. However, I was determined to have a “family” camping trip. One of the highlights of the weekend was climbing a huge group of rock formations to the top, allowing us to view the entire park from above. Wheelchairs just don’t climb rocks, though. So, Chris was left at the bottom with Elise, waving goodbye, as the rest of us hiked on up. It turns out, Elise wasn’t comfortable sitting by the fire, or being transferred from the car to her chair, to a bed, to the car, and so on. Camping trips just aren’t the place for anything high-maintenance. We have gone back to Robbers Cave a number of times since then, and decided it was best to leave Elise home with family. All around, I believe we were all more comfortable that way.
Don’t get me wrong! I still try my best to include Elise in many of our daily activities and traditions. She goes with us on family walks, attends many of Lane’s school functions, goes Trick-or-Treating with her brothers, swims in my mom’s pool, and goes on shorter distance vacations with us. We take her to restaurants, Lane’s sports games, and even the movies (We get to score the sweet seats in the handicap section)! She may not understand that we are all there with her, but we know that she is there with us. It has always been important to me that the boys have memories with Elise in them. Not just around the house, but in public--having fun, going to the pumpkin patch, sitting in Santa’s lap, and eating lunch at McDonald’s.
The whole family packed up to go rollerskating a few weeks ago. There was talk of leaving Elise at home with her daddy, so we wouldn’t have to worry about her just sitting on the side of the rink hitting herself out of boredom. In my true “let’s take her -- it will be fine” fashion, I packed her up in the car anyway, and we set off for the skating rink. Much to our surprise, the lady checking us in told us that Elise could go on the rink in her wheelchair! We took her out on the skating floor and pushed her around. It was a great experience. All 3 of my kids were doing the same thing at the same time! (Ty skated for a minute, but soon gave up). Elise loved the wind on her face, and the motion of zooming around doing laps in her wheelchair. It was so much fun that we went back to skate a couple of weeks later.
That is an example of a good time for Elise to come along and be involved.
Yes, many family pictures are taken without her. At Ty’s birthday this year, she was sleeping in her bed when we took pictures and video. A while ago, I would have felt guilty that she wasn’t in them with us. I just had to get a hold on reality, and realize that just because Elise isn’t part of everything we do, doesn’t mean she is any less a member of our family.
Nowadays, it’s all about balance. Can Elise get something out of this event, and is there some element that she can enjoy about joining in? Will she be happier in her bed, in someone’s lap -- or in the middle of the action? Is including her going to put unneeded stress on me or my husband, when she could just as well be comfortable in her bed? I have surrendered my role as “Special Needs Supermom”, and instead put on the cape of “Let’s Make This a Little Easier On Everyone Mom”.
I now make it a point to stop and evaluate each situation for what it is. Am I including Elise for her sake or for mine? As the years pass, answering this question authentically has become easier and easier. It is no longer as important to me that I put up the facade of “everything is normal”, because it isn’t. The sooner I swallow that hard fact, the sooner everyone can enjoy themselves -- including Elise.
The final Easter that Elise went egg hunting. Notice that they both have a basket full of eggs. I was thoroughly worn out, and she didn’t exactly enjoy herself. I convinced myself it was OK if Elise sat next Easter out!
You can see this Easter Lane is the only one with a basket. I promise, she didn’t even realize it. She was just happy to relax in her wheelchair and enjoy being outside with the wind blowing!
Elise lined up with the other kids one Easter for a picture. Still no basket. I pushed her around and helped her brother find his eggs.
She still can pose with her brothers next to milk and cookies put out for Santa!
Don’t even ask me how I got her to keep that horn in her mouth long enough for a picture. Lane and his sister getting ready for New Years!
Daddy and Elise swimming. Elise LOVES the water, and now has a much larger life jacket. It keeps her head out of the water and supports her weight, making it easier for us to put her in the pool.
She joins us at the dinner table every once in a while. This was a Sunday dinner at my mom’s house. (I was sick that day, which explains why I am in a nightgown!)
We took Elise along with us to a drive-in movie with the boys. I was worried about how she would do in her carseat for so long, but she ended up doing great!
We always take Elise with us to Paige, Tx near Houston for our family reunion each year. Here she is being loved on by several cousins.
This is when we took the kids to the Circus when it came in town. Elise definitely felt the vibrations of all of the activity, music, and noise!
Chris and Elise at the bottom of the rocks and caves at Robbers Cave. He got to climb it the next year!
One summer, we took Elise to Six Flags with my mom and step-dad. She did very well, but obviously didn’t go on any rides. Luckily, she didn’t know what she was missing out on.
A trip to the Houston Space Center.
It seems like Houston is about as far as we will go with her these days!
Elise has been going to Lane’s soccer, baseball, and basketball practices and games since she was 1-year-old. When she acts up it doesn’t matter. Everyone is yelling and running around anyway!
Elise at Lane’s graduation with the rest of the family. She didn’t make a peep, which is always a miracle!!!
I’m no fool! When it comes to getting candy, I will take Elise up to houses with Lane and Ty every year, whether she can eat it or not!
Me skating with Elise. She really enjoyed it, so we will be doing this again very soon.
Even GiGi got in on it! Actually, she used Elise’s chair as a sort of “walker” for skating. She is 60 after all...
Ty tried to skate for a bit, but had to quit. The skates just took over his little legs and feet.
We had a blast, and best of all, it looks like Elise enjoyed herself, too!