Normalizing the Not-So-Normal
One thing to know about the Heilman Household is – nothing is ever normal. We have a saying in our house “if it is going to happen to anyone, it is going to happen to a Heilman.” We aren’t the only ones who say that, in fact, our doctors are often known to say it as well. On multiple occasions, our pediatrician has said something along the lines of “well its rare, but you are a Heilman” or “that only happens one in a million but since you are a Heilman, let’s run that test.” You get the idea. We live an extra-ordinary life in this household. It can be scary and exhausting, but I work to keep things as fun and as normal as possible for my kids, despite our not-so-normal family circumstances. I normalize things so my kids can have a childhood. So, they have fun memories. Memories of long car rides (even if it is to and from the hospital) with family games and trivia. Memories of picnic lunches on a pirate ship, even if that ship is on the patio at the children’s hospital. Memories of movie
nights, with popcorn, pizza, snuggles, and an infusion pump running. When I talk to my teens about some of their favorite childhood memories, they mention these times, as well as trips to Legoland (Ben’s Make-A-Wish trip) and Holland to see the tulips (Neeley’s Make-A-Wish trip) and so much more. I guess all the work I have done to normalize has worked over the years for these kiddos, well and for John too 😉. Here are a couple stories that reinforce that concept and remind me of why I work so hard at normalizing our not-so-normal lives.
Benism: When Ben was 3, we were spending an exceptionally long day at All Children’s Hospital with 4-hour immunology appointments in the morning for all three Heil-Kiddos and a CT scan and lab work for Halle in the afternoon. I had bribed my littlest guy, Ben, with a special trip to the All Children’s Pirate ship after the morning appointments. One of the perks of visiting a children’s hospital, is there are several things geared towards making these trips fun. Ben got his 30 minutes climbing the ship and the girls, 6 and 9 at the time, joined in the “high seas” adventure on the patio. After running around on the ‘Pirate Deck,’ we took a quick trip by the gift shop, Neeley’s favorite spot, and then headed to the cafeteria for lunch, which was one of Halle’s favorite things to do. On these long days, I did my best to schedule in the fun. I had a few games planned during our lunch. We played a wicked few rounds of eye-spy, and then played States and Capitals trivia to quiz Halle for her test the following week. During this particular day, I knew we had a long afternoon ahead, so after lunch we rounded back to the ship to wear out Ben a bit more before Halle’s 2 o’clock series of tests. Ben was thrilled with this surprise extra visit. As we left the patio, he excitedly asked:
“Mom what were the hospitals like when you were a kid? Did they have pirate ships too?”
A pang of shock and sadness filled me in an instant. Here my little guy has only known hospitals and medical clinics his sweet, short life. He didn’t realize all the ‘normal’ things kids do for fun. It took a moment to pull myself together and then I knelt down next to him and said,
“Well buddy, mommy didn’t spend time in the hospital when I was a kid, so I don’t know what they were like.”
Ben didn’t skip a beat as he smiled back at me and asked, “well what did you do for fun then?”
And just like that the pang of sadness left me and off we skipped to the radiology department, quizzing Halle all along the way.
Johnism: I think we as parents normalize our kids’ lives (and our own) without even realizing we are doing that at times. I remember a couple of years ago, we were driving home from John’s parents’ house on Christmas day, and we were talking about bacon. Yes Bacon! On the drive,
John asked Ben, “hey where were we staying when we ordered a whole plate of bacon for our room service that one time.”
Ben laughed, “Dad, that would be the All Children’s Hospital Resort and Spa.”
John was shaking his head in disbelief, “What, NO! We ordered room service buddy and had them deliver us an entire plate of bacon. We must have been on vacation somewhere.”
Ben sighed, “Oh Dad….Don’t you remember, that was when I was in the hospital for a month in Kindergarten. You and mom would take turns staying with me. With mom, we would make forts out of my blankets or read books together. When you came, we would play video games and order plates of bacon and strawberries.”
“Oh yeah. Now that I think about that, I think you are right.”
“I know I am right, I was there!”
Yup, we normalize our lives so much so that we even confuse a hospital stay with a family vacation filled with room service! Well, let me clarify, John confuses plates of bacon and a hospital stay with a vacation. I think I would know the difference.
Why Do We Normalize the Not-So-Normal
So, why do we normalize the not-so-normal in our lives?
1. We don’t have a choice. This is OUR normal. This has been our life from day 1, when Halle was born into this world with a rare chromosome deletion, and that door to the medical world swung wide open for us. This became our reality. I have known nothing different the entire time I have raised my children. This is my normal. This is John’s normal. Parenthood has always had doctors’ appointment, therapy sessions, surgeries, infusions, lab work, prescription drop-offs/pick-ups and occasionally an experimental treatment for a rare condition. This is Neeley’s normal. This is Ben’s normal. This was Halle’s normal. We know nothing different.
2. To give our kids a childhood. We normalize our lives, especially when the kids were young because they deserve a childhood. They didn’t ask to have medical issues. They were born this way and they deserve to just be kids as often as possible. We turned physical, occupational, and speech therapy into play sessions. Aquatic therapy was Halle’s ‘swim lessons.’ Doctor’s appointment became family game time as we used waiting rooms as the back drop for Harry Potter trivia or name that tune. We put the kids in dance, and soccer. Hockey and swim. Basketball and gymnastics. They tried any sport they wanted and often excelled. Halle was a Girl Scout. We let her go camping and have sleepovers. We did what every ‘normal’ kid did, we just had to be a little creative sometimes.
3. In order to survive. We normalize our lives, to keep moving forward each day. We have lived may days in a state of crisis the past 21 years. Those early years especially, we would experience one emergency after another. The local fire department knew us well. 911 calls for a child having trouble breathing or having an anaphylaxis reaction to an infusion were a constant. If we didn’t normalize these events, to some extent, it would be hard to cope with the continual threat of what would happen next. I think I felt if I let my guard down and really evaluated how chaotic and medically complicated our lives were with our children, especially Halle, I wouldn’t be able to pull myself back together. That crisis mode, that chaos became my normal, so I could survive.
How Do We Normalize the Not-So-Normal
Games – Games and more Games. We are the family known for our games. That could be trivia games, any topic is fair game. Harry Potter trivia is often a favorite. Or we would play First Letter Last Letter, Categories, Name that Tune, and the old favorite, Eye Spy. We also had special games for our pediatrician’s office. Our pediatrician, Dr. Tappan, is special to my kiddos. Halle even named her favorite stuffed animal after him, Tappy the dog. We had two games we played at Tappan’s office. The first was, the kids would sneak out of their room and down the hall to see if they could catch a glimpse of Dr. T in his office in between patients. If he caught them spying, he would give them a look, they would squeal and run back to their room. He thought this was funny and on more than one occasion, he would walk around the entire office building so he could sneak up behind one of the Heilman kiddos and spy on them trying to spy on him. We would all get a good laugh when he would tap on their shoulder from behind and they would jump in surprise.
Another game we played in his office was “Guess the Time.” We would write down the time we got into the room on the white paper covering the exam table. Then each Heilman kiddo (and mom) would guess what time Dr. Tappan would come through the door. When he came through the door, it was common for one of us to jump up and down and scream – ‘I WON!’ – including me. We Heilman’s are a competitive bunch. But Dr. Tappan would have fun with the game himself. If I started dancing saying, ‘I Won’ – he would say “Oh I will be back in…” and he would look at the kids, Halle would hold up 2 fingers, “…in two minutes.” And he would do just that. Just to let Halle win and keep the game going. I think he and I, as adults, appreciated the fun and playfulness of these monotonous and sometimes heart-wrenching appointments. It allowed us all to focus on the joy of childhood. In fact, I was in with Neeley a few weeks ago, and Dr. T asked why we didn’t still play the “Time Game.” It was one of his favorites. So, what did we do? The next appointment we put our games back into action, even if she is 17! As a side note, I won that round!
Since my kids saw so many specialists, games for long car rids were the norm. Sometimes, I would be just too tired for interactive games where I had to participate, so I had a bag of car games (trivia cards, travel connect four, etc.) that the kids could play on their own or between themselves. I remember one car ride, I was stressed about the results we would be getting at the immunologist that day and I didn’t feel up to a trivia game, so I gave Halle cards with all the states, and their capitals, flowers, and bird information on them and told her to work on memorizing those on the way to infusion. During the 1-hour drive, Ben and Neeley played a quiet game together and Halle studied her cards. To my surprise, when we got to infusion – Halle handed me the deck and said “quiz me.” Not only had she memorized all the states and capitals but had also memorized the state birds and flowers too. She became quite famous for this in her 3rd grade class with Mrs. Mulvihill.
Games were so important – especially when they were young. They were a creative outlet for my kids. Games allowed them the excitement and fun of being a kid in the midst of the medical whirlwind that was their life at the time.
Games hold special meaning to our not-so-normal family. I remember Halle had a special request while she was in hospice. She asked that we all gather in her room each day and have family game night. Our family favorite at them time was Apples to Apples and let’s just say, we had a couple rounds of that game, that had us rolling with laughter – so much so that Halle fell out of bed and almost pulled out her IV. We had laughter and joy during the most difficult time in our lives, because we kept our hearts open to the fun we could offer our children and focused on the good in a seriously tragic time. And those are some memories I will treasure forever.
Another way we normalized the not-so-normal: Bag of toys, books, and movies for special circumstances. We had a bag of goodies just for doctor’s appointment and the long car rides to those visits. This gave the kids something to look forward to anytime we were heading to a long day of appointments. For them, it was time for their special games and time for our family to spend together. When Halle was young, I also had a special bag of toys and activities for Feeding and Speech therapy at home. She had a lot of fear around eating, as she had a history of choking. So, this special bag of toys gave her a positive association with the therapy she dreaded the most.
Another little way of normalizing was making a quick trip to Target. We were often known to stop by the Target off 4th street on the way to All Children’s for a monthly infusion or an appointment. I would let each of the kids pick out a little something in the dollar section or I would allot some extra time that day to walk the toy aisles. I would give them each an amount they could spend, and they loved the independence of picking out a toy or activity to keep them busy at the hospital. If they had a surgery or longer stay ahead of them, we would go by Build-A-Bear to create a special friend or stop in at Books-A-Million for some new reading material. Something to help them maintain their childhood while facing very grown up up experiences.
I recently asked Ben and Neeley what they remembered most about all those visits to All Children’s. They both started sharing stories of the fun things we did in the car and how I would let them stop and buy a new toy or book along the way. When I asked what they remembered about the hospital, they both said they couldn’t remember that part as much. Instead, they remember, Target trips, family game night, Harry Potter trivia, and Pirate ships and so much more. For them, they remember their childhood as a fun time with family. Normalizing the not-so-normal, allowed them to keep a sense of innocence to their childhood. Normalizing has allowed me to survive and has allowed them to thrive.