To say that I wasn’t jealous of my friends would be a lie. Looking at my other mom friends, everything about their life appeared to be so easy and fun! It seemed to me like the worse problems they had to deal with was how their child’s t-ball practice ran late or if their daughters dance recital was going to be on a Saturday and would conflict with that spend the night party. I wanted more than anything to find myself complaining about dirty baseball uniforms, sleep overs and conflicting activity schedules.
Why? There is nothing special about those things, right? Exactly! These were normal, everyday things and I wanted our family to be “normal” so badly.
There is a loss that you feel when you first hear that your child has any kind of health problem. I’ve said this before but when you are pregnant, those nine months are filled with anticipation but there are so many things that you just take for granted are going to happen. You just assume your child will say “mama” and “dada” when they are supposed to. You expect to be sitting at peewee games or dance recitals. You joke with your spouse about how terrifying you are gonna be when they start dating. These are milestones that you just expect to happen. When it begins to sink in that this parenthood gig isn’t going to go the way you always thought, there is a real sense of loss there. In those early years, I didn’t realize that I was grieving, but in my on again/off again depression, that’s exactly what I was doing. I was mourning. I was mourning the life I had dreamed of for Taylor. I was mourning the child I thought that Taylor was supposed to be. I was mourning the friends I had imagined would fill our home. I was mourning the close relationship I just knew I would have with my son. I was mourning the father-son bond between Taylor and Mike that would drive me nuts but make my heart full. What I was really mourning though was my expectations.
I was mourning my expectations.
Listening to other children who were Taylor’s age carrying on conversations while I was still trying to get Taylor to use his words to tell me simple things, would get me choked up on many occasions. So much so that sometimes I had to leave the room to pull myself together. Taylor had his good days and his bad days and it’s safe to say that the cycle was the same for me as well.
One day I received a phone call from a good friend of mine, Ginny. She was excited about something she had heard in class that day. She was studying Special Education and that afternoon they were discussing what it meant to be a parent of a child with special needs. Her professor read this poem to her class by Emily Perl Kingsley and Ginny couldn’t wait to share it with me.
Welcome to Holland
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!” you say. “What do you mean, Holland?” I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”
The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
I had never heard this analogy before but I thought it was perfect. Ginny was excited because she felt that NOW she could better understand our family situation. I didn’t write this poem down, my brain memorized it instantly and that’s saying a lot because I have terrible memorization skills. I remembered it almost word for word because it was MY truth and I grabbed onto it hard.
I thought this poem expressed how I felt during this time so beautifully. It was so hard for me to explain how much I loved Taylor for who he was, yet how sad I was because we didn’t have the “Normal stuff”. Normal stuff like playing ball with his dad and having t-ball practice with the other four-year-old boys. “Normal stuff” like having a friend that he wanted to see all the time. We didn’t have play dates unless I was visiting a friend that just happened to have a son his age. I wasn’t hearing the cute phrases from him that my other mom friends would share with me about their children.
I wanted Taylor to “fit in” so badly. I admit part of that was pure selfishness because I wanted to “fit in” too. I wanted the ball sticker with his name on it stuck proudly on my back windshield. I wanted to fill my afternoons taking him to practices and games like everyone else seemed to be doing. I was on the constant lookout for activities that Taylor could do. When Taylor was four, I signed him up for gymnastics. He loved to climb and tumble and I just thought this would be perfect for him. I was so excited for him and I couldn’t wait for his first class.
The first day was a disaster! The gym was set up so that the children were in one big room and the parents sat in another room where we could watch our kids through a glass window. After walking Taylor in, I went to sit in the room with the other parents. They all seemed so chill and relaxed. No one seemed worried that their child would escape out of the class. I noticed one mom was reading a book while another dad had a crossword puzzle out. I had just a minute to wonder if I would be able to relax a few minutes as well, when I glanced in the tumbling room. While all the children sat quietly and listened to instructions from their coach, Taylor was already up walking around the room, doing his own thing.
Not even ten minutes into class, the coach makes eye contact with me through the window and motioned for me to come in there. My stomach dropped and I felt my face grow hot.
When I walked into the room she tells me quietly, “I need you to stay in here. I can’t instruct my kids with Taylor running around.”
Her words felt like a stabbing pain. In just one sentence, Taylor was no longer one of her kids. I realize she probably wasn’t even aware of how she said it but of course, she was right. Taylor was a disruption to her class and once again we were the odd ones out. I had to sit in every class with him over the next 5 weeks. I ended up acting as his own personal coach, never mind that I didn’t know a thing about gymnastics. I tried to listen carefully to the coach’s directions while simultaneously keeping Taylor from running around the room.
It was terrible! Taylor didn’t listen to me any better than he listened to the coach. There were just too many distractions in that room. To many fun things for him to explore. There were rules to follow but all he saw were a bunch of mats that he could climb on and jump and tumble. I was always exhausted, sweating and close to tears by the end of the 30 minute class with Taylor having learned absolutely nothing from the gymnastics coach.
Why were we even doing this?!
Because, I wanted him to be a “normal” kid doing the “normal” things.
The moment that finally did me in was during what would be his last class in gymnastics. We were all sitting down along the wall in row. Can you picture this? Giant me, sitting criss-cross applesauce, lined up on the wall with ten little four-year olds. I was holding Taylor very tightly in my lap with both arms wrapped around him so that he wouldn’t jump up and run off trying to make myself as unnoticeable to the other kids as possible. I was still trying so hard to make this work. I wanted so badly for this to be his thing. Taylor was squirming. He didn’t like to sit still for any length of time and was ready to get up and play. It was only 5 minutes into class and I was already pouring sweat from the exertion of trying to keep Taylor in my lap. Sitting next to us was the most adorable little girl. She looked at Taylor and then looked at me and said, “He doesn’t listen very well.”
I looked at her and said, “No baby, he doesn’t but he’s trying.” I spent the next twenty-five minutes fighting back tears. The whole way home, I just sobbed quietly, making sure Taylor couldn’t see me cry. I wasn’t crying because she said that to me, I was crying because she COULD say that and Taylor couldn’t. I was crying because I felt like a failure as a mom. I was crying because Taylor DIDN’T listen very well. I was crying because I couldn’t sit in the observation room with all the other parents.
I was crying because I was in Holland and they were in Italy.
I was mourning the loss of that life I had planned out in my head.
I want to tell you it’s okay to mourn. If you are going through these very same feelings right now or have in the past, I promise you that it’s okay. It doesn’t mean that you are a bad mom or dad, it means you are human. If the sadness becomes all consuming and you find yourself unable to find joy in anything, that is when you most likely need to take a step back and talk to someone about it.
There is nothing “normal” about my life. It took me some time to get to the point in my journey where I can honestly say and I love it this way. I love who my boys are. I love who my family is and what we have accomplished together. I love the person Taylor made me to be and I love that Taylor is so much more than “normal”.
My hope for you is that you will realize much sooner than I did that “normal” is just plain boring. I am so happy our life is not the “normal” I had imagined all those years ago and that Taylor isn’t the ordinary boy I had expected.
No, Taylor is not ordinary at all. He is extraordinary!