I am sitting here thinking about our relationship and about how much I love you. And how I rarely see you. We joke that it’s because life is so busy. We are in our thirties and have jobs and babies. We are in that stage of life, I guess.
We are always saying that this is the month that we will finally find the time to get together. And when this month passes we will laugh via text and joke about how someday soon we will have more time. One of these days we will actually get together and do something. I’m not sure if that’s entirely true, though... at least not for me.
My life is different. As much as we want to pretend it’s not… it is. We are different. We are best friends. We are practically family. I love you and your babies. But we are different. And we dance around it like it’s not true. Like the differences aren’t the white elephant in the room.
My son has autism. He has a disability that has completely turned my life upside down. It’s been re-routed more times than I can count. And most days, friend, I am just hanging on for dear life.
I Am Sorry
I want to say I am sorry. I am sorry that I don’t make plans with you. I am sorry that I won’t commit to doing anything. And mostly, I am sorry that I always cancel. You know that cliche, ‘It’s not you it’s me.’ Well, this time it’s true. This is all on me.
This morning I woke up at 3:07 a.m. with Cooper. This is common in my world. Some days are worse than others. There are mornings where he kicks me. Mornings where I have to physically restrain his 60 pound body. Mornings where I am so close to giving up its scary. And there are mornings where I don’t know how I’ll make it through the day.
I could tell you all this but I don’t. I stopped trying a long time ago. And not just with you friend, but with everyone. My life is not believable. I sound like I am being dramatic. Or, I feel like I am whining. My world is so foreign and confusing that I don’t know how to explain it to anyone. And if I try, like the good friend that you are, you offer solutions. Or ideas. And I know they won’t work. So I stopped talking a long time ago.
Committing to Autism
And because of it I ignore your calls. I send them to voicemail because I physically don’t have the energy to answer. I watch your texts stack up. If we do connect I refuse to commit to plans. Or even worse, if we get something on the calendar, I always cancel. I want you to know I don’t mean too. My son is medically fragile. His needs change from day to day. I literally have no control.
I also cancel because every day in my world is extreme and different. I stopped trying to fit into the world a long time ago. I want you to know that in the beginning I really tried.
When Cooper was two we could still go on play dates or go to parks. I’d look and see you sitting and smiling with our friend group and enjoying your kids. I’d be covered in sweat, running, chasing and on the verge of tears. I’d overhear you all talking about potty training and preschool. I’d be thinking about day treatment and speech therapy and praying to God my kid didn’t hit anybody.
My world is now doctors offices, therapy appointments, and autism. You could say I gave up friend. I don’t look at it that way. I more so committed to my son. And in doing that I had to say goodbye to the rest of the world. Or at least it felt that way in the beginning. I didn’t know how to live in both worlds. It was too hard. Too sad. Too confusing.
I need you to know the weight of my child’s disability rests solely on my shoulders. It’s bigger than me. It’s bigger than our friendship. And it’s completely out of my control.
I Am Different
I know that I am not the friend you remember. I am different. I used to be so much fun. I was up for anything. I feel the strain between us too. God I feel it. I miss you. I miss us. But most of all I miss the friend that I used to be. Sometimes I can tell that you don’t know what to say around me. Maybe you think I’m fragile or sensitive. Or maybe you are worried to tell me about your kids successes because it will hurt me. Please don’t ever feel that way. I love your kids like my own. But, I’d be lying if I said it didn’t sting.
I sometimes try and figure out how this all happened. How did I turn into a different person. I like to think that it evolved slowly over time. But that is not true. It happened all at once.
It happened the day Cooper was born. Before that we were the same. College, wedding preparations, baby preparations. I was you. You were me. We were young. We were blissful. I was completely and utterly naïve to the hurricane force that was going to soon control my life.
The Autism Label
Then wham. I was different. I had a label. I was an autism parent. I immediately carried it on my shoulders. The roller coaster was more than I could handle at times.
The differences between us were glaringly obvious.
My baby didn’t sleep. Yours did. Mine never stopped crying. Your child cooed and smiled. Mine was chronically ill with ear infections and constipation. I never slept. You did. You’d mention how it was getting easier…this parenting thing. I would just smile.
I saw how you started to miss me. I saw how I started to slip away. Don’t think I didn’t know it was happening. I was part of every second of it. But I could pretend then. We could pretend. Our children were infants. And every mother we knew was exhausted. So this was going to be fine. We would sneak away for a glass of wine and laugh about motherhood. We’d talk about the vacations we would take when they were older.
No More Pretending
Then, the differences started to show in my child. He was no longer just a bad sleeper or a difficult baby. This was more serious. The differences between our children hung in the air when I was with you. Our babies would be sitting side by side on the floor and there was no pretending anymore.
We started talking about how my son was NOT autistic. We would trade stories of other mothers we knew who went through the same thing… and it turned out fine. They were fine. I was going to be fine. This was going to be fine. You’d find a blog post or a news article about a late talker and send it my way. We both agreed it wasn’t autism.
Then, suddenly, I had a diagnosis.
My life quickly became doctors, therapies and IEP’s. I couldn’t relate to you anymore. And you most definitely couldn’t relate to me. It was like I was in a movie. I watched myself turn invisible right before your eyes. I felt out-of-place. I felt irrelevant. But most of all I felt jealous. My child was different. Yours was not. Your child met milestones. Mine did not. Your child said his first word. Mine did not. Mine would scream and hit his head in frustration. Yours sang me a song. You potty trained your child in a month while I frantically searched for size 7 diapers.
And then I completely slipped away into this new world. I stopped calling. I withdrew. That is the blatant truth. We can dance around it. You can say that you are OK with Cooper. I hear it all the time from friends and family. I know you love him. We all do. But that’s the thing. It wasn’t you. It was me.
I didn’t know how to be a good friend anymore.
I know this would all be fine if we just came for a visit. But we can’t. And we don’t. The preparations for a visit to someone’s house are epic. Do you have a fence? Do you have WiFi? Pets? Do you care about messes? The list goes on. Snacks? Sippy cups? Milk? In a sense I still have a newborn. A 60 pound newborn that can do some serious damage.
And I believe it when you say that you love Cooper. You don’t mind the screaming and the pacing. But I do friend. I care. I care about parenting in front of you. I care that I can’t sit and talk to you because of Cooper. I care that I wake up at 3:15 am. I care that I got poop on your floor while changing my 6-year-old.
In the back of my mind I wonder how long you will hang on. When will it be too much?
I want you to know that I wake up every day happy with the best of intentions. I’m going to reach out to friends. I’m going to get back into the real world. And by the end of the day sometimes I can’t see straight. It takes all my strength to respond to a day old text message from you. I will go on Facebook and see that you signed your son up for t-ball. Or maybe it’s karate this time. I guess whatever activity a 6-year-old does these days.
I will feel the pain in my stomach. I am over here researching special needs strollers for children. I am trying to figure out how I am going to pay for it. And how I am going to be strong enough to bring it out in public for the first time. How do I find one that won’t stand out? Or make us look too different.
What you are doing isn’t wrong friend. It’s amazing. I am so happy for you. Your children are beautiful. You are beautiful.
I’m just not there. I need you to forgive me.
I am letting you off the hook friend. Autism isn’t your world. It is mine.
I want to thank you for standing by me. And I want to ask you to not give up on me. Your children are going to continue to grow and thrive. There are times where I think Cooper and I will be in the same exact spot.
Please remember us. We are trying so hard to fit into your world.
I want to promise you that I will come back. I believe this will get easier. One day, I will be me again. And we will be us again. Your kids will be grown. And I will still have Cooper living with me. But we will be fine. This will all be fine.