This weekend Maleah graduated and it was one of the happiest days of my life and hers I would imagine. She beautifully and gracefully accepted her diploma as she closed that chapter of her life and looks forward to the next one.
As we presented her with her diploma and watched her walk down the aisle to the Star Wars theme I couldn’t help but notice all the people who were missing in the audience. I’m not just talking about people who couldn’t make it because of scheduling issues or travel reasons. I’m talking about the people who used to be in our daily lives. People who were at the center of our life. Our friends and family that at one point we couldn’t imagine living without. Yet, as life would have it, we do live without them. We’ve lived without some of them for years and years. Some of them left our lives suddenly but most left so gradually that I can’t really tell you when it happened.
Watching the slideshow that played at Maleah’s graduation and reliving so many memories reminded me over and over again of just how many people we live without these days. And I’m sorry for that. I’m so incredibly sorry.
I wish that my apology could turn back time and let us relive so many of those pivotal moments that led to this but I can’t. All I can do is apologize.
I can start by apologizing for not answering the phone when you called. I was probably already crying. I just couldn’t talk. Not to anyone. I didn’t think that anyone could possibly understand the loneliness and fear that I felt after Maleah was diagnosed. I was terrified for her health to fail. I was worried about how to pay for all her therapy. I was paralyzed by the thought of what would happen to her if something ever happened to me or Jim. I was lost in the world of therapy and cutting edge research and the fear that none of it might help her. I was driven to find new therapies and new methods to make her therapies more effective and fun if possible. I had a million thoughts on my mind every second of the day and I just couldn’t listen to anyone ask me how my day was going. My days were a blur of uncertainty and I knew I couldn’t talk about it without breaking down.
I can also apologize for not showing up. I blew off so many events that we were invited to. At first I just didn’t want to answer anymore questions. How was therapy going? How much progress was Maleah making in therapy? How do I even start to answer that? That’s not really even small talk. That’s an afternoon get together and cry talk. But I never invited you over for that talk and eventually you quit inviting me to your events as well.
Sometimes people ignored the entire situation though and that was almost worse. Someone would ask Maleah a question and she would stare blankly at them or she would mutter some sound when they expected a complete and logical answer. Normally, people would nervously glance from me to her and then smile and walk away. How do you think that made me feel? Invisible, unimportant and just plain awkward. And mad. Yes, it made me mad when someone ignored Maleah like she didn’t exist. Sometimes someone would act like everything was just fine or even make a comment that she didn’t need therapy and I would see red.
Yet, I never thought how it might have made you feel. I’m sure you didn’t know what to say or how to ask questions. I wish you had. I wish I had volunteered information. Maybe that would have started an important conversation. That might have made a world of difference in our relationships. I’m so sorry I couldn’t see past my own pain at the time to reach out to you.
I’m sorry for not making time to stop in and say hello. It’s hard to do that after you’ve watched you daughter struggle in therapy for hours every day week after week. Her therapists did amazing but it’s still hard to have all your daughter’s weaknesses pointed out every single day. But that’s how therapy works. They search and target your weaknesses so they can build on them.
In the beginning it’s just horrific though. Watching you child struggle and fail so many times that you lose count. As a parent, all you want is to do it for them. And you can’t. It doesn’t work that way. They have to fail. And fail again. And again. Until they learn to do it themselves. It is physically, mentally and emotionally exhausting for kids and parents. I just never had the energy left to stop in and chat. But I should have.
I should have shown up to more events. I really should have. It was just so hard to watch Maleah try to talk to everyone and no one understood. Very few people learned sign language to communicate with her which left her out completely. I just couldn’t watch that anymore. As Maleah learned to talk more most people had a hard time understanding her and she was still left out. I had interrupt for her and make sure people understood what she was trying to say. That didn’t leave me much time to talk to anyone so I didn’t bother. That was wrong of me. I should have made the effort for Maleah and myself. I should have made the effort to keep those relationships alive. But I didn’t.
I should’ve shown up to more birthday and holiday events. I hated the birthday parties though. I HATED them. Everyone else’s kids were talking and hitting all their developmental milestones. Mine wasn’t. My kid was in therapy 5 days a week and still not understood by others. My kid was a clinical presentation in multiple genetic conferences across the country but that isn’t the milestones I wanted her to be remembered for.
As time went on Maleah’s talking got better and better and she was understood by others but other kids played differently. Then the kids started leaving her out completely and she was content to just play by herself, but my heart couldn’t take it. Once I even had a Mom tell me that her son couldn’t play with Maleah anymore because her “garbled baby babbling” was going to rub off on him. That was the last time I took her to a playdate for years. I’m not kidding. I am human and I’m a mom who loves my kids more that life itself. I’m way to emotional sometimes, I will admit. But these things hurt me and made me mad as well. I got mad everytime and eventually I quit showing up for these events.
I still thought about your kids and your special events and I wished your kids well from the comforts of my home while I hugged my daughter and made sure that I played with her. I made sure that Maleah wasn’t left out. But that was selfish of me. I’m sure you didn’t understand why I never showed up and I should have explained that a long time ago. I’m sorry for that.
As Maleah got older and I pulled myself together a little more I should have reached out to more people. I should have apologized sooner. I should have tried to be apart of your lives more, but I didn’t. I didn’t know how to do it or what to say. So, I did nothing.
Then Maylin came along. Maylin didn’t have the delays and speech issues Maleah had dealt with. Her genetic testing was perfectly normally. Yet, I still struggled. Everything came so easy for Maylin and I was genuinely happy that it did. I didn’t want her to struggle the way Maleah had. But to be honest it was still so hard to watch Maylin talk circles around a sister 10 years older than her. I wanted Maylin to know all of you but I still wanted to protect Maleah. I struggled with how to handle that.
When Camden came along I just knew that we would be in therapy again. I can’t explain it, but I knew. Most people don’t know that Camden was diagnosed with mild cerebral palsy and uneven brain development at age 2 because we never told anyone.
Then he was diagnosed with Childhood Apraxia of Speech as well. I didn’t have the time or the energy to go through telling people and listening to them tell me not to worry all over again. “Everything will be fine”. God’s in control. The doctors don’t know anything. I just couldn’t listen to all those comments all over again. I had been there once before and knew that those comments were meant to be helpful. But they weren’t then and I didn’t find them helpful 14 years later either.
So, we tucked it away in our minds and went on with life. And I got mad about it every. single. day. Yet, most of you were already gone at that point so who was left for me to talk to except Jim and our therapists. So, I have become an expert at bottling it all up and pulling away from everyone.
Cam is now almost 5 and we are still in speech because most people can’t understand a word he says. And it breaks my heart all over again every day. It should be easier to know that he will make progress like Maleah did and in some ways it is. Then, some days someone will make fun of his apraxic talk or the fact that he can’t say something I feel the anger creep right back up. The anger over the injustice that my kids have to spend hours a week in therapy to learn to do something that comes natural for other kids. Then I would see a kid in a wheelchair and I would feel guilty for my anger. How can I be upset when some parents are dealing with medically fragile children or children with terminal diseases?
I’m sorry that I never called to tell anyone any of this. Most days I couldn’t put it into words. I’m more of a listener and it was just easier to listen to your problems and life stories so I could forget about mine for awhile. I didn’t realize that meant I was pushing you out of my life until it was too late.
I’m not sure how to go about apologizing or making up for all the lost years. I’m not even sure I can. Is it even possible? I don’t know. As usual I don’t have any answers. I just want you to know that I do miss having all of you in our lives. I miss the relationships we had and the love I felt for each of you. I miss the way that things used to be and even the way things could have been.
I’m sorry it took me so long to realize all of this, but know that you are all missed. And you will forever be in our fond memories.
