When Life Broke My Heart

For the first few designs, I'll be honest, they were mainly in relation to my story. I know that all of them are broad enough to encompass a million type of stories, but for me, I had my journey in mind in creating them.

It won't always be like this, but When Life was originally created as an outlet for me to release some of the things I had been holding inside.

When you think about having your heart broken, relationships of many kinds come to mind. The main one though is that between couples and spouses. I know that's what I first think about. And while I have had my fair share of heartbreak and heartache, that wasn't where my head was when creating this design.

When I had my miscarriage, I knew I wanted to get pregnant again as soon as I was able. I had a very difficult time, mentally that is, with losing a child and having a D&C. I was pregnant. I walked into a hospital around 6 in the morning, and I left a few hours later, not pregnant. There was something about that concept that I could not get out of my head. It was very haunting to me. There was a lot of well meaning, "it happened for a reason," "it just wasn't meant to be right now," and "God had different plans," sent my way. I appreciated it, but I didn't want to hear there was a reason unless they knew what it was because I sure didn't know. And how do they know what God's plans are for me? I don't even know that myself. I prayed for that child and God gave it to me. It was taken from me without my permission for reasons I nor anyone else knows. I'd just like to leave it at that. About 3-4 months later I found out I was pregnant with Jack.

My pregnancy with Jack itself was great. It was also one of the most stressful times of my life. I won't go into the all the details of this but here is the nitty gritty. I was exposed to a virus at work that could potentially cause harm to unborn children. Even though a lot of women are already exposed to this virus by the time they are of child bearing age, I just had to go and be one of the few that had not been. Our attending at the time recommended I go and get checked out. Sure enough, I tested positive for having been exposed to the virus. This automatically deemed me a high-risk pregnancy. If this wasn't stressful enough...all the labs, ultrasounds, and extra visits to the doctor, not to mention all the scary things I would find in Google; my management team began to make life absolute hell for me. I guess there is two sides to every story. Before I tell you about how they made my life hell, I'll tell you how I probably made theirs not so great.

I am by nature an advocate. I can't help it, it's in my blood. I take up for people. I can't stand to see people mistreated, and I use my voice and words, which are my greatest weapons, to let people know when I see things happening that aren't fair. My words, writings, and emails have gotten me into quite a bit of trouble. However, if I think something isn't right, you will hear from me. Moving on... Everyone apparently had drunk the same water. In other words, everyone seemed to be either pregnant or trying to get pregnant. My exposure was such a big deal to our attendings and to my OBGYN that I wanted to make sure that no other woman had to go through what I was experiencing. All the pokes and prods, all the statistics of whether Jack would be deaf or have any other disabilities, and all the tears. It was terrible. I told EVERYONE that remotely looked like they were pregnant to use caution, wear their protective gear if suspicious, and request another assignment if possible (if the patient was actively shedding the virus). This is where it got ugly.

In an unplanned (unplanned to me) meeting I was told I needed to be quiet and stop talking about my exposure. I was scaring people. I was making things hard on management when it came to making assignments (even though there were plenty of patients for me and the other pregnant women to take care of). I, and apparently all the doctors, including my own, was suddenly wrong and this virus could in no way harm an unborn baby. Here I was pregnant, alone, no representation, at the end of a long table being berated by senior management, human resources, and infection control. I left hysterical and had to go home early after that. I couldn't stop shaking. It was one of the most intimidating experiences I have ever been subjected to. Long story short, I left for maternity leave early with no intentions of coming back.

Jack was born happy, healthy, with perfect hearing, and was everything I imagined him to be. He was a beautiful baby.

I'm not sure what happened between the ages of 12-15 months. I lost him. He lost himself. He went from smiling, happy, and using his first words, to nothing. Blank stares from dead eyes. No smiles or laughs. Lots of crying and screaming. He no longer knew his name or mine I am pretty sure. But Autism and its hell of symptoms aren't what I am writing about today. I am writing about how Autism broke my heart and affected me on levels that I am still discovering.

Do you know how heartbreaking it is to grieve for a child that isn't dead?

A child that is very much alive and needs you as much as the air they breathe? Do you? Because I do. I went through every stage of grief. I was angry. I denied anything was wrong. I cried. I accepted. I slipped back into anger and guilt. I questioned God and thought of myself and Jack as victims. It was a dark time for me. Even though I was ever present in taking Jack to his appointments and making sure he got the best therapy I could afford, I felt like the worst mother in the world.

Why was this happening? Was it the exposure from work? They said he tested negative at birth. Was it the level of stress I was under during his pregnancy? Maybe? Either way all I felt was heartbreak and guilt.

I grieved for little things all of which no one really knows whether will happen or not. I mean they might, but I just really don't know. No one does.

I cried and grieved for him because I knew one day the birthday party invitations would stop coming. And they have. Kids are older, so I get it. He doesn't know or care, but I do for some stupid reason.

I grieved for dating, driving at 16, and college. For dates and dances. For marrying and having his own children. I grieved all the things that he may miss out on, never experience, or know exists as an option to those who are higher functioning. I feel like it sounds selfish, but that is what my heartbreak feels like. It's a selfish heartbreak.

It wasn't until a few years ago that I felt like I was finally able to shake the chains of that heartbreak and grief. It took me a long time to comprehend that Jack and our family will have a new normal. A different kind of normal. I don't think about all the things he may never be able to do. I just don't anymore. Each year is different. Each year I see progress in a lot of areas and very little in others. Jack has taught me you can't always be a planner.

He has taught me to save my heartache for something that is actually worth grieving over. He is very much here and present and doesn't need me thinking about 5-50 years from now. He has taught me there is absolutely nothing I can really plan for.

If you had asked me 5-6 years ago if I trusted him to jump off a diving board into 12 feet of water, I would have freaked out and said no way! If you had asked me if he could give a speech to his entire school and not clap and flap his hands, I would have said, "yeah I don't think that is a good idea." We all had our doubts when we put simple math word problems in his IEP. You see, he is doing these things and more. I am doing Jack a disservice by allowing his diagnosis to break me or my heart. It isn't fair to him for me to be constantly worrying about the future when he is trying so hard to show me what he can do in the present.

So, I move through the days thinking about what I can do to help him survive in a world that is heartbreaking. I am working to build a bigger house for my family and plan to put a place in it just in case Jack is here with us as he grows older. Then again, he may just up and surprise me and use it only when he comes to visit. Either way I am ready and so is my heart.

With much love,