I know I haven’t written in a long time and I am not sure what my excuse is this time so I won’t insult your intelligence with one. As some of you may know, I am in the process of separating from my husband by my own decision. There are days when I feel like the most selfish woman in the world. There are other days when I feel like I can breathe. And then there are days like today- when I feel everything at once.
There was a post that Sisters by Heart posted today about medical children and the effect they have on how you look at your spouse. I read part of it as I was on the T coming in to work. The author writes about how she viewed her husband differently after their child was diagnosed with an illness. How he was her source of strength, and their love grew stronger than ever. My experience started out the same way and then kind of went off on its own.
When the OB told us about Isabelle’s heart, I cried from a place inside of me I didn’t know existed. Chris was right there, holding my hand, and crying with me. We had no idea what this would mean for us or for our family. All we knew is that our baby was going to need life-saving surgery otherwise it wouldn’t survive. We didn’t even know what we were having and left the office holding each other as we made our way to the car.
The next day we went to Children’s and learned about Hypoplastic Left Heart Syndrome and what we could expect. The picture wasn’t as bleak as we had originally thought but I couldn’t find any joy in the pregnancy. I didn’t want to hear stories about babies born with holes in their heart and how all of sudden they didn’t need surgery and were FINE. I didn’t want to be called out for not wanting to hear those stories either. Yes, I was bitched out on FB because I was emotionally posting and trying to manage my feelings.
I wanted support from family. I wanted people to talk about it with us. I wanted to talk about it. I was in mourning for my happy normal pregnancy. I didn’t need to field questions about names, or if we wanted hand me down stuff brought over. I was alone with these feelings. I was alone feeling like no one understood how I felt. My husband didn’t understand the place I was in because he was dealing with his own stuff, but unlike the couple in the story, we didn’t meet back together in the end. I felt so confused, torn and had no idea how I was going to get through my pregnancy for the next 4 months. Then Sisters by Heart came into the picture and told me it was ok. It was ok to not want to give her a name right now. It was ok to have all these mixed feelings and to not have faith at times. It was ok to be sad and to mourn the pregnancy I wanted to have.
I think I would have lost my mind if it wasn’t for those moms who reached out to me.
I know Chris meant well, and he does in fact, mean well. Sometimes he hit the mark, but other times he didn’t. He handles things differently from me. I need to learn about everything that could possibly happen and he was on a need-to-know timeline. I asked the doctors questions, chatted with other heart moms and talked to a therapist about what was going on. He just talked to me. I needed my family to give me words of encouragement and support and his family passed along to him their encouragement that he neglected to tell me. He didn’t see it as being important to me while I harbored a huge resentment at his family for not saying one word to me about what we were going through. Not one word.
I tried sharing the care package we received from Sisters by Heart and update people on our appointments. We had a heart walk to raise money for the Children’s Heart Foundation. I was disappointed that people weren’t supportive at first. Pediatric cancer was a bigger cause than a niece’s heart condition that was fatal. Eventually we did get some support there and even had people walk with us which was nice. I felt better about the road we were on and that people weren’t pretending like her heart was going to magically grow the other half. We met other families whose children had CHDs. Once again we were together going in the same direction.
But it wouldn’t last. I would get more anxious as the date grew closer. I knew soon she wouldn’t be safe anymore and I relished every moment of those last few weeks. We got through labor and delivery, her first surgery and her recovery. I started to feel disconnected when we began our inpatient stays. My personality is such that I am aggressive when I think something isn’t going right. He is the opposite. I would ask questions. He figured if the doctors had concerns, they would tell him. Eventually I would text questions I would want him to ask during rounds so I could get answers even when I wasn’t at the hospital. Compromise saved the day.
But again, it didn’t last. I signed us up to be patient partners for the Boston Marathon Miles for Miracles event because of my love for running and to raise money for the hospital that saved Isabelle’s life. I was alone in my enthusiasm for this. As the fundraiser came closer people joined in the efforts and it all came together with the help of many people. I would have liked it if that enthusiasm was there from the beginning, instead of feeling isolated in my desire to do something different.
There are two families whose children are having major surgery today. People all over the Heartland are rallying for them and it is awesome to see and be part of. I think that has made me think about Isabelle’s upcoming Fontan surgery, and how I am going to deal with soon to be former inlaws. They will be there to support him but will I be able to be in the same room? Am I going to get glares and angry comments while waiting for surgical updates? I know I am projecting which is never a good plan.
Isabelle is turning two in one week. One week she will be one year on this earth longer than I thought so many months ago. We are having two separate celebrations- one on Saturday and he is doing his on Sunday. I am sad that we can’t be celebrating this incredible achievement together. My hope is eventually we can get through this separation and meet in the middle someday. Going back is not an option, but moving forward is. Unfortunately our partnership was missing some fundamentals that needed to be in place to weather the storm of having a sick child and getting through major differences in personalities. My heart knew I couldn’t stay and I was tired of constantly being at odds with everyone. And I mean EVERYONE.
Lots of stuff going on in this head. Stuff I can sort through during my training runs for the NYC marathon I am participating in for Miles for Miracles. This time I get to lace up for Izzie and the honor is all mine. These mixed emotions have fueled some miles and I am grateful I have a new sense of purpose. I know there are people out there who think I am the most selfish woman on the planet. They can think that if they want. I know what I have been feeling and how I feel now. That, and the love of my girls is all that matters to me.