When it is...... what it is.....

So we are 3 weeks and 3 days out from Cam's open heart surgery. Three weeks. Looking back I'm still unsure as to how we got here. I know that by God's grace alone is how I'm still standing. I know that we have so much to be grateful for, and trust me we are so very grateful, but I am so weary. I feel like I still can't breath. Like the air in the room is sufficient, but there isn't enough to take a nice deep breath. Why do I feel this way you ask? I don't really know.  Honestly, I have nothing but praises to report as far as Cameron is concerned. We had a follow up with his cardiologist last Tuesday, and he said Cameron looks good. We will need to go back for an echo and another exam in about two weeks, but other than that he thought Cameron had once again kicked heart surgeries ass! I am in awe of my child. He hasn't skipped a beat, and here I am still struggling to move on. I'll get there. I'll find my big girl panties, and I'll put them on. I'll regain my footing. I just wish I never had to loose it again because of Apert Syndrome. Or anything really. I hate when life feels unsettling. And this could quite possibly be just something I am facing. Quite honestly I'm not in the best place in my life. I am not as happy as I want to be. I'm not as happy as I usually am. My life just isn't where I want it to be right now and I'm frustrated and sad about it. Like I said before, it will get better..... I'm an optimist, and even in times of pure sadness I am hopeful, but for now I'm sad. Just sad.

To add to my sadness, yesterday a mother I met while we were impatient at Boston Children's Hospital had to say goodbye to her precious little girl. Her daughter Kendall was no stranger to the hospital, she even had one of those rooms in the Cardiac ICU that loudly stated that she had been a long term visitor. She loved mini mouse and that was made clear by the abundance of mini decorations covering her room... it was a sea of pink in there and always a room I looked forward to walking by while Cam and I were walking around the unit. Kendall's mother Nicole and I met New Years Eve, she and I rang in the new year together over hospital food and conversation down in the lobby. We both must have screamed a look of exhaustion and in the midst of the universe and God working like it does we started talking to each other. She introduced me to a condition I hadn't heard of before called Pulmonary Vein Stenosis. This horrific disease, combined with her daughters other diagnosis of pulmonary hypertension, took her life two nights ago. How fucking unfair is that? She just died. She was fine(and by fine, I mean in the way of how kids with those diagnoses are) and then she wasn't. I remember her mom messaging me Thursday morning. She said Kendall had a fever and wasn't breathing great. I asked her if they thought she might have a virus, and she said she had no idea. She said she was just worried that Kendall was heading toward intubation, and that she was very scared and sad. I was in prayer for her all day that day. I was so sad for my friend. I was so sad for her daughter. I was so upset that I couldn't do a damn thing about any of it. I never thought however I would wake up the next morning to a message saying she had gone to Jesus. Just like that. What the FUCK? I am sad, but her mother, her incredibly brave, beautiful, strong mother, she is broken. She was robbed of her most precious possession, and I have no idea how deeply and horrifically debilitating that must be. All I know is that I prayed for Kendall and I prayed for her to have a better day, and that didn't happen. At least in the sense that I was praying for it to. I have seen her mother post multiple things on Facebook regarding her daughters death, and yesterday she posted that she was tired of people telling her that this was God's plan and that Kendall is in a better place. If you have said that to someone who has lost a child, don't ever say it again. And if you don't know what else to say, then say NOTHING!!!  If you read this Nicole, I love you. I am so grateful that I got to meet you and I'm so grateful we got to meet Kendall. You are one incredible mother, and Kendall was one incredible kid.


This isn't my first rodeo of watching a friend loose a child. Unfortunately one of the downsides of having a child with multiple medical issues, means meeting other kids with multiple medical issues and somewhere along the way you develop friendships with other parents and sometimes you or the other parent has to say goodbye to their child. It's the nature of the beast on this journey. So Paul and I have met several other families whose children have died. It's traumatizing each and every time. When a child in the Apert community dies, it's like the air is sucked out of the room, and no matter where you are you quickly find your child  and you helicopter parent them for the next several weeks, because you know that the child that just died, whether from a surgery complication, or because of an underlying health issue, that child could have been yours. In some weird way that child is yours. Last year a sweet precious baby girl died with Apert Syndrome. Our families had met in Boston when they traveled there for her hand surgery. We had a nice lunch with them and one other Apert family. There was no weirdness, we didn't have to search for conversation, because in a weird way we already knew each other. We are family. When another child with Apert Syndrome is born it's like adding another member to your family. We are connected, and it's truly beautiful. When this sweet angel passed away last year I cried for days. But I wasn't the only one. The sadness across our community was felt, and it was so heartbreaking. I remember sleeping in Cameron's room for a week just because I knew as sure as the sun shines that it could have been Cam. It could have been any of our kids. It's not fair. It's haunting. But it is what it is. It's something you face everyday when you have a medically complex child. It's always back there, on your mind, even though mostly buried reminding you that you are not immune. I realize it is that way for children with no medical issues as well, because we have no idea what the future holds, but when you are living every single day in a world where your child has a medical condition and good amount of your friends have children with medical needs it becomes a little more in your face! It's Life. It's life for us.

God was good to us in Boston. Prayers from friends, family, strangers, churches, they were truly felt. I remember the night before Cam's surgery I was having an unusually rough time. Breathing heavy, feeling a little out of control, and I reached out. I texted several of my close girlfriends and asked for some serious prayers for peace. I didn't know what else to do. I certainly wasn't praying and feeling anything differently and I knew I couldn't loose my cool, because I didn't want to be confined to an insane asylum on the day of my kids heart surgery, so I reached out. I asked this group of girls to pray for some serious peace. To reach out to God and beg him to help me breath. I was so confined to my fears that I just couldn't take in anything other than hate. The response was almost immediate. My beautiful friend Sharla claimed it. She told me that peace was coming my way. That I was about to feel it. That I would be feeling it. She saved me. Several other friends responded too. They let me know that they were praying and that peace would find me. They assured me that they loved me and they loved Cam and that everything was going to be ok. I wept. Then for two whole hours I fell asleep. I felt peace. God was good to us. Cameron's surgery was successful. His recovery was smooth. We were prayed for and we were loved. I don't know why that doesn't happen for everyone. I know it can't. I know that life isn't fair in that way, but I struggle to understand it all. Especially when it's one of our own, or a close friend. It's hard. Life is hard.

This is such a dark post, and I apologize for that. I swore that when I started to write this I would stay raw, I wanted to be authentic so that if there was a chance that someone read this that needed to hear what I felt, I wouldn't have held back. Sometimes that means dark and morbid. Sometimes life is dark and morbid. If it isn't for you, then consider yourself truly lucky! I am grateful that my life is my life. Sometimes I'm sad. Sometimes I am angry. Sometimes I struggle. Realistically I'm glad I understand my feelings  because I think that is what keeps my emotions from becoming an issue! I feel that I was by whatever measure meant for this life. I was beautifully created to withstand the trials and tribulations that I face. Sometimes I want a different life. Most times I'm so very, very grateful for Every. Single. Thing, that I am and that I have.

3 weeks! Soon the boys will be able to go back to school, and soon Spring will be here. I'm hoping for a more enthusiastic 4 week post! In the mean time please keep my friend Nicole in your prayers. Thank you for all of your love and support for our family. We sure are blessed to have all of you.

Love,
P, J, C, and M