Here We Go Again

To those of you that know me, or even if you don't personally know me, but have read my blog in the past, you know that my oldest son has a heart condition. Last April he had his third open heart surgery to replace both his aortic valve and his pulmonary valve. Actually, they took his pulmonary valve and moved it to the aortic valve position, and they replaced his pulmonary valve with a donor valve. While performing the procedure, his surgeon saw that his pulmonary valve was bicuspid (has two leaflets instead of the three that a normal valve would have). Normally at this point, in this particular procedure, you'd abandon that procedure and move forward with another plan. Cain's surgeon felt like the valve was in good enough condition to be able to use it successfully.

After the surgery, my son did incredibly well with the healing. He was home a few days later, walking around, and stopped taking his pain pills. We thought that things were great until he went for his follow up a few weeks later where they found that both valves were partially obstructed. When I say obstructed, I don't mean there was something in there obstructing it, but the valves had thickened significantly so the blood was not flowing through at 100%. Also, we were told that the arrhythmia's that they expected to go away after surgery were still present. They felt that with time, they'd still go away, once his heart had healed and it was used to having fully functioning valves. We were told we'd continue to follow up every few weeks to keep an eye on it.

A few appointments later and a few at home heart monitors later, they realized the arrhythmia's weren't going away and put him on a daily beta blocker. At the next appointment there was still no change so we increased the dosage, but even with that, there was no change. He was having an arrhythmia with every single heartbeat.

Two weeks ago, I got a call from his cardiologist and he told me that at this point, if we do nothing these arrhythmia's will cause long term damage. He said they have to do another heart cath and cardiac ablation. (Cardiac ablation works by scarring or destroying tissue in your heart that triggers an abnormal heart rhythm. In some cases, ablation prevents abnormal electrical signals from traveling through your heart and thus stops the arrhythmia.).

I have high hopes of this working for my son. I cannot adequately explain what it feels like to see him struggle to breathe after minimal physical exertion. Walking up a flight of stairs leaves my 11 year old gasping for breath like someone who has been smoking for years. He cannot keep up with other kids physically and he cannot play sports, the one thing in life he REALLY desires. If this doesn't work, I have no idea what the next step is. I asked them not to tell me because now I am just owning that this will be the procedure to get him back to a healthy kid. I can't think about what ifs at this moment.

Cain isn't scared at all. He never is. He always takes things as they come and he has a very positive outlook on life. He is such a trooper and although I HATE that he has to go through this and he has to miss out on activities due to his heart, I know that having a heart problem has taught him to be strong.

Rest in Peace, Mom 6/18/44 - 3/3/13

On March 3 my life changed forever. I lost my mom. The days since have been a blur. I've busied myself with tasks around the house, as if keeping busy would somehow speed up the grieving process, or make me forget, but it hasn't. There is no forgetting. There are moments where I don't cry, there have even been a few where I've laughed, but not a day goes by - hell not an hour goes by where I don't think about her. I think how I'll never hear her voice again. How I'll never see her smile again. How I'll never see the excitement in her eyes when I tell her something the kids have accomplished. I wonder if I was a good enough daughter, and I beat myself up that I didn't visit her more often, or how at times I'd be "too busy" to answer her call. I hate myself for taking her for granted, and at times I hate myself for wishing she was here, because in the end, I know she was miserable. She was in constant pain and was ready to die, yet she held on - I believe, for us. I feel selfish for wanting her to be in pain so I can have her here alive, rather than being at peace in heaven. I'm so sad my 4 year old will likely not remember her at all. I feel sorry for him. I feel sorry for my 11 year old because they were so close and I know he's struggling with the loss of her.

On March 3 when I arrived at the hospital, my mom was in the bed, and didn't seem to know I was there. She was mumbling and looking at the ceiling. I was screaming at her to look at me. I kept saying, "mom, do you know who I am", "mom, can you hear me", "mom, answer me". All I understood through her mumbling was "the kids". I told her, "mom the kids are good, do you understand". She didn't acknowledge me at all. Finally, when they told me that they needed to ask me to step out so they could intubate her, I grabbed her face and made her look me in the eyes and I yelled, "MOM, I LOVE YOU. I NEED YOU TO KNOW I LOVE YOU. I CAN'T GO UNTIL YOU TELL ME YOU LOVE ME". She looked me right in the eyes and said, "I LOVE YOU". That was the last thing my mother ever said.

My entire family was at the hospital and the boys were able to hold their Nana's hand and tell her they love her, they kissed her and when you'd yell at her to squeeze their hand, she would. I know she knew we were all with her, even though she was on a lot of medicine and on the ventilator. I am so very thankful that my mom held on so that the boys could say goodbye. I hate that their last memory will be her in the hospital, but I am glad she was able to squeeze their hand to let them know she loved them. It was shortly after the boys said goodbye that she passed. It was traumatic for me and my sisters to see. It was the absolute worst day of my life.

The second worse day was the day we buried her, Wednesday, March 6. It was overcast and gray outside. It was freezing. On the drive from the funeral home to the cemetery, we had the Quran playing in the car and I remember saying to Zouhair that it was a perfectly sad day to bury my mom. The weather was gloomy and cold and matched my mood perfectly. Arriving at the graveside service, and seeing my nephews and my son carry her casket to the grave was almost more than I could take. The funeral itself is a blur. I was just looking from the casket to my kids to my husband in between my sobs. At one point I had to keep myself from running away. Shortly after the funeral my 11 year old broke down in tears and I felt like I couldn't even properly comfort him at the moment because I too was hurting so much.


The days that followed were no easier. Today, three weeks later, I'm still in shock my mom is gone. I go through my phone and see the times we talked. I think about how regardless of the pain she was in, she'd call on birthdays and holidays. She thought first of her kids and her grandkids. My mom was not perfect, but looking back, she'd help anyone, she'd think first of others, and she generally always had a smile on her face. She loved her kids and grandkids and wanted nothing but our happiness. She lived to see us thrive. Her life was not fair. As long as I remember she had a hard time and the past ten years were pure hell due to her health. How she managed as long as she did, I will never know. She was stronger than I am, and she was a great example at how to keep on keeping on.

I choose to believe my mom is in heaven with her parents, her sister, and my brother. It's what keeps me going. I imagine her walking and dancing and being happy - for once, for herself. I don't know how heaven works exactly. I don't know if she sees us crying and suffering from missing her, but at times, I hope she doesn't. I want for her to be at peace and pain free. I want for her to be reunited with the son she lost so long ago.

The daily reminders will continue. I imagine I'm going to lose it on Mothers Day and on her birthday and a hundred times in between. Hell I've lost it at work, at Wal-Mart, driving in my car, at the dinner table, waking up in the middle of the night. It almost seems like its getting worse most of the time. I don't think I'll ever "get over" her death. I realize that at 32, I will likely live longer without a mom than I did with one. I hope that one day though, I can think of her and smile instead of crumbling.