One Year. One very LONG year. Tomorrow, April 1st, it will be 1 year since our beautiful Alexander took his last breath as we held him in our arms. Just hours earlier we had such hope. He had made it through the 16 hour surgery, they had removed a large amount of the tumor. We had hopes of more treatments, him getting well, growing up and being a “normal” little boy. Only a few hours after his return from the OR, he started to decline. They tried in many different ways to save him. They tried so very hard. We were in the room for most of it, so we could hear them working on Alexander doing everything in their powers to help him. But it soon became clear to us, that there was no hope for any kind of recovery. We made the decision to turn off the machine that was helping him breath and to hold him in our arms one last time. We said his good night prayers with him one last time, blew bubbles for him, and he went to Heaven. Both Nana and Oma were there. They took turns holding him, saying their goodbyes.
It was strange for us not to be at “Our” hospital. We didn’t know these doctors and nurses, and they didn’t know us. However, they were still wonderful. They gave us all the time we needed. There was no rush to leave him. They brought us a memory box, and some paper to make hand and foot prints of him which we did. We spent some time with him, and then decided it was time to say goodbye and leave him. That was one of the hardest things I ever had to do. I left a picture of our little family with him.
It was so very strange to be leaving the hospital without him. When Richard pulled up the car, he had a bit of a smile on his face. I asked him what was up. Earlier in the week, he had lost a book. The lady that was taking the money for the garage was reading HIS book (he figured he must have left it at the counter earlier in the week). It was from a series of “The Nobel Dead”. He said “I think Alexander helped me to find this book”
The next days that followed were really a blur. We did what we had to do to plan the funeral. How do you plan a funeral for a child? How do you talk about someone that only had lived for 21 months? We did manage to do it, and I think we did a very good job. In his short little life, Alexander touched many lives. The doctors, nurses, other staff, and all that followed his Carepage. Through his Carepage, I have even met some other neruoblastoma families, that some how came across my page! I now follow their journeys. Sadly though, many of them have also had to say goodbye to their beautiful children.
The day of the funeral, we were saying our final goodbyes to him. We asked them to help us open up the bottom of the casket, so that we could put his special socks that Oma had made for him on, and put a few more things in the casket with him. We got a little laugh from this. We knew this casket could only be shown open “half way”. Well, the reason for that is because the other side of the casket is PINK! So Alexander is in touch with his feminine side for all eternity! They had also left on his name band from the hospital. We wondered if that was perhaps, so they could “scan” it when he arrived in Heaven and make sure he was who he said he was? A little bit of laughter on this very sad day.
The Funeral itself was a bit of a blur. We did think to have someone record it, so we have that to go back to and listen. The music done by one of my friends was just beautiful, and the sermon by my good friend Fr. Paul, was wonderful as well. At the cemetery, we were told there was about 110 people there! We handed out bubbles for everyone to blow. I wish we had thought to ask someone to take a video or picture of that! Since we were in the front, we didn’t get to really experience it all, but I was told it was beautiful with the thousands of bubbles being sent up to heaven for Alexander to pop! We had a wonderful reception afterwards, with so many friends and families. But, as the day wore on, all I wanted to do was to go home and go to bed and sleep forever.
The next days and weeks ahead were very difficult for us. Richard went back to work, but I had nothing. Nothing but a silent house to sit and cry in.
Both Mothers Day and Fathers Day came and went without much fanfare. Last year we were in the Hospital for both days. This year it was very hard to “feel” like a parent when your child is in Heaven.
In July, We had a wonderful vacation to California – Alexander was with us in many ways during that trip. (see post from October) https://thecookiegal.wordpress.com/2011/10/01/dear-alexander/
When we came back from California, I decided to go back to work. I stayed at one job for a couple of months, then moved on to another one. It was soon after I started that job that I found out I was pregnant again! We had trouble getting pregnant with Alexander and even needed some “help” from modern medicine. We never thought I would get pregnant as quickly as I did! But, yet, there I was pregnant with a new job. And then the nausea and morning sickness started! I was working as a visiting nurse – driving around all day, going in and out of peoples homes was not easy with the nausea! I also realized I just didn’t like the job, so I gave my notice. I needed to focus on being pregnant for a while, and just “be”. I am also not sure if I even WANT to be a nurse any more. But, yet, I don’t know what I want to do with my life. Part of me would like to be a parent advocate of some kind, but part of me wants to run far far away from anything in the medical field.
Expecting this new baby has been both exciting and scary. Scary, because what if this child has cancer too?? I am sure we will always worry about that. Although, I have been recently saying, either we will freak out at every little sniffle and cough, or go the opposite direction! I can see us sitting in the ER with the kid having a broken arm or something, and being so calm, that the staff wants to call DSS because we are just TOO calm for the situation! We will be using the same room Alexander had for the new baby. We only have one other room in the house, and it would be a lot of work to switch everything around! Plus, that room has trees painted on the way, and is just perfect for a child. We have started to go through some of the things in the room. It wasn’t too hard really. One thing I am not looking forward too is taking down the “Alexander John’s Room” from his door. That is going to be difficult. But, I will take a picture of it and put it in our memory box with many other things.
A word that came up recently in one of my support groups was “cheated”. I feel “cheated” out of a long life with Alexander. I feel cheated, that he never walked or talked, or even really ATE. He never said Mommy and Daddy, I never got to chase him around the house, there are so many things he never got to do. I was recently reading another blog, and the topic was “Blessed vs. Lucky”, with the focus being on “Blessed” I wrote a reply, and said how I disagreed with the topic. Alexander was very UNLUCKY! He got on of the deadliest kinds of childhood cancer, and despite being the “right” age, he never reached remission and he died. Many of his friends have beaten their cancer, and lived. They are very lucky. Can I say they are blessed? If so, does that mean Alexander and all the other children that die from their cancer are NOT blessed?
One person wrote a reply to my response, and put a different twist on it. He suggested, that I look at the time we DID have with Alexander as a Blessing. Even though he was sick, and did die, we were BLESSED to have him for 21 months (this person lost his daughter at 28 DAYS old) When I looked at it from this perspective, I felt a lot better. While, I will miss all the things I will never get to do with Alexander, I am very grateful for all that we DID have with him. Even though he spent more time IN the hospital than OUT of the hospital, many of his days were filled with laughter and smiles. He was such a trooper during his treatments. There were things he did not like, but they X-ray department was always very impressed by how well he did. There were times when he had to sit on a little block and we had to hold his hands in the air so they could get an x-ray. He usually did not cry, or fight us, he just did want he had to do. He was a wonderful boy. For the most part he let the nurses do what they needed to do to take care of him. EXCEPT for his blood pressure!!! He would always move just when they were ABOUT to hear it! He also did not like having his temperature taken under his arm – you would think they were sticking him with a needle sometimes the way he fussed! It was kind of humorous really.
So, yes, while I do feel cheated in many ways, I know how blessed and lucky we were to have such a wonderful boy in our lives! He was the happiest kid I knew despite all that he went through! We enjoyed every day and every moment we had with our boy. Even though so much of that time was spent IN the hospital, we still found a way to make it special. We took him on Wagon Rides, blew him bubbles, made him smile. We tried to treat him like a “normal” boy, which is hard to do when you are covering him up with plastic wrap just to take a bath! But, we did our best. He rolled with the punches. Some times, he would be throwing up one minute then reaching for his toys the next! He was always making us smile and laugh too.
Some times I do wish I held him for one more moment – but would one moment be enough? I don’t think so – I couldn’t hold him forever, I had to let him go. But really, I do not regret one moment we had one with him, even though all the yucky times. If God had said to me, I am going to give you a child, but take him back to me 21 months later, I would have still said YES, send him to me!! He was a wonderful son, and I am glad that we had him in our lives for those 21 months. He was a joy to those he encountered, and I hope and pray that people will remember him, and bring the joy that he had to others.
So, tomorrow, please remember the JOY – remember the Oreos, the Popcorn, the BUBBLES! Send him up some Bubbles today, and any day you want to bring joy to the world. Keep the bubbles in your car – blow them out the window when you are in traffic or at a red light. Watch the reactions, the smiles, you are getting, and know you are spread the love of Alexander.
First Oreo Cookie
All Done!
Birthday Oreo
Why Eat Cake when I can have a Yummy Oreoe?
Sorry, this is MY Oreo!!! None for you!
thecookiegal 
Beautifully said. I will be thinking of all of you, and just might eat some popcorn, oreos and blow bubbles in memory of the happy little boy I never had the pleasure to meet. Hugs, Terry Stone
PS- I still have those bubbles at the counter you brought me. I’ll blow some around the shop tomorrow and try to capture it a picture for you.
I remember you coming over with Alexander and singing with him and how happy he was….before he was sick……you are such a great mom Nancy, you have such a unique perspective on parenting because of your suffering, I am grateful for your friendship and Alexander’s life that you shared with all of us. You will be in our prayers and close in our hearts, we will be blowing bubbles and eating popcorn.
I have two favorite memories of Alexander.
One is when Erin & I stopped in to see him when Erin was at the hospital for a doctor appointment. After our visit we when to say goodbye to Alexander I said “Wait- I want to see one more smile”. I picked up his toy camera & pointed it at him and he broke into a big smile for the camera. I smiled all the way down the hall at how he smiled just because I aimed a camera at him.
The other memory is when you came to our house to visit. I started pretending to smell his feet and then choke at the smell. He laughed that beautiful laugh that I still hear each time I think of him.
I pray you and Richard have a week filled with wonderful memories of your precious son.
Cathy- Erin’s Mom