Note:  I started writing this post in 2018.  With the care my boy needed, I was unable to finish it so I did today.

 

Some days are better than others.  I am a Grandmother, a Mom, a nurse, a comforter, an advocate and somewhere in all that I still have to be an individual.  Pffft.  There isn't any time for me. Hasn't been for a while.

In August of 2017, my 8 year old was diagnosed with AML:  Acute Myeloid Leukemia which is extremely aggressive and rare in children.  There aren't a lot of treatment options on a pediatric level because this normally occurs in adults.  Go figure.  My kid has to get the hard one to treat.  When he was diagnosed we almost lost him - he got septic and ended up in the PICU.  I'm not going to go into detail because I have another series of posts entitled AML: Living with Leukemia.  I don't have a lot of time on my hands but I post to that segment of my blog whenever  I have the chance.  It's our story and our journey.

The first year was the standard treatment, four rounds of chemo consisting of one month in the hospital for each round of treatment.  In December he was considered in remission so I was hopeful we had really taken care of it.  Nope.  In April of 18 his leukemia came back with a vengeance. It wasn't responding to chemo, our treatment options were dwindling and we needed to get him to Boston for a bone marrow transplant.  In order to do that the disease had to be less than 2%.  We never got to that point, but his Oncologist pleaded his case and Boston accepted him with 5% disease.   Transplant was a success even though the transplant doctor told us that he would probably die there.  The new cells grafted in about 10 days and within a month we were home.  Unfortunately, again, he relapsed and this time it was the last.

Everyone knows that each time cancer relapses its harder  to get into remission.  Try as we might it didn't happen.  While he was a fighter against the cancer, his immunodeficiency made it impossible for him to fight the fungal pneumonia he got.   5 months after his cancer relapsed again, he gained his angel wings. He was unable to fight the pneumonia and it encompassed the entirety of his lungs.  He took his last breath in my arms on September 15, 2019.

Being a cancer mom is the most God awful thing in the world. Especially when the disease claims the life of a 10 year old little boy.  A little boy so full of life, so full of spit and vinegar, so full of fight, only to be taken down by pneumonia that his body couldn't fight because his immune system was compromised from all the chemo.  I wouldn't wish this on any parent. Ever.

Now, I find myself having more bad days than good.  I find my days full of heartache, tears and emptiness.  My child was my purpose, my best friend and now he is gone.  Will I ever find a new purpose?  I really don't know.  All I know right now is that the direction of my life will be uncertain for a very, very long time.

Gotta love him.....

Another Axel tale: This morning, i was attempting to "catch" him to get his shoes on so that we can go to Miss Judy's (Daycare). Well, apparently when i say come here, it clearly means run in the opposite direction as fast as you can. 
I managed to catch him, and told him "we need to get your shoes on so we can go. I need you to be my "best helper." " Struggling with me the whole time i am trying to get his shoes on, i finally manage to accomplish the task. He gets off my lap and i tell him - "you need to stop being so fresh to me in the morning. I need you to be my best helper so I can go to work and you can go to Miss Judy's." He turns around to me, puts his hands on his hips and clearly states: "Well Moma, thats not the way I see it."
I couldn't really say too much after that - i was trying too hard not to laugh.

I never imagined i would do it again.......

Wow. Here i am, two children - 20 and 22 and I have a 19 month old in the house. I'm 42 and my husband is 45. Never in this lifetime did we imagine that we would be raising a baby at our age. Even though it has been a year, it is still "sinking in".

Let me tell you the story........

My husband and I like to snowmobile, go on the boat, 4-wheeling, etc. Well, up until June of 2008, we had my son Erik in the house. He has Aspergers Syndrome which is high functioning Autism. He really took a toll on us because all his disability is social, daily living skills, etc. For example, If I did not tell him to shower every morning, he would not because his brain does not process the "necessity" to shower. He is 6' 3", about 280lbs but wouldn't hurt a fly. He is just a gentle giant plain and simple.

Well, when i divorced his father, my oldest son went to live with my ex and Erik stayed with me. (thats a totally different story for another day). Always asking to go live with "daddy", i told him that he could not until he graduated from high school. Well the day came and i certainly couldn't go back on my word so July 1st, he went to live with his father.

Although we didn't like the idea of Erik living with his father (he doesn't know how to assist an Autistic person, nor does he want to make the time), we were liking the fact that we could come and go as we please. All we had to worry about now was who was going to take care of our pets if we left them home. (They are our kids so they pretty much go everywhere with us unless we have to fly somewhere)

Then, on May 9th i think it was, my grandson, then 6 months old, became part of our lives. No more coming and going as we pleased. No more "its all about us now". We had this little person in our lives that depended on us for his very survival....whether we liked it or not, we were raising a baby.

that in itself is a long story. One that i would rathar not get into for personal reasons. Lets just say that my son and his wife were total flipping morons, were only thinking of themselves, got into a bit of trouble and were not able to take care of their son. Well, to keep him out of state custody, we stepped in.

BOY did our lives change. Now i know why they give children to young people lol. Its been a long time since i was changing diapers, buying baby food, soothing a tooth-cutting baby. Took me a little bit but i got back into the swing of things.

Poor little thing. When he was brought to us at 6 months old, he was just so confused. My heart broke when i saw his eyes. Its a good thing i was there not too long ago - he smiled when he saw me so i know that he recognized me. good thing because i would hate to think what would have happened had he not. Just the dazed look in his eyes - after all, the poor kid was taken from his mommy and daddy, brought to me by my stepmother (whom he had only seen once). Yanked from his stability and didn't know what the hell was going on.

It took quite a while for him to look as though he was ok. After all, i wasn't his mommy. I don't care what anyone says, a baby knows who its mother is. I would give Jennifer updates on him and I really tried to visit them as much as i could with the baby - it was hard though. They lived in Virginia and i was in CT. We were talking about a 9 hour drive, one way. It wasn't something that i could do too often unfortunately.

At this point he is a very well adjusted little boy. He is now a year and a half, starting to talk, climbing all over everything like a little monkey, eats like a little piggy and is just a super happy kid. (despite going through the terrible twos and becoming a beast child :) )We try to take videos and pictures when we can so that my son and his wife will have some type of memories, since they are missing out on alot. I know its not the same, but i also know that they will appreciate anything of that nature when it comes to their son.

Do I have any regrets? Only that my son and his wife were stupid enough to get themselves into that type of situation to begin with, having a small child to think about.

How long will we have him? Not sure. Obviously the kids want him back as quickly as possible. They did give us custody of him as they cannot support him right now, but we all agreed that when the time came, we would reverse the custody and give it back to them. When is that going to happen?

Not sure. My grandson doesnt really know his parents. He is "familiar" enough with them that as long as my husband and I are there, he will play with them and sit with them, etc. If we leave, thats when he gets nervous and starts looking for us.

I know that it is a difficult situation for them. I can't even IMAGINE what they feel not having their son with them. All i know, (and they certainly don't want to hear it) is that they need to focus on getting THEIR lives straightened out. If they aren't right, Their son will not be right with them. We are fully prepared to be in this for the long haul. This little guy is the most important thing right now.

I do have to say that he has been a blessing. We are so glad that we were there to help the kids. They are trying to get their lives back in order, and we are raising their son and hoping that one day, they will be in a position to resume the role as his primary caregivers. They have a long way to go both in maturity and just their overall situation, but we are here to support them and help them the whole way.