Messages for a Lifetime

There it is, the car that I always dreamed of buying but couldn’t afford. I’ve driven by this lot so many times in the past 2 years, but have never pulled in. Today, I pull in. Today, I inquire about the car. Today, I plan to test drive this car. The dark red shines in the sun light, as the dark window tint blocks seeing inside of it. As many times as I’ve dreamed of driving this car, owning this car, even just sitting in it, the reality of this happening was not likely.

As much as I am excited that I am going to be sitting in this car today, I realize that this is only happening due to a tragedy. I pull into the parking lot of the dealership and park my beat-up car in a parking spot. I put the car in park but can’t seem to turn the car off or get out. How do I go through with this? How do I enjoy myself after all that we’ve been through? How do I use this money on something so superficial?

Sitting in the parking lot, I start to cry, again. I know this is supposed to get easier, but when? This was one of his lasts wishes, for me to use this money to buy my dream car. He spoke about being beside me as I drive down the highway with the top down, feeling the breeze in my hair. Even though he wouldn’t, couldn’t be there in person, he would be there in spirit. This was his last wish and I can’t bring myself to turn the car off, to go into the dealership and inquire about the car that is now parked 10 feet from me.

I open my eyes to see his picture in the frame that hangs from my key chain. Those big blue eyes, curly hair and a smile that just keeps going. He is, was, the best thing that happened to me but now he’s gone. These past 10 months have gone by so fast but also so slow. I see him everywhere, I hear him when I shower, and there are times I can still smell him. I look at his picture and I smile as I wipe the tears from my face.

I’m not sure how much time has passed but there’s a knock on my window and I jump just enough that the sales person jumps as well. I open the door, as my window no longer rolls down, and she asks if there is something that she can help me with. I proceed to ask her if I can look at the red car and looks at me inquisitively. I’ve seen that look before, how is this lady going to be able to afford this. I’m used to it, as I’ve always lived paycheck to paycheck. But this past year changed that.

Last year is when he was diagnosed with Diffuse Intrinsic Pontine Glioma, DIPG for short. We were told the outlook was poor and he would likely have a few months to live. There would be lots of doctor appointments and hospitalizations, which all cost money that I didn’t have. As a single parent, I had to work, but who would take him to his appointments then? How could I let him go through this without being there 100% of the time? I am his mother; I am all he has. He is all I have; he is all I need.

As much as I didn’t want to believe the doctors, I know what DIPG was and time was of essence. I wanted no regrets, so that afternoon, I called my job and told them that I couldn’t go back due to my 8-year-old son being diagnosed with DIPG. The manager offered positive thoughts and noted he would pass along the information to the owner. I was a waitress in a chain restaurant and the reality is, it’s a business and their main goal is to make money. If I stayed, I would have to call out often and that would put pressure on my co-workers, and it wasn’t their fault what we’re going through. I hung up the phone and knew that within months, we would be homeless if I didn’t get some sort of help.

Later that day I got a call from the hospital and they went over programs that were available to help us. I was ecstatic to hear that they would be able to pay our rent for 6 months, so at least we wouldn’t be homeless. I asked about help with food and other resources. It was much easier to make an appointment with their social worker to fill out as many applications for help as we could, so that was set for next week.

Next on the list was informing extending family. His father. Do I tell his father? How would I even reach him. He has not seen our son in 5 years and he has no memory of him. I couldn’t decide in the moment what to do about that, so I called my family first and told them about the diagnosis and what this means. I made sure that this was quick, so I could spend the rest of the night with him, the little boy that meant the world to me.

I went into his room and he was laying in bed with his car blanket up to his chin. I could tell that he was crying but I didn’t mention it. I crawled in with him and asked if it was okay if I slept with him. He didn’t answer me but took my hand and wrapped my arm around his waist. I squeezed him to let him know that we were one, I wasn’t going anywhere. We fell asleep that way and, in the morning, he woke up first. He put his tiny little hand on my face and said, “mommy, today is going to be a great day because we have each other. Can we go to the zoo?”

My little angel was just told yesterday that he was going to die from brain cancer and he wants to go to the zoo? I wasn’t sure what to make of this but we went and had the best day. There was no talk of cancer, of dying, of the pain he felt. It was just him and I, enjoying the fresh air and looking at animals. That night we got home and he said he wanted to keep a journal of his life until he dies, something for me to remember him by. I told him that I would never, could never forget him but I loved this idea because we will live every day from tonight on with purpose and he can document that.

The next morning day I went to the store and bought him a small black notebook. We went home to have breakfast and as I was cooking his eggs, he wrote about going to the zoo the day before and what he wanted to do today. He told me that although he let me know what he wrote about today, he wanted to keep the rest of it a secret and once he died, then I could read it. How does an 8-year-old understand this? Is he doing this for me or him? Both of us? I’m not sure what to make of this but agree to his plan.

I tried to make each day an adventure for him, even the days we had to go to the hospital. Two months after he was diagnosed, I got a call from a number I didn’t recognize. It was his father. He had found out about his diagnosis on the news, as a friend was having a fundraiser to help us financially. I was worried he would be upset that I didn’t contact him, but then again, I didn’t have his number and after the first day, my focus was on my son and I didn’t put much energy into who else to contact. He apologized for not being there these past 5 years and asked what I thought would be best. Should he stay away or be a part of his life. He didn’t want to insult or cause more problems for anyone by coming back into his life after a terminal diagnosis.

I told our son that his father had contacted me, as he had a right to know. He said he wanted to speak to him. With the strength of an adult, he told his father that he appreciated the call but wanted the rest of his time to be with friends and family that have been there for him before the diagnosis. He thanked his father for the well wishes and when he hung up, he asked for ice cream.

We made it to Disney via Make A Wish Foundation, and had so many other great experiences before he passed. The week before he passed, I know his time was coming. As his mother, his parent, we had a bond that I didn’t need to hear a medical update to know that he was declining and he would leave this world, leave me. Before he started to lose his cognition, he told me that he wrote lots of messages to me in his little black book and once he died, he wanted me to use the book to remind myself to live, to be happy again. I told him that I would do my best but life would never be the same without him.

Here I sit in the car dealership parking lot, the salesperson looking at me with surprise that I was interested in a car that I looked like I could afford. I don’t let it bother me as I hold the little black book in my hand as I ask for a test drive. The book is on my lap as I drive, as I know he is here with me. When we get back to the dealership, I ask to fill out the forms to buy it in full. The salesperson is taken back but proceeds to take me inside to discuss the sale. She talks and talks, most I don’t know what she is saying, as I can hear, smell, and see my son sitting in the chair on the side of me. I open the book to the page where he wrote the following:

“Mom, once I’m gone, I want you to take the rest of the fundraiser money and buy that red car we have talked about. I want you to drive down the highway with the top down and feel the breeze in your hair. Know that I am sitting in the car with you, right by your side.”

Once the paperwork is complete, the only thing left to do is give her the check. I smile the biggest smile I have had since we got the DIPG diagnosis as I hand over the $20,000 check and know that as I walk out of this building today, my son and I will be driving down the highway in our red car, with the top down, feeling the breeze in our hair…. just my son and I, and my little black book that he wrote for me.