I was not ready to give up. I was not ready for hospice. Caitlin was almost 3 years old and that alone was a miracle. Most children with this type of brain tumor would not have even made it to age two. She had come so far. She had fought so hard. Why would I not continue fighting for her? The Dr said there was a new chemo coming out that we could try that was made specifically to treat brain tumors. If she made it another month or two it would be available. Meanwhile he put her on a higher dose of steroids to help with her brain swelling.
The next few weeks were a blur, as a lot of this time passed. I would bring Caitlin in to the living room each morning and place her in her car seat so she could sit up and hear everyone. At this point she still had her eyes closed, but I knew she was in there. She could move, but just couldn’t hold herself up or open her eyes. She also had a feeding pump for nourishment.
Then one morning it happened. I had placed her in her seat in the living room and went about doing my things. I looked up and Caitlin’s eyes were open! I cried in excitement and amazement. I knew she was in there!
Caitlin made it to the next month and we put her on the new chemo therapy and hoped for another miracle. She was one of the first children to try it. Within the next year, she was approved by Make-A-Wish to go to Disney World even though she wasn’t technically old enough per the rules. We explained that as a family we would like to do this, while she was doing well, and have some good memories with her. They are wonderful people and what an amazing foundation!
The next Labor Day weekend we went to the coast again. We really didn’t think that Caitlin would be with us for the next trip, but here she was! She had slowly gotten back her strength and took her first steps for the second time in her life at the coast that year. She was so happy. Her strength taught me so much.
The next time we went in to see the doctor, Caitlin walked down the hall and her nurse started crying as she watched her walk on her own. No one thought she would accomplish what she had. She was stronger than that damn brain tumor!
The next year the new chemo kept the tumor from growing, but only for a year. I am so grateful for that extra year. I know she stuck around because she wasn’t ready to go and mom still needed her.
She had to go in for a surgery to replace the path of her shunt. Caitlin wasn’t the same afterwards. As she laid in her hospital bed, I just felt that we had done all we could. When the doctor came in I was in tears and told her I just wanted to take Caitlin home. She nodded and said, “Ok”. They had only done this surgery for palliative reasons. Everyone but her expected the worst.
The brain is a remarkable thing. I don’t think we realize it until it is damaged. Caitlin had gone through physical therapy, speech therapy, occupational therapy and had to endure Botox shots in her legs to relax them in order to wear two leg braces (they were totally cool and pink) She was legally blind. Another thing I knew nothing about. Legally blind did not mean she couldn’t see at all, but there was a scale of what was considered blind. Her life consisted of appointments almost everyday, yet she smiled and laughed most of the time. When it was chemo time she wasn’t strong enough for the backpack, so she would just let me know in her own way of communication that she wanted to move. This girl was amazing and I was lucky to be her mother.
A couple of days after Caitlin’s surgery she started tensing uncontrollably. It was like she was having a seizure, but it wouldn’t stop. They called it posturing. The doctor put her on morphine, which took a whole day to even start working. She would sleep the whole next day or two and then it would start again. This was horrible to watch and looked very painful.
We decided it was time for hospice. There were no more options and the tumor was not going anywhere. If you know about hospice, you will know that they only put people on it when it is determined they will not make it past 6 months. Well, as usual, Caitlin had other plans. Caitlin’s posturing stopped for the most part after a couple of months She looked like she had been working out since she was on steroids and tensing her muscles. She looked like a little body builder.
A year and a half later, Caitlin started sounding congested. The nurse listened to her lungs and said there was fluid in them. I wanted her put on antibiotics, but I think we all knew it wasn’t going to work. She had been on a feeding pump and the nurse said it would just make the fluid worse. It was so hard to turn off that machine. I was going to starve my child. I looked back and thought I had done something wrong. I had given her liquid morphine and she had choked. Was I at fault for this? I was so angry I went outside and had a little talk with God. I was so freakin pissed. I basically said, “Either heal her or take her! We can’t do this anymore! It isn’t fair to her!” So yeah, at that time I was not sure where my spirituality was or had gone or what I believed, but I knew I wasn’t in control and was mad at whoever the hell was.
I slept next to her in the living room and had some family and friends there as well. I couldn’t sleep because I just didn’t want her to be alone when she passed. Three days later I was in my bedroom looking up pictures to put together for Caitlin’s funeral. Friends went to church and took Caitlin’s little sister, Megan with them. My son, Spencer wanted to go play at the neighbors house to escape. Caitlin’s dad was asleep. The next thing I knew Spencer’s friend came in and said, “Spencer said that Caitlin isn’t breathing”. I jumped up and went in the living room and knew right away she was gone. I yelled for her dad, turned off the oxygen machine and just laid there next to her still warm body and wept. I wanted to be with her when she left, but she waited until everyone was out of the room. I still hate that to this day, but have had to accept it anyway.
Next were the calls. I called the nurse first of course. She called the other specialists that had come to visit and give her much needed care and love for the last year and a half. Then family and friends. It’s a blur. I had told the funeral home ahead of time that I didn’t want a hearse and I didn’t want men in black suits coming to get her. They arrived in a tan Suburban and dressed in pants and polo shirts.
This was the absolute worst moment of my life. I had to hand over my baby girl to strangers that would drive her away. I picked her up in her beautiful quilt and walked her out with them to the truck. One man was driving and the other in the passenger seat. He would hold her the whole way. The absolute respect they gave was amazing. I handed her to him and said she shouldn’t be riding in the front seat. A tiny little bit of humor in the end.
After the funeral I went to see her every single day for at least a week. When it rained I just wanted to cover her with an umbrella and I hated leaving her in the dark. I tell you these things because when a mother loses a child she doesn’t just stop being a mother. These are things you won’t see when you hear these stories. When you say, “Oh that is such a sad thing that happened” it doesn’t just stop there for the mother. When you go on living your life, she is still in a dark place being tortured every day, wondering when the pain will end. Wanting time to just go by quickly, so the pain will subside. Even when she can finally go a whole day without crying, there will be holidays like Christmas and there will be birthdays that will bring it all back to that very day.
I want to end this story on a positive note. Caitlin was a miracle even to those that didn’t believe in them. We were so lucky to have her smiling face in our lives for the 7 years that we did. She touched so many people in her short life here and I know that she will never be forgotten and will always be the “miracle” that shocked everyone, especially the doctors!