To All The PT,OT, And Caregivers

There is this horrible ripping apart of our families, friends, children, and spouses when our children are diagnosed with cancer. My son has brain cancer. He was 3 when he was diagnosed. I moved into the hospital and lived there for 6 weeks after my sons’ surgery.  From the PICU, then to the cancer ward. I was in such shock, I actually forgot I had another child at home. But, you see, it is a lot to digest when hospital language is thrown at us in a rapid pace. We are seeing a lot of people, but not a lot want to talk about anything that pulls the full experience together. At first, we had a lot of visitors that all wanted to help. But, I was so confused, I never knew what to ask for. My brain was completely submerged in cancer land.

But, we pull ourselves off the sofa in the room at 5:30 for a team of Dr.s that just throw more jargon at us. The hospital is an unforgiving place. We watch our bank accounts crater. A parent is susposed to be present at their childs bedside unless otherwise discussed with the nurse. If i needed a cup of coffee and breakfast, I had to pay for my own in the cafeteria. Parking is expensive, but they knock it to 4.00 if you get it validated. I would say it was about $30 a day to sit by our childrens bedside for 6 weeks. I will do the math for you. $1260 cash out of the pocket. Eventually the tide of people slowly ebbs away. This is where things get tricky.

By the time we were on the onco ward and doing rehab, I don’t think anyone was around. A few texts and visitors here and there. The only consistent people we saw were nurses, doctors, aides, pt, ot, and speech therapists. You are the glue holding us together. You are the people filling my inpatient days. You become the only source of adult conversation in our days. We look forward to our favorite therapists and support staff. It becomes like a psuedo replacement of normalcy. Just enough for us to feel human. We begin to feel like you are part of our family. We see you every day. You offer hope, encouragement, and conversation. When we get a different therapist when your off, it feels akward. But, we will take any adult conversation at that point about anything except cancer. You are the light of our days.

The shock when we actually get to leave is so lonely. We say goodbye. Goodbye shockingly feels like a funeral procession in our brains. Who is going to tell us how, what, when we need to change something for the better for our children. When I say funeral procession, you have no idea how real that feels to us.

Leaving the hospital setting after such a long time leaves us shell shocked. I remember it really seemed like insanity to take our child home when he was all broken and couldn’t do even the most basic things without help. Shell shocked is a damn good description. How can leaving all these people who have cared for our son be ok? What are we supposed to do? We are still in the lonely horror in our lives and its time to take stock.

Shortly after wheeling our children into the house, I just remember it feeling so scary and foreign. What do I do? Ok, make appointments. Outpatient therapy. Back to back appointments were once a week. Then drs and specialists in between. Once again, our new pseudo friends. We bring them our broken children in hope of a miracle. The cycle of appoints went for 1 year and 3 months weekly.

The first time our PT approached me with the news that its time to take a break from therapy, I cried. What was happening here? He is almost 5. In my brain I always spoke to myself, we have until 5 years old before the neuroplasticity of his brain was extra active and prone to making new pathways. What did she mean, take a break? My kid is still broken. I took John John home and cried. I had this magic number in my head of a perfect little baby of mine that wasn’t fixed yet. We still had a few months before he turned 5. Where had my magic window gone? My world shattered into a million pieces of reality. She was my friend, she helped john learn so much. All of the therapists, receptionists, nurses. All gone. But, there was so much more to me in the appointments. I had great conversation with her while my child was gently pushed further and further to the child I knew. My heart was broken and reality came crashing down again.

We parents can forget that you have a life outside of your job. Home is so difficult and we have so many problems to tackle. You were with us when the date came where he beat his death sentence. But, we can’t be real friends. It is not professional. You, caregiver, you did a tremendous amount of work, and now your job is done. It is so hard to settle into the quiet of our responsibilities at home. Using all the tricks you shared with me to help John progress a little more at home. You reminded me gently that we were allowed to go enjoy summer. John is doing great and he has progressed tremendously.

Now almost 4 years later, we barely need to see you. But, you were there if we do need you. It is sad and scary all mixed up with this whole cancer thing.

I guess what I want to say, is thank you. You know who you are. You all hold a special place in my heart.



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