Worry - Stress - Relief
Unless you were a part of the struggle, you will not
understand the stress, joy, worry and happiness after 20 years in remission.
23 years ago, when he was diagnosed, my Dark Knight was 3. A
rambunctious little boy who was a whopping 43 pounds in December had turned
into a sickly child who could not walk on his own any longer without pain,
weighing in at merely 23 pounds. He never slowed down until Leukemia zapped all
his energy.
I recall this story when he and I talk, or I must explain to
someone what he has been through. It was not just the Leukemia. It was not just
the chemotherapy taking everything out of him. It was life. Everything. He worried
about dying, even wanting to die at one point rather than take his medicine or
when his best friend lost her fight with cancer. The fight to get him to take
his pills was a huge battle 3 to 4 times a day. At one point, it was 13
medications at one time! They may have been small, but that is scary for a
little child who cannot understand or voice what he is feeling. I tried to make
it fun. I tried to hide the pills, he always found me out. I even made a star
chart for taking his pills like most parents would use for chores or teachers use
in the classroom.
I was beaten daily by this little cherub who had no other
avenue but to strike out at the person who was closest to him. I was accused of
child abuse by a cherished family member, when I would sit with him for over an
hour attempting to get him to eat anything! It did not matter what it was, just
eat. He was so skinny at one point that the doctors wanted to admit him to the
hospital for a month, without my presence, to retrain him to eat as though he
had an eating disorder. That to me is child abuse. What people did not realize
is it was hard for a cancer kid to eat. Sores develop in the mouth after
particular rounds of medication. The chemotherapy kills fast growing cells, taste
buds are one of those. It is not widely acknowledged at the beginning, there
are so many things to go over. So many protocols and tests and surgeries and…and…and.
My son, my angel, my reason for life was battling for his
own. I was his advocate, his protector, his torturer. This weighs heavily on
your soul. But from the beginning I knew it would be ok. God told me so. When
presented with the diagnosis, I said “Ok, how do we fix it”. This was my life
then, 23 years ago. My Dark Knight’s life. We clung to each other, waking and
sleeping. Both afraid that he may die, neither able to voice it.
Last week was Dark Knight’s 20 year survivor appointment.
Nervous does not cover how he felt. He was bouncing around as if he had drunk 5
Red Bulls. He has come so far. Not only did he battle Leukemia, but in his
teens, he was diagnosed with POTS (postural orthostatic tachycardia syndrome).
The chances of this diagnosis were increased due to the chemotherapy. It seems
to be a hereditary illness, mostly women in the family are affected. Dark Knight
won the lottery again! Just not the one he wanted. With all the things life has
thrown at my child, he has never given up.
I am so proud of the man he has become. He is compassionate,
considerate, strong and amazing. When he went out to the world, we worried. We
wanted to protect him, but knew he needed to fly. We never expected to see him
succeed right out of the gate. Both his #2 dad (Handsome Husband) and I have
had moments in our life where we had to rely on our parents for this or that as
adults. Dark Knight never has. Oh, occasionally he will need us to help him
move or something simple. He takes on and carries all the big things on his
own. He said he didn’t want to be reliant on us all the time. He does ask for
advice and calls at least once a week. He wanted me by his side for this
survivor appointment. I gladly sat beside him. His tests all came back great!
I cannot say enough how proud I
am of this kid. He is “adulting” well. I love him more than my own life. He
brings me joy! I cannot wait to see what he does next!
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