It
has been a long time since I have been able to sit down and write… my life is
far busier now than it was at the beginning of August. Teaching 22 students can do this to you. I love it and I am thankful everyday that God
has blessed me to be able to do this now. I am also in a place where I have to question
God’s plan… not God! I know that God loves me and is there. I don’t doubt that the promises that I know
are true. However, I question the plan,
why are things happening? What am I supposed to learn? Who am I supposed to
help? When will it ever end?
In
2001, my mother died of Glioblastoma multiforme or GBM(
Read here for some more information) www.abta.org/understanding-brain-tumors/types-of-tumors/glioblastoma.html)
When we received her diagnoses it was a whirlwind of emotions. Past events that we couldn’t explain what
happened all of a sudden had a reason, my mother had a grapefruit sized tumor
in her brain. We had no real warnings
though, nothing that could be considered abnormal. She had been tired but hey, you work 10 hour
days at the hospital on your feet and you are tired too. She had one seizure but it was contributed to
her diabetes and a low blood sugar at the time.
We found out when my mother had emergency gallbladder surgery. They put her to sleep and when it was time
for her to wake up she woke up but she wasn’t the same person, she couldn’t
stay awake and had trouble doing things that we knew she could do. After a scan the tumor was found. She was given 3 months to live! My mother was a fighter and she fought for
herself but she also fought for me, she wanted to see me graduate from college
and get married to my boyfriend (which she adored). She fought… chemo wafers (which were
experimental at the time), surgeries, chemo and radiation. She managed to fight and see me graduate and
lived 364 days after her diagnoses.
I
remember the pain after her diagnoses; we had no warning no clue and had to
live daily knowing that she was not going to make it. I remember the pain after she died, calling
people and telling them, randomly seeing people out and having to give them the
news. I remember people thinking that it
was over and no longer coming around to support. I remember hurting wishing that she was right
there with me to face my life! I remember wishing that she was there to tell
that I was engaged and to be there at my wedding. What I didn’t know then was
it wouldn’t be the last time that I felt the pain.
See
my family wasn’t new to brain tumors, however, the tumors that my grandmother
had were different. She had meningiomas (read
here for more information www.abta.org/understanding-brain-tumors/types-of-tumors/meningioma.html),
she had them my whole life and she fought.
She fought for her children and she fought for her grandchildren. She fought and lost her vision, her smell,
and her taste. She fought to make it to
my college graduation, my wedding and although she didn’t remember it she held
my first born child. She fought even
when one of her daughters (my mother) was diagnosed with brain cancer.
I
remember the pain I felt after realizing that her time was drawing close that
she would soon go join my mother in heaven and that I would no longer have her
here. I remember the pain of not knowing
what to say and the pain of realizing that I would never go back to her
house. For her funeral I packed up my
infant son and stayed in her house with him.
I remember that pain. What I didn’t know then was that it wouldn’t be
the last time I felt that pain.
Several
years passed and I had an amazing son and then God blessed us with another
son. It was shortly after his birth that
we met most of the people reading this blog when our son was diagnosed with
medical conditions. He fought hard; he
fought because as a child laughing, playing and living is what you know. He smiled because he knew no difference and
smiled to help us in our journey. We
(Adam, myself, and our families) fought to give him the best quality of
life. We fought to get him all the
experiences that he wanted and all the ones that we felt like he needed. We fought for school, we fought for the
school bus, we fought for church, and we fought for the things that he needed
to have the best quality of life. We had
many people come beside us and walk with us.
Then at almost 2 years old we got the final life defining diagnoses, our
son had Mitochondrial (mito) disease (read here for more information www.mitochondrialdiseases.org/mitochondrial-disease/). He fought with pumps, vents, medications,
hospital stays, oxygen, and everything else but he fought the best fight that
he could have fought but he lost his life roughly two weeks shy of his 4th
birthday
I
remember the pain of having to make decisions that no parent should have to or
wants to make. I remember the pain of
having people tell us that we were doing things wrong. I remember the pain of having to call and
tell people that we were back in the hospital.
I remember the pain of having my older son not invited to birthday
parties or play dates because of his brother.
I remember the pain of having to prove that it was time to go home and
to stop fighting. I remember the pain of
having an almost 4 year old tell me that he was done fighting, wanted to go
home, and that he would meet Jesus soon.
I remember the pain of relationships changing. What I didn’t know was that it wouldn’t be
the last time I felt that pain.
Zachary
died June 14, 2011… since then life has changed a lot! A new best friend, new
friends, a new job, a new life! The pain
would creep up in my daily life and I would have to remind myself that my
mother, grandmother and my son would always be in my heart and that I would
never forget them. I promised myself
that I would strive to make sure that no person would ever feel alone or
isolated when they are going through an event that touches them. I have been to a number of funerals where I
knew I didn’t have the words but that the act of being there was all that I was
supposed to do. I have been to doctor’s
appointments where I knew that I couldn’t help but was there to hold a
hand. I have been on the other end of a
facebook chat, at all hours of the day and night, where I know I am just there
to let them talk. No one should ever
have to feel alone. I have been in
situations where all I know is that I am here to listen and to allow the person
to vent. To let them know that I can’t
judge their emotions or their actions but that I will love them no matter.
I
have come face to face with this again lately… in my family and in my circle of
friends. It reminds me of all the pain
and all of the emotions that come along with having someone you love be
sick. The lost feeling, the hurt, the
anger, the not knowing what to do or where to turn when it feels like the walls
are crashing down. Then I remember I am
not alone!
Why
am I writing this? As I type this I know of one family member fighting two
different types of brain tumors and her family that is standing beside her;
fighting with her. I know of one spouse
who is helping her husband fight an illness that at any day could become terminal. I know multiple families that are fighting
mito. I know multiple families with children
that are struggling to find something the child can eat. Just to name a few!
I
didn’t know through each of my personal situations that it wouldn’t be last
time I felt the way I did. I didn’t know
that I would feel the emotions again, however, God’s plan say otherwise, I
would certainly feel the pain again. So
I am learning even still that you love those that are in your life. Love your spouses, significant others,
parents, children, aunts, uncles, grandparents, best friends, friends. You love, give your best to them because you
never know if you are helping them fight!