Thursday, September 12, 2013

What I didn't know

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) 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, 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  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!