Tuesday, March 4, 2014
**This blog post was written by a Dragonfly mom. <3
At 26 years old, I sat in a hospital room on the Oncology floor at Cincinnati Children’s Hospital. I had three very young children and one was just diagnosed with cancer.
At that point in my life, I thought I knew most of what life was about. I knew that I would be learning a lot more given our recent circumstances. But, for the most part, I thought I knew most of what I needed to know.
It was over the next couple of years that I realized I didn’t know anything at all. The things that I thought I knew, ended up being wrong. And the things that I didn’t know, became my reality and quick.
Here is what I’ve learned the hard way throughout my son’s cancer journey…..
#1-The people you think will be there for you, will run in the other direction.
I come from a rather large family. My family had already went through a childhood cancer situation, and my Aunt and her daughter had amazing support throughout her cancer battle. I thought, “At least I’m going to have an awesome support group”. After all, my family has already been through this situation, so they know how hard it will be, and they will be there for me. WRONG! The people I thought were going to be there for me, ran really fast in the other direction.
Not all of my family bailed, only the ones who I thought would stick by me.
#2-Christians can be your biggest stumbling block.
I have never experienced such hatred and cruelty in my life than when my son began his cancer journey and for the next several years after. And it was all by Christians in my family!! As a PRACTICING Christian, I had to realize that they were the ones who were letting satan use them for his purpose. Not God’s will.
Which brings me to #3…
#3- I’ve learned what kind of Christian I want to be.
I want people to know that they are accepted for who they are no matter what they believe or what kind of life they live. Jesus told us to love one another without judgment and I’m trying my hardest to be that kind of Christian. I want to love others and be there for others-no matter what.
#4- No matter how far off of treatments we get, it never gets any easier.
My son will be off of therapy for 16 months, soon. And my feelings and emotions are just a raw and real as they were when we found out he was sick. Every check up day still puts knots into my stomach. Every bruise, leg pain, or pale color skin tone, sends me whirling back to diagnosis day and the feelings come flooding out.
#5-I still have a problem with people hurting my children, because they don’t like me.
I’ve learned to suck it up and I could care less what people think about me at this point in my life. I do however, have a problem with people hurting my children. After my son was diagnosed, at the age of 4, he sat in his bed 3 days after being diagnosed, crying and crying and asking me why certain family members weren’t coming to see him. And then he asked something that still boils my blood to this day: “Are they mad at me for being sick”? Its one thing to make me feel like crap, I can take it. Its a totally different story to make my child feel like crap because you have a problem with me.
#6-My children deserve every opportunity that’s given to them.
My son was given a week at Disney World through “Make-A-Wish” and has been given several wonderful opportunities through “The Dragonfly Foundation”. So many, that I’ve lost count. We’ve met celebrities, we’ve been able to go to baseball games, the circus, parties, my kids were in a radio commercial, and so much more. I use to feel bad because a certain person told me that I was taking advantage of free stuff and playing the cancer card. But then one day I realized that they have no idea what my son has gone through, what my family has gone through and what we are dealing with now. My children do deserve everything that we’ve been able to do, because we didn’t deserve childhood cancer in the first place.
#7-Temper tantrums are actually a good thing.
Well, I don’t know about good, but they mean your child is alive. I know so many people that have lost their child to cancer and would love to have them throwing temper tantrums. Every time one of mine have a melt down, I thank God for allowing them to be here and be able to throw fits…..No matter how much the actual tantrum can be annoying, all of my kids are here. And for that, I am thankful.
#8-Its okay to be tired. Really, it is.
I thought that after things settled down after diagnosis, I wouldn’t be so tired. Boy was I wrong. I’m even more tired now, after therapy, than I was right when everything went down. Why? Because when you have to get up and face each day with a bizillion tests, medicines, Dr talks, port accesses, IV’s, etc, you don’t think about how tired you are and you learn to push your personal feelings aside and do what you have to do, when its needed to be done. Only after therapy, or when things settle down, do all of the emotions and exhaustion that you’ve pushed aside for so long, come popping up out of control.
Which brings me to my next realization…..
#9-I’ve learned that its okay to take time for myself.
For the longest time, I would never leave any of my kids during the illness of my son. I felt guilty. But then I realized that Mom needs time for herself too. I am exhausted! All of the time! Thankfully, I have a group of really awesome friends (you know who you are!) that allowed me to step out from time to time and gather myself. And by being able to escape reality, even for a little bit, I was able to better meet the needs of my children when I got back home, because I took a breather. So, Mom, take time for yourself. It’s okay!
#10-Once an Oncology family, always an Oncology family.
A fellow Oncology Mom once said “Its a family that you never want to be apart of, but once you’re there, you never want to leave the family”. I couldn’t have said it any better myself. These parents that I have met along the way, have been amazing to me and my family. You are automatically accepted into this family-no questions asked. They will be there for you, cry with you, laugh with you, they are offended just as much as you are when someone says or does something mean to you-turns out, that my family aren’t the only rude ones who treat families that have a child with cancer, poorly……..
These people are the smiling faces you see at an event. They are just as exhausted as you are, but still take the time to be a friend without judgement. And I am truly thankful for each one of them that I’ve met along the way.
#11-I thought medical terminology would stop with therapy.
I thought I would only need to use medical terms when it was chemo day. Lol. I find not only myself talking in Dr. lingo, but all of my children as well. Just the other day, my daughter came to me and showed me a bruise that she had on her leg, followed by: “I think my platelets are low”. Whaaaaat?
#12-People will believe whatever they want to believe.
No matter how hard you try to make someone understand your situation or change someone’s negative thoughts about your situation, you just can’t do it. I’ve tried many times, until I was blue in the face, to try to get someone to understand the hardships that we’ve walked through. And I always fail miserably. They will believe what they want to believe and until they walk where you walk, let them believe it.
#13-You love every other child with cancer, even if you’ve never personally met them.
I use Facebook as a way to ask for prayer requests. I also use it to keep up with other current cancer warriors, so I can pray for their specific needs. Every. Single. Time. I see that a child is struggling or just lost their battle, I cry. It doesn’t matter if I’ve met them or not. It strikes your core. It breaks your heart, because you know that could easily be you one day. I remember following a little boy’s cancer journey. I never met this sweet baby boy and one day things went south with his health and he ended up losing his battle. I still cry for his Mother’s loss to this day. I still pray for her comfort and peace. I feel like every Oncology parent is connected and we all grieve in a different way when we lose one of our own.
#14-The biggest lesson of all.
No matter what people say or do. No matter who sticks by you or who decided to run, in the end, the only one who has never failed me is God. He gave me strength when I needed it. He gave me peace when I was worried. He gave me, my children and even let me keep one a little longer that I thought I would. He gave me an amazing husband. He gave me my friends and true family. He gave me His Son, who gave me eternity.
I can’t change anyone’s mind.
I can’t make people be nice to those who are struggling.
I can’t make people be in my life.
I can’t stop people from talking about me or my children.
I can’t keep the cancer from coming back.
I can’t stop children from dying.
But I can trust that God has a plan for me and my family. I can overcome the obstacles that satan has thrown in my path-even when he uses Christians to do it. I can love unconditionally and without question. And, I can forgive those who’ve wronged me and move on with my life. I can wake up each day and dwell on the past, or I can thank God for my blessings. Because in the end, I am truly blessed and my family has only become a stronger, more tight knit family than before my son became sick. And that my friends, is something to be thankful for!