- At some point or another, the thought will cross your mind that your child may die. Whether it’s only in the initial second you hear a doctor say “cancer” or throughout the course of treatment, it will happen. This thought will break your heart in a way that can never truly be repaired. How you cope with this thought is entirely up to you.
- As confusing as all of the terminology, medications & procedures seem on your first trip to clinic, you will eventually learn it all. Many parents feel like they are not “set up” for all this and feel like they’re going to fail their child, but within weeks, not only do you understand the phrases you once thought were gibberish, you can now shoot off numbers from their last CBC from the top of your head and know what ANCs and WBCs all mean and why the number is important.
- Some things will get better as time progresses, but it never gets any easier. You learn the schedule and the routine of things. You learn which medicines are going to make your child get sick, which nurses make your time there a little easier, which stalling tactics your kid uses when getting their port accessed; but watching them throwing up uncontrollably, seeing them scared, watching them scream in pain as a 1 ½ inch needle buries its way into their chest will never be any easier. Instead of having to hold her down with all of your strength during port accesses, now it’s only a matter of holding her hand and comforting her, counting to three, and encouraging lots of breathing. There will be tears (probably from both of you) and it will be better than before, but still not easy.
- You will find joy in the small things during this journey. I know cancer seems like such a horrible thing, and it is, but a lot of good has come out of our experience with cancer. People rally around your family in times like this. We have had so much love and support from our community. Tragedy and heartbreak bring out the good in people. We have met people we never would have met otherwise who are amazing people and life-long friends. We have had experiences we would have never been able to experience. Our family was chosen to go to Disney World with Bert’s Big Adventure (a non-profit that takes chronic and terminally ill children to Disney for 5 days). I’m not saying it’s all fun and Disney, but there are so many wonderful organizations that do so many wonderful things for the kids to help them forget their troubles (if only for a moment). There’s also something to be said for seeing your child in a different light. Your child will become an inspiration to others and to you. Your family will become stronger. And in many cases, you will become a better parent for it because you learn to appreciate the little things and love your child through it all.
- People will associate hair growth and flushed cheeks with good health and this will piss you off. This one really gets me. Just because my daughter’s hair is growing back doesn’t mean her battle is over. She is still fighting for her life. Her immune system is still shot. She is still at-risk for infections, relapse, etc. And the flushed cheeks, that is from her antibiotics, her steroids, or a combination of the two. It’s not a healthy glow; it’s a reaction to medications.
- Even the best case scenarios and progressions suck. We are lucky. Bella’s Leukemia responded well to chemotherapy so one month into treatment she reached remission. But that doesn’t make it okay. It doesn’t change the fact that she still had to go through the pain and suffering and the emotional rollercoaster that chemotherapy treatment and steroids cause. It doesn’t change the fact that her immune system is now shot and she is constantly at risk for sicknesses. It doesn’t change the fact that she caught the common cold and it put her in a coma and in the hospital for 71 days last year. It doesn’t change the fact that she will have long-term side effects, potentially, for the rest of her life, because the treatment she takes is literally poison.
- You will be surprised by who sticks by you. Some people will surprise you in the best way! You will make life-long friends out of complete strangers or other moms/dads going through this same journey with you. But there will be others you assumed would be there who aren’t. I can’t tell you not to let this upset you, because it undoubtedly will, but know that it is their loss. Your child will remember who is there for them and you will remember who is there for you. Focus on the people in your lives who are there. They are the ones you can truly lean on.
- Don’t be afraid to ask for help. We all do it. We all have those moments. Even when everything is falling apart, you won’t take your neighbor up on the offer to cook your family dinner. But you should. People genuinely want to help and you need things done so why not let them?!
- This is an emotional experience. Be prepared. You will find yourself hysterically crying one minute, and angry, hurt, and livid at another. You will be overwhelmed and joyous. You will be scared to death. This is literally the craziest emotional roller coaster you will ever take. So buckle up!
- You will feel like you’re failing your other child(ren). This one is a big one for me. I feel like Nolyn has really been “pushed to the back burner” since Bella’s diagnosis. When he so much as sneezes, we call the grandparents to pick him up for fear of contamination. Bella just doesn’t have the immune system to kick whatever it is he may be harboring. He doesn’t get to go to the playground as much. My house is no longer “the fun house.” He would much rather go to Nana and Papa’s house so he can be a “normal” kid. My advice would be if you have family living nearby like I do, allow the sibling(s) to stay over there more often if possible. It gives them the chance to be “normal” kids, but it also will make you miss them and may make your sick child feel more ostracized. I still have problems with this balance and we are now cancer-kid veterans.
- The end of treatment is not the end. In the beginning, you look at that end of treatment date as the magic number, and you should-it’s good to be able to see the light at the end of the tunnel, but it’s not necessarily the day life “goes back to normal.” The blood tests, the scans and the check-ups will occur indefinitely every so many months. The worry you feel every time your child has a stomach ache or a bruise will never go away. Everything centers around the possibility of cancer coming back.
- This will change you. Forever. You will not be the same person after diagnosis. IN some ways, it will make you better. In some ways, it will suck. Everyone changes in different ways, but I know for me personally-it made me a much better mother. I cherish the time I get to spend with my kids. It also made me a hypochondriac. I worry about anything and everything all the time. Most of my “free” time is spent reading up on the newest cancer research in case she relapses. It has become an obsession.
Being a single mother is a difficult task-ask anyone. Having a child with cancer is an even more difficult task-as I’m sure you can imagine. Now combine the two, add in many sleepless nights, stupid mistakes, arguments, and temper tantrums (thrown by both my kids and myself) and you’ll get a glimpse of what my life has been like the past 2+ years. I’m not telling you this to complain or gain sympathy. I’m telling you to preface how awesome our God is!
If you’ve read my very first blog post sharing my testimony, you know that I went a little “crazy” after my divorce. I got married young (at 17) and after 6 years in a tumultuous marriage, my husband came home from work and said “I don’t think I love you anymore-I want a divorce.” He left our two children and I almost immediately and moved in with a coworker whom he was having an affair with (whom he later married). Because I was young, and hurt, and dealing with emotions I didn’t want to process, I became sexually promiscuous. I did a lot of stupid things I now regret.
Because I had allowed myself to be used by men and I settled with the fact that I was unhappy and unfulfilled, but that was just “the way it was,” my self-esteem plummeted. I felt like I didn’t deserve any better so I didn’t even want to bother with dating. But those nights alone, in my bed, were unbearable. I was lonely. I needed companionship. Even through those dark times, I would write in my journal and pray to God for a good, honest, Christian man who loved Him and would love me and my children. I made lists of “what I want in a man” and wrote down verses about what makes good husband material according to the Bible to compare.
I finally stepped away from the men who were using me and tried to focus on myself. At first, the loneliness consumed me, but I slowly began finding my way and realizing that being alone is not the prison I thought it was. Because I always have my kids and couldn’t go out and “date” in the traditional sense, I decided to join some online dating websites just to cast my net and see what was out there for me.
After a few weeks on the site, and after talking to several men quite extensively, I wanted to meet one of the people I was chatting with and texting, which I didn’t take lightly. Before meeting, we talked on the phone for a week and I felt I had a good sense of who he was as a person. We scheduled to meet and before the meeting, I was so incredibly anxious and nervous and excited. I honestly wasn’t getting my hopes up because this whole experience was supposed to be a trial and error and testing the waters of dating. When my eyes first met his though, I instantly became a nervous wreck. There was something about him that gave me butterflies and made me fumble over my words. I couldn’t even make eye contact with him. I was a mess.
After several hours of talking and eating, it was amazing how comfortable I felt with him. During our conversation, I was reassured that he was the same person I had been speaking to online (not putting on a front or being fake). We hit it off and from that moment on, we’ve been nearly inseparable.
He has made me the happiest woman in the world. Because of him I am a better mother and an all-around better person. He brings out the parts of me that were buried under years of mistrust and hurt that I thought were gone forever. He makes me feel like myself again. Even though we have only known each other a short time (since April), I can’t imagine spending my life without this man and his two, beautiful daughters in it.
God has truly shown me His favor and given me the man I needed (even when I didn’t know I needed him). He loves my kids like they are his own. He loves me more than I’ve ever been loved by anyone else. He believes in Christ and has similar beliefs to me. He is a great father to his girls. He is kind. He has a good heart. And when he kisses me, I still get butterflies in my stomach.
I always thought the “love” we see in films and read in books that portrays the craving to be with one another and the butterflies was all a fairy tale, but it isn’t. I want to spend every waking moment with him. When we are apart, my body physically aches and yearns for him. I crave his presence, his touch, his smell. He is, beyond a shadow of a doubt, the man God put on this earth for me. I just hate it that we went this long without each other, but then again, if we would have met each other any earlier, we both may not have been ready. God’s timing isn’t always what we want, but He has a reason for it.
If I had to go through my husband cheating on me and all of the betrayals and hurts all over again just to one day be with him, I would do it over again in a heartbeat.
Song of Solomon 3:4 “I have found the one whom my soul loves.”