Tuesday, September 6, 2011

Top 10 Silver Linings that I discovered during my Journey as the mother of a Child with Cancer

In honor of Childhood Cancer Awareness Month, I thought that I would write a sometimes tongue in cheek list of silver linings that I found as a mother of a kid with cancer.

10. Learn who your real friends are.
Some friends walked out on us, some friends stepped up to the plate. Some of the friends who stepped up were people I'd never met before... some I've still never met. Some of them were people I'd not seen since high school or college. I was humbled to receive monetary donations from the parents of a friend from elementary school or from the church where my mom attended prior to her death. I was hurt when people I'd known well and more recently blew us off. It's been an eye opening experience and today I have more true friends than I've ever had before. And I know they are true friends because they proved it to me.

9. Lifetime membership to an exclusive club.
It's a pretty crappy club to be in but we are in good company. I have made friends who I believe will be life long because of Hunter's journey through leukemia. These women understand me and what I've gone through in a way that no one else will ever be able to understand. Regardless of how hard they try, they just don't get it. But these women? They get it. As a member of this club, I will forever be emailed whenever a friend of a friend's child has been diagnosed with leukemia (and it has happened and it will happen) and I'm cool with that. As a member of this club, I have been praised for being brave, I've been called an inspiration, I've been referred to as a hero. The truth is, any of you, once you were a member of this club, would have dealt with it just as bravely. God protected me. And He helped me close my eyes really tightly and go through it really fast, like I was trying to get inside from a thunderstorm. And now that I'm safely inside, dry and warm, I can honestly said that this leukemia journey has been the most defining experience of my life. It has helped me drop that cloak of fear and worry and replace it with a never ending desire to be with my Lord. That's all that is left for me. While I'm on this earth, I intend to follow his Holy Spirit and spread the good news to as many people as He sees fit... and most importantly I intend to minister to my children. As a member of this club, I feel like God chose me, single handed, to be the mother of a child with leukemia. For He saw something in me that made me realize that I could handle it, gracefully. For His glory. For that I say, "I am humbled. I am honored."

8. Make a whole new family of medical professionals.
When you are going through this cancer journey, and you are stuck in a hospital for a VERY long time, you grow close to (some of ) the staff members. Certain doctors and nurses at the Vanderbilt Children's Hospital have become like family to us. We are happy to see them and look forward to our visits with them. We feel sad that we don't get to see the nurses from 6A and 6B anymore... but we love our team members from the clinic too.

7. Become well-networked in your large church.
Before Hunter was sick, we knew a few folks in our gigantic congregation. But our lack of regular attendance, our lack of small group involvement, and my lack of social skills kept us from really getting plugged in (which is often a common side effect of attending a bigger than big congregation). After we returned to church in May, however, all kinds of people knew who we were. Today when I walk the halls of our church, I recognize nearly every face as a person who brought us food, or gifts, or donated money, or sent cards, or who, most importantly, prayed. One friend (who is dealing with cancer right now actually) took it upon herself to stock our freezer. She is quite talented at organizing and writing tactful letters and she got the job done. Not only did people bring food individually but she also hosted a cooking party for us. I think we ran out of food in June. That was six months worth of food... we ate those meals probably twice a week. It was astounding. One good friend had her small group sign up for prayer around the clock the day of Ronin's donation and Hunter's transplant. I know that they were covered in prayer by many that day but for at least twenty four hours, someone was praying every hour on the hour from our congregation. I was humbled. Now we feel at home with these people. They are our family and we are so thankful for them.

6. Reunite with estranged family members.
It's no secret that my earthly father and I weren't exactly on speaking terms prior to Hunter's diagnosis. But once we started seeing one another at the hospital, I felt comfortable with having him at my home. And slowly but surely I began to trust again. Today I am pleased with my relationship with him and my stepmother. I'm not sure how things would look today if Hunter had not gotten sick.

5. Earn an honorary home nursing degree.
People, I have no interest in the medical field. Some folks find it interesting, I find it terrifying. I dislike blood and needles and hospitals and even doctors and nurses. Keep them all away from me. But, despite my distaste for all things medical, I have basically earned an honorary nursing degree. I have measured poop, administered drugs daily for months and months, worn gloves to avoid urine poisoned by chemo drugs, been on "precautions" just in case I was exposed to C-Diff (a scary bacteria that causes tummy issues), cleaned a Hickman line (twice a day for months), operated a CADD (for fluids and liquid nutrition), cleaned up vomit, sanitized every surface everywhere over and over again, dealt with multiple surgeries on multiple kids, and ventured my own "professional" guess for diagnosing a multitude of problems. I have quite a bit of knowledge and experience now but guess what? I am still not in the least bit interested in the medical field!

4. Gain a new appreciation for staying at home.
After Hunter got sick we pretty much didn't go anywhere except to the hospital. This was a rude awakening for me. I had no idea what to do with myself. After a few weeks, when the dust settled, I started to enjoy how everything had come to a complete stop. My anxiety actually lessened. I started to sleep better. I had friends bringing food so I really just had time for focusing on what was important: spending time with my family. Of course, as you know, I've started going places and doing things again. But it's different now. I only do the things that I feel will be of real value to us. I am spending a lot of time going to church now. We had started to attend some classes but the kids didn't really like it so, out it went. We aren't signing up for library story time because it's just not that important to us. We are focusing on what we really want to do and we are setting priorities. I would probably still be running us all ragged had Hunter not had leukemia.

3. Take up residence on the moon.
I had a few good friends in college. One of my friends was the director/producer of the television show that I acted in and wrote for (you aren't missing much). He was a fantastic guy... really showed me what I would like in a husband one day. He was already taken. By a wonderful girl who he went on to marry. This family, long story short, adopted two boys and then got pregnant with a girl a few months later. That's about the time I got back in touch with them. Shortly after their daughter was born, on my birthday to be exact, she was diagnosed with leukemia and went on to have a bone marrow transplant. I was mortified and I kept up with the story online. I prayed and requested prayers for this family. I printed her sweet photo out and put it on my refrigerator to help remind me to pray regularly. Needless to say, throughout our journey, this family has been priceless to me. They have helped me so much just by being there. Recently I had a conversation with my dear friend. I had felt really lonely, like no one understood me. I knew that she understood me though. So I told her, "I no longer feel like I can relate to most people." She laughed. She told me that a woman she had met on their journey (also a cancer mom) told her, "Now you live on the moon." I got that. In my very soul. It's true. I no longer live here. I am not the same person and this is not my home. It's hard to explain but if you are a mom of a child who has or has had cancer, you'll probably understand.

2. Appreciate the little things.
Unless you have been separated from your child, knowing that he may not come home again, you might not be able to relate to what I'm about to say. I have grown to appreciate such small, trivial things. Hunter has been home with us for good for nine months now (praise the Lord) but I still find such joy in fixing him food, washing, folding and putting away his laundry, reading to him, hugging him, holding him... not a day goes by where I don't feel exuberant over his being with me. Watching him start to run and play again was more exciting this time around than it had been the first time. Every time he eats a good meal and enjoys it. Every time he attends a Bible class at church. Every time he gets together with friends or does something "normal" like attend summer camp or a movie... I feel so thankful. Fall to my knees thankful.

1. Face your fears and laugh in the face of cancer.
I remember when I first saw this movie some years ago (huge "Kids in the Hall" fan) thinking that I wasn't sure if I found this part to be funny or not. A kid? With cancer? Funny? No, not really. But after Hunter got sick, I thought of this scene, looked it up on youtube, and got a real kick out of it. Not only did Hunter look kinda like this after his transplant, but it's so medically inaccurate, yet otherwise accurate! The boy is totally cool with the fact that he's about to die but he acknowledges the hell that his parents seem to be experiencing. For the record, not even once did I ever hear anyone refer to whether or not Hunter's marrow was high or low. Knowing how little research went into this writing kinda makes it even funnier!

What challenges have you faced? Did you find silver linings in those storm clouds? I'd love to hear about them.
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1 comment:

  1. That is a wonderful post. Thank you for writing it. Also a leukemia mom, Ashland


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