I guess you could say I’ve had some writer’s block since March 25, 2015. Feeling shock, extreme sadness, denial, extreme fear, hopelessness, and finally joy and gratitude, I have been so wrapped up in processing my feelings the past couple weeks and just too busy and tired to begin to do more than just watch and wait for the next step or the next hour. I still am not ready or capable to telling all of Brody’s story. My memory and brain is fragmented. Honestly, I have only been able to process very simple explanations and understandings from the Ophthalmologist, Neurosurgeons, Nurses, and Physical Therapists in all our time together. I chose on many occasions to leave to be with Brody instead of hearing all the medical information. It was just too overwhelming.
We are still coming out of the fog, and I do believe we are headed towards light and better times every day. And while you may not be able to imagine what we’ve felt or experienced exactly unless your child has suddenly been diagnosed with a brain tumor, we all have faced and will face challenges in our lives. We all struggle from time to time. And I want to share what I realized from this experience because I think it can apply to any trauma, any tragedy, or any challenge really. Maybe one or more of these thoughts may resonate with you. Maybe not. But, I do think it will help me to share what I have realized and how this “bump in the road”, as we are calling it, has shaped my vision of life.
1. If and when you have a bump in the road, go slowly watching what’s just ahead of you. Don’t rush.
I could not have coped with looking at long-term what his diagnosis would look like, what could happen during surgery, or how our lives might change. Going into battle, we did not tell Brody he was about to have “brain surgery”. We did not tell him he had a “brain tumor”, which he does now know. We took Dr. Savage’s lead and simply said she was going to have to fix what was causing the vomiting and eye problems. She was going to have to move things around. When he became frightened and upset not wanting to go back to the hospital that Monday, we just told him it might be hard but “HE CAN DO HARD THINGS. WE CAN DO HARD THINGS”, and it will be a good story to tell.
2. If you believe you can do it, you can. Mind over matter.
When we were faced with the decision on where to have the surgery done, we had less than 24 hours to decide. The tumor had to be removed and we couldn’t wait. Bo asked Dr. Savage lots of questions and we did consider exploring St. Jude’s and Boston but we knew that he would face a road of rehab and an unknown length of time in the hospital. Most importantly, we wanted the best qualified surgeon. We loved the way Dr. Savage spoke to Brody and she put us at ease. It was not her resume that convinced us it was the right decision. It was our ‘gut’. We just knew it was the right decision.
3. Go with your first instinct. Don’t second guess yourself.
We knew for Brody’s sake, having friends and family that loved him around would keep his spirits lifted. We knew that it would also be easier on Anna if we were close and she could be around people she loved too. What we didn’t realize is how important and incredibly helpful it would be to us, especially emotionally. Whether is it was during that first life-changing 3 1/2 hour MRI surrounded by family, during the ‘normal’ weekend before when friends kept Brody distracted, or during the day-long surgery with friends and family by our side every second of the day, we needed that support as parents. When we felt like our lives were crumbling yet we were trying to keep it together for our children, we had to cry and literally lean on those we love. We truly could not have done it without all the prayers, supportive emails, texts, and cards, and the continual favors and gifts of kindness.
4. Let people in. Family and friends, whether it be one or thousands, will help you get through hard times.
5. Don’t be afraid to ask for help. It’s not weak; it’s smart.
We have all had to face feelings we have never had before, or really ever dreamed we’d experience. They really cannot all be explained but somehow we got through. One of the first things I told Bo was that I’d totally need therapy. I was pretty sure we’d all need counseling of some sort and of course, I’m all about that. And we may still need it later on down the road but for now, we really are happy and doing well and much better than I would have expected. I find true joy in the smallest things. And, I have so many wonderful and true friends that I can be 100% real with. I had so many loved ones that I spilled out my heart to. I realized that they were my best therapists because they listened and cared. I have the most amazing husband who not only was by Brody’s side literally the entire way but also mine; He took away so much of my anxiety and helped me believe we could do anything.
6. Admit and face your feelings and thoughts. You can’t escape them. Then, tell someone about it.
When I told Brody that maybe going to a counselor would be a good idea, he said he didn’t want to go talk to a stranger. I am a counselor and he told me he would talk to me. Both of my children are really good at expressing their feelings and we have done some mini-counseling sessions.
What has helped so much is love. Love from family. Love from friends. Love from GOD. A powerful moment was in the ICU on Sunday 6 days in. Brody had been asking to see Anna since one of the first few days. He asked about her, who was taking care of her, and he begged for her to come visit him. Unfortunately and understandably, she was just too scared to go into ICU. In fact, she really was scared of the hospital, as was I, at first! So since the rest of us were still a little traumatized, we didn’t think dragging her into the PICU would really be a good idea for anyone. But, it broke Brody’s heart and it was only one of the two times he saw me cry. Not wanting to leave Anna standing alone outside the locked ICU doors that Sunday when Bo and I were switching out, Anna had to step inside the forbidden doors. When I told Brody Anna was out there but out of sight but at the end of the hall, he said, “I’m getting up. I’m going to see her”. Up until this point, we had to force him out of bed because it was so painful and took all of his strength. But, boy did he move when he was motivated to see his sister for the first time in almost a week. It was amazing and inspirational.
7. Love is the most powerful medicine.
Later when he was home for a couple days, he wanted to go pick up Anna at school. His friends were so surprised and excited to see him. And, when he choose to go into his classroom and surprise deliver his homework k to his teacher, it was priceless. The smiles and energy were contagious!
Now that we are home and feel like the worst is over, we still have challenges to overcome. His balance is still an issue. He has double vision that the glasses help. And, he gets tired really easily. He continues to get daily headaches but everything is manageable and to be expected. What’s so amazing and joyful is watch him to do things for the first time again. It’s a rebirth! He walked on Easter again for the first time. I was over the moon when he ran through the yard only a couple days after coming home. And watching him ride his bike again yesterday made him seem and feel like just a normal kid again.
8. Take each and every challenge, big or small, one step at a time. Celebrate success big and small. Baby steps lead to greater things.
As we continue down this unknown road, I have so much joy and gratitude. When people ask how I’m doing, I really do mean that I’m happy. I am happy now. I gained a peace in my heart on March 31st, the day of the surgery. All along, I did really believe that things would be ok. It was so strange that every time I hopped into the car to leave the hospital, Stubborn Love by the Lumineers was playing over and over. The line, “It’s better to feel pain than nothing at all. The opposite of love is indifference” stood out. The chorus: “Keep your head up. My love.” brought tears to my eyes every time. Brody was literally and still is trying to simply keep his head up!
9. Trust in something bigger and greater than yourself. God, Light, Life. The Lord puts peace in your heart. Have faith.
I just knew everything would be ok because my son has a lot to give the world. Before the surgery, I told some friends and my mom that he would do something great one day. What I didn’t know then is that he already has. He has done things no one I know has, and he’s faced every fear with courage and determination. This is not something I would ever wish on myself or anyone else. It has been a game-changer. It is a challenge that is beyond explanation. But, I like I told Brody the Monday before we went back to the hospital, YOU CAN DO HARD THINGS. WE CAN DO HARD THINGS.
10. Every challenge leads to a better understanding of oneself if we allow room for growth.
Instead of facing fear and challenges with anger and resentment, you have to just do it. You have to believe in yourself and for me, in GOD. You have to trust and take the love from your family. You have to face it and not crumble (I did want to at times, however!). Whatever it is that you are facing or may have to face, do it with love, hope, and determination. Take it one step at a time and appreciate all the people and baby steps along the way. We are so grateful for all of it, for all of you. For the love of people near and far. For the prayers from people we’ve never met. For the kindness, the distractions, and outpouring of hope. Although this is a story that will never end, we have everything we need to face any challenge. We can do hard things, people. All of us.