Jones Family

Jones Family
November 2009

Friday, April 30, 2010

The Dash

The last 11 days have been so emotional for me and Bryan. Last week, I'm not sure if my post fully reflected the fear that was gripping me. Brayden's out of the normal blood count results really shook me to the core. The nurse tried to reassure me, but I didn't understand why things were suddenly different. Your mind takes you places your heart can't handle. I prayed and tried to stay focused on the present and not allow myself to think beyond the moment. It was just too much. Things got a bit better with the fear still looming in the back of my mind. I was so thankful to get away and get some scrapbooking time with some sweet friends at my Mom's scrapbook getaway weekend at her house. It was wonderfully relaxing and a great way to, if not re-charge, then at least un-plug for a bit. Sunday hit me hard. Suddenly Brayden was lethargic, in pain, and didn't want to eat dinner. My eyes hopefully told Bryan everything I couldn't say as we gathered around him and prayed together...our little tiny family. I kept hearing in my heart that verse ..."where two or three are gathered in my name, there I will be also." I prayed God was with us in that difficult moment of uncertainty and panic of wondering the worst. I couldn't say it out loud. This is the first time I've admitted the core of my fear. Was the Leukemia back?

Brayden finally was able to rest while Bryan and I sat shell-shocked. There was comfort in knowing we were returning to Children's the next morning early. But with that comfort of knowing he's taken care of by the best, did we want to know the results we would see? Sleep was the last thing on our minds as I started to wonder if I needed to pack a bag, get the house ready. Would we return home the next day? Should I take some of Brayden's favorite things with me? It all took me back to one year ago and walking into our house 10 days later than how we'd left it that night after dinner for the ER trip when we learned of Brayden's diagnosis. I was so angry for allowing my thoughts to go there. I was not going to prepare for the worst. Why was my mind racing? I was letting fear take over! Yet, you know and hear statistics and see it all around you. We had a week of that blood work looming overhead and now his physical reactions Sunday sent me into a tailspin.

Bryan and I finally realized we'd have to try to sleep. Around midnight my quiet tears finally allowed to flow without Brayden seeing, I confided in Bryan something I've never said out loud. Isn't it strange how we can have these fears in our hearts but if we don't say them out loud, it won't bring truth to them or the weight of them won't seem impossible to bear? I confided in him that I wondered if we would always worry? Would we always be holding our breath? Would we always wonder at every bruise that comes up in the future? He did his best to comfort and console as we both felt the weight of that answer. Yes. I miss the old days. I miss the worrying about little things that don't even matter now. It seems so far away that we would worry about other things that had nothing to do with sickness or blood work or chemo or hospital stays or horrible things like relapse.

3am shook me out of what little sleep we had found. I got up wondering what to do. Pray. I prayed over Brayden again. My sweet mother-in-law knew some of the fear we were facing and encouraged me to say "I trust you, Lord." That's hard. We want to trust. But do we fully? I was reminded of our Branson weekend celebration a couple weeks ago when Brayden and I were walking around before the show started. There were Bible story pictures on the wall. One was of Abraham and Isaac, with Isaac on the altar. I've thought of this story many times in the early days of diagnosis. Do we really trust God enough to let go of our precious child and give him to Him? Brayden asked about it and the air was gone out of me. I couldn't formulate the words knowing that tears were right on the edge. I told him we'd talk about it some day after only being able to say that God wanted to see if Abraham trusted Him, even with his own son. I trust you, Lord. I can't even type it without getting emotional and feeling the weight of that. I trust you, Lord. Do we really? To the core? Can we let go? I'm still learning and not there even now. I was thankful for that time in the middle of the night while working to relinquish the control I try to maintain on things that aren't mine to control. Brayden is ours but only for a time. I have to remember to keep him in God's hands.

The early morning trip to Little Rock was uneventful. Bryan and I were quiet with my thoughts still spinning out of control. I trust you, Lord. Brayden was much better, still a little nauseated, but certainly in better spirits. We learned he had grown another inch! He's getting so tall. Did we tell you about his spikes? His hair was finally long enough to start gelling again and his spikes are so adorable! Everyone couldn't believe how much hair he's had grow back and how it's starting to curl a bit! His Oncologist looked him over and remarked again how incredible Brayden looks. Other than the pollen suffering that everyone is feeling this year, he looked 'great.' We asked some gentle questions, trying not to worry Brayden. What to look for, should we be worried, how would they know if there was a 'blast' that showed up. The Leukemia starts as a blast and then quickly multiplies. So now we knew a little bit more, but I'm not sure that it helped. I trust you, Lord. It was another 2+ hours before we had the lab results. In that time, another sweet Mom who had reached out to me in the early days was there with her son. His diagnosis came at 3 and then he relapsed. Hearing her story sent that paralyzing fear through me again. I felt myself breaking apart. Bryan decided to take Brayden to walk around. I had been breathing prayers during our waiting time. Finally I stopped. I looked around and started to really see the others in the waiting room. You can tell sometimes at what stage in treatment some of the other Oncology children are in, just by their hair or the looks on the faces of the parents. But it was the other mothers that really got me. Had I missed this all along? Probably so wound up in our situation and my focus on Brayden hadn't allowed me the chance to stop and really see the others around us facing similar battles and fear. My eyes stopped on another mother whose eyes broke my heart. I felt where she was at and remembered it all too well for the first time in a while. She was holding her son with blankets and his mask on. We would have never known it was a little boy who was probably 5 or 6 who was so small and fragile. He had been crying in pain and she was consoling him. You could see she hadn't had much sleep or rest and there was that desperation there that I've felt too. I wanted to do something to help. I realized again the best thing I could do is pray. I felt so selfish for the prayers of mine that day without concern for others around me. I prayed for God to give her that much-needed reprieve and to guard her heart and to provide her a renewed spirit to continue. I pray she felt that in those moments and hours that followed.

Once the boys came back, Brayden's chemo was started and Bryan and I just looked at each other. I finally asked the nurse what I wasn't sure I wanted to know. "So I guess his blood work looked okay to get chemo?" She got another nurse to bring us the copy of the results. Everything was clear. It was such a relief. I'm mad that I allowed doubt to still creep in, but Lord, I trust You. We felt so renewed ourselves with the good news. I love that for now, Brayden was oblivious to our relief. It was another Monday of getting chemo for him. We decided to celebrate and have a rare treat and eat out...actually inside a restaurant at a table! Brayden was jumping up and down at this opportunity he knows doesn't come along often. He did SO great and was careful not to scare me too much and remembering to Germ-X AFTER touching the menu. That evening felt like a new day, like a gift. I was so thankful for that moment of relief and pray that time span until the next worry or fear that creeps up is much longer away. In the meantime, I'm remembering to work to trust Him more.

This week has been a week of loss and grief. Another sweet boy we met via Caring Bridge lost his battle with cancer. He was 8. Please say a prayer for his family during this unimaginable time of loss. He was able to be at home with them after months of chemo his cancer stopped responding and took over his little body. Then Tuesday night we were rocked to the core when we received an email. A little girl from Brayden's school had passed away. I struggled with how to tell Brayden. He's faced loss before and the comfort has been in Heaven and knowing they're in a better place. We sat Brayden down and he talked about how he knew her brother. We gently explained what had happened and we started to pray together as a family for the comfort of this family facing such incredible loss. Suddenly Brayden's grief for this other sweet boy losing his sister was just more than he could bear. It was such a tough couple of hours in comforting him. I was so worried about having the right words to say. I found myself having conversations with him about loss I had hoped to never have. I remembered the fear last year of wondering if I'd have to have those conversations with him at that time. It was hard saying the words out loud. But it was a good reminder for all of us. We're only here on this earth a short time. Please be in prayer for this grieving family as well. The next morning our thoughts were with them as we prepared for school and I dropped Brayden off. It was the last thing I wanted to do. I wanted to keep him with me all day in our little home cocoon. The faces of other parents in the parking lot said it all. I breathed prayers again as we could only imagine what this sweet Mom was feeling today.

Please remember to not take any time with our sweet children for granted. Revel in the mediocre. I love mediocre & boring! I miss those boring days with no reminders of pills or schedules or appts or checking ports or sneaking a check for fever when he's not realizing what I'm doing. Our time is so short. Which brings me to the "Dash" from the title of the post. The other sweet boy that lost his battle on Monday had his funeral this week. An amazing thing was shared at his graveside service that they shared with others on their Caring Bridge site that I wanted to share here. The premise is that on our tombstone we will all have a birth and death date, but it is the dash in between that really matters the most. The people whose lives you have touched will know what the dash really means. It doesn't matter the dates on the other sides of the dash. No matter how short, as we've felt personally in our own lives with other losses, so many have been touched. I pray today that your life has been touched in a special way through Brayden's Journey. How are we spending our dash? Please click hear to read "The Dash Poem". And I promise to work harder to trust Him if you will too?

1 comment:

  1. Lisa, I have enjoyed reading your post as you write so honestly with an open heart. It doesn't feel fair to hear and see all the pain around us. It is much easier to live in our bubble and think these things happen to other people, not us. I so wish you, Brayden and Bryan didn't have to walk this journey. Letting go of the fear from the "what if" and trusting Him is difficult but important to do daily. Some experiences are not in our control and we must pray for peace and strength as we move through it. During my most difficult times I would close my eyes and imagine Jesus with his arms around me. I believe God doesn't cause these difficult journeys for us but He is there to comfort us as we work our way through the difficult times. Trust that He will be there through it all comforting and giving you, Brayden, and Bryan strength to endure.

    Brayden is so strong and I am so proud to know him and witness his strength during this journey. He is an inspiration to many people. I feel in my heart that he will continue to amaze us all with his endurance and positive attitude.

    I love you.