When you get a diagnosis for cancer or any disease you immediately know that it is life changing for that person. You spend so much time focusing on the person affected making sure that you can be there for every step of their battle. When someone gets sick, it is human nature to want to help and take care of that person.
From the moment we found Katie's mass, I became her advocate, one of her biggest supporters, and she became my drive and purpose in life. Every step of Katie's battle I have fought along side her and hoped that I could bring her some peace and comfort. We have spent that last 37 months and 17 days fighting. Fighting for her, fighting with her, fighting for a cure, fighting the system, fighting doctors, fighting for a miracle....just fighting with everything we have to change Katie's path. When Katie was granted a small break from all the medicines, needles, labs, and appointments my heart felt relieved. The fighting can stop for just a little bit and we can get a break.
When I finally slowed down, stopped fighting, and sat back for the first time in over 2 1/2 years, thats when I realized how much damage has occurred. All the time I have spent away with Katie at appointments, chemotherapies, hotels, hospital stays, road trips for fundraisers, or Castleman's events, I always looked at it as Katie and I had the hard job....we had to leave. But I never stopped long enough in all the chaos to look back and see who had to stay behind. Michael and I from day one laid out our roles in this new life we had. I knew that he had to work, and even though his heart was in pieces every time Katie and I loaded up into the car for our 4 hour drive to her oncologist, he knew he had a job to do. He has always been our protector, our soldier, our hero, and our provider, and I know that a large piece of his heart broke when he realized he couldn't protect Katie from this. However I also know that we had each other to lean on and talk everything through. Even when he couldn't be with us the updates were constant and the FaceTime conversations were frequent. We are adults, I know that no matter how much our hearts ache, we can and will get through it.
What I failed miserably to see is the damage all this was doing to David. My beautiful, kind hearted, loving, compassionate son was watching me leave with Katie in tow over and over again and I stupidly missed all the signs that he was breaking. My ability to handle everything as it comes and stress about it later personality backfired. I was handling Katie, I was helping her and carrying her through her battle, all the while allowing my son to endure a battle and fears he could not explain, and with no one to help him through it. I thought I had done a great job explaining to him what he needed to know and sheltering him from the worries that no child should have to know about. What I missed, what I somehow failed to see, was that all those fears were there anyway, and without having someone to talk him through it, he formed his own thoughts about them.
We have had a hard month learning all of David's emotions.
He is angry, he is scared, he is confused, and most importantly he feels alone. How did I let this happen?? He is so scared that God will take Katie away from him, that one day I will leave with her for her doctor appointment and not bring her home. He is scared that he will have to see her get sicker or that he will have to visit her in the hospital again. He is also so angry. Angry that she is sick, Angry that I have to be away with her, Angry that I have to spend more time with her, Angry that he has to be scared. He is so confused about why this is happening. To a child, only older people get sick, only older people go to Heaven. He doesn't understand why his sister has to be sick. He is angry at himself because they are typical siblings who fight. But when they fight and he gets mad at her for being in his way he immediately gets angry at himself for being angry with his sister, because what if that is the last time he gets to fight with her. All the things I have worried about, I never imagined that my 8 year old would also be feeling them. My heart hurts that I missed them.
How did I allow myself to get so wrapped up in Katie's fight that I missed Davids?? How do I mend his heart, calm his fears, remove his worries, and rebuild the little boy we had 0ver 30 months ago? And selfishly, how do I make it through the hard conversations? It took everything in my being to make it through the conversation we had when he asked me if Katie had to go to heaven soon. It took everything in me not to break down in uncontrollable sobs when he said in his bedtime prayers that he was thankful that God gave him another day with his sister. This year will not be an easy one. Though Katie is in a good place care wise, and we have found a medicine regimen that seems to work for her body right now, we have so many other struggles occurring alongside hers. Continue to pray for our family, especially Katie, but also my beautiful David. His emotions are high and with the upcoming deployment and endless nights of training for Michael he is feeling pretty defeated. So, as I continue to walk on Katie's path with her through her battle, I am now finding a way to walk many paths at the same time.
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