Valentines Day. Hmmm, I noticed. Interesting.
Well, here we are. This is it, the early morning hours before the rest of our lives. This is the day. It is truly an odd feeling to sit here in front of my computer this morning. I can't really explain the sensation. First off, I am calm and strangely some how at peace. In one sense, prayers have been answered. I have strength. Yesterday was an incredibly beautiful day with my children. Oddly, it was really no different than any other. Now, I did pick up Sydney from school at noon to take her down to the hospital for her MIBG injection and her second of four IVs this week. That went particularly well and I can tell you that we have nurses Linda and Carla to thank for that. Regardless, it was very routine stuff. We read books. We sat in the waiting room. Lynley talked to Sydney while I shortened her jump rope. There was nothing else. Just us.
Later that afternoon Sydney and I would pick up the others from school. We would giggle and chat on the way home in the car. Once at the house Graham and Sydney made a beeline to climb the fence and disappear into the back yard. Ainsley and I would go in the traditional way (through the door) and make everyone juice and snacks. After that there would be cleaning the leaves out of the pool, climbing trees, jumping on the trampoline, pretend play in the playhouse, chasing the dogs, and various other normal activities. Later on there would be such routine tasks as making dinner and eating. The day would be capped off with stuffing the kiddos in their jammies, a little tickling, and some kisses goodnight.
See, I told you - routine. It was really no different than any other day. So what made this day so incredibly beautiful and special? Why would I rank this up there as one of the best days of my life? The one great thing that neuroblastoma brings into your life is perspective. I liken it to one of those machines that optometrists use to get the proper prescription. You know the one. The machine that you look through. There are lots of lenses and clicking. You look through the lens, they change the lens and then ask you which is better. Many of them are blurry but eventually, when you finally get the right lens, everything becomes crystal clear. It is the same eye chart that you were looking at before but all of a sudden you can see it with such clarity. You can see every detail of the letters and even the words "Made in the USA" can be made out along the bottom of the page. It is revolutionary. It is clarity. It is a miracle. You can see!
Neuroblastoma has the same effect. Although it will not improve your eyesight, it will certainly give you the focus to see what is important. It is clarity in life. The immediate sense of what is important. It is appreciation. It is an entirely new perspective. It so clearly defines purpose that there is no doubt.
I am a typical parent. I am no more or less special than any other. Just like others, I get caught up in life. I am lucky. I have a neat job. I get to fight for kids like Sydney everyday. I get to "do" something about it every day. However, just like any other person, I also have the habit of getting too wrapped up in my work. I come home worried about another child, concerned about whether a drug is going to be released so that we can open another trial, or thinking of another family who needs some help in making a tough decision. The list goes on. I get so consumed with my work that I sometimes forget to sit back and appreciate the wonderful family I have. I let stress, work, and everything else get in the way. This is not to say that I am a bad dad. I pay attention to them. I play with them everyday. I am physically there - just not mentally.
That was what yesterday was for me. It was my time to get in touch with my family - to prioritize them, not only in body but in my mind. I had the opportunity to once again see life through my own children's eyes. I had forgotten what a beautiful world it could be. I am such a lucky, lucky man. I have the greatest family in the world and I know that - again.
So, here I sit. In a little over 4 hours from now I will have a very good idea of whether this will be the best day of my life or the worst. It is just so odd to be sitting here and know that the answers sit so closely on the horizon. I am still strangely calm. I am confident in knowing that no matter what happens that we will get through it. I never want to forget this feeling. I never want to forget what I have again. Today we will get either great or horrible news but the one thing I promise is that I will never forget what yesterday gave me. You may find us shouting with joy or huddled in tears but you will find us together - completely.
At about 8:30 this morning Sydney will begin her MIBG scan. There is no doubt in my mind that by 9:00 AM I will have a clear picture of Sydney's arm on the screen. I will know if that spot lights up or not and whether our worst terror has been realized. The spot will either be there or it won't. If it is there then we will know for sure it is a relapse. If not, we will have hope that it could still be something else. God, please don't let it be there. Don't let this be a relapse.
This scan will be followed by a trip across the street to the clinic where Sydney will have a quick check up before her bone marrow aspiration at noon. Amongst all of this, at some point, it is likely that we will have an x-ray of her right arm. Boy do I hope it is necessary.
Although the thoughts have been through my head a thousand times it is to early to speculate what all of this will mean. There are so many possibilities that could come from today. There is still a long process ahead to truly figure out what is going on. We need success with each and every test.
So, here we go.
I will do my best to update as I can throughout the day. Obviously there will be issues with internet access and time to sit and write but, I will do my best to let you know where we stand. Your prayers are being felt.
With hope, purpose and perspective,
Mark
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