I sincerely try not to think about the future as much as I do, but what might happen in the future just creeps in sometimes. I’ll be driving down the road, see some teenagers leaving high school and wonder about Gage and Quinn as teenagers.
I wonder about the regular things…what trouble they’ll give us, how their grades will be, if they will be involved with school groups, and if they will be liked by their peers. Those thoughts usually lead me to the not-so-pretty thoughts about their future as well. Like declining kidney function and how that will affect them physically. Will they have to go on dialysis? I think about how old they will be when they have transplants and if we’ll be able to donate kidneys to them. I wonder about how being sick will change them emotionally and socially. When time permits my thoughts to wonder more, I think about how they will get insurance after college, if we’ll have the money to help them with the drugs they will need for the rest of their lives.
From 0-60 seconds I can enter the other side – by leaping. When I’m particularly vulnerable to frightening thoughts about the kids’ futures I think about how horrible my life would be if they die due to complications from this disease. It’s impossible to stop my mind from progressing from something as normal as seeing teenagers walking near a high school to thinking about the mortality of my kids.
It would be so wonderful to be able to skip along and only let my thoughts go as far as they need to in order to handle the kids’ current problems. Why do I leap when I should skip?
Perhaps it is a future coping mechanism. Like a Chronic Illness Readiness exercise. Perhaps I won’t be blindsided by disease progression. As much as I’d like to believe that I think I know it’s not true. I’m just going to try to skip as much as possible and leap when I have to.

Enjoy the moment before it is gone. They never turn out like we plan but with love they are an awesome bunch of fun.
Dear Julia,
I have now visited your web site twice and today have completed a journey into your incredible life and the lives of your amazing family. Truly inspirational!!
During that journey I have cried more than I have this year. Your entries have hit the very heart of all I am feeling at the moment. Almost as if you read my mind and wrote for me what I have wanted to say for so long. I shared some of it with my husband last night, and he too was very moved.
Helping Someone: 101 reduced me to tears for much of what was written. I like yourself feel ‘guilty’ asking for help because my friends are also very busy with their own lives. I do not like to dwell on the sadness I feel each time Matthew is in pain or looks unwell, and my friends find it difficult finding the right words to say or how to help in a crisis. So sometimes it is better to just leave things unsaid.. Great for them, but it’s killing me.
Matthew’s illness has changed my/our life. This is not what I wanted, nor what I had secretly hoped for. It’s hard to always be so positive, even though I try, and to wear a smile on my face when my heart feels as though it has broken in two.
I would love nothing more than for life to go back to ‘normal’ and for my family to enjoy the everyday things that for such a long time were a huge part of our lives, that now seem almost impossible!
I thank you for the great strength that you have unsuspectingly given me and for unconsciously helping me to deal with and address the issues that have been eating at me for sooo long. There are days I honestly do not know who to turn to for help. My husband Andrew is fantastic, but he too has his own issues to deal with regarding what lay ahead.
You have done such a beautiful job of putting this fabulous site togther and the photo’s of your children are divine.
I am so pleased to have found you, even if you are half a world away.. You and you family are in my thoughts and prayers always.
Thank you… This is just what I needed.
Alex
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