I can't tell you how painful it is to be told that your child has a matter of weeks to live. The closest I can possibly describe is having the wind blown out of your body and an invisible force grabs hold of your guts and twists them, pain ebbing through every nerve in your body. The shock and grief has such an impact it's hard to compose yourself (at least that's how it is for me) and it stifles how your mind and body functions, I lost all sense of time, it felt like I was walking through a slowed down version of time and space, everyone else giggle and chatting to friends and family, writing and working on their laptops throughout the train carriage as my world was destroyed in one conversation. Six to eight weeks is such a short time to keep someone close to you and when they talk about the possibilities of how death will come to your child, the harrowing unknown is devastating and the reality is showing you hope will never come.
July the 1st is the predicted expiration date for our beautiful Dexter, at the beginning we approached the weeks with ferocious spirit and force insuring to get the Disney immediately, to do everything sooner rather than later, thinking by this point he wouldn't be the fun loving spirit he is, that he would have lost his love for life, his appetite and his ability to play, but he's not in in bed, he's still demanding and fun, he still wants to do everything, see everything and be included in everything, he's so much better than the weeks he was recovering from chemotherapy, he's functioning on one 12 microgram transdermal patch that we switch out every 72 hrs, he's just incredible and I can't believe things are as good as they are, we are so grateful.
At the same time we are so confused, its hard for the brain to understand being told something has such a blunt cut off, and that the life Dexter and our whole family has fought for must come to an end, nothing can rationalise it at this age, nothing can make sense of it and it will hurt us forever, it will never heal it will be a loss and wound we will carry forever. Grey and old, if we're lucky enough to get there, memories of our beautiful family and the lives they have lived and the things they have accomplished will be glorious, but inside we'll always miss and long for the member of our family that should have lived, that deserved their future, it will always hurt and I hate to think of him alone somewhere without us. I wish I had the power to prevent this looming tragedy.
The brain further more plays tricks, makes us doubt we'll ever lose Dexter because the last eight weeks have been so busy and full , so joyful and perfect, it feels like might this go on for longer, might this go on till my sisters wedding on the 17th August or to his 8th birthday on the 18th of August, its hard to imagine him not being here by then and yet then you think of a further eight weeks, can his tiny little body that's taking in a fraction of the food and nutrients it should, continue and carry on? Because of Dexters stoic nature, we think maybe he can? Who knows but I hope he can.
Now because we've seen this tumour grow twice in his life time, the first time so fast and aggressively and this time it feels slower and less aggressively, little thoughts like, maybe its stopped growing, maybe its not going to kill him, maybe it will just be there and nothing more. It's silly thoughts that even our own minds can't believe full heartedly but for a moment, it's nice to believe the dream.
Now we have nearly overcome the medics deadlines, what next? Just keep going. Jacks not working, I feel often unable to write, work, function and make plans, there's nothing were able to commit to, its so difficult to think of life after Dex but so confusing and frustrating to not be able to think of any goals, wants of desires for the coming months, because despite the desire of wanting to build our little business, do our dissertation or think about any of our goals we made in march, all we really want is the life we had in January. The one where we had all our children, happy and healthy (to a point) and all the time in the world to build and make our dreams and goals reality. I still want it all, I want all of our children, I want realm runner studios to find success, I want to see and socialise with our friends, hang out and enjoy time with their children. See our family and go on holidays. I don't want a future where despite our achievements, our family will never be complete, were I can laugh and be myself for an occasion but I'll cry in the bath when the kids are sleeping or at 3am because I can't sleep peacefully how I once could. The future where I have to see the little broken shards of Jacks broken heart patched together and my children who will feel a loss, I can't understand, their pain is unique to them, we've lost our child but they've lost their brother.
We are exhausted in limbo, waiting for the worst, wondering when the decline will begin and as the journey starts to take its toll, the fatigue sets in as the summer sun arrives and we are tired, we are strained and we feel broken for all the strength we pitch into it. Jack and I are a power couple, not in conventional sense, were not taking the rat race by storm and living in central New York but we are facing everything, their is no hiding. We have been a force trying to fight this cancer the last two year, no one could throw us off course and our children have been our sole focus. There have been so many tough external factors, this week we tried in our way to fix some of the external relationships that have been damaged. Its an extra strain neither me and Jack need to carry, people have their own excuses and beliefs to justify their own behaviours but at the end of the day, being a bigger person and overlooking their downfalls or misgivings can bring clarity if its easier on both parties in the long run. Some things will never be the same, but I think that's ok, some things aren't forgivable and we don't have to forgive them, they are markers to remember, but facing them and maybe saying them out loud takes the power from shit things people say and do, and it sounds fucking ridiculous beside a real traumatic life situation like our own, but it doesn't mean, facing issues isn't exhausting and we are clearing everything up now because who knows if we'll care enough to address anything after Dexter leaves us.
The last two years has been so difficult and gruelling but the strength from our teams of supporters has carried us forward and we will continue to lean onto our nearest and dearest in the darkest days. We have felt so much love in this time and when its all over and it all goes quiet, we know that those loved ones will still be there for the tears and the low days. Its just hard right now to imagine that time, but one things for sure, Jack and I plan to keep building and living our lives because it would be a dishonour to Dex to do otherwise, he is fighting so hard every day to live, we can't just lay down and wilt after seeing him strive to live so hard. He's just the most amazing soul we all have the pleasure to know and his power is something I can't believe Jack and I brought into this world, we are witnessing something so special.
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