grieving and loss

 In the past 5 years there has been one thing that has changed in my life more than any other. Finding other families on Facebook has been such a blessing in many ways and it has also brought me closer to the idea that none of us are safe in this world from the hurts that come along with disorders. I had never thought much about Noah ever leaving this world. I suppose initially when he was born and the Dr's reminded me daily he was on "borrowed time" It was a reality but at that stage he was doing so much better than I ever imagined I guess It was never a thought that stuck in my head to the degree it does now.
 Even when Noah was seizing daily and we could not control them did I ever once think about death the way I do now. A silent fear that is my last thought each night. It is gripping.

 As the last 5 years have passed and I have met families and mothers that have lost children facing the same disorder as Noah I cannot help but feel the thought is much more real than ever before. There is no difference in their children and mine., They are the same. Their moms love them just as much. Some are less or more complicated but none of them have some date that we know this could happen. So we just try to push it into the back of our minds. With the hope it won't happen to our family.
 It is something us as parents do not talk about enough. We all have these thoughts and fears, we email each other privately but it is something we feel cannot be posted for all to see for fear it will upset other parents. For me I have recently been reaching out to my father. I talk to him every day This has all begun the last two years where I beg him to watch over us, keep us strong and the hardest of all to be there if anything were to happen. I know I cannot be the only person in my own support groups and pages worried nonstop but I think most people are too afraid to say anything.

 I also may be more open with all of this because watching my fathers suicide unfold before me I have a realistic thought of how quickly people are taken away from us. Even though we know our parents will not always be here, there is nothing that can quite prepare someone for that finite moment you know there will be no more calls, no more birthday cards, no hugs and laughs. There is never enough time and I had to let go of those things long ago with dad. I waited for 2 years after his death to just appear in front of me and give me some sign there was something more out there I just could not see. Other than dreams and my own thoughts that never happened so I have to just believe in my heart somewhere my father is out there in a happier place holding a place for the rest of my family. It is all I have.
 I also will say this without hesitation. I would always choose quantity and quality for Noah but I am also human, I could not allow him to suffer in this world knowing the only reason I was keeping him here was to appease my own selfishness by not wanting to let him go. I applaud parents that are so brave that they can let go even when they do not want to. It has to be the most difficult decision one ever has to make. We are not suppose to outlive our children. It is a hard pill to swallow. I cannot even imagine how some parents get through that except I would hope I would be in the same mindset. that when our children are no longer the child we remember but another human in pain and suffering that we allow ourselves to swallow our selfishness and let go. Knowing they will be at much more peace and not in pain. But still that thought is just so hard to imagine.
 Is it possible that in this situation, families like mine that we are preparing for our children to leave us from the time they are born? Wow that just struck me that parents like me have to have that thought as well. I know for sure at Noah's beginning life I was told so much that he would never live 1 year I had decided to make that year one of the most amazing ever. 13 years later I still live that way. Every day is going to be the last.
 I do not know if it is the many factors Noah is facing in the last couple of years or just seeing so many beautiful souls leave this world that have Noah's same disorder but I feel compelled to speak and say it is a constant worry.; Even though I do not think I myself could ever be fully prepared for in this lifetime It is something that has been in my mind since the first day I learned he would have Schizencephaly. SO technically speaking I have thought or been told to think about Noah's life ending 5 months before he was even born. I do not think there is any other way I could have lived since I have been warned since his diagnosis that this is something we must all prepare for. But still the thoughts when you lay down at night can become so intense it makes you feel sick. I cry much more than I ever did years ago. I have watched so many simple things being taken from Noah, Crawling, Casting, Broken bones, even eating. It has become a much more real feeling and one that is not as easily dismissed as it was when he was not regressing in life. Back in those days I was able to focus on all the things that he was doing and should have never been doing. I felt like we were defeating this crap disorder I have learned to hate. Instead I find now years later all those emotions return to the beginning when we are fighting tooth and nail to make strides. It is hard

 I have no doubt Noah will be here a long time more and he has a good fight in him still but I cannot help but think at what point will I allow myself to let go when his fight is over. And will that day come sooner than later? And if this is what I have weighing on my heart all the time , why is it that I am the only one talking about it?

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