Last week we touched on the topic of Special needs mom have to work extra hard on their marriages. This week will be Special Needs Mom's worry about dying.
All us mom's worry about dying...having a son with special needs doesn't make me any more "special". However when we are raising a child with many different needs...us mom's worry about our child dying, our husbands dying and leaving us alone to care for all the needs by ourselves. We also stress that we ourselves will become ill or die. We worry constantly of that, there was a time when I was having open heart surgery back when Braden was 4 years old and Kailey was 1..just a baby. I remember speaking to some of my friends...asking them if I were not to survive this surgery, please stay in my children's life, continue to support Paul. I remember talking to Paul about him moving on..choosing a woman who puts our children first, Braden's needs above anything else....It was terrifying. Such a stress to worry about all those possibilities. Obviously I recovered and I did so very quickly. Thanks to my parents...they helped Paul keep things organized and straight while I was in hospital..when I returned home from Toronto..my mom was the first on hand to take care of me. Paul returned to work eventually..and I was home with my parents who ran the show while I took some time off to get my strength back. It was a challenging time, but thankfully we survived and I could rest knowing I would be around for some time.
The fear of loosing my son's life is a whole other ball game. I worry constantly...still to this day, Its on my mind at least once a day. You always live on the edge, it sucks..but its our reality. In the early years..it was more prominent, there was a threat every winter as he would end up with pneumonia and back on life support. That subsided as he got older, unfortunatley the fears just changed they didn't disappear. Problems with his spine, breathing, spinal cord, bowels...all those things consistently threatened his life, everytime he was in hospital we would relive the fear of him dying. I guess eventually I will have to admit out loud that I have lived with so much guilt...the thought of Braden dying only added more. Theoretically to me...if he were to not survive an illness..It would be my fault. It would be due to the accident shortening his life, I will always worry for my son. I hope and pray every day that he lives a long healthy, happy life.
Us parents are constantly concerned about who will care for our child if we were to die, even when he is an adult. What happens if we were to die before having everything in order? I am always worried that Braden will end up with no funds available for his care when he is middleaged or elderly..and we will no longer be here to be his advocates.
There is so much to get worked out. I mean the plan is for him to get married someday and have his own children...just like everyone else. Being the family we are his own family will be close enough to us that they too will be "trained" to understand their fathers/husbands life and his needs that are of most important. My hopes someday is to expand to our family team, eventually adding Kaileys family to the mix. Kailey has been raised to understand her brothers life, his medical issues and even some of his financial statuses.
Paul and I made a pack very young into this life together that we would remain close as a family, raise our children to be individuals and to continue to support eachother. It is VITAL in our family that we stay close, and it is something that I will not give up on. We are also blessed to have my parents available..and it is them who take care of Paul and I, leaving us the strength to be strong for our own children.
'Well friends its late, I am tired..the last couple days have been exhausting. The hubby is home tomorrow thank god...I miss him and I need a bit of a break! So until tomorrow good night my friends and god bless~
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