My heart is heavy as I write this entry. My precious nephew Dare who was only just turned 14 has died suddenly from an aggressive brain infection. How does a family recover from this? I have no idea.
My heart breaks for my sister in law Lisa and brother in law Kirk as well as their daughter Alyssa.
This beautiful young man defied the odds by being born at 23 weeks 5 days. He was an identical twin and while in the womb had a rare condition called twin to twin transfusion syndrome. It occurs when the blood supply of one twin moves to the other the shared placenta. The twin that loses the blood is called the donor twin. The twin that receives the blood is called the recipient twin.
Both infants may have problems depending on how much blood is passed from one to the other. The donor twin may have too little blood, and the other may have too much blood. Dare was the recipient twin and his brother Sage did not survive.
I was with the couple during this time and while the local hospital put her on medications to stop her labour and buy more time. They flew her to a large city hospital and I remember watching the air ambulance fly over my head as I drove the 2-3 hour drive to catch up.
She laboured and they made the decision to resuscitate. Sage was born first and it was very sad however, her husband coached her to push and Dare came out. Very tiny at 1lb 2oz. His eyes were still fused closed. Skin translucent and head the size of an egg. He was moving and fighting though.
I will never forget that time in the delivery room after the birth as they shared the sorrow and hope and allowed me to be part of this intimate time in their lives. I will never forget when I walked to the waiting room and the grandparents, my husband and son and strangers were waiting to find out what was going on. I can vividly remember walking into that room with all these eyes on me and the rush of emotions I had when I blurted out that Dare was alive and both family and strangers wept with me.
Dares journey during that first year was not without bumps in the road. Lisa and Kirk were such a team and although they had to cope with the grief and loss of Sage they put their energy into their family and supporting Dare and each other.
Things did improve and when she came home with Dare he was still on oxygen and immune system weak. There were questions whether he would completely lose his vision. However he continued to do well and make gains.
Despite the fact he lost his vision, he thrived and grew. His parents did not allow his lack of eyesight to prevent him from living life to the fullest. He did martial arts, hiking, camping, swimming, instruments almost everything a sighted child did and were their child's advocate when he faced discrimination due to his loss of eyesight.
Dare was a delight. He almost always had a smile on his face and loved people so much, and people loved him. Although we would only get together a few times a year my husband Will grew close to him as he got older. They were laugh and talk about cars and watches. Will would tease Dare and Dare would love it and be in fits of laughter.
Dares sister Alyssa was born a few years after him, full term. They were as close as two siblings could be. Lisa home schooled them and although they were involved in many community programs, they loved spending time together.
The loss of Dare is almost too much to bear. I know that somehow we will all get through this and Dares life had meaning and although he only had 14 years on earth, he lived more fully then some people who had 80. He is still with us, I can feel him everywhere. Although he shares that he is joyful and it was his time to go- my human mind doesn't want to believe that there is a reason a child has been taken from us so young.
This type of tragedy brings the realization that life can change in a moment regardless of how careful you are and what precautions you take. It makes me question everything. It makes me wish I could get beyond this sorrow and loss faster as, who knows how much time before something changes and I will want these days back. That is the thing about grief, you don't know where it will take your thoughts and heart as it's different for everyone.
The challenge for me and I suspect many is overcoming the fear that each time our child goes out the door, that they will return intact. Monday afternoon I did not do well with this test. When my 16 year old son did not return home after school as usual, I gave him a couple of hours. But, two hours in my heart was pounding, the fear was acute and I was looking for him in my car. As with 16 year olds, he was at a fast food joint with friends and then skateboarding and "forgot". He is dealing with it in his own way too. I let him know that Mom and Dad will be on heightened anxiety so, to just be diligent in letting us know where he is and when he will return. I know for sure that I cannot control destiny and this is just one more challenge that I will need to work through. Life will unfold as it is meant to whether I worry about it or not so, I need to trust in the process. Come back to centre.
My hope is that we can take the love that Dare gave us all and that we have for Dare and share it with each other. My hope is that once we get past the shock and acute sorrow we will remember what legacy Dare would want for us. Difficult time have a way of bringing people together or driving them apart. I have had enough losses to know that together is always better and Dare I'm sure would agree.
My heart breaks for my sister in law Lisa and brother in law Kirk as well as their daughter Alyssa.
This beautiful young man defied the odds by being born at 23 weeks 5 days. He was an identical twin and while in the womb had a rare condition called twin to twin transfusion syndrome. It occurs when the blood supply of one twin moves to the other the shared placenta. The twin that loses the blood is called the donor twin. The twin that receives the blood is called the recipient twin.
Both infants may have problems depending on how much blood is passed from one to the other. The donor twin may have too little blood, and the other may have too much blood. Dare was the recipient twin and his brother Sage did not survive.
I was with the couple during this time and while the local hospital put her on medications to stop her labour and buy more time. They flew her to a large city hospital and I remember watching the air ambulance fly over my head as I drove the 2-3 hour drive to catch up.
She laboured and they made the decision to resuscitate. Sage was born first and it was very sad however, her husband coached her to push and Dare came out. Very tiny at 1lb 2oz. His eyes were still fused closed. Skin translucent and head the size of an egg. He was moving and fighting though.
I will never forget that time in the delivery room after the birth as they shared the sorrow and hope and allowed me to be part of this intimate time in their lives. I will never forget when I walked to the waiting room and the grandparents, my husband and son and strangers were waiting to find out what was going on. I can vividly remember walking into that room with all these eyes on me and the rush of emotions I had when I blurted out that Dare was alive and both family and strangers wept with me.
Dares journey during that first year was not without bumps in the road. Lisa and Kirk were such a team and although they had to cope with the grief and loss of Sage they put their energy into their family and supporting Dare and each other.
Things did improve and when she came home with Dare he was still on oxygen and immune system weak. There were questions whether he would completely lose his vision. However he continued to do well and make gains.
Despite the fact he lost his vision, he thrived and grew. His parents did not allow his lack of eyesight to prevent him from living life to the fullest. He did martial arts, hiking, camping, swimming, instruments almost everything a sighted child did and were their child's advocate when he faced discrimination due to his loss of eyesight.
Dare was a delight. He almost always had a smile on his face and loved people so much, and people loved him. Although we would only get together a few times a year my husband Will grew close to him as he got older. They were laugh and talk about cars and watches. Will would tease Dare and Dare would love it and be in fits of laughter.
Dares sister Alyssa was born a few years after him, full term. They were as close as two siblings could be. Lisa home schooled them and although they were involved in many community programs, they loved spending time together.
The loss of Dare is almost too much to bear. I know that somehow we will all get through this and Dares life had meaning and although he only had 14 years on earth, he lived more fully then some people who had 80. He is still with us, I can feel him everywhere. Although he shares that he is joyful and it was his time to go- my human mind doesn't want to believe that there is a reason a child has been taken from us so young.
This type of tragedy brings the realization that life can change in a moment regardless of how careful you are and what precautions you take. It makes me question everything. It makes me wish I could get beyond this sorrow and loss faster as, who knows how much time before something changes and I will want these days back. That is the thing about grief, you don't know where it will take your thoughts and heart as it's different for everyone.
The challenge for me and I suspect many is overcoming the fear that each time our child goes out the door, that they will return intact. Monday afternoon I did not do well with this test. When my 16 year old son did not return home after school as usual, I gave him a couple of hours. But, two hours in my heart was pounding, the fear was acute and I was looking for him in my car. As with 16 year olds, he was at a fast food joint with friends and then skateboarding and "forgot". He is dealing with it in his own way too. I let him know that Mom and Dad will be on heightened anxiety so, to just be diligent in letting us know where he is and when he will return. I know for sure that I cannot control destiny and this is just one more challenge that I will need to work through. Life will unfold as it is meant to whether I worry about it or not so, I need to trust in the process. Come back to centre.
My hope is that we can take the love that Dare gave us all and that we have for Dare and share it with each other. My hope is that once we get past the shock and acute sorrow we will remember what legacy Dare would want for us. Difficult time have a way of bringing people together or driving them apart. I have had enough losses to know that together is always better and Dare I'm sure would agree.
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