Thursday, November 26, 2015


Today is Thanksgiving. It is also the one year anniversary of the unexpected death of my first born son and light of my life. It was because of him that I became a mother and because of him that I became a better mother. It was through his struggles that I learned how to care so deeply and constantly for someone other than myself. The road to motherhood was not an easy one for me. I thought I was prepared with many years of childcare experience and a degree in psychology and teaching under my belt. We had a textbook pregnancy and the only thing out of the ordinary was the quickness with which my new husband and I had gotten together, got pregnant and then gotten married all within the first year. When Jasper was born after a strenuous 3 day labor the doctor took one look at the ash colored baby boy who looked just like his dad and swept him away to try to get him oxygen. The efforts of the doctors did not keep him from the resulting brain damage of almost 10 minutes without oxygen while in the birth canal. He was still our perfect boy. He started having seizures and we started taking him to SF for doctor visits and medical procedures. It was a long first year, during which I found out I was pregnant with our second son who would be only 14 months younger than this little precious baby who needed so much care and attention. We had no idea how we would do this insurmountable task of helping our brain-injured son thrive and have another baby to care for.
It was just before Halloween of 2005 when Jonah the little brother came into the world. He was healthy, perfect and started nursing right away.  His birth was not without complications but the doctor who was there handled the minor shoulder distocia expertly and got that 9.5lb baby out without incident, I remember being touched to see tears running down my husband's face with happiness and relief as he (the baby) stared nursing like a pro at only 2 minutes old. We had already been through so much from nights in the hospital with electrodes taped to our tiny baby's head, (who already had a hard time sleeping!) to injecting him with daily needles full of anti seizure medications to stop from possibly developing sometimes fatal infantile seizures.
With his little brother Jonah by his side Jasper survived and thrived and we all learned a lot together. We learned about unconditional love, we learned about being more than our body. We learned that our nutrition and elimination are paramount to good mood and we learned that getting out and just going can be a thrill in itself. We learned so much more than I can write at this moment because I have a sweet monkey of a two year old hanging on me (she has her own story :) at the moment and its Thanksgiving so I need to go and enjoy those precious moments, which is another thing I learned from the short and precious time I had with my son.
I never knew that the last day with him would be the last. I always told him how much I loved him and lived by the principle that you should treat your loved ones as if this was the last day you would see them, but I never really thought it would happen to me, I never thought it would be him. I didn't take his life for granted and I always worried about his safety and health but I never let myself think that he might actually die before I did. I heard it was possible from doctors and other parents, but they didn't know my son and how healthy he really was. But all the good food and love and exercise and sleep we gave him didn't protect him from his own brain and sometime in his sleep cycle his brain had a seizure that stopped his heart and within minutes he had passed to the other side. I have talked to doctors and specialists and found that the belief is that when this happens the body does not wake up nor is conscious of what is happening.
So I believe he was sleeping, and dreaming he was flying, and he was flying so high and it was so real and then the seizure happened and he slipped peacefully into another dimension where his soul and spirit really did fly away and left his perfect body with a smile on his face with no apparent suffering for all of us to miss and mourn and cry for. We love him and wish he was here but if he can't be then I want to think he is part of the wind and the rain and each teardrop we cry for him and every smile we give each other when we think of his funny laugh or his great big chuckle or his sly grin.  I am crying now, it hurts a lot to miss that wonderful boy, but I have to believe he is still here with us and guiding us along in this journey but now we have to look harder for him.








The other day when I was making tea I dropped in an ice cube to cool it down, and I was thinking of how solid and real that piece of ice seemed, so strong and sharp and cold, how quickly it changed from that solid shape to a free form existence when I melted it in my tea. It was still very much there, in my tea, but now I couldn't see it or hold it or feel it's cool temperature. No one will slip on it or have it dropped down their shirt for a prank, no one will cool their burn with it or place it on a plate of oysters, it's time as an ice cube was up, but now it did something different. It made my tea cooler, and now it became a part of me when I drank the tea, and then it went back to the earth by way of me to once again become part of the constant cycle of nature.
Anyone with a child with special needs has read the prose about the experience being somewhat like being all packed and ready to go with all your friends to Italy except that when you get off the plane you find you are in Holland. At first you are disappointed, disoriented, or confused about why you are in Holland when everyone else is doing great in Italy, then you begin to see and appreciate the beauty that is there in Holland. We went through that and we frikking loved Holland!!!! Now all of a sudden our family has been moved without warning to the hustle and bustle of  Italy and we only speak Dutch.  We are getting slowly used to this new life but we miss our old life and we miss our Jasper James. The other day Jillian asked why can't we take him out of our hearts now and have him back? Well I guess its a good enough idea so I'm going to try to take my Jasper out of just my heart and live like I'm still in Holland picking tulips with my sweet boy until someday maybe I'll get to be an angel with him and watch over everyone too. If anyone can do it Jasper and Jenna Can!

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