Julius is dying

I was laying in bed tonight agonized and tearful. In this state, I was mentally writing you a long note explaining many of my recent experiences and feelings. Finally I got up to write a note to share my thoughts and let you know what is going in my world.
 

Julius is dying. 

There is such a finality to that sentence that I am sure it 
is as unbearable to read as it is to write. There will be no last minute miracle and no come back story of triumph over evil to tell. Our life is not like the movies and there is no resonating background soundtrack to bring our story all together in a neat and heart warming redemptive package. The story that is unfolding is a hard one. It is difficult for me to put it into words to share it with you but I will try.


Today I resuscitated Julius 5 times. He suddenly and often unexpectedly chokes on his own fluids as he is unable to swallow or cough and so I help him cough it out with a machine called a Cough Assist. It is quite forceful and with 15 to 20 hard push pulls I can clear his secretions by suctioning the fluids out. I stick a wand attached to a powerful suction machine down his throat to clear anything that might be chocking on. I have discovered that his technique is very effective and I have become good at it. Sometimes Julius can go from blue to quite alert and smiling in a matter of minutes. I have successfully resuscitated Julius no less than 11 times and I have come to expect that this is something I WILL be successful at. It is just astounding to me what he goes through everyday and then smiles at me minutes later. He is happy to be alive and he appears glad that I saved him. I am dumbfounded.

My experience of this is very hard. Every emotion that is possible floods my mind. I think ok this is good Julius is dying his suffering can end now— I tell him I love him repeatedly and I kiss his face and touch him a lot. Then my adrenaline kicks in, it feels wrong to let your child die. I recognize that it is within my power to alleviate his suffering and I quickly and efficiently get to work getting him un stuck. Suddenly he is back and I feel a flood of gratitude I get one more hour perhaps one more day...maybe a month of his sweet smiles? Afterwards, I feel guilty because I believe I hurt him in the process of 'saving' him. I apologize and I love on him as much as possible. I question myself —Should I do it again next time?  Will it work? Can I do it again?. These are very difficult questions. It has been going on like this for days now and I am exhausted. This exhaustion is piled on top of other exhaustion— from his birth, from months of sleeplessness, from deep rooted sadness. I don't recognized the beginning or ending of each. I sense that a small part of me is dying everyday (I know it is not, I know that I WILL be ok). I am often not even aware that this strange space of tiredness exists until I walk outside into the world of other people. Energetic happy people who do not have children that are dying. People bopping along in their day. Christmas shopping, meeting for happy hour, going to the gym ect. I like to see these people. I like to be extra friendly and strike up a conversation and live in their worlds for a just a few moments. It wakes me up. I helps me realize that I will not always feel this way.

Some days we take Julius out on the town. We load up his equipment, ventilator, suction machine, batteries, cords, cables and feeding pump and we go out for a walk. People look and ask questions but I do not feel sad, I do not feel strange or angry. Instead I feel very proud. I want to show off and share my delightful son. I excitedly talk with everyone and I am delighted to get out of the house and be normal for a few hours as we walk around town. Getting out is a lot of work, but it feels so good.
 

Our Christmas was incident free and perfect in every way. Julius was clearly delighted with all the hub bub, new toys, extra special attention ect.. and we all smiled and laughed. It was a good day!

Today we did a photo session with a volunteer who works for a group called- Now I Lay Me Down to Sleep. She was lovely and did a great photo session with our whole family. It was wonderful. This organization typically photographs people who's children are stillborn, arrive prematurely or with severe complications and the photo shoots are generally done right at the hospital. I felt super lucky to have them do this for us and that we had a nearly 7 month old son who we have enjoyed so much time with at home. Our Hospice program set this up for us (M-Thanks for sending the info on this) Hospice Hawaii will begin officially supporting us tomorrow and I believe the time is right for support. We all need it.
 

Ok- I think I covered some important topics and I hope this was somewhat coherent. I've got to get some sleep now.

BTW Hawaii is wonderful. I have not seen much of the island since I got here but just looking out at the sparkling sea everyday and living in a downtown and basking in warm air and sunshine is very good. It was a great choice for us.

Much Love. Denise