Stop Doing

Struggling to get motivated in the studio, in life. My therapist says I should stopping doing but the last time someone said that and I followed the advice my son died. He slipped out of my life almost instantly and that kind of not doing can't be undone. Living with Julius gone long term is different than the idea or the possibility. It is grinding by day by day. very slowly. painfully. It seems wrong that he will not come back to us. Initially it felt like a punishment that would be over soon but it has not end and it won't I'm told.

Today I was having an idea about shoes. That I could give baby shoes to someone since I never got to buy shoes for my son maybe it would be good to do it for others. Repair.

Heal and hold

 http://www.babycenter.com/0_your-15-month-olds-physical-development-moving-forward_5172.bc

Today this website sent an email to tell me that Julius is 15 months old, that he is probably walking by now and might begin biting others kids. I did kind of laugh at the last one but the rest of it stung. I know a lot of people wonder— how we are doing? The short answer is we are doing ok. Some days are harder than others and some are excruciating but mostly there is a blanket of sad, its too quite and lonely over our daily experience even the moments of laughter and fun are tainted by absence. The weekends and evenings are especially hard. We see families frolic at the beach and I deeply long to be one of them. I am moved to pick up every crying child but cannot. My need to mother and parent is as strong as it should be for someone who has a toddling 15 month old but I am squashing back my need to chase and nurture, heal and hold. Instead I am marking a backward timeline of milestones that were not hit, things we did not buy and moments we will not remember.

Things that are Hard

Hello!

I've got so much on my mind it is hard to even know where to begin. I've finally been able to touch base with each of you by phone and I am so grateful to each of you for continuing to reach out to me despite my distance. It has been very hard for me to call. It is hard for me to pull myself out of my little bubble and 'be' with anyone right now even though my instincts tell me that what I am avoiding is in fact what I most need—Connection.

The distance I feel out here in Hawaii is significant and challenging. It feels strange and alienating that we did not have a memorial service for Julius. It feels wrong. Empty.
We have been swirling in our little bubble of function and survival. Get up, brush teeth, have tea, work, missing Julius, missing Julius, missing Julius- we are trying to find meaning in life again. During the day, out in the world with other people it seems easier to go through the motions of life but at night we often cry ourselves to sleep. We are getting by and sometimes we are even really enjoying life again. I enjoy my job at the flower shop and it gives me a healthy sense of purpose. I worked 96 hours in two weeks during Valentines and now I am down to part time 2 days per wk (a much better balance for me right now). I enjoy doing large funeral arrangements for other grieving families and twice now I created a small heart shaped floral piece that was going into a child's casket. I take special pride in knowing that my work may give comfort to other grief stricken families and I am grateful that I have the strength to do this work. I do realize that this is not normal. Not many grieving mothers would go out and get a job she has not worked in for over 10 years 3 weeks after she lost a child but for me somehow this seemed right and I do think it has benefited me greatly to get out of the house and back into the world in a meaningful way. It gives me a sense of purpose and confidence that I forgotten was important and I still LOVE flowers so that is great.

We have recently been able to go out with coworkers for dinner and drinks, we've been hiking on weekends and jogging in the evenings. We are trying to stay focused on getting our health back but it is very hard as emotional exhaustion gets in the way. Enjoying these things feels strange. Spending the night watching TV or even most of a day off on the sofa often wins out.

Things that are hard.

• I have not spoken with either of my brothers since my son died.
• The helium balloons we got for Julius for Christmas are nearly deflated.
• There is a ball that Julius used to play with under our TV console. I can't bare to pick it up.
• I have a beautiful hand knit sweater that Julius never got to wear. It is one of the favorite things that he received I was so looking forward to seeing him in it. What do I do with it now?
• Add to this category: a never worn knit cap, so many sweet toys, books, and stuffed animals (at least he got to play with these), medical equipment such as tubes and feeding bags are cluttering my closet- I cringe every time I open it, so many baby clothes and blankets that suddenly seem so tiny.
• At home in New Jersey I have set of stunning little silver boxes engraved with Julius name and birth date on them. One is for a lock of hair, one, is for his first teeth. I couldn't bare to cut a lock of his hair when he died. I brought scissors to the mortuary for this purpose but it just did not feel right. Some of his baby teeth are there among the dust of his cremated remains and I have touched them and pulled a few aside, however, it just isn't at all the same. I don't think I'll ever be able to fill those boxes.
• Nothing smells like Julius. I saved the blanket and outfit he was wearing the morning he died in hopes that it would smell like him. It doesn't.
• Our bed is very empty and lonely. We are together but we are alone.
• Sadness is a very solitary experience. It is hard to share.
• Julius never wore shoes. This make me so sad because baby shoe are so sweet I'd imagined getting him some really cool little shoes and he just never needed them since he never even put his feet down. Tragic.
• I never got those new born portraits done. I wanted to. I meant to I even looked up photographers but it got shuffled away in the chaos.

Things that make me Happy.

• Saying good night to Julius every night when the sunsets.
• Talking to his big framed picture. Telling him I miss him. saying good morning ect..
• Looking at videos of him. I did take a lot.
• Cleaning and reorganizing his little temple area. I have his cremated remains, photos, little gifts that people have sent me and his favorite toy on a shelf in our living room.
• Talking about Julius. I love to talk about him, show people his pictures and hear his name.
• Getting cards and letters in the mail.
• Starting the process of sending thank you notes.
• Painting. I love my new class called the Power of Suggestion.
• Hearing from my girls friends— texts, phone, calls -emails I love being in the loop. Keep telling me about your world. I love to know whats going on. Yes- sharing all the fun and lite stuff is good keep it coming.

Ok. That's all for now. It felt good to write this, to share and let you all know about my world. It is hard to write it out but it feels good at the same time. Keep telling me about your world too. I am eager to know about how everything is going, your highs and lows, big accomplishments and hard days. Bring it on.

Much love,
Denise

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

Birthdays and Death Anniversaries

I refilled the helium balloons I bought for Julius at Christmas time. Shark and Santa Claus popped early on, Dolphin and Turtle were completely deflated and my favorite Fishy was the only survivor barely hanging on as he started drooping midair. Deflated helium balloons are pretty depressing as are so many items that were left lying around the house after Julius died. His favorite ball dusty under the TV console, a plush whale I hold in bed with me each night, medical supplies that make me cringe each time I open my closet and his special closet full of clothes, books and baby products in cute yellow packaging are all unsettling reminders of the adorable child who no longer needs them. 

 

Since I fill helium balloons on a regular basis at the flower shop where I work I finally got the motivation to bring Fishy, Turtle and Dolphin in and see if I could breathe new life into them. It was no small task as the large balloons were only mostly deflated and I generally ride the bus to work. I managed to get the unwieldy things back home in one piece despite the winds attempt to destroy them as I tried to carry them home. 

 Today is Julius's 9 month birthday and it has been just over 2 months since he took his last breath in our bed. Julius was nearly 7 months old. In his final moments, my husband and I tried to cheerfully sing Happy Birthday to him while choking back our tears. It was his favorite song and we wanted him to know how very much we loved him as we said our final good byes.  I find these birthdays and death anniversaries to be very painful and I've been trying to find ways to make them a bit more bare able. Embracing things that Julius loved such as songs, toys, using his nickname often and saying good night to him everyday when the sunsets helps me stay spiritually connected to him. 

So today Julius would have been nine months old and I am thinking of ways that I can honor him and make this a special day. I have the balloons fully inflated they look as fresh as the day they were delivered, I have three cupcakes with candles and just by chance a friend sent a beautiful bouquet of sunny flowers that arrived today. Tonight we will sing Happy Birthday to Julius as the sunsets.