I miss my Mom

 Robbie and I had a conversation a few days ago- which prompted  me to write this blog.  " Mom are you happy? Your mom is in heaven. Do you miss your mom. It was a long time ago - when I was a little kid. "   ( see picture in blog) but he went on to say -" I'm sorry about the yelling and it's my fault. I'm sorry you're not my dads wife anymore. Are we still a family?"  Of course it wasn't your fault and we are still a family. Our family looks differently than it did a few years ago- but sometimes that happens.  I love you. Your Dad loves you.  I miss my Mom but I am really happy. 

I really miss my Mom. It may sound ridiculous to say, of course I miss my mom. What I didn't expect is the gravity of the loss.  The anger and feeling of separation from the family closest to me.  The love I have for my sister and brother - there are no words. They have been a constant source of  support throughout my life and especially throughout the  journey of our mothers sickness and death. Yet - it has been challenging for all of us to feel connected in the way we always have. Maybe because of the loss of our mother- the glue that kept our family together.  Maybe because we can no longer complain about how harsh her comments were-  and yet always true - lol!!  We all just miss her.   The intense emptiness of missing my person- the one I could confide in. The one who - literally- was always so annoyingly right. The one who supported me the best way she could through a difficult marriage and helped me through a painful divorce.  I miss her.

 What happens when I find my new person?  I wish I could talk to her. I want her to meet him. I want her to know I'm ok. Of course- being honest- there is always the voice in the back of my head regarding Robbie. He will be with me- long term.  Special needs children are with you in a different way than other children. Robbie won't go off to college, or meet a spouse and have a family of his own. He will have his own life, but it will not be without unique challenges.  This is something she used to say to me- and I would get so angry- yet again, she was right.

Tonight - yet again Robbie asked me if I was ok. Do I miss my mom. Your mom is in heaven. I am here for you Mom.  After reassuring him that I am happy and asking how he is feeling- His response was perfect- Everyone loves me- the teachers - my Shawnee teachers- they say I'm the best.  I am happy Mom. My Gama is in heaven.  Which makes my heart so full and is completely true. : ) 

There's a lot of noise in my head

 One of the many skills Robbie is continuing to develop is the ability to express himself. This is something many us - on the autism spectrum or not- struggle with. For Robbie- much of his communication is relied in terms of movie lines or scene.  " The movies are in my head. They make a lot of noise. I say no- not again and they say yes again Robbie. Too many things in my head."  

Robbie being able to articulate this, calmly and clearly is the most important skill of all. I am so proud of how far he's come. We talked about Inside Out 2 and the additional emotions that were added to Reilly as she became a teenager.  Anxiety, Envy, Embarrassment and Ennui - a feeling of tiredness and boredom- were added to Anger, Fear, Disgust, Joy and sadness.   Anxiety is an emotion he has struggled with for as long as I can remember. Much of it was due to not being able to express himself. 

I should preface this by explaining how the conversation started.  Robbie came into my office where I was working, and showed me his " white shirt had a hole."  Robbie wears white t-shirts to bed with pajama bottoms every night.  Together we examined the hole. It was slightly larger than a pin hole. So small that sewing it would make it look worse. My first response was to say it's no big deal and lets just ignore it- but looking at his face I determined that wasn't the best response. He was filled with anxiety over the small hole on the back of his sleep shirt. Together we discussed what to do. Should we try to sew it? Should we put it back in his drawer? Should we discard it and order some new white t-shirts?  The third option was decided and together we picked out an inexpensive pack of Hanes XXL t-shirts from amazon.  Problem number one solved - but at that time he sat on the couch and spoke about the noise in his head.  Problem number two. 

As I listened to Robbie I realized , like many of us, he just needed to be heard. He needed my undivided attention as he explained his feelings. Once we spoke about it, he had let the emotions out of his head through his mouth.  We took a deep breathe together, and of course- " Can I have a hug?" Which is an ask that occurs multiple times throughout the day.  Then he looked at me and said- " your mom is dead. She is in heaven. Do you miss her?"  He does this often since she passed in March, and it takes my breathe away for a second almost every time.  Yes Robbie I do miss her, but I know she is watching us and feeling joy at how far you've come.

A Family's Journey- and the death and the dying

For Robbie - getting old, gray hair, sickness,  death and  the dying, as he calls it,  is a huge cause of anxiety.  Let's be honest- it is for everyone.  On Thursday January 18th, I got a call from my dad- who rarely calls me. My mom and I spoke almost daily- so there was never a need to. But on this day my mom had ,what they thought was a stroke.  After a few minutes of processing I left work and went home to pack. I assumed I would be gone for a few days- as they are 6 hours away. That visit turned into 2 weeks.

During that time it was determined not to be a stroke but Bells Palsy - which can stem from an upper respiratory tract infection. This happened while she was getting treatment for the lung cancer that ultimately took her life . So now- hospice starts, additional home care is added. Myself, my sister and my brother rotate our visits to ensure someone is there along side my Dad as we watch my mom fight through her last few weeks.  Fast forward 6 weeks - she passes away. It was too quick and also too slow.  My last visit ended Monday March 4th.  She had told me she loved me March 3rd. Those were  the last words she spoke to me. Before I left on the 4th, I told her I loved her, I'd see her soon and I was ok. I know she worried about me.  She looked me in the eye and gave my hand a gentle squeeze. The call from my Dad came the morning of the 6th. She had passed during the night on March 5th.

During that time and  the months prior, I spoke with my children about the circle of life. This was especially important to Robbie. As he refers to it - you are either young and alive - or old , death and the dying.  With autism things are black and white while many of us see shades of grey.  I laugh as I write that sentence -  Robbie will tell me the minute he sees the new growth of grey hair on the top of my head- a sign to get it colored immediately. He prefers his mom with her "yellow hair".  He does not like seeing anyone age.

There is so much else I could write about the experience of my mother's passing but things always come back to the perspective of my Autistic son. Currently, he talks about his other grandparents. They are younger than my parents, which brings him comfort.  Young and alive, as Robbie says. As I try to remain positive and not talk about the process of - the old, death and the dying it feels like its all around. It's not even working in Hospice care myself but seeing so many friends lose parents. Seeing friends battle cancer themselves. And recently telling one of my best friends she's not allowed to be that sick yet. At 50- we are too young, and selfishly- I can't bare to lose her. Young and alive. All of this is perspective.  So moving forward I am going to try and stress to my 18 year old son , who sees life through a very different lens - even as we grow older- we are alive and there is so much to look forward to. Young and alive, old , death and dying- grey hair or yellow hair- as he prefers to see mine.  This is our journey and its a beautiful thing :)

But damn- I miss my mom .............