Sleep

Last night I slept.  I slept hard.
At 1 AM Samuel wandered in my room needing help.  I helped him, he threw up on me, David helped us clean up, then we all went back to bed, and I slept.  

It has been months since I have slept like I did last night.  The last school year was so hard as Samuel's condition was making his life harder and then we scheduled the surgery.  The anxiety of the surgery made sleep almost impossible, and as soon as school let out for the summer I started having horrible feelings of what if this is the last time we get to _________ .   Fill that blank in with garden, vacation, read a story, play a game, eat dinner, listen to him laugh, tuck him into bed, etc.   

I cried as I left his bedroom the day he was admitted to the hospital because that was the last time we would ever do his daily treatment in his room on his bed.  We have done them since he was 3 years old.  That's 6 years of 30 minutes each day that David or I would sit with him quietly, watching a show that he liked or listening to him play with his little toys.   We've watched him grow and mature durine those snippers of time.  The toys he chose to play with and the shows he wanted to watch changed. The space for us to be at the foot of his bed during the treatment was quickly disappearing as he has gotten taller and taller. But on that day it ended.  On June 28th, we did the last treatment on his bed, so I cried and took a picture of the treatment setup that we won't be using again. 

In the hospital, I tried to sleep, but even when I would sleep I needed to be awake enough to help Samuel.  He would moan most of the nights. He also had some difficulty breathing.  I couldn't really sleep because he wasn't well.  Plus, the wonderful nurses and doctors would also be coming in and out to check on him and give me status updates. I needed to be awake. Awake even while I slept.

Yesterday though, he was discharged.  We arrived home and ate dinner as a family. We were all exhausted so we went to bed early, and I slept. I slept hard.

I remember that...

Last night in a support group a mother expressed her worry about her baby.  He is 15 months old and facing another surgery.  The baby is so similar to my son.  I remember those worries.  There are worries about the surgery itself.  Handing my baby to the nurse who would be taking my son back to surgery got harder with every surgery.  Learning about his condition and thinking, "Oh, how can this be!  How is he going to deal with this?" was heartbreaking and overwhelming.  I couldn't picture his future without crying, and then to be up against a surgery that if it didn't go well would rob him of a future at all!  So when I read this mother's concerns, I was taken back to those moments and I felt so grateful to be 8 years away from them.  I let her know what a 9 year old boy with this rare condition can do.  None of his friends even know he has a condition.  He has rough days and those days are still heartbreaking.  The condition is life-long so it is what it is.  What seemed insurmountable 8 years ago, is just life now.  I shared with this mother about my son's daily routine, but I also let her know that he has friends, plays sports, does well in school, and does regular boy things.  Then this mom responded, "Thank you.  I guess I just want him to have a 'normal' life and a great group of friends."

Eight Years Ago

This post was written in January 2017

Eight years ago I was only 30 years old.
Eight years ago my child who was not quite a year old was preparing for his third major surgery.  The surgery the doctors had said would be the most dangerous and had the highest probability of him not making it.
Eight years ago a new President of the United States of America had just been inaugurated.
Eight years ago, I was terrified.

In the previous year I had been laid off while I was on maternity with my first-born son who had medical problems.  I had been laid off WHILE I was on maternity leave.  Not only was I on maternity leave, I received the phone call the day after I got out of the hospital after a week stay as a result of emergency surgery that went as bad as it could go.  I literally died on the table, was revived, got pneumonia and then had to fight to stay alive.  Then I was informed that I was no longer needed in the office.  My insurance would end at the end of the month.  Of course I still had the option of COBRA, but with no job there was no way I could afford those premiums.  My husband's job offered insurance but with me being laid off, our household income was just cut by 75% and so picking up those premiums also felt impossible.

I was laid off and I felt worthless.  Worth less than everything.  I wished that I had not survived the surgery.  I apologized to my baby daily that I was such a failure.  I had failed him in so many ways.  I failed to carry him to term so he was born 8 weeks early.  I failed in the pregnancy and therefore he was born with a birth defect that would impact him dramatically his entire life.  I had failed to keep my job to support my family.  I failed at breastfeeding because in order for me to heal, I had to give up pumping.
Then there was the reason I was laid off.  The official reason: legislative budge cuts.  The real reason: I am a woman, I had a baby, and I'm Mormon.  A trifecta that meant I had to go.  The executive director was quite open with his feelings about women and Mormons.  The first day I met him he told me he wanted to meet to go over my qualifications and position expectations.  As he sat down in my office I provided him with a copy of my resume which he promptly put to the side. He then asked me about myself.  I tried to keep it professional while being personable, he interrupted me and asked me about family. Did I intend to have a family?  That is not a legal question, but I wanted to keep my job.  I skirted the question, because the only one with whom I will discuss my intentions to have children is my husband.  He left my office frustrated and told me we would be in touch.
The next  couple of months I heard very little from him.  We were in a couple of the same meetings.  I communicated with him by email about ideas on how to move forward on some projects.  I could not move forward without his okay.  He finally responded that I should not plan to do anything.  The suggestions were good, but he had some things in mind and did not want me to do anything until he said.  I was to do nothing.  A month later he made the announcement that my position had changed.  I would be moved from my position into a position that was currently filled by a man.  That man would be promoted to be in charge of all staff.
It was a curious decision to be sure.  I have a Masters Degree and several years of experience.  The man had been working with the organization for a few months longer than I had.  This man was on the hiring panel that hired me.  He actually told me on my first day that he had not wanted to hire me, but instead wanted to hire the other person because the other person was a man and it would have been nice to have another male in the office.  This man that would now be in charge of staff was working on his associates degree and prior to working at the organization, according to him, had only ever been a bartender and porn star.  He was a good person, very friendly and outgoing, and definitely smart, but in both education and experience, I had him beat.  To add insult to injury, every idea I had sent the executive director he was given as an assignment, and he had no idea how to execute any of the ideas so he would come to me so that I could tell him how it should be started and carried out.
Ironically, the same day that I found out my position would change, I also found out that my husband and I were expecting a baby.  The elation I felt in the morning, turned to fear as I didn't know what would happen if the executive director found out about our news. Fortunately, our offices were in different cities.  I didn't say anything for months.  The executive assistant in my office knew.  She is probably one of the the most talented people I have met.  She is a hard worker who could do any assignment ever given to her and she has a way of working with the most difficult of people.   Then the dates for a statewide meeting were announced.  I was showing and still sick so there was very little chance that I could attend the meeting and not have him notice.  I let him know, and to my surprise, it went okay.  He responded with a crude comment but then nothing more was said.  I received a congratulatory note and flowers in the hospital when my son was born.  And then I was laid off.
All of this is to say, I get it.  I understand being upset.  I understand being scared.  I understand being angry.  I am fine with women marching.  I support everyone exercising her and his rights.  I just don't understand this particular march.  I'm trying but then I read articles like this article I see shared on Facebook and I am further confused.  The title alone is incorrect.  I am equal.  My equality does not change based upon anyone's opinion or treatment of me.  I AM EQUAL!
I am thankful for all men and women who have fought with or without arms for the rights that I have today.
I am a woman.  I do not take offense when reminded to be ladylike.  Women are strong and courageous.  We are smart and have valuable perspectives.  We are leaders and teammates.  We are beautiful and amazing.  We are not men and men are not women, but one is not better than the other.  Women are different from men, but each woman is different from every other woman just like each man is different from every other man.  When admonished to be ladylike, I accept that as a challenge to be my best self and nothing less. I am not ashamed of my femininity.
I have the right to make choices as to what I do with my body.  I do not have the right to choose the consequence.  If I choose to have sex, I can accept the consequence of that action and as a woman I can face that responsibility.  I have the right to birth control, but I do not believe that destroying a life is an acceptable choice.  Therefore, in the debate over abortion I am firmly against abortions in all cases except in the case of rape because in that instance the woman was robbed of her choice.