Month: August 2017

Tonight I am home alone.  This alone is a rare occasion.  Scott very much like Hayley, is a homebody.  It is not that he is anti social.  When put in social situations he does fine, sometimes will even admit he had fun despite being forced to go. So normally he would be home.   I have never minded spending time alone.  My friend has a family home on Hood Canal that I am lucky enough to visit and that is where Scott is tonight.  I have stayed there many times alone and it has always been peaceful so I suggested he go.  My friend and I are going in the morning to enjoy the sun, meet up with another friend and paint rocks.  Evidently painting rocks is  a thing now.  You paint them, maybe with a message, leave them about town for people to find.  I used to set up a kid size picnic table in the backyard for a four year old Hayley and our neighbor Conner.  Those two could occupy themselves for hours painting rocks.  I guess I was ahead of the trend.

I am lonely, so very lonely.  Before all of you freak out and start messaging me that I could call you anytime, let me explain.  I don’t want company tonight so when I say I am lonely it is not a complaint, just a fact.  If someone asked me to describe the grief of losing a child one of the first words to come to mind would be lonely.

I did not just lose my daughter, I lost my best friend.  She would have been thrilled to have the house be girls only tonight.  I would have felt obligated to sit and watch one of her crappy recorded reality TV shows.  We would have sat on the couch in the family room, at some point I would rub her head and play with her hair.  Just a brief show of love and affection.  These are the times I miss her the most.  I would watch every episode of Kardashians and the spin offs to do that one more time.

When we were in our third hospital in one week,  faced with the fact that she would not be going home I would curl into a ball on a small twin bed.  This hospital had rooms for rent.  It was called The Inn.  It was basically old hospital rooms from Providence days.  We rented one with three beds squeezed into the small space, my bed was the first on the right up against the wall.  The linens were minimal, the water in the shower cold and I clogged the toilet. I had Hayley’s pink blanket, the one she sent me a picture of from target the week before Christmas, hint hint.   I curled up on that bed facing that beige wall often with one hand under my pillow and the other splayed flat on the wall.  The wall was cold.  It was like I needed something solid to hold on to so my world would stop spinning.  I could hide.  Hayley’s Team as I called them had a group of leather fairly comfortable chairs outside my room.  A kitchen and a table to put puzzles together on.  I could only spend small amounts of times in Hayley’s room before I retreated back to that small ugly room on the 5th floor and sob.  I would always be in the same position, hand on the wall.  It worked.  I left the door unlocked.  My family and friends could enter, sit on the bed next to me or the bed across to check on me.  They would speak to my back.  I didn’t have to look at anyone this way.  I didn’t have to see the pain, grief, sorrow and tears on their faces.  If I did not acknowledge their pain maybe my pain would not be real.  Maybe the entire thing would be a bad dream.  I felt incredibly guilty for not staying in her room.  Scott did.  There was room for one person to sleep in there, that was Scott.  The last night he could take no more and slept in the Inn, I was going to sleep in her room.  I ended up telling Hayley stories all night to the nurses keeping her body alive for the benefit of strangers.

I could still manage and direct people in my usual ways from my position on that bed with the wall holding me up.  It felt like I had to hold that wall up.  If I didn’t I felt it would crash down on all of us.  My palm on that wall was my focus point.  Remember during natural child birth class they told us to bring a small item that would be our focal point to use for getting through the pain.  My object was a small stuffed classic Pooh Bear.  I used it in both births.  I almost squeezed its head off both times right before I got the epidurals.  I still have it.  Scott and I seem to reverse roles that week.  He was the one that greeted all the parents and young adults that we had invited to the hopsital to say goodbye to Hayley.  He hugged the girls while they weeped.  An entire evening of this.  I could not do it.  I could not see my grief on those girl’s faces.  He did the job for both of us.  So I held up my wall.

When Henry was brought to the hospital it was Scott and our wonderful pediatrician, Tracie, that explained to him that Hayley may look alive but that she was not.  He was losing his sister.  He spent a short amount of time quietly touching her arm while the tears ran down his face.  I was there for that.  Then he joined me in the Inn.  He had the far bed, he slept almost all of the time that he was at the hospital, he held up the other wall.

It was Scott that backed me up when the doctor’s told us it was likely she could go into cardiac arrest again and he recommended we not resuscitate.  We sat in someone’s office while he told us she was brain dead.  Our pediatrician was there, she kept me upright, she held my hand when I asked him are you 100% sure.  He coldly said “Well nearly 100% we have several tests we run, there is protocol before it is official”.  I looked him in the eye and said you will save her if she codes.  I know one thing about my daughter and if there was a 1% chance she would find it.  Scott backed me up when it felt like the doctor was trying to convince me to change my mind.  I looked to Tracie for guidance, she had been caring for my daughter’s health since she was 2.  She didn’t look at me with pity, she asked doctor questions and whatever she said to him he finally left us in that crummy office to process that our daughter was gone.  I didn’t stay there long, I had to get back to holding up my wall.

Back in my Inn, hand on that cold, ugly, beige wall.  I laid there thinking to myself and asking questions in my head.  Am I in denial?  Did I understand what he said?  Would I really be “hurting her” as he put it if we bring her back if she codes?  Several times a day you would hear codes over the hospital intercom, this was an intensive care hospital.  I had already heard at the last hospital the code with her room number “rapid response team”.  I had heard “code blue” and her room number at this hospital.  No matter what our Hayley Team was doing when the intercom came on we all froze and then would sigh with relief it was not her room.  I knew the fastest way to get to her room.  I thought about it later, how happy and relieved we were that it was not her room number.  But now I think, it was someone else’s room number.  Another Family.

In another post I will share in more detail what led to Hayley’s death, this is not that post.  But I want to share how extraordinary those 7 days were.  We don’t have family that live near us.  The closest is my brother and his family.  I love him and his wife more than anything.  They live an hour away.  But when I called at 1:00 am and said I am on my way back to the hospital I think Hayley has had a stroke.  He was there.  He was there fast.  My little brother, 8 years my junior, a brother that was really raised in another household.  We had only lived in the same house together for the first 6 years of his life.  We were raised  as only children.  But he was our rock that week.  I have always enjoyed my sister in law’s company, but that week I got to really know her.  I already loved her, that was a given, but I was so sad that we had not made an effort to spend time together, Hayley would have adored her sense of humor and how she stalked the hospital halls trying to get us information.  Hayley would have loved how she bosses her Uncle around and he seems to love it.  Terri was already with me, she had been with me for the first week of this journey.  So this was the start of our.  My best friend and Hayley’s second mom was there in the middle of the night.  She lost her daughter, Ali, when our girls were in kindergarten.  I knew her after, Ali brought us together.  I knew she avoided hospitals.  She was also flying out in a day to the east coast with her girls for an important trip.  But I saw her.  She was there.  We didn’t need to talk.

This is where it was an extraordinary experience.  By this time we had our Inn room and we sat in the circle of chairs.  I found comfort falling into my normal role as the planner, the boss, the organizer.  Everyone fell into a role naturally.  Kevin was the note taker, the creator of the caring bridge page.  His role was to be at there with us at every crucial moment, clear headed and asking the questions I could not voice.  Even through his own greif.  When my sister in law arrived she fell into role as the gate keeper.  My friend from high school and the one that held a leg while Hayley was born was keeping a close eye on me.  Terri somehow made food appear for everyone and erased my constant thoughts about how we were going to handle this financially.  She and Sara would stay with Hayley when I couldn’t.  They also kept an eye on Scott.  When my cousin arrived from Vegas, she was in charge of the dogs and Henry.   Susan and her daughter arrived, she offered medications and made me actually laugh.  I sat there and said what I needed to happen and every single time the exact right person made it happen.  I needed medication.  That took three of them to make that xanax happen.  I gave a verbal list of which girls would need to say goodbye, I did not want it to become a circus of teen girls.  Jessi worked with Darin and Tamese to make that happen.  They had a system for the arrivals.  They made sure that all I had to do is hold up my wall.   Tena brought food.  Susie brought food and booze.  We all were shocked and dismayed at the basket with the makings of lemon drops.  But guess what Susie is always right.  By the last night everyone needed and had a lemon drop.   My mom arrived from Florida.  Her role was to guard Hayley as long as she could do it.  She was the one the hospital staff would know not to mess with.  When the last doctor came in on the 20th at 9:30 to do the final test in the protocol for death, he was incredibly rude and insensitive to me.  I can picture his face.  I can hear his insensitivity.  My mom was in the room.  Big mistake buddy.  I almost felt sorry for him.

I was spending time with my child, I will leave the room when I am ready and then you can do your fucking test.  If the first three tests were correct she was not going to be any less brain dead in 15 minutes.  Even though I was ready to go back to my room in the Inn,  I stayed longer on purpose sensing his frustration.  I knew I had back up.  I laid my head next to Hayley’s and whispered to her “I am so sorry that this man is a dickhead.  But because he is, mommy is going to keep her mouth in your ear for a few minutes just to piss him off.  So just go with it sweetheart.  I told her I loved her and that grandma was in the room and I felt sorry for this guy because of it.  I also mentioned if by chance we were all wrong and she was still there, now would be the time to let everyone know. ” I could almost hear her favorite phrase “I fucking hate people'”.  No joke this is what I whispered, while he stood there preparing his test that would trigger a death certificate for my only daughter.  I am not sure if it was that day or another day, but my mom raised hell about that guy.  When my mom said she was torn between being with me and being with Hayley, she did what I needed, she stayed with Hayley when I couldn’t.  This team knew instinctively what I could handle when I didn’t even know.  Everyone had a job at some point that week.  Scott and I had handlers.  I could hardly be in a room with Scott without losing the ability to breathe.  When I looked at his face, when I touched his hand, or leaned into his body; I saw, and I felt my own intense grief reflected back at me, it was brutal.

We may not have always been able to make the roles husband and wife work. We had once been separated for almost 2 years living in the same house. We always parented as one.  We got that right always.  We met in the Inn when we had to make decisions.  After the doctor convinced us that there was no hope and to sign the DNR I went back to my spot to hold up the wall.  It still didn’t feel right.  What I didn’t mention is that I knew she was gone.  I knew exactly when it had happened.  I can’t talk about it in writing yet, but soon.  But even knowing before they proved it, I did not want to sign that DNR, something was trying to get through the haze of pain and Xanax.  Scott sat on the middle bed and cried.  He was ugly crying.  I held up my wall.  We knew we had to make some decisions.  So we pulled it together and sat across from each other with our knees touching.  These are things parents should never have to talk.  I knew what Scott wanted if he died, but I had not ever thought about what I would chose for my children.  We were very business like.

• Who else needed to say goodbye?  Her best friend was still on a camping trip in Wyoming.  We both agreed that we needed to do everything possible to make sure she arrived in time to say goodbye.  We were able to track her using Hayley’s phone and find my friends app.  We knew she was on her way.
• I asked him to check my original list of people that needed to know, did they all get a chance to say goodbye.  The governor could have visited and I would not have known.  I was holding up my wall.
• How do we handle Henry?  We agreed we would ask Dr. Tracie for advice and asked Sandy to bring him to the hospital.
• Burial or Cremation?  I curled back up and dug my nails into my wall.  Can I imagine my child buried in a box or turned into ashes.  Really not good options.  What I wanted was for her to be alive and come home.  She looked alive.  I could touch her, I could listen to her heart beat and touch her hair and massage her scalp.

Here is where it happened.  The Click.  We are constantly making memories.  I am making one typing my story with a documentary in the background and texting with Henry.  It won’t be a memory that will leave its mark.  There are memories that leave a mark.  The obvious ones; the first time I held my babies, the moment a 17 year old me watched my stepmom take her last breath in hospice, raging at my Dad’s dead body in his bedroom, the moment Scott said we should give up on our marriage and the moment h

e said we shouldn’t.  Not all memories that leave a mark are the biggies.  Some are smaller moments. Singing in the car with Hayley with the windows rolled down, belting out Bruno Mars, Sam Hunt and some love song she was  so into, about a man falling in love with a woman while he held her hair and she puked and she looked over her shoulder.  Picking bedding together for her dorm room.  Every time I watched her dance.

 

 

But this was the one that would change our direction.  This suddenly gave me a purpose other than holding up my wall.

 

• I gripped his knee, wait a second, Hayley is an organ donor.  Why didn’t the doctor mention or ask us?  Maybe her condition keeps her from donating, why else would he not mention it.  Scott said I think that is what she would want.  I said I KNOW, for a fact she would.  I told him I was with her when she checked the box at the dmv when she proudly got her permit.  She asked me to explain it before she thoughtfully made her decision.  I told him there was more, but I needed him to go find that doctor and tear up the DNR NOW.  Hurry find someone and do not leave her side until you know they will resuscitate.  His tears dried and he was a father on a mission.  I curled back up shaking and holding up that wall.  The rest is a blur.  I think it was my brother that came and said that Scott was working on the organ donation and did I want to come help.  No, let him handle it.  Scott came to me and said it was fixed and yes she could donate.  There was a woman that we needed to fill out some paperwork with, she had questions that he felt I could answer best, was I up to doing that.  I asked what kind of questions, he said like medical ones, I rolled my eyes, of course I was the only one that could do that.  He said you now the stuff you are good at the details.  She had only been to maybe 2 doctor’s appointments in her life that I was not present for.  I followed him to Hayley’s floor and met two women that needed to meet with me.  One was dressed in street clothes and had a laptop, the other was in scrubs.  I agreed but asked if we could go back to the Inn and meet there where I had my support group.  Amy had the laptop and asked the questions.  I wondered why an RN was there, but figured if I fainted it would be convenient.  The first thing she did was establish rapport.  She asked how did I know Hayley’s wishes besides the dmv.  She said from what Scott told her it sounded as if this was something she and I had discussed and that was very unusual for someone Hayley’s age.  My response was , she was special.  That is when I knew that the wall I was holding all those days was for a purpose.  I knew there was something just out of my reach that I couldn’t think of that would make things easier that week.  This was it.  About 4 weeks earlier, on father’s day, Hayley came home that weekend to work and see her Dad.  She had just gotten home from work and sat in the other chair in the front room where I was watching the news waiting for her to come home.  We watched a story about a Dad that was riding his bike from Wisconsin to Florida to raise awareness about organ donation in honor of his 20 year old daughter, Abbey.  She had died while on a trip to Mexico.  The staff in the Fort Lauderdale hospital had made it possible for Abbey to donate the gift of life.  On father’s day, in New Orleans, waiting for him to ride into town was the 23 year old man that had received Abbey’s gift.  This Father was able to use a stethoscope and hear his daughter’s heart beating.  I sniffled, Hayley said ARE you crying? I looked over and saw she was too.  We laughed.  We always made fun of each other for crying at stories.  We both particularly loved watching those military reunions where the deployed parent surprises their family.  Automatic cry every single time.  I said “would you ride a bike across several states to hear my heart?”  her immediate response was exactly this “fuck no mom, but I might ride a cute moped”.  We talked a little more about how amazing it was that others can receive that gift and how amazing it was for her family.  Hayley asked, why wouldn’t someone donate?  I shrugged, I am sure they have their reasons, but that is what I would want.  See.  I told Scott I KNEW what Hayley wanted.

We still had several more days of hell but it had a silver lining.  Because of Hayley there would be other families that would not be curled in a ball holding up their own wall of grief.  I was obsessed that the organ donation happen.  It is a complicated process.  That is another journal entry.  I was 100% focused on her heart living on in another.  On Sunday, July 23, 2017 our beautiful 19 year old kind, funny, sometimes a pain, daughter would give the gift of live to 4 people by donating her Liver, both kidneys and yes, her heart.  There will be countless others that will benefit from other donations but all I cared about is the hope that I might some day hear her heart beating in another.  Until then I will continue to hold my wall of grief up with that one hand.

Right now, is a bad night.  It is exactly one month since her official death.  It is 20 years this week we announced our pregnancy.  All my days are bad but some are worse than others, this is one of them.  I thought writing would help.  But I think if I write about the place I am in now it will make it worse.  So, I will write, just for lightness.  A rule book of sorts, maybe it will help.

Disclaimer:  This is how I feel, these are my rules.  They may not apply to all grieving parents.

The Golden rule of dealing with a grieving parent. Do not take anything they do or say personally.  A parent that has lost a child gets a golden pass to do, say or act in any way needed. The exceptions are if my actions cause physical damage to another or are illegal.  Even then I might push those limits.  Nothing is about you.  If a grieving parent tells you that you are not only an asshole but also an insensitive one.  Do NOT take it personally, just give them some space.  If after the one year mark they still have the same opinion of you than it may be true and you should probably accept that the relationship is over.

It is ALL about their child and their pain.  At our Friday Grief Counseling session he discussed with us the most common question those dealing with loss ask.  How long will I this pain and grief last?  His answer was based on his experience as a widower;  about 2 and a half years.  He said most “experts” say about one year.  Because in one year you will have had a cycle of all the seasons, events, dates, and holidays at least once without that child.  He asked me how long I thought it would take.  “Forever” was my answer.  But we still had time on his clock so he talked to me about Hayley.  What would your daughter want?  What do you think she would say if you were never happy again; if you and her Dad grew apart instead of closer.  It had not occurred to me at all what Hayley would want.  My first thought is that she would not want to be dead.  But since this is not possible, I think about it quietly, hoping Scott will talk and I won’t have to answer the question.  I think for me it will not get easier for 4 to 6 years.  I am only guessing.  That is when friends have had those events that Hayley and I had discussed or dreamed about.  For example, in 3 years she would have graduated from college the same week her brother graduated High School.  We thought that was so cool.  She constantly talked about both being the class of 2020.  Her friends will be starting careers.  She has wanted a career in law enforcement since junior high school.  Her friends will date and fall in love.  She was excited to move forward and start to date for the first time.  We talked about it.  It was part of the reason she wanted the surgery.  She wanted control of her health and her appearance.  Those 36H things were in her way both physically and mentally.

Once her friends start doing things Hayley and I had not discussed yet, it might get easier.  When the first gets married; I will hurt.  I will think of all those episodes of “say yes to the dress” we watched.  When the first has a baby; I will hurt.  But those were not things we talked about often, too far in the future.  So for me I really feel that it may become easier after 5 years if I can survive that long.  At that point Henry will be one year into college and hopefully Scott and I will have figured out another new normal, the empty nest.

Rules or Just Guidelines for Dealing with a Grieving Mother

Now that the magic blue box on our porch is not yielding yummy surprises on a daily basis, the odds are I am going to have to start leaving the house.  I can guarantee you that I will be going to Bartells to refill my Xanax prescription.   You may run into me.  I thought I would share some tips on how to handle these situations.

Scenario #1 – Hide and Seek

You see me, but I don’t see you.

Option A – you are having a great hair day.  You are feeling good.  You really don’t want to be reminded of your worst nightmare as a parent by seeing the bags and grief up close on my face.

Solution – make sure I don’t see you

Option B – F*&k it might as well say hi and get it over with.

Solution – approach slowly, smile, not big grin like you just discovered the most comfortable thong underwear ever.   A small, calm, approachable smile will do.

You took door number 2, what next?

People generally greet each other a “Hi, how are you?”.  It literally is how we say Hi, we don’t even think about it.  When someone asks me that question they immediately feel awkward. Seriously, I can totally hear the conversation going on in their head because I have been there too.  It probably goes something like this “OMFG you just asked her how she was doing, are you an idiot?  Her daughter died, of course she is not okay.!”

This question does not bother me. It does bother me when people get all flustered and say that was a dumb question or even answer it for ME.  Let me answer it.  I may just give the auto response “ok”.  That does not mean I am OK, of course I am not OK, are you an idiot?  But my “ok” is different now than yours.  I may answer truthfully, “I am having a rough day”.

In general, not just with a grieving mother, maybe we should start listening to the answer.  If you don’t really care how they are doing than just retrain yourself to say “hi”.  This is something I am personally working on.  Because in my opinion, if you ask you should care what the answer is.

You Conquered the Verbal Greeting.  To Hug or Not to Hug?

Do your best to read my body language.

Let me give you some hints on how to know the answer.

No Hug

• If I keep my cart between us, no hug. Don’t take it personally. The odds are I can’t remember the last day I showered.
• I have not acknowledged your verbal greeting. Either I don’t remember who you are or I don’t like you.  Again, do not take it personally. I have found that the combination of severe grief, the emotional roller coaster of the process, lack of sleep, and the Xanax are causing some memory issues. If it is because I don’t like you, you might want to ask yourself why, just saying.

Yes, On the Hug

• If None of the above happens, go for it. The two males in my family are not huggers.  I know they love me, but they don’t show it with hugs.  If you were at the service you know that Henry’s way of showing me involves a middle finger.  Hayley was my hugger. To get a hug from Henry, I either have to forcibly maul him; cry heavily or exchange it for goods or something of value.   It sounds something like this:  “Henry, hug me or I will not pick up blazing bagels tomorrow.”  Or “Henry, hug me or I will shut down the internet”.  So honestly I probably need a hug badly.

Appropriate Length and Strength of the Hug

• Let the grieving person control the strength of the hug.  I know you want to show me or that person you care, but losing a child physically hurts. Your entire body aches and everything is an effort. So, if this is a high pain day a bear hug may actually hurt me.  TIP:  For f$#k sake never ever give the “lift and hug”.  That gives a person a loss of control during a time where they have very little control.  My feet need to stay on the ground.   Speaking for myself, I can guarantee you would get a knee in the groin.
• How long to hug a grieving mother is complicated. To make this easier on everyone I have established a general rule of thumb.
  • One year that you have known my name equals two seconds. For those that don’t like math.  If you have known me by name for 3 years, you can hug me up to 6 seconds.

There  are exceptions to this rule.  If any of the following apply, hug away.

You can name all the pets in my home

We have spent the night under the same roof

You have heard me sing

You know have met my brother

We have gotten sloppy, I love you man drunk together

You have seen me dance

You provided my family with a meal

You attended Hayley’s memorial service; a long, hot and standing room only service has earned you a good hug.  P.S. tell me you were there, I really don’t know who was.

More Tips

Here is where the hug could go sideways. Sometimes a kind word or hug will open the floodgates. If this happens during your hug it is important that you do not panic.  A reminder these tips are for public situations. One or all of the following may happen.  Be prepared.

• I will recover, retreat quickly and find Kleenex or just use my hand or sleeve. Terrific, you are off the hook, just don’t shake hands.
• A grieving mother may extend the hug to hide, because we are self conscious or to wipe snot on your clothes. Either way just let it happen.
• Same scenario, the floodgates have opened. Do NOT push me away and run.  Be calm.  The grieving mother can smell panic.  Quietly ask me one of the following questions:
  • “Can I get you a Kleenex?”
  • “Would you like to sit down somewhere and talk?”

If these questions do not work I am not sure how to help you.  If it was me, I would grab the mother’s purse, leave the cart, and slowly take them to your car.  Two things will happen.  They will let you drive them home where they are no longer your problem or this will make them feel they are being kidnapped and it should snap them out of it.

So, in review, we have covered the greeting and the hug.  When in doubt let me make the first move.

If you still are uncertain or have forgotten the guidelines, just ask “Can I give you a hug?” or “Do you need a hug?”.  Remember your feelings are not the priority in this situation.

So you have successfully mastered the greeting and the hug.   If you have asked the question the first rule is to just listen.  I may say something like:

• “Well I am out of the house so that is an accomplishment”
• “I just really can’t think of an answer to that question
• “I am a broken mess, suffering unbearable pain and will never be happy again”
• “I am so angry this happened I just want to hit something” …( had to get a Sally Fields, Steel Magnolia reference in, sorry)…In this situation make a quick exit.

What should I Say?

• “I am so sorry” – simple and sincere, no further action needed. Possible second hug. Encounter done.
• “I am so sorry, is there anything I can do to help make it easier for you?” Careful, too open ended.  Only ask if you are prepared to follow thru on anything.
• “Can I help you finish your shopping? “Can I help load (Costco) these heavy things in your car?” these are great ways to show you care but not to have to deal with more in the future.
  • If they say no thank you, accept it.
  • If you are already in check out or heading that way. Just do it. Just walk out with them and load the shit in the car. Trust me we are exhausted. Everything is hard right now.
• “I really am sorry for your family, I hope you know I am here if you need anything, do you have my number?” Don’t say it if you don’t mean it.
  • Some simple examples of things you can do for the family:
    • Invite me for coffee
    • Make a meal for the family. It doesn’t have to be a full meal. Just drop off a snack or a treat.  But do not expect them to come to the door.  Just leave it with a note on their porch, text them and tell them you were by.
    • Walk their dog.
    • Offer rides for their other children.
    • Offer to take notes at school meetings so they don’t have to attend.
    • Is there anything you need picked up from your office?
    • Can I pick up prescriptions for you?

Anything that requires them to leave the house is hard right now.  A grieving  mother 99% of the time will initially say no.  Moms are supposed to do everything. When we can’t, we feel like failures. By being specific with your offers of help you are giving them a way to say “yes” guilt free.  I am telling you that the pain is so thick that when someone says “How can I help?”, I cannot think of anything!  But you know that can’t be the case.  Make suggestions.  If you still get a no, let it go for the moment, but follow up within 48 hours. Message, text or email only (we won’t answer the phone. Heck I didn’t answer when life was wonderful) keep it brief, I am glad I ran into you at _______________, my offer for help still stands let me know if you thought of anything I can do to make it easier for you.

I hope some of these tips help.

Finally, here is the number one rule, the golden one.

Do not ever judge the grieving mother.

For example, if I am out and about, or go to an activity, do not judge me.

You now people do it.  Here are some examples and my response.

1. “Wow, it has only been 3 weeks, I would still be laying on the floor crying?” NO, you don’t fucking know what you would do, until it happens to you.  I personally can be found crying on the floor a minimum of 6 times a day, but my other kid needs food.
2. “OMG there is that woman whose daughter died, how is she even standing, I could never come to a High School football scrimmage this soon”. I am trying to show my other child they are still important and I support their activity even though they may not know how to play their instrument, you are proud they are trying.  I would rather not be in a crowd while feeling like I have a sign on my back that says “Hey everyone, this is the one that just lost her daughter because of a simple surgery.”  But I will be there because I love my son.
3. “Did you see on Facebook, she went to a Seahawks game and was smiling? She met Doug Baldwin and pet the Hawk.  Wow, I wouldn’t be able to have fun this soon.”  That person may have needed to get out of the house before they hurt themselves.  The sky club tickets and field passes may have been gifts from two very caring women and you know what I am not going to hurt their feelings, plus I am willing to try anything to make this pain subside at all for 4 hours. But guess what the pain was still there, I cried when I met Dave Craig, scared him, but my daughter loved the Hawks, I did it for her.
4. “It has been 6 months, why is she still wearing her pajamas to Safeway?” Because I can and I don’t care.
5. “Can you believe she let her 19-year-old risk her life for a breast reduction?” FUCK YOU. You know who you are.

In conclusion:

Be Kind.

Do Not Judge.

Be a Friend.

Be Thoughtful.

Be Thankful that you are not me.

Yours Truly,

The Rule Maker aka Hayley’s Mom

My thoughts are consumed by the efforts to process this tragedy and the crushing pain in my body. As I start to venture outside of our home and have conversations with people outside my circle of support, it constantly occurs to me that I have lost one of my most cherished titles. I am a Wife. I am the Mother of a son.  I WAS the Mother of a daughter and the Mother of two children.  I have had that title torn from me. If a stranger asks me “Do you have children?” Have is present tense. I have one child. I have a son. Do I add that I had a daughter.  It is not my goal to ruin their day or make it awkward.

This is what I don’t understand. If my Husband dies and I have not remarried. I have a title. I would be a Widow. Reversed he would be a Widower. Everyone knows the definition of those two words. Those are both nouns and titles.  I would assume that this widow has faced significant pain, change and may now be filling the role of mom and dad for a family.

My deepest apologies to my husband; but I need to be brutally honest. In my opinion, the pain of losing a child is so much more significant. More everything. Please do not misunderstand.       I would grieve deeply for my husband.  There is nothing comparable to the unimaginable pain and grief associated with the loss of your child.

We created a daughter.  We created another human being.  She lived within my body. We focused on keeping her safe for 19 years.  She had dreams to fulfill; she is irreplaceable. Trust me, I have never stood over my husband at night to check for breathing and marvel at his adorable toes and long eye lashes. The closest I have come to this activity is staring at his face while he snores and farts in his sleep. Wondering when did his nose hairs get so long.

A spouse is replaceable. Statistics on divorce prove it. Dictionary.com confirms that the bestowed title of widow or widower ends when you remarry. I am not trivializing the pain and suffering caused by losing a spouse.  But when that person feels ready to have a new relationship they get an old title back.  Now you can hope they learned a few things from their marriage and maybe attempt to screen out those traits from the previous spouse that may have been annoying or made life challenging. So not only do you get an actual title in between spouses, you could even have a new and improved marriage.

But what is my current title as it relates to my only daughter? It is all past tense. She was my best friend. She was physically a reflection of me. She was my kind, funny, real, thoughtful child that constantly used the word F*@k as a sentence enhancer.

But title is now past tense.   She died 3 weeks ago.

Where is my new title?

I deserve a f@#$%g title. I destroyed my body and breasts in ways that make me cringe. I gave her life and nourishment.  I rarely slept more than 4 hours a night for the first four years of her life. Then guess what, her brother was born and it started all over again. I have literally not slept 8 hours in a row without the aid of prescription meds or booze in 19 years.   I was the “Mother of a newborn, a toddler, a preteen, a tween, a teen and briefly a semi-adult”

I put my first born on a school bus for the first time in September 2003, followed the bus and received my next titles:  “Room Mom“, “Art Mom“, “PTA Mom“, “Girl Scout Mom”, and yes, the big one, “Dance Mom”.

Junior High came and we had a new favorite title, “Parent Dance Chaperones”.  We decided to make embarrassing your daughter a sport.  If it was an Olympic sport I would have a gold medal for sure.

My title and signature as her mother allowed her to be protected from disease by vaccinations. My title and signature on checks allowed her to have straight teeth. My title and signature on liability waivers allowed her to experience field trips, play soccer, baseball and basketball.  My title signed her up for roller hockey camp in the 5^th grade where she was the only girl. My title gave me the right to command her to attend all five days of that camp. I am not sure I was ever forgiven but a few boys learned that you should never underestimate someone with the title “girl”, with a hockey stick and a competitive streak.

I spent thousands of hours at dance competitions. I sat in the rain and once snow watching high school football games just to see her do what she loved for 3 damn minutes at half time.   Parents, be honest, unless your kid is playing, high school football sucks.  AND if your son is playing, hello, have you seen the Will Smith movie.  No, not the one where he drags an alien across the desert while spewing witty dialogue and then flies a spaceship with the guy from the fly after he marries a gorgeous stripper with a well-adjusted son in a ceremony officiated by the President of the United States.  You know, the movie about your growing son’s brain being permanently damaged.  Google “CTE”.  I sat and watched my daughter cheer for your son’s brains while freezing my ass off waiting for her 3 damn minutes on the field.  That title was “Dance Mom”.  There is a reality show by the same name, enough said.

I was a proud Mom when she graduated high school a year ago.

I was a sobbing mess Mom when she left for her freshman year of college.

Those are only some of my titles I have had associated with my daughter.

At around 2 am, on July 18th, while most of you slept, I watched as my daughter laid naked on a hospital bed.  A nurse performed chest compressions. I screamed my daughter’s name as loud as I could while fighting to reach her side. My husband held me back, let them do their job, he said. I barely heard the code blue announced over the intercom with her room number.  In an attempt to reach her, I kicked, screamed and made noises that can only be described as primitive and raw. I lost control of my bladder.

I heard hospital staff say, “is that the Mother” not “Her Mother”.  I was a title to them, a noun.

After an eternity and disturbing every ICU patient on that floor with my screaming.  I saw a man in scrubs come around the corner to where we huddled on the floor. He did not make eye contact.  “We were able to intubate her and restore a rhythm. You can see her as soon as we finish stabilizing her. Her body is currently receiving support.”  I must improvise there since that memory currently causes a buzzing sound and haze in my brain.

I was offered a wheelchair. We entered a room titled “family lounge”.  That is a stupid title for that room. It should be titled “hell”.

We listened as a slow talker top neurosurgeon explained to us the grim situation. I listened from another place as he explained the 50/50 chance of her surviving the surgery to access the clot on her brain. I don’t remember him using her name.  In my head, I was screaming NO over and over.  I was shaking and silently telling him to get to the f@#$%^g point (as my daughter would put it). He needed to go save my daughter. Our titles, Mother and Father, gave us the right to sign the paperwork for him to try to save her.

Her body survived the surgery, but not her brain.  We were asked multiple times to use our titles to sign away her rights for resuscitation.  I kept saying no.  I had looked in her eyes, I stood next to her, I knew she was gone.  Finally, I said yes.

About an hour later as my husband and I sat privately staring at each other hoping that one of us would wake the other up from this nightmare, we talked.  The privacy and quiet allowed us some clarity.  Wait.  She was an organ donor.  I know she was.  I know it for a fact.  By chance we had talked about it less than a month earlier when we saw a news story about the subject on Father’s Day.  She had just come home from work and we were watching the news.  They told the story of 20 year old Abbey Conner and her father, Bill Conner.  Bill was riding his bike from Wisconsin to Fort Lauderdale to raise awareness for Organ donation in Abbey’s honor.  On Father’s Day, the young man that had received Abbey’s heart met Bill in New Orleans.  Bill with the aid of a stethoscope was able to once again hear his daughter’s heart beat.  We both were sniffling.  I said to Hayley, “would you ride a bike across multiple states to listen to my heart beat?”  Her response was “F&^k NO Mom, but I would consider riding a cute Moped”.  We talked about the story, she had questions about organ donation and we both went on with our day knowing that we both believed in the giving the gift of life through Organ Donation.

The doctors had given up on her.  Her life was over.  Nothing more to accomplish.  But they were wrong.  My husband had strength that week that I had never witnessed.  He rushed to find the doctor to use our titles to order resuscitation if she was to code again and asked about organ donation.  Our care was assigned to two amazing women that would lead us through the roller coaster of organ donation.  We trusted the care and control of her gorgeous body to these strangers.  These people make miracles happen.  Our daughter’s decision changed the lives of over 6 people.  She was able to donate her Heart, both Kidneys, her liver and give sight to two people.  There is the possibility that she will continue to change lives through tissue, skin and bone donation.  Sometimes this number is nearly a 100 people.  We knew that she was extraordinary.  But she stopped other families from suffering the pain that we were.  It was HER choice.  As her parents it was our duty to honor her choice and make it happen.

For 5 nights, our titles gave us the power to make decisions that would impact the lives of strangers. We would not leave that building until our daughter did. Each night we had to decide if we were strong enough, was she strong enough to go one more day to allow her heart to grow stronger for the benefit of a total stranger. We asked tough questions.

My baby brother, well he is 38, he asked the questions I couldn’t speak out loud and took notes. Even though she was technically an adult at 19, our titles, Mother and Father, required us to make overwhelming decisions on her behalf. She had been in this magical phase of life.  Not quite an adult, no longer a child. The titles of mom and dad still held deep responsibility.

Now she is gone. All my titles have ceased to exist as they relate to her. I was a Mother of a daughter. I was the Mother of two children. I was the Mother of Hayley Storm McCutcheon.

Each year new words are added to the Oxford English Dictionary, The Definitive Record of the English Language.  Let me share just a handful of the words officially added to the OED in September of 2016.  Moobs, Ommba Loompa, Biatch, Biffy, Cheeba, and Clickbait.  No joke, see link below for the complete list.

What is my title now? Grieving mother? No that is a description. A title is a noun, something accepted and used by society.  When you call a woman a widow you acknowledge that she had a spouse that has died. There is no title for the mother of a dead daughter.

Why?

I desperately need a title that acknowledges She existed and I was her Mother.

This is unacceptable. This makes me angry.  This diminishes my past role.

The death of a child deserves a title.

I deserve a title. I earned it.

Yours Forever,

 Hayley’s Mom

 

 

 

http://public.oed.com/the-oed-today/recent-updates-to-the-oed/september-2016-update/new-words-list-september-2016/