Hayley's Mom

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/