About a month ago, on a Friday night, as my oldest was at a school dance  my youngest son and I perused the local Costco.  This trip he was especially chatty.  However, I didn’t think anything of it.  He’s 5 and he’s my son so he chats….a lot!  But we had lots of bonding and teaching moments during our discussion.

But, as we made our way into the meat section and I reached inside the case to grab my ground beef I heard the nonchalant question I wasn’t expecting.

“Why was Daddy screaming?”

Thinking he was referring to an earlier event, I became defensive and upset and quickly asked when Daddy screamed, screaming isn’t a way to communicate.

Ever so calmly he responded, “no, not today – the day Lydia died, why was he screaming?”

As if my strong exterior came crashing down due to the brick hitting my chest I felt frozen.  I was not prepared.  My gut had this empty feeling and my heart started to ache.  My eyes welled up with tears and as I bent into the meat cooler so he couldn’t see me, I told him why he screamed that day.

“Daddy was scared and upset.”

As if we were talking about anything else but death Grant said to me “yeah, I was scared too.  I remember that day mommy.  I ran downstairs by Devin and we were behind the couch.  But we got to watch Gravity Falls and eat our breakfast on the couch.   Then, all of these people started coming to the house – just to be with us.”

And there I was realizing that my now 5 year old who was just 3 at the time remembered everything about that day.   And it hurt. Bad.  And as much as I hear how children are resilient this is one memory I couldn’t relieve him of.  The one where he hears his Daddy screaming. Loud and like he had never heard before.  The scream for help.  I could never remove the memory of him running to hide behind the couch.  The memory of someone telling him his sister was in heaven.

That scream.  That day – that is where it all started for him.

The night terrors began immediately.  I found myself in a nightly routine of sprinting down the stairs to the boy’s room to Grant screaming in his bed.  I would grab him and hold him tight and hush him so he would not wake up his brother in the bunk above.  This lasted about 4 months.  I held him until morning so he didn’t feel the fear I could hear in his screams.

Along with the night terrors came regression of potty training.  A boy completely trained start to urinate himself…often.   He would cry and sob as he would tell us he wet his pants.  Or he’d wet himself without sharing in fear we would be upset.  No amount of coaxing, reassurance, prizes or reminding fixed this problem.  It went on for a year & 1/2.

The fear of death immediately set in his little, developing brain.  He would demand to know if I was leaving, where I was going and when I would return – even though he didn’t have the concept of time.  Any overnight trips were devastating.  Facetiming is required and sometimes tears ensued during or after a conversation.

His saying goodbye extended to others in the family and he would ask family to wave at the window as they got in their car to drive away.   When they failed to remember he would cry and get upset.  One day baffled by the NEED to wave goodbye, I asked him why.  As he stood by my office window, he quietly turned away and as he walked out said “well, I never got to say goodbye to Lydia so I like to say goodbye.”

My heart broke.  My then 4 year old making sure the goodbyes are said so he has no regrets.

Now – any departure I make needs to be stated ahead of time.   If I spring it on him there is chaos, a meltdown and he is unable to process the information.  Questions follow of timing and if I’ll return for his bedtime.  He will ask where and who I’m going to see and if he can accompany me.  Even on the most mundane trips he will tell me he is going with me.

I often wondered why a boy of 5 would rather attend a physical therapy session than stay at home and play with cars.  Last December, I found out why.  As I announced I was heading Christmas shopping while he attended basketball practice with his brother he stopped in his tracks.  He dropped his coat and started questioning me about my shopping trip.  In tears he exclaimed to my husband he was not going to basketball but instead would be going with me.

Tom, who has very little patience for all the tears, without batting an eye, turned around and left.  Grant, continued to cry by my feet as I stood there dumbfounded how the excitement of heading with this brother could turn into full fledged tears.

As I lowered to the floor where he lay there still in tears I pulled him on my lap.  I asked him why the tears and the need to come with me.  He looked up and simply stated  “I’m afraid you’ll get in a car crash and you will die and I’ll never see you again.”

And just like that I realized how much the death of his sister has tarnished his view of life.  At an age where everything and everyone is invincible he is scared beyond belief.  And as a parent who had put him in therapy, who has tried to encourage his autonomy as he walks bravely into school, tried to make sure he saw a strong parent after the death of his sister…I feel helpless. Completely and utterly helpless.

I want to fix it all. But, I can’t because she is gone and in this little boy’s mind he is scared that someone else he loves will die too.  All he knows is that he went to bed and woke up and his sister was dead.

The last time I felt this helpless was when Lydia received her epilepsy diagnosis.  When they walked in our hospital room like they were handing me a death sentence.  Only to fall apart after they spoke and left the room because I couldn’t control or stop any of it.

This week I feel helpless again.  As myself, a coalition of parents along with my Senator received the news that due to 2 State Senators, our bill in Wisconsin to provide CBD oil for epilepsy without prosecution, would not receive a vote.  The political machine was at work making sure the people that elected them in were told their voices didn’t matter.

In the late evening when everyone else was getting ready to crawl into bed they pulled a political maneuver that most would never know, see or care about.

It is crushing to me  and others who so desperately need other options to know that one Senator –  Vukmir – seemed genuine in her original support in the law in 2014.  So much so, she purposely came out and hugged all of the parents who stood in the hallway after the vote.  Her sincerity was believable.  As she hugged several of us she proclaimed her happiness for us that we would now have access to the oil. Looking back, with her formal training as a nurse, it is easy to see she never had any intention of this law gaining ground. Before the bill passed she added a provision which she knew  would never allow the bill to work or parents to feel the light of day with access to the oil.

With clear support for a fix a select few politicians in leadership positions once again failed us.  Failed Lydia.  Once again the helpless feeling of not knowing how to save others from the possible dreaded aftermath of losing a child wreaks havoc in my heart.  I sit everyday not only with her loss but the loss that has affected everyone in our family.   Everyday, I try to give reassurance to my two boys I will always love them but I’ve learned I can never guarantee them I’ll always be here.   They know all to well how fragile life is.

Before Lydia died her cocktail of anti-convulsants were wreaking havoc on her body. Unlike her, she crawled toward me in tears, onto my lap and put her arms around my neck. She had never done that willingly.  I buried my head in her shoulder and held her tight as I cried telling her “mommy, is working on something, I promise.  Please hold on, please hold on…I love you and mommy is working hard. I won’t give up – just hold on baby girl.”

Feeling helpless as a mother is the worst feeling in the world.  To know, even as hard as you try, you can’t fix or take away your child’s pain.  But, probably, like most parents I know that giving up on finding that fix is not an option.  Our children depend on us to be their voice to help them.

Just like Lydia, my son and this law.  I will never give up.  There is something to be said about poking the bear, but beware when you poke a momma bear.