Eight Years

 Hey Bubby, 

It's been almost eight years Lukie. Eight years since I hugged your neck, eight years since you threw yourself in my arms from across the room. Eight years since I kissed your nose and told you how much I love you.

Some days it feels like yesterday, and somedays, it seems like a lifetime ago. I remember how to breathe on most days now, the days I forget are few and far between. I still think of you every day, several times a day. You are still the first thing on my mind when I wake up, and the last thing on my mind before I fall asleep. 

There is a family I follow on social media, their three-year-old twins drowned in November.  The sister made a full recovery.  The brother, not so much.  He is alive and breathing on his own, but that's all.  He is stuck in a body that doesn't even function as a newborn.  My heart aches for his mama, with every update she posts, the optimistic and the forlorn ones. She is trying so hard to stay strong for her baby boy, chasing treatments and processes, trying to give her little boy some semblance of his former life back. I can't help but think that could have been us. I could have done the same things to you. Hoping, praying, traveling all over the country trying to find a treatment, a provider, a cure for your body and mind. I wonder if I would have had the strength to work that hard for you. Was it easier to just let you go? The more I think about it, and I think about it a lot, I think I did the right thing by letting you go. I think you fought hard my little man, you fought to come back to me, to us, but your body had had enough. It was tired and shutting down. I don't know if this little boy's mind is the same as it was, but I can't help but think you would have been miserable and wished for release instead of being stuck in a body that didn't work. As energetic and active and full of life as you were, living in a body you couldn't control would have been awful. 

I know, not I just believe, but I KNOW that you are in Heaven with your brothers, your Pappaw, and your Grandpa.  I know you are free to run, climb, chase angels, poor angels. I can't wait to see you again, to hear your squeaky voice say I love you mama.  I can't wait to hold you in my arms again Lukiepie. I miss you THIS much. 

Christmas

Two thousand years ago, God sent his only Son to save a sinful world.  Mary gave birth to a baby boy who would one day save her soul.  God knew on the cold, lonely night that one day, His baby boy would die with the sins of the world on his shoulders. But he still allowed Mary and Joseph to raise that little boy, to love and care for him with all they had.

Eight years ago, I had a baby boy whom I love with all my heart.  I cared for him, kept him safe and healthy.  I kissed his boo-boo’s and brushed his hair, just a Mary did for Jesus.  Mary had Jesus for 33 years, before watching him take his last breath.  I had Luke for 7 years, before cradling him while he took his last breaths.

I firmly believe Jesus met Luke in the water.  He held my baby boy and kept him from being afraid.  I KNOW  Luke is with Jesus now, planning a huge birthday party for the King of Kings.  I am pretty sure Luke is trying to convince Christ to have spaghetti and chocolate cake for his birthday party, maybe even spaghetti taco’s.

Merry Christmas baby boy, give Jesus a birthday hug for me and please don’t try to give him birthday spankings!  I know you can count that high, that’s not the point.

Haven't you moved on yet?

It has been 15 months since Luke died.  15 months since I hugged and kissed my baby boy.  To say a lot has happened in the time would be a gross understatement.  To say life has been hard would be like trying to fill a bucket with an eye dropper.  We have all changed.  J, K, and I are different than we were 14 months ago.  We still get up every morning; we still go to school and work.  The kids play, bills are paid and the cats are fed.  Sometimes, everything is done all on the same day. 

I have started to hear, it’s been a year already, aren’t you over it yet?  You can’t use Luke as an excuse the rest of your life, you need to get over it and move on.  You have to start living again.  Life goes on… the kids need…. (Whatever the person decides the kids need.)

So here is my reply to “Aren’t you over it yet?”  No, I am not over losing Luke.  No, my kids aren’t over losing their baby brother.  We will never “Get Over It.”   If you lost your arm in an accident tomorrow, would you ever “Get Over It?”  I don’t know, but I do know you will have a part of you missing for the rest of your life.  You will learn to do things with your other arm, you will probably become very efficient at living life with just one arm, but there will always be a part of you missing.  There will be times when you forget about that missing arm and try to use it. Then the pain and knowledge of the missing limb will hit you life a punch in the gut.   There will be times you would give anything to have that arm back, even if just for a few minutes.

I didn’t lose my arm, I lost my child.  The child I carried inside of me for 9 months, the child I rocked to sleep, the child I caught when he would hold his breath until he passed out.  The little boy who would hide in cabinets, text me while standing in front of me, launch himself into my arms from across the room, the snuggle bunny who wanted to hear Jack and the Beanstalk before bed, and then tell me he was too scared to sleep alone.

This amazing little boy was ripped from our lives.  There was no long lingering illness; there wasn’t knowledge that he would be living this world after a just seven short years.  I talked to him on the phone, told him I loved him and would see him the next day. 30 minutes later, he was gone.

So as hard as I try to keep life going for my two living kids and myself, as hard as I try not to use Luke as an excuse for a bad day, for the kids misbehavior, for the constant stomach ache and short temper, it is because my baby died. 

I know teachers are tired of hearing me explain what my kids have been through in the last 15 months, and I don’t want the kids to use Luke as an excuse for poor school performance and bed behavior.  I don’t want to use Luke as an excuse for missing work and trouble concentrating.  But sometimes, that is what it is.  Sometimes, like now, there is no amount of deep breathing, going to a happy place or breathing in a bag that can stop the tears and not being able to catch our breath. 

I still haven’t figured out how to live life without Luke.

God Winks/Lukie Smiles

I went to Starbucks Thursday after work, something I rarely do.  I usually go on the weekend, whatever morning I open.  Sitting in the drive-thru, I had the overwhelming urge to pay for the car behind me.  I glanced in my rearview mirror and saw a very expensive car, with a very nicely dressed woman on her cell phone.  I thought, surely, this woman can afford to pay for her order, she has a nicer car than me, is dressed nicer than me and I only have so much on my Starbucks card.

The more I argued with myself, the more I felt like I was Supposed to pay for this woman’s order.  I argued until I got the window.  While I was waiting for the person to open the window, a large brown wrapper from a Reese cup flew by my windshield and landed on the window ledge.  That has never happened, but I took at as a sign from God and Luke (Reese’s were his favorite candy) that I was going to buy this woman’s order whether I wanted to or not.  I asked the person at the window how much the lady’s order was, and it ended up being less than $3.00.  I had enough money on my card to pay for it.  So I paid.  The person in the window smiled and said she loved it when people did pay for the next person.

There were no bells and whistles, I didn’t win the lottery the next night, (darn!) but I felt like Luke was smiling down on me.  I will never know why I had to pay for that person, but I hope it brought a little bit of happiness to her day.

PTSD

I haven't really talked about how J and K are doing since Luke’s accident.  I try to respect their privacy, especially since I am always telling them once you put it on the internet, it is out there Forever.  But I feel like I should talk about J for this post.  He was diagnosed with PTSD a little over a year ago.  He saw Luke drown in front of him, he tried to save his baby brother and failed.  He saw them sticking Luke with needles and putting tubes all over his little body. He saw them shocking him, he saw the CPR and the doctor’s and nurse’s faces while they worked.  He stood next to me while Luke took his final breathes.  That is a lot for an adult, I can’t imagine what it was like for a 9 year old boy.  From the time Luke was born, he was J’s best friend.  There was NEVER any jealousy on J’s part.  He took his role as big brother seriously.  He was Luke’s best friend, protector, cheerleader and co-conspirator.

After Luke died, I immediately put all three of us in therapy.  Due to insurance constraints, we have had a few therapists…. The most recent is Thelma.  She specializes in childhood trauma and is working on her Doctorate degree in Psychology.  She is the most patient, caring person I have ever met.  She has been good for J and me. 

That said, J and Thelma are doing hard work, talking about the day Luke drowned.  They have been working on that day for the last 2 months.  J finally had a breakthrough Friday and was able to name a feeling, an emotion about that day.  He has struggled with that for the last 15 months.  We are both SO proud of him!  On the dark side though….. This has been very, very hard on him.  He is not handling things well.  My once sweet, huggy, wouldn't hurt a fly child is struggling with anger towards himself, his dad, his sister and me about that day.

I have told him so many times it wasn't his fault, it should be ingrained in his head.  I have told him the same amount of times that his dad did not mean for Luke to get hurt and die, that he made a very bad decision.  J is mad at his sister for not going that weekend, not being there to save Luke.  He is mad at me for making them go with their dad that weekend.  He hasn't said he was mad at Luke, but I wouldn't be surprised if he was, that is a normal part of grief.  Luke left him here and is in Heaven with grandpa and papaw.  Crap, I am kinda jealous about that!

This weekend has been horrible.  There are so many triggers for his PTSD, it is like living in a minefield.  It has been one outburst after another.  He has spent more time in his room calming down than he has in the 3 years we have lived here.

I would appreciate any and all prayers for my kids…..  we have a long road ahead of us.

Grief and Life after Loss

Earlier today, I shared a post on Facebook about grief and losing friends after a loss.  It could describe my life to a tee.  Some people used Luke's accident and death to make themselves look good, while they were there for the kids and me in the hospital, then quickly disappeared again, and others have just stopped talking to me, and others have tried to get closer so they can be in the know, or to make themselves look good or feel better about themselves.  There has been a small, core group of people who have truly been there for me.  They have dealt with my tears, my mood swings and my crazy ramblings.  I am incredibly grateful for them.

However, I am getting the feeling that they think I should be "Over it" by now.  After all, Luke has been gone for over a year now.  We have been through all is first milestone's.  There should not be any more bad days.  Or they should be few and far between.  When I am having a bad time, it is an excuse to get out of something.

Here's the thing. I am NOT over losing my baby boy.  I will NEVER get over it.  I know from experience, the pain will lessen, it will become more bearable and I will be able to breathe on a regular basis.  But that will take years.  Even then, there will still be days that take my breath away.  The day his class graduates high school, when Jon and Katie get married, have babies, other life events where there is a hole where Luke should be.  

There are still days when it is like a sucker punch to the gut.  Days when the grief becomes too much to bear, when I can barely pull myself from the bed, much less walk to the living room or beyond.  I don’t know what else to say except until you have walked a day in my “Ugly Shoes”, don’t judge my grief.

Ugly Shoes

A Pair of Shoes

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.

Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.

Yet, I continue to wear them.


I get funny looks wearing these shoes. They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.


To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.


Some women are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have worn the shoes so long that days will go by before they think
about how much they hurt.
No woman deserves to wear these shoes.


Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has lost a child.

366 Days

That is how many days have passed since I buried my youngest son.  366 days ago, I stood at my dad's grave and watched Luke's body be lowered into the ground.  It is 370 days since Luke took a breath. I can no longer say, "This time last year, Luke..."  This time last year I was still in shock that I had buried my baby.  This time last year, I called the kids in from playing and hollered, "Katie, Johnny, Luke... time to come in."  As soon as the words left my mouth, I realized what I said.  That has happened a few times since.

My plan was to take the first 10 days of August off and focus on Jon and Katie and grieve Luke. Unfortunately, life got in the way of that, and we were busier than we were the entire summer.

I sense Luke often, silly things happen, doors won't shut, volume goes up and down.  The kids are convinced Luke is still here causing mischief.  But I know he is in heaven with Jesus and his grandpa and papaw.  But it is nice to think he comes and visits sometimes.

School starts in 3 days for the kids.  I am not looking forward to the first day.  This was Jon and Luke's last year together at Okolona.  Next year, I was supposed to have a child in elementary, middle and high school.  This new normal really stinks.

New Normal

Sitting down to supper the other night, Katie said it felt like normal, except it wasn't.  We have struggled the last 10 months with meal time.  I have a hard time going in the kitchen where Lukie used to stand next to me begging to help or for a taste or both.  He would bring me cookbooks and show me what we would make next.  He would tell me I needed to be on Worst Cooks in America because I was such a good cook, I would surely win!

Because it has been so hard to go in the kitchen, we have had a lot of sandwiches and cereal.  But I am trying to get back in the groove of cooking, mostly because the kids try to burn the house down when I let them make mac and cheese.

Shells and Cheese minus the water

Then there was the Easy Chocolate pie that was supposed to have three Tablespoons of Cocoa Powder, not three CUPS.  That should look like chocolate soup.

Easy Chocolate Pie

The hole in our family dynamic is huge.  At least once a day someone says, "Luke would love that." or "Do you remember when Luke..."  We have talked about setting a place at the table for Luke, just to remember him, but they aren't to excited about that yet.  Maybe later. Definitely for holidays.  

Jonathan is still adjusting to not sharing his room with anyone.  We still call it the boys room and the boys bathroom.  I have and will always have three kids.  Katie will always have two brothers, and Jon will always be a big and little brother.  He is not my youngest, he is still my middle child.

We have packed up most of Luke's things, there is a box in the hallway filled with Luke clothes my cousin is going to make into a quilt when I finally send them to her.  We found all the pieces to his favorite toys and his pillow pets decorate my couch.  I sleep with his two favorite stuffed animals, Austin and Mario from Build-A-Bear.



Today we went to Kentucky Kingdom.  Jon and Katie had a blast, but I kept thinking I should be counting three heads all day, especially in the water park.  It took everything I had to let them play in the water park.  I sat my self by the life guards, ready to push them in to save my kid in a heart beat.  At one point, I couldn't find Jonathan and couldn't breath.  He was fine...  I don't want them to be fearful, I don't want them to be scared of the water...  they need to play and have fun and the water is fun when it is 89 degrees!

Yesterday someone asked me if I had two kids.  I thought for a brief second, "Do I want to tell them about Luke?  Do I want to go into that story at work?" Then I said, "Yes."  The reality is, I have five kids, two babies I lost in pregnancy, Jon, Katie, and Luke.  I have FIVE kids.  Three just happen to already be home in Heaven waiting for the rest of us.

Luke's day, the day we took him off life support is coming faster than I like.  Up until then, I can say we did this with Luke last year.  After that day, it will be over a year since I have held my baby boy in my arms, over a year since I have kissed his head and nose and heard him say he will always be my baby bubberbutt.

I am really not liking this new normal.

Little Surprises

Hey Stink!

You are living up to your name tonight.  Jonathan has been cleaning the room you guys shared, still and always knows as "The Boys Room."  The things we have found....  you sure were a sneaky little boy!  Remember the house you promised to build me and make Katie and Jonathan live in the back yard because they are too messy?  Well Luke..... I guess it is good there isn't Nesquik and peanut butter in heaven.  And if there is, at least it won't mold when you hide them in the closet in your big house in the sky! 

We have parts of your Leap Pad, your 3DS and all of your animal hospital.  I have a large tote full of your clothes, you had more footie jammies than a Carter's outlet.

I am really proud of Jonathan, he is handling the cleaning a LOT better than I am.  He started a few weeks ago with Crackle, but Crackle has been on vacation, so Jon's surprise for him when he gets back is a completely clean room. Or at least as clean as a 10 year old can clean.

I am working on going back in the kitchen, but it is so hard Lukie.  Every time I go in there to cook, I hear your little squeaky voice asking what are you making, can I help, can I break the eggs, lick the bowl, put the cheese on.  You would bring me a cook book and tell me all the things we would make next.

Sometimes I think you are haunting Snowball.  He has decided whenever I sit in my chair, he has to sit on my chest and put his head on my shoulder.  Like you used to do.  You would sit on the arm of the chair and put your head on my shoulder.  I miss brushing your hair off your forehead and kissing your head. I miss you smelling like rainbows and butterflies after playing outside.  I miss you running across the room and throwing yourself in my arms for all you were worth.  

There is a huge hole where you are supposed to be baby.  I miss you so very much Lukie.  Some days the tears fall freely, like today.  Other days, the screams come from the depths of my soul, but there are no tears.  I can't help but wonder what the neighbors think as I scream in the shower.  Scream and wail.....

Next year you would be third grade.  Such a Big Boy bubby.  I think you would start being embarrassed about being my babybubberbutt.  But I am going to hold you to your promise that you will always be My BabyBubberButt.

I love you baby boy.  Tell Grandpa and Papaw and Great Granny and your brothers I love them and miss them too.

Mama

Snap, Crackle and Pop

Snap, Crackle, and Pop are the team of therapists who have walked Jonathan, Katie, and me through the last 5 months of grief. 

We first met Snap last year after Luke was diagnosed with ADHD and ODD.  She became my lifeline to accessing services and help for Luke at home and at school.  She worked several kinds of magic to make sure Luke had the therapy he so desperately needed.  She was/is a life saver!  Snap is our Care Manager.

     Pop was Luke's first therapist.  She was incredibly patient as she learned more than she ever wanted to know about Mario Bros. and Webkinz.  Luke was a computer junkie and would have spent hours watching YouTube videos of people playing Super Mario Bros.  Pop was around for about five months, with the understanding we were waiting for a male therapist to free up, then Luke would transfer to him.  I loved Pop because she is a reader, after Luke's therapy, we would talk about books. 

     In May, a male therapist finally had an opening for Luke and we met Crackle. Crackle is a no-nonsense therapist who would go round and round with Luke like no one else!  He is very articulate and could definitely hold his own against the little boy who could talk an Eskimo out of his igloo.

     The day of Luke's accident, I think I send several text messages them all telling them what was going on with my baby.  After sending several messages, I finally focused on Crackle alone since he was Luke's therapist at the time. 

Luke with Austin and the two Mario's

Thinking back and looking at those messages, I can't imagine what I put those people through.  But they handled things with grace and professionalism.  Crackle came to Kosair on Sunday afternoon and spent quite a bit of time with Luke.  He also sat with Jonathan in the waiting room, talking to him about what had happened and offering a friendly ear and shoulder.  He brought Luke a giant Mario doll that Luke never saw.  The doll was in the pictures we took of Luke in the hospital, front and center on Luke's table at his memorial service and sits on the top of the bookcase with other Luke items in my living room.               

Luke's Memorial Service with
Austin the Dog, Mario the Bear
and the Original Mario.

     After we came home, Crackle kept in touch with Jonathan.  He visited a once or twice that week, and said he would be there for Jonathan at Luke's memorial service if he was needed.  He continued to come until school started and Jonathan was able to connect with a few people at school.  Later on, when it became obvious that was not going to be enough for Jonathan or Katie, Snap and Crackle helped us secure services for both kids.  Crackle saved a space in his schedule for Jon and Pop said she would come back as Katie's therapist.

     With these two people, we have talked about "The Hard Stuff", the good things, cried and even screamed and yelled.  But they come back every week anyway!  I owe my sanity to them both, they have gone above and beyond, coming extra days when needed, staying for hours and hours making sure we were OK before leaving.

     Obviously they all have real names, but to protect their identity, {they may not want to claim us ;)} I gave them nicknames.  They used to be the Three Musketeers, but in my warped mind, they all met at the office every day before starting work and talked about their cases over a bowl of cereal. Hence, Snap, Crackle, and Pop were born. 

What do you say?

What do you say to a parent who has lost a child? You say, “Hi.” You say you say, “I have been thinking about you.”  “I have been thinking about your child.” You ask about other family members. You listen when I talk about my child. You cry with me, and you aren't afraid of my tears. Sometimes crying with someone else is just the release I need. You laugh when I tell stories of my baby.  My son was a very smart and funny little boy and not a day goes by something does not remind me of a Luke story.  You say his name.