My Big Kid This Week

From baby center....."Your 5 year old should be doing this"

Look daddy....gum!

Flashbacks

I am having flashback to what jack went through in BOston. How he would look at me when they were doing procedures.

Today Will turned 3

I remember when jack turned 3. In fact, he was never anything but 3 to us, having spent his 4th birthday in the hospital.

I look at Will now and he reminds me so much of Jack. He is about the same size and talks and plays alot like Jack. The coming year will be hard because I will be reminded of Jack and all he never accomplished. He was never 4. Forever 3.

Will is a delight and a blessing to Sam and I. He continues to be. He was so sweet tonight at his birhtday. You could just likce the skin right off of him. He was so excited and thrilled with everything he got for his birthday.

I remember Jack's 3rd birhtday. It was the last "party" I got to give him. I was so stressed out, so wanting it to be perfect. I remember the funniest thing, we had a cooler in the kitchen full of drinks, on the top was a couple of drink holders. Jack thought it was the perfect spot for his cupcake.

Sweet sweet boy who deserved better than what he got in life.

Things Jack Loved

pimento cheese
Toy story
trains
monster trucks, esp grave digger and max destruction

You've Got a Friend In Me

Growing UP

I just realized the hardest part of having kids.

They grow up.

Heart Kids

I follow heart kids on carepages, facebook and on their websites. It is hard to do it, whether they are doing good or bad. If they are doing bad, I remember when things were bad with Jack and that old ache comes back to me. If they are doing good, I can't help but think, why wasn't that us?

Some support, huh?

I miss Jack. I miss him so much it takes my breath away

were there signs?

Broken bracelet
Rosemary
Frannie
Miscarriage

White cars or signs?

"Carry Me"

At least once a day a lovely little voice says, "Mommy, I carry you". Which means, please pick me up, I am tired or I need to see/get something up high.

I sat in a lot of smoky bars in order to hear those words.

I remember when Jack used to say the same thing. And when Will came along, I used to carry both boys down the stairs. Sometimes one in each arm, sometimes one on my back (Jack) and the other in front (Will). I loved that feeling.

It made sitting all those nights in all those smoky bars worthwhile.

What Will doesn't know yet is that he really carries me, not the other way around. He helps my sad heavy heart pick itself up and move on with the day. Reminds me that their is another life in this house that needs me, wants me and loves me unconditionally. And that Jack my be gone in body but he lives on through Will and how Sam and I will raise Will and the man he will become.

Another gift from those lovely Robertson Boys.

Weekends

Weekends are hard, our days are not as structured and so the "loose" time makes us miss Jack so much more. He would have been in the yard today, with his Da helping fix the sprinklers and trimming trees. Or would he have been helping his mommy clean out the cars. Probably a little bit of both.

It is hard to imagine that he was here just a year ago and now he isn't. His spirit is so strong, we miss him so much. I hate to think that this time next year, I can't say, "he was here a year ago.".

We were probably still full of hope doing our Sunday routine of laundry, mass and the like. The hospital is quiet on a Sunday, keeping the status quo. The weather is probably changing in Boston, no longer humid but now a bit of chill in the air. I remember this time last year and how I had no clothes and no shoes for the cold weather.

I miss having hope.

I miss taking care of Jack.

I miss him so much.

Our lives will never be the same.

Happy Birthday Jack

Happy birthday baby! The day you were born was one of the happiest in my life. Having a child fulfilled my biggest wish in life, to become a mom. Being YOUR mom made it even sweeter. I loved caring for you in every complicated wonderful way and seeing you thrive and grow and overcome so much. Never have I seen such a determined confident child.

You took your own time coming into this world, which set the tone for your entire life. You always did thinks your own way, in your own time.

Thank you for being such a wonderful child, for teaching me so many things for showing me what true strength is and to never ever give up no matter what.

Thank you for letting me love you and to be your mom.

I will never stop loving you Jack and I will never stop missing you being here part of all the fun.

I will always wear red on Spetember 8th, the day the world was blessed with Red Jack Robertson.

Love,
Mommy

Siberia

Sam and I aren't talking, he is mad at me, I am mad at him.

Of course it is not about the laundry

It is about Jack.

Who Is To Blame For Me Not Sleeping?

Dr. Pedro Del Nido

Dear Jack

Dear Jack..are you okay without me...do you know how much I love you..do you know Daddy and Will miss you so much..do you know I look for you everyday...do you know how much you mean to me...do you know what I would do to have you back...love, mommy

Things I will NEVER do again

Eat at Friday's
Have Chicken Picatta
Eat at Longhorn
Buy Pimento Cheese

Hold Jack in my arms

sad trip

On first family trip wo jjr and first trip since boston. So hard to be happy and have fun with heavy heart. Lots of reminders of jjr. Last time I was in hotel rm was fay he died. Wish I had stayed at hosp longer just to hold his hand and talk to him. I hope he feells btr now wo tubes wires etc. I physically ache for him. He would have had fun on this trip.

We miss him most when we are having fun

that's what sam said

Sam reminded me of a funny story about Jack, which made us both laugh and cry.

When he was about 18 months old, we would let him go out in the back yard of our old house



Don't walk into the light~ who has to tell their kids that?

The Loss Of Jack

Has changed every aspect of my life.

I no longer take joy in listening to music, watching TV, or going out with my friends. Everything is permetated with grief, over the losing him.

Will I ever be able to enjoy those things again or will they always be tinged with a bit of sadness?

This is so hard

Incredibly hard, on us as individuals and us as a couple. I look at our wedding photos and wonder, what happened to those people? We were happy, in love, glad to be getting married.

Now look at us. We are both running, in different ways. Sam consumes his time with work, I numbly go through the motions, focusing on the house, Will while I decidedly don't take care of my body.

I am so sad, so lost, just missing Jack. Where is that sweet, sweet boy and how is this possible that I will never see him again. How the years will pile up and I will still not be able to see him. He suffered so.

I blem myself but what more could I have done? I stood by his bed for all tohse months willing him to get better, doing everything I thought I could do.

And even before that we did everything. His medicined was only late 3 times.

That beautiful child.

He is saving us

That Will, what a treasure he is. Every day he saves us~ Sam and I from a day full of misery and sadness. He is the reason we get up in the morning and put one foot in front of the other. He will never know how much he has done for us, how lucky we are to have him in our family, how proud Jack would be of him. He is a light that William, always has been from the moment he was born. To say we love him doesn't do it justice.

I hope that he grows up to be a kind, gentle man. I hope he has a ton of children who give him the same joy he gives his dad and I each and every minute in these dark days we are in.

An Open Letter to Molly and Kate

I am so sorry your childhood was clouded by this grief. Know that your cousin Jack loved and adored you. One of his first words were "Dee" and "Olly" for both of you. How excited he would get to see you, how he loved being with you.

I am sorry that you had to experience this loss, this sadness, this tragedy. It isn't fair, it isn't nice and it isn't easy.

I hope you remember Jack and are able to share stories about him with Will, Nora and Liam. Like the time your "babies" needed a Mickey button and feeding pump. How we used to tape heart monitors to your dolls feet, just like Jack. How Kate drew pictures of Jack with "blue lips". How you believed you had a little cousin, without seeing him for 47 days. How you loved being the "big cousin".

I love you both and can't wait to see what wonderful women you grow up to be. Thank you for letting me be "aunt bee bee"... the coolest. :)

The Mission of Motherhood

"And the fundamental mission of motherhood now is the same as it always was: to nurture, protect, and instruct children, to create a home environment that enables them to learn and grow, to help them develop a heart for God and his purposes, and to send them out into the world prepared to live both fully and meaningfully."

~ Sally Clarkson

How many kids do you have?

GOt that question for the first time at swimming lessons yesterday

mash episode

moving clock to 12/16 did that really help?

My lovely husband

Thinks we should have more kids because, "we are really good at raising them and great parents".

He is lovely.

Crash

and my biggest worry is, "will they let me take the window"

balancing raising will vs. mourning jack

Dont' want Will to live in Jack's shadow

Those clothes are getting tight on him, soon he will be in clothes that Jack never wore, go to a school Jack never attended and maybe ride in a car Jack never rode in. I know this is part of the process but I hate it.

swimming

Today we went to the PV pool.....so sad, so depressing but put on a brave face for my sweet Will.

Felt like I was swimming in a pool of grief

Royals game

Run around the bases? No not jjr, had to play in rocks!!

Oh To Have Those Problems Again

Funny how as moms our days are so intertwined with how our kiddos are doing. More so when you have a heart child, I think.

I wish that I could tell other heart moms not to worry, that things will be okay but what do I know at this point? I believed in my bones that Jack would be fine, that the trials we faced would make us stronger, that we would look back on them and think "how did we do that" when he was older. I always said that I would take no complaints from him when he was a teenager, because of what he went through as a baby and toddler. "What are you complaining about? Look at this gray hair that I got worrying over you. Now get out there and face the world!".

Oh to have those worries again, those problems. They are far better than the reality we face today~ a life without Jack.

The heart mom fear consumes you, it is all consuming! I pray that my reality is not anyone else's reality. Live in hope my friends, for YOU have nothing but hope~ right? Whatever God's plan is for you, it will come in its own time but you will face it with courage and grace as you have done these past years with your heart babies.

Jack keeps a lot of things real for me. I have to be a better person, not get caught up in the day to day crap that faces us. Oh! And the people who complain about fixable problems. I could just scream at the thought of it. :)

What Would Have Been

I was looking through some photos of Jack, many from birth to 2 years old. What a project he was, what a struggle we both had.

That is why this is so devestating. He and I along with Sam worked so hard to keep him alive, healthy. Making all the right decisions, or at least trying to. Then why was the biggest decision so wrong?

I used to say to him, you dont' understand all this now, but someday you will when you are out living your life.

And he isn't here for me to say that. And I am mad he had to suffer so, what was it all for?

Lord above I miss that boy.

And A Word About William

What a joy

His laughter is contagious, reminds me of Jack

Which then makes me sad to think Jack isn't here to share in the mayhem

But Will keeps us going, he is our saving grace.

So lucky to have him in our family.

"I Love Our Family"

:)

How Are You?

Everyone asks , how are you doing? We are doing okay. This is so hard. I can't believe Jack isn't here with us. We miss him so very, very much. He was such a special spirit and added so much to our lives. He went through so much to live, it is awful to think he isn't here to really live the life we wanted for him. So we are sad a lot but Will is our joy, he keep us going. He is so verbal, always talking about Jack, wanting to wear his clothes, play with his toys, etc. He still thinks Jack is in Boston with Dr. Marx, sometimes I don't even correct him. How can I explain this to him when I don't even understand it?

This is not what we had planned, obviously. We always wanted to be a beacon of hope for other parents, sort of, "look at this child, look at what he has been through and he is still here". A "we can do it, so can you" attitude. That is all lost and we are trying to make our way through it. We are not a beacon of hope anymore, rather we are all heart parents worst nightmare. That is not who we want to be, or what we hoped to be.

So that's why we are trying to spread a little sunshine with Jack's Heart Fund. Jack was such a compassionate child, in fact people would tell me how compassionate he was even at an early age. His heart fund will hopefully carry that compassion on in his memory, helping out others who were in the same situation.

I will never stop blaming myself for what happened, or stop asking myself what could I have done differently. I know so many decisions were out of my hands but ultimately I/we signed those consent forms. I pray that Jack doesn't blame me or hate me for what happened, or the pain he was in. I was only trying to do my best for him, and give him the life he deserved.

Funny, the circumstances that led us to Boston. I remember this time last year, we were so full of hope, worry and promise. We knew that Jack would be given his life back in Boston, we believed in so much. Now we don't have him and have to accept the fact that we will never know why. That is hard for an old mom like me to accept, since I would have traveled anywhere for Jack's care.

We miss being in Boston. There was hope in Boston

Mother's Day

I am not a courageous mom

I did what I had to do to get my son the life he deserved to live

He is not here

So I am not courageous

I am the mother of two boys, one on Earth, one in Heaven

Not what I had planned.

They all went on with their lives

Went home
Put their kids to bed
Got engaged
Had babies

Operated on other kids

We went home to
and empty room
a dresser full of clothes he will never wear again
toys that he won't play with

dreams that will never be

I miss you Jackers.

The Grief is Like A Blanket

It surrounds me
It comforts me

Weird I know

But as the days go by
And he slips farther away

I know that this grief will change

And when it isn't so severe, so raw

He isn't as real anymore

So the grief is like a blanket
It comforts me
It makes Jack real

Jack Should Be Here

Playing on a rainy Friday afternoon in his cousin's basement. Helping Molly set up the trainset for Liam and Will, laughing at Kate's antics and being gentle with sweet Nora.

Got a lovely thank you today from a child we sent a gift card too. His words made Sam and I cry. We hope you are proud of us Jack. We certainly were proud to be your parents.

When will Sam and I quit questioning what we did? The decisions we made? Do the doctors and nurses feel any remorse?

How we miss you Jack each and every second of the day.

Not Sleeping

I havent' been sleeping well these past few weeks. Hard to believe, I know. Tonight was no exception, except that Will would not settle down. He would not go to sleep, and after much wrangling with him, I fell back to an old trick I used to pull with Jack. I would lay in bed with Jack and re-live the day with him. I would start by talking about what we did in the mornign, what we ate for breakfast, what we did during the day, etc. Sometimes it worked, sometimes it didn't.

When he was in the hospital, I used to re-live those days again with him. To keep his mind off things and to make him remember that there was a life outside of that bed, that ventilator, that room.

Wish you were her making new memories and living new days with me Jack.

I miss you Jack. I love you so much.

Mommy

Seeing Nurse LeeAnn

One of the first nurses to take care of him, we will never forget her

Hard to explain what happened, what a weird coincedence to see her

I miss his little hand
I miss his little heart

Why did he have to die

One Hundred Days

Nothing short of Jack being here will ever make any of this right. I can't believe he is not here. He was such a joy and I miss being his mommy. I hope that he isn't mad at me and knows that I did try my best. I would have moved any mountain, taken on any obstacle, fought any battle for him. He was so worth it.

My heart is broken.

I miss my child.

Relive it to Forgive it

Really, why do I have to do this?

Day Before Easter

Tonight is the night before Easter and wow, I am missing Jack. How my life has changed going from two child to just one. Aside from the obvious differences, only buying a half gallon of milk, instead of one and the lack of laundry that I hav etto do for the under 2' set, to how easy it is to get out of the house in the morning.

No, tonight I am remembering my first Easter with Jack and how stressful it was. Packing to spend the night in STJ, trying to remember everything, meds, milk, pumps, clothes, spare supplies, th elike. The back of my car was jammed packed. By the time I arrived in STJ we were both exhausted. Didn't sleep well, then up for an early Mass, which I walked the back of the church for the entire service. I remember feeling, "I am so tired". Jack cried all the way back to KC in fact, we had to stop to make sure he was okay. It was a wild weekend.

Last year I rmember the stres of trying to get everything done on Saturday, shoes to shine, clothes to iron, baskets to pack, bunny items to get out, food to prepare. It is amazing how little Will requires, or how much goes into getting two kids ready.

I miss Jack. Nothing short of him being with me will ever make this right. He was a lovely, loving little boy. I love him! Happy Easter baby boy.

My Sweet Child

Sweet Child
God made a sweet child
a child who never grew old
He made a smile of sunshine
He molded a heart of pure gold.
He made that child as close to an angel
as anyone ever could be
God made a Sweet Child
and He gave that dear child to me
Then God saw His wonderful creation
growing very tired and weak
so He wrapped the child in His loving arms
and said, "You my child I keep"
But now my Sweet Child is an angel
Free from hurt and pain
I'll love you forever, until we meet again
So many times I have missed you
So many times I have cried
If all my love could have saved you
Sweet Child you never would have died.



author unknown

Tub of Stuff

Tub of Stuff that is full of Jack.

Christmas 2009 gifts that he will never enjoy
His wellie boots
His orange sweater.
His monogrammed hat.

All the things that make me think of Jack.

Someday I will open the box up and find some joy in going through those things.

Not today however.

The Boy Who Will Never Again

grow any taller than where his growth chart is now
attend school
have the tooth fairy come visit
feel the wind in his hair, the sun on his cheek
make a snowman
hunt easter eggs
kiss his mommy

I appreciate honesty. It is refreshing and welcome. However, there are so many people in our lives right now that either say incredibly cruel and unintentionally painful things to us or are avoiding us all together. For now, the best approach is to acknowledge our loss of Jack and move on. Believe me there are no words that can fill this Grand Canyon of Grief and Loss.

I know the spot most of these people are in. You want to reach out, but what in the world can you say? And to some extent, you feel "survivor" guilt, your child is alive running through your house, my child is laying in a cold grave.

I know these feelings all to well, since I have a close friend, who's son Johnny lost his battle with HRHS two years ago. He and Jack were 10 days apart in age, played together and our paths were so similar. I ached for her each and every day after Johnny passed away but was struck mute~ what could I say to her? My words were so hollow. And to some extent, I worried frantically that I would be in that same spot one day.

And now I am.

So I welcome emails and texts. I may not respond immediately but read them right away and take comfort in them. Don't worry about offending me or disappearing. There is no road map for this journey. All's we can do is our best each and every day.

Quote

"Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind." ~Theodor Seuss Geisel

Knowing Jack

It is important for me to know if Jack is okay. I don't know how I will go about finding that out, I just hope he is okay. Your job as a parent is so fundamental. Are your children cared for~ warm, safe, dry, sated? I don't know that about Jack right now. On the flip side of things, I am no longer worried about him. Is he blue? Is he sick? Is his heart failing? Those constant worries that I had for 4 years are gone, out of my system. And I dont' have them with my other son, Will. He is healthy as a horse.

I feel guilty for making such a big deal about the coumadin, now it looks so small in the big scheme of things. How I would have dealt with it, dialysis, medication, anything for that wonderful boy. He was such a delight to know, to love, to care for. A big personality. My son, my personality. Always fighting, never giving up.

I know that he didn't want to die. That is what makes all of this suck.

I am sorry Jack that you aren't here with me to live your life. I promised that you would honor and glorify those who made it possible for you to live. Guess they weren't listening to me.

Mwah.

Another Day

It is amazing how painful this all is for Sam and I. We miss our little red head so much. Everything hurts.

I talked to one of his nurses today and we both cried on the phone with each other. She never heard Jack talk although he was quite able to voice his likes and dislikes with a breathing tube. He knew all their voices, he heard them in his sleep.

She said that Dr. Del Nido thought Jack was going to be a text book bi-vent case. Jack as usual had to prove that wrong.

I miss Boston, where we still had hope. I miss all those people who loved my boy and wanted him well.

What happened?

Today I am washing Jack’s clothes from Boston. It, along with most everything else, is painful. The little shirts that he wore, pjs that he never had on in the hospital, the last pair of shoes that were on his feet give me a stomachache. Again I am crying. Where is my baby and why is he gone?

Those clothes take me back to July 2009 when we were so hopeful (or was it arrogance) that led us to Boston. It was so long ago that we were with Jack in the admissions department, watching him play, running up and down the hall between the surgical admissions office and the cardiology clinic. If I could reach back in time, I would say “Bridget, be careful, make sure this is the right thing to do for Jack.” Lord I feel guilty. We signed those consents, we might as well have been signing his death sentence. The day was warm and bright, we were so full of hope and promise. This was going to be the fix, this was what was going to give Jack his life back. Instead here it is January 2010 and my boy isn’t here. The words, this sucks, doesn’t even cover it.

I miss my child so much it physically hurts. I feel like I let him down, we promised so much and in the end he died so young.

Please don't be mad at me Jack.