Sunday, January 8, 2012

A Year On

Here I am, one year from the date when a wonderful team of neurosurgeons at SickKids told us our son had no brain function. A year from the date I watched a younger member of their team cry silent tears as my husband and I sat there trying to comprehend what had just taken place. I asked stupid questions, like whether this was fatal. Of course it was.  I asked whether they could open his skull to alleviate the swelling. They told us there was absolutely nothing they could do. The swelling was so severe that there was no discernible brain matter, and they had never seen anything like it.

I often think about those doctors, both the neurosurgeons as well as the neonatologists and the nurses we met while at SickKids... Whether they knew all along we were facing an uphill battle. Whether they have ever thought of Jack, or of his family, since he died... Promises of recovery were never made to us, and we were cautioned we were dealing with a very sick little boy. But still, until we were told he had no functioning, I don't think I had let my mind "go there", to the place where we would ultimately have to say goodbye.

January 5, 2011.
I remember we didn't cry when we were told. Looking back we were both in shock. I tried to act logically while my  husband sat there stone faced and took it all in while I turned quickly on my heels and went to be with my boy in his isolate. I wanted him to know that it was okay, that he could go, that I already knew it was just his body which remained, and that his spirit had been set free. I wanted him to know, at that very moment, how much he had been wanted, longed for, desired. How much I would miss him all the remaining days of my life. I wanted him to know he would always be my beautiful son, that no matter what happened, I would carry his heart within mine until it's final beat.

A year ago today, we delved into the world of organ donation. Initiating the steps which would ultimately result in a liver donation to a sick little boy in the United States. Something I am so grateful he was able to do, yet so sad would be the final chapter to his life. Of course, it it had been up to me, he would have grown to be his own person with his own life and family. But that can never be.  Fuck.

In the beginning, there were promises he would always be remembered. That he would be cherished, and adored and missed from afar. That we could always speak of him. But here we are, a year later ad people want us not to speak of him as though he was some sort of imaginary figure. But he wasn't, and he isn't imaginary, and he is very much a part of the story of our lives as any living children we may be blessed with would be. I conceived him. I carried him. I birthed him. I loved him. Then I said goodbye, all too soon. He was real, and he is adored.

My husband's family has been quite clear in their most recent behaviour that they don't want to talk about him.  They didn't even call or email or anything on Jack's birthday... Not because they didn't remember, but "because somethings are better not talked about"... Do you know how much this infuriates me? To know you are discounting the greatest tragedy of my life for your own comfort- so that you can avoid the feelings of grief? Do I think they have any idea how often I replay the last moments of his life, and wish desperately it would have been me that lay there, breathing through a ventilator, rather than him? Do I think they had any concept of the fact that not calling did not equate with us not missing him over here? That rather than recognizing it would have been his very first birthday, they instead chose to ignore it for their own benefit?

I know it's painful. I know this, because I live it day in and day out. At the end of the day, they can lay their head upon their pillow and sleep comfortably knowing their two boys continue to live and breathe. All the while I tuck a tiny stuffed bear given to my boy by a sweet nurse at SickKids into my shirt, to snuggle safely all night long. How wonderful it must be to be ignorant of the fact their son's life is very much different to the one they have because someone is missing. That by simply closing their eyes, they're able to block it all out. I know they loved him, but to push him aside like he belongs in only a memory is not only an insult, but it's infuriating. The only they've fooled into thinking he no longer matters is themselves.

At the end of the day, no one will tell me how to grieve my son. No one will tell me not to speak of him. No one will tell me when enough time has passed to have "gotten over it". It burns to think that one day he won't be spoken of, that he'll fade into the background- that is not okay with me. Of course I cry when I speak of him- I MISS HIM. Plain and simple. I will continue to miss him even once my arms are filled with his sister, because I love them both.

All it does is reinforce why I was worried about being pregnant once again. Because rather than being a source of hope for what we pray will come in the form of a healthy baby, it makes me feel like people see her as an opportunity for them to be grandparents again, because it was taken from them. But it's not about them- not in the least. At this point, I would be surprised if I even let them into the hospital to meet their granddaughter once she is born, because if he isn't anything to them, why should she be, just because she's (hopefully) alive?

I have so much more to say, so much more. But this is all I can get out for now.

34 comments:

Kelly said...

I am just sick and so angry for you. I am so sorry you are dealing with this. I hope you know that you can speak of Jack all you want around people that REALLY get it. We will never forget him. Giant huge hugs to you sweet friend.

Glo said...

Hugs .....I am sorry.....I wish it all could be so different.

Amy L. said...

Wow. So well said, Laura. I'm sorry...

Addi's mom said...

Wow...I'm so sorry that's how they choose to deal with this...I am with you though if they can't love, remember and speak of Jack then why should you let them into his little sister's life...knowing they would cast her aside if she didn't live...I just don't understand. Love both of my children or none of them, those are their options!

Tiffany said...

I feel like I could have written the first part of your post. I never cried when they told us either. And I often wonder if they all knew that second we came through the ER doors what our fate would eventually be... Looking back- it doesn't even seem real.
I'm so sorry about your family...

B. Wilson said...

My dear friend. I hate their actions. If those were friends, we'd drop them immediately while yelling obscenities. Unfortunately, family is hard to get rid of. :(

This just angers me so much. I would want to forever shield Jack's little sister from them because of their ability to pretend like Jack doesn't matter. It's disgusting. I'd have many words of hate like telling them their life will be forgotten when they die, too. It's awful, but that's where my brain goes. :/

Sherri said...

How awful.... I can't believe people actually think that they are better off forgetting, or not mentioning... of course his Birthday should be remembered and honored...
As if this time of year will ever be easy... thinking of you and sweet Jack today, and sending you lots of love!

Natasha said...

I had to stop reading your post for a few minutes because I was so overcome with tears......I hate this for you.

It is so hard in this situation. Like Brandy said- friends we can just cut from our lives. Done. But family is a different story. You still have to have them in your life. Bleh :( I can't say it enough- people suck so bad sometimes. Even family.

I love this- "I conceived him. I carried him. I birthed him. I loved him. Then I said goodbye, all too soon. He was real, and he is adored." Jack is most definitely adored and he will forever and always be your son.

I feel like a broken record and I guess it's because so many of my BLM friends are pregnant or recently had rainbows. BUT I'll say it again. I have never understood how people think one child can replace another. When I first found out I was pregnant with Mason one of my fears was that people would forget about Aiden. That people would think we were going to be all patched up once Mason was born. As if Aiden didn't even count. And the sad part is people DO act like that now. It pisses me off to no end. I have 2 sons!!!!! And I always will.

You will always be mama to Jack AND his baby sister. And you will be speaking his name and remembering him for the rest of your life so those people better just get over it! {Trying really hard not to be mean here}

Hugs my friend.....xoxo

Molly said...

I really thought that bc jack lived outside of you and that they were all able to interact with him that you wouldn't face the difficult struggle we stillbirth moms face with people wanting to pretend they didn't exist. Wtf?? How is it even possible to act that way about one's own grandchild? Such an archaic way of thinking, and I am sorry.

Monique said...

I'm so sorry. Remembering Jack with you & sending love.

LookItsJessica said...

I am so sorry that your in-laws did not call on Jack's birthday, that is beyond awful. I cannot blame you at all for being unsure to even let them meet little girl in the hospital. Jack will always be your family and family is family-- whether its here on Earth or in heaven or wherever it is we go when we pass on.

Still so proud of Jack and his mom and dad for becoming heroes to the little boy in the US who needed a liver transplant. Big hugs to you guys always!

fireworksandrainbows said...

I know exactly what this feels like. I am here reading and feeling every tear and every angry, disbelieving, frustrated emotion along with you...and for you.

I missed it, but Happy Birthday to Jack, and to you as his mama.

xoxo

Brooke said...

Oh, sweetheart. Are Scott and David brothers? Because we appear to have the exact same in-laws. Except when I threw a fit about their lack of acknowledgement of Eliza's birthday, I was accused of not be thankful for the good things (and people) I do have in my life. It's wrong and unfair and infuriating, and I want to e-mail my in-laws everything you wrote here, as evidence that when I say to them that I am upset they ignored her birthday, I'm not being "hateful," I'm acting like ANY mother who lost a child would act. I love her and I miss her and I want her remembered because she existed and she mattered. She meant everything to us.

I'm so sorry that you're dealing with this, too. Remembering your sweet Jack, always.

Caroline said...

I agree with Molly - I was really surprised to read this and so, so sad for you. As if it's not hard enough. Even if you had all the support and love in the world, it would still be impossibly hard. Oh I'm so sorry. But there are so many of us, thanks to his amazing mom, who WILL remember Jack, who will celebrate him and hold him in our hearts forever. We won't ever forget him. And we weren't even lucky enough to know him like you, but your little boy has made a big dent on this world. Don't you doubt that for a second.

Renel said...

AHHHHHGHHHAHAHGHH! I am so frustrated and my eyes are filled with tears. Your beautiful baby stollen from you by illness! IT IS SO FUCKING UNFAIR! I am infuriated at your inlaws that they would treat you this way. That they would choose not to recognize Jack. It would be so incredibly tempting to cut them off from seeing Jacks sister until that apologize....I am so sorry for assholes, for the loss of your baby and all the inconsiderate people who exist among us. Sending love to you and think of Jack and wish he was with you.

Melissa said...

What douchebags.

I'm sorry they are so cruel to you, your husband, & Jack. To discount his birth and existence is just ridiculous.

I can echo your feelings of thinking our babies will not be remembered. I suppose all of us BLMs can. :*-(

Becky said...

My own family also acts like Liam never existed and I should be over it by now. I too have thought many times that if they can't love Liam then why should they get the chance to love his sister either. It is bad enough that we have to be grieving our sweet ones but then to feel like our own family can't be relied on for support either just adds to the unfairness of it all.
You, your husband, and Jack have both been in my thoughts and prayers this week, especially today.

little vitu's mom said...

Dear Laura, to be honest nobody has ever acknowledged my baby and his tragic loss. No one. Not friends, families. In my case, everyone has been just like your in-laws. In the past year, I have dealt with so many different kinds of insensitivities that sometime am surprised that am still sane. But I think we all are, in someway, faking sanity and pretending to carry on. Am pretty sure, IF ever I get a chance to have heathy, alive children, everyone is just going to pass a comment like " see, we had told you that you'll get more children. You had wept for ( that baby-they won't mention that part) for no reason." Am damn sure this is what I will be hearing.

There are days when am absolutely angry; even reading your post makes me so angry at the moment. But I have come to realize, at the end of the day, nobody gives a damn. In the past 13 months I have gone over this numerous times...and somehow I don't care for their lack of care anymore. This feeling of defiance gives me some strength to carry on, because I have nothing else.

Sorry for the long post, most of which probably doesn't even make sense

crystal said...

Jack will always be remembered by us. His precious life has left a huge impact on my life. I am so sorry that you have to deal with these kind of things. I wish I could tell you that it will get better but it doesn't. It's been 5 years since I lost my baby and I still have a hard time and I was talking to a older lady at church today and she lost her son to SIDS 25 years ago and she said it's still hard. She said you always have that void in your heart and it's like you always know when it time for their birthdays that you should be celebrating on that day instead of having to remember them. There will always be that longing. Praying for you!!!

Tiffany said...

O LJ, again I could have written this post. My ILs have acted similar. I refuse to speak to them now because of their behavior. I'm done with them & all people who either minimize Julius' life or refuse to acknowledge it. Jack will always be remembered by those who matter. We love you, we love him.

How has the hubby dealt with his folks?

Dana said...

I'm so sorry that your in-laws won't even mention him. It is just ridiculous that they won't and I'll never understand how they can be happy with themselves for not doing that. I thought of you and Jack so much yesterday and on his birthday.

SG said...

I'm amazed by how insensitive your in-laws are, but also amazed by how wonderful your medical team at SickKids sounds. Of the dozens of specialists who worked with Elizabeth, only one or two ever seemed to love her as a little baby. The rest thought she was an interesting medical case. I'm glad Jack had doctors who loved him, even though they could not save his life.

Continuing to think of you and your husband during these difficult anniversaries.

Darcey said...

I am so sorry you are going through this...my husband and my husband's family are pretty silent on the matter and unless i bring it up nothing is ever said and it makes me very sad. It isn't fair that they are doing this to you, your husband, and sweet Jack...you are in my thoughts and prayers!

Nicole said...

This post made me sick for you. I can't blame you for being beyond angry about the way they're treating you and your family. I say your family because Jack IS a member of your family, and always will be.
I have been thinking of your little Jack since his birthday and hoping that the day was gentle on you. I didn't realize that you were going to have to deal with such stupidity and ignorance from people that should be loving and kind. So sorry. You're in my prayers!

Rhiannon said...

This post brings me to tears. I am so sorry that your ILs are so insensitive. It breaks my heart. Your sweet Jack did exist and be does matter and your have TWO children, a son and a daughter. I can't stand the ignorance of some people. Hugs to you. <3

Carol-Anne (Use the Good Dishes!) said...

I stumbled on your blog in the weirdest way...which I won't even bother to explain...but I ended up reading back over your last year of posts. I'm so so sorry about what you've been through. I live in TO as well. I have never had a child die. I cannot imagine the sadness/anger/pain, that must come with this. But I have learned so much about how to behave around people who have lost a child and how NOT to behave, from reading your blog. I will think about you and your family from this day forward. I will think about Jack and the impact he had on this world in his short little life.

Sara @ Russet Street Reno said...

I suppose everyone deals with grief differently, but they should never demand that you not talk about your baby. He will always be your baby, and should be remembered. Always.

Hope's Mama said...

I'm so sorry I'm so late to this, but I couldn't not comment. Jack is astoundingly beautiful. I'm so very sorry he's not here.
He is loved and remembered. Always.
xo

Burt Fam said...

The fallout just keeps coming, doesn't it? My heart goes out to you again and again, Laura.

I can relate a bit, after two weeks with all our family that did not include even a whisper of our boys unless I brought it up (and then they quickly sidestepped it back to "safer" ground), and it really is like a punch to the gut. Please know that in your writing as you have honestly detailed this whole BLM experience, Jack has left a lasting legacy that truly has brought so much comfort to others in your shoes. I know that is cold comfort, but it is true nonetheless: Jack will NEVER be forgotten.

brianna said...

I'll never understand how people can be so cruel. I'm sorry that you are facing (faced) this anniversary without all the support that you deserve from your ILs. I'm a little late but I just wanted to say how very sad I am with you that Jack is gone.

Emily said...

I can tell you that nurses (and probably doctors too) do remember. When Kaia was having surgery last week I went to that same NICU where Jack stayed and where I use to work to use the pumping rooms. In the last one in the hallway there is a picture up of a drawing of a little boy's feet. It was donated by a family whose son died 5 years ago...and as I saw it I remembered EXACTLY who that little boy was. I remembered how much his parents loved him, and how much they undoubtedly still miss him.

Jack was real. Jack mattered. I remember.

Don't let anyone ever let you think differently.

lilsophie said...

Thank you for sharing so honestly. Thinking of you and precious Jack. Hugs!

Melissa said...

Wow. It is so tough to deal with family situations like this when you are already dealing with so much around these dates. hugs!

Rebecca P. said...

I am so angry for you. Nobody should have to go through this, and certainly not with family who act so obnoxiously. I completely understand your desire to tell them that if your son didn't matter to them, your daughter shouldn't either (honestly, the same thought popped into my head earlier on while reading this).

I hope you know that all of your followers know that Jack was important and will ALWAYS be an important part of your family who is deeply missed. I was thinking about you, your husband, and your little hero yesterday. He won't be forgotten.

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