Sunday, March 18, 2012

Regrets and Fears

This past year has been difficult to say the least.

It is nothing like the year we had hoped and anticipated when we first held our little man in our arms. It still leaves me anxious when I think of those beautiful days we had him at home, with no idea he was sick... No one knew, not even the family doctor who saw him just the day before he was admitted. It bothers me still, to feel like we missed a clue, a hint as to the viruses coursing through his little body.

It also terrifies me, because I feel like my instincts as a momma failed me, failed Scott, and ultimately failed my son. I've always thought motherhood would come naturally to me- and I felt like it had when he arrived... And now... Now I'm terrified that we'll lose Jack's sister Gracie, too. Terrified. How do I trust myself to know when something isn't right next time when I missed it and paid the ultimate price?

I have yet to post on this blog all the details of our stay at SickKids... I've alluded to it before in bits and pieces, and I've written about the kind and compassionate care we received while we were there... It's a wonderful hospital with an outstanding reputation for a reason- when you have the sickest of sick kids, there's no place you'd rather be. But it was too late when they saw him, he was already gone for all intents and purposes.

There are moments in those days which will continue to haunt me for the rest of my life. Conversations we had with specialists, things I know were done to him to confirm brain death... I try not to focus on these things because they are just too much and I fear that if I were to think about it too much, it's possible I would cease to function all together.

Even just the little things, like how I felt like he ceased to be mine, and I surrendered all my dreams and hopes in handing over my baby and begging for them to please fix him. But it was too late.

I'm sure any mother who has had their baby in the intensive Care Unit and gone on the lose them can attest to the same things... I felt like I couldn't hold him until they told me I could do. Like he had to lie there, legs splayed for all to see and touch, when all I wanted was to scoop him up and cuddle him.

Once it was determined there was no more they could do, they started to loosen up "the rules" and he was held as much as possible, despite it meaning arranging for a Respiratory Therapist and two nurses to help lift him into my arms to cradle him. It took three people to lift my seven pound boy and place him in my arms.

It's a lot of the little things which haunt me.  Before he became ill, I had a tendency to hold him chest-to-chest with me, his little head resting on my shoulder and his little heart beating against mine. Of course after he became sick it was no longer physically possible given all the tubes and wires and cords to hold him in this position. I regret that, I felt like I was holding a doll, not my son. It was all very surreal.

The last evening I held him through the night, refusing to take even pee breaks because I knew I would never get this time back. I would never get a do over, and I just knew I would long for these moments all the days of my life. I held him, just he and I, and I sang to him, and I told him I loved him over and over.  I told him and promised him I would never forget his sweet spirit and his kind little soul and that I was so grateful for having met him. That I was so sorry he didn't get to stay. I reminded him I had been waiting my whole life to meet him, and that I would never forgive myself for his death. Logically I *know* he was no longer there at that point, but if it was possible for him to see my love for him, I wanted his last moments to be those of love.

In many ways, I feel like this is an unfinished story. It was too short, it was too sad, and despite several days of laughs and getting peed on, it just will never be enough. But it's also all I have and I can't help but still feel like we have been f'd over by the universe. Because in what world do these horrible things continue to happen to good people, but bad things happen to those who certainly don't deserve it or appreciate it and they will just never know how lucky they are.

---
We are just fifty one days out from when Jack's little sister is scheduled to arrive. The day we have been hoping and dreaming of since our hopes and dreams were last dashed is just around the corner. I'm filled with hope, excitement, crippling fear and anxiety. Scott and I were talking in the car yesterday about a photo montage he wants me to make of he and Grace for his birthday next December. He's specifically requested it be set to Calvin Harris- Feel So Close, a song he has already informed me will be one of he and Grace's "songs" (he has also said this regarding several other songs, they're all for "them". ha). He plans they will dance and he will sing the lyrics to her for their mutual amusement.

"I feel so close to you right now, it's a force field.
I wear my heart upon my sleeve, like a big deal.
Your love boils down on me, surrounds me like a waterfall.
And there's no stopping us right now, I feel so close to you right now".

I'm so happy he's getting happy and excited about her arrival. It warms my heart to know this little bundle shuffling around inside me has people pulling for her. People who can't wait to hold her in their arms... It can be overwhelming at times, which is precisely what happened yesterday when I began to tear-up as was telling me about his plans for the song. Scott couldn't figure out why I was crying, and I just blurted it out- I just need her to get here. I want to fast forward my life until May when I am sitting here with her in my arms (please?). I quite literally have all my eggs in one basket and I feel like I have the weight of the world on my shoulders at times, so much responsibility to bare and there really isn't much input I can have to ensure a positive outcome... So many people banking on her arrival to shine a little light into our lives, but there is just so much fear which comes with that.

I just need her here. Fifty-one days.

18 comments:

My New Normal said...

Oh how I wish there was a fast forward button. Then we could both skip this part of the journey with all it's fear and anxiety.

Thanks so much for sharing a bit more of Jack's story with us. I can see just how much he was loved through your words.

Molly said...

The anxiety is building over here, too. I keep having to stop my brain from going "there." because it tries to about ten times a day. I constantly imagine things going wrong inside of me and feel the need to rescue him. Geez, I hope this is all in my head and he is able to cook for five more weeks and then be born alive. I have to control the fear to keep it from eating me alive until then.

Tiffany said...

I could have written those same exact words. The guilt of not knowing something was catastrophically wrong with your baby until it was so late, handing over your child to strangers because that's the only option you have... Ellie too loved to be chest to chest and I demanded I hold her that way while they set up the intubation equipment, Dave never got the chance to hold her like that again though. And when it came to hold her to say good bye, it's like I wasn't even holding my daughter...
And the anticipated overall of all these babies- if we all get through the couple months of our pregnancies without hurting anyone or losing our minds- I think it will be a miracle! All of our little babies have no idea how very much they are wanted and loved.

B. Wilson said...

Oh. The tears came with this one, my friend. I have more vivid pictures of the reality you replay in your mind daily. I am so sorry that this is your reality and those haunting memories are here to stay.

It is precious that Scott has such plans for his little girl and it is obvious that although you feel betrayed by your instincts that he feels confident in them still.

The wait is absolutely maddening and terrible. I would have given up those last 50 days (and I did some) to just get to holding my son... And I want that same thing minus a NICU stay for you. Cannot wait til her arrival.

Caroline said...

I'm so anxiously excited for your future. So sorry for what you've been through - no one should ever have to go through that. I'm glad Grace is already providing a light in your lives and hope that it continues for years and years to come

LookItsJessica said...

Laura-- you're so brave for posting about your last moments with Jack. You're a wonderful mom and I just have to believe that there is the tiniest bit of justice in the universe and Jack felt nothing but absolute love and adoration during his last hours, being held by you.

Addi's mom said...

I hate to wish away this time of being pregnant and yet it's all I do. Wishing for the day to come when he is in my arms and we have him for keeps (please)! I wish I knew how to down play the fear and anxiety, but I think for us that just isn't possible...we know WAY too much.

It's so sweet how Scott is preparing for Gracie. He is a great dad to BOTH of your kiddos.

Thanks for sharing a little more of Jack's story. xxxooo

Kelly said...

So many hugs. I also have a lot of guilt. We made a parenting decision, assuming Adam was ok when he and Jim fell. I think it damaged his brain and that is what led to his death, even though him choking is what got him hospitalized. I'll never know if that is true, but I feel guilt over not taking it more seriously, not getting him seen. I feel like all of my instincts and "experience" as a 2nd time mom mean nothing now. I hate it.

Thank you for sharing Jack's story. Waiting for these babies is SOOOOO hard. My mind often goes to dark places, and I too think, I NEED this baby here. Anyways, I'm rambling. :) Thinking of you and sending love!

Shell said...

Laura,
Thanks for sharing a little more of your story with your precious Jack. I can't imagine how you got through those last few days and so wish it could all have been different. I understand your anxiety and how you just want to fast forward to May. Will be thinking of you in coming weeks and hang in there. Gracie will be here soon and you need to think positive thoughts only. Hugs to you.

Melissa said...

I remember feeling the same way, "I don't trust myself to realize that something is wrong." Except mine was during pregnancy that I didn't trust myself. Once she was here I assumed that everything was a sign of something wrong. I guess I was on protection overdrive.

Anyway, I hope these last few weeks go quickly for you. (((hugs)))

Melissa said...

Sending love your way friend!! I am reading a book right now, Calm My Anxious Heart", by Linda Dillow and it is really helping me!! I hope the weeks go by quickly as well!!

Christy said...

I know so much of how you feel. My rainbow baby just turned one about 5 weeks ago and I am saddened by the fact that I barely remember the first 3 months of his life. I have plenty of pics of it, thank heavens, but I was so stressed out that I almost blocked it out. Even the first 6 months, I'd say, I felt like I was always "waiting for the other shoe to drop," as I've read on so many other BLM blogs.

Just know you are not alone. Your sweet baby Grace will be in your arms soon. I understand your wish for a fast forward button, but my wish for you is that you find a little bit of peace in every day, every moment, every kick from her. Jack is right with you every step of the way, I pray that you feel him there with you. Sending you hugs, mama. You are and will be a fantastic mama -- no doubt.
xo

Hope's Mama said...

The end is so incredibly hard. You are doing such a great job. We're here for you.
xo

Tiffany said...

i can relate so much. i know we lost our boys differently. but i do find myself terrified of everything. i feel like i'm holding my breath daily. and those last couple of months of pg were so rough. i desperately just wanted her here and in my arms. it's hard b/c you already feel tired and run-down, and it just seemed like the grief and emotions ran high at those times. i pray that these next 50+ days pass quickly and that you get to hold Ms. Gracie in your arms. can't wait to see pics of her. she's going to be gorgeous. btw, i love that song.

Brooke said...

Tears for you and similar fears echoed here. I've traded certainty and confidence for a hope that feels so fragile I can't forget for a second how quickly everything could slip away from me. I hate imagining the trauma you experienced when Jack got sick, and I know what it feels like to be haunted by what-ifs and would-haves. Sending much love and waiting anxiously for Gracie right along with you.

Darcey said...

So many tears as I read this post. It brought me back to a few weeks ago right after Layton's spinal tap when all I wanted to do was hold him and they specifically told me to just let him be for a few hours...pisses me off now that I think about it. We were lucky that the antibiotics worked, but I can't help to think what if they wouldn't have..what they would have denied me of...

You are almost there. I know time seems to drag, but before you know it you will have Jack's little sister in your arms. I have no doubt he will guide her to you safely. I truly believe our rainbows will always be special because they have their own personal guardian angels...i like to believe that is why Layton pulled through. My nurse pretty much called it a miracle at one point and I was thanking Logan over and over again.

Just through your posts you can see how loved Jack was and I hate to see you question your motherly insticts...you did all you could. Gracie, like Jack, is so lucky to have you and I hope once you get past the first few weeks you will believe in yourself once again!

Becky said...

This post brought me to tears. I can't imagine what the days at SickKids must have been like for you guys.

I hope also that these next weeks can fly by for the both of us. I am assuming that 51 days is a scheduled c-section then?

fireworksandrainbows said...

I read this a couple of days ago, and I really needed a few days to let it roll around in my brain.

Thank you for sharing some of the more intimate moments of Jack's life, these memories are some times the most difficult to get out, to share. The minutiae of every.single.last.detail.

I understand the moments we had, even the painful ones are all that we will ever have...it's a terrible truth my friend love and hugs to you <3

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