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.
13 hours ago