Today was a hard day. Mommy didn’t get out of bed until 2:30. Even that was a struggle. I did it just to check the mail. My mailbox always has cards in it – cards that talk about you. It’s one of the few bright spots in these long, nightmarish days.
I can’t remember if I brushed my teeth today. I don’t think that I did.
My heart is empty. It’s a hollow room where the sound of your cooing echoes.
I watched videos of you today for long stretches of time. I watched them, and I cannot believe that you are gone. You are really and truly no longer here.
We haven’t moved your bed out of the living room. I haven’t directly thought about this, but when I try to – when I think that we need the space for the girls, or how the bed partially blocks one of the kitchen doors – my mind shies away from it. Moving your bed out of our living room acknowledges that you are gone, and you aren’t coming back.
Nighttime is so hard. I should be taking care of you. Giving your medications, holding you, talking to you, taking videos. Instead, I sit on the couch – my heart aching desperately just to hold you for one more minute. I walked out to visit your grave tonight. Daddy went with me, but he didn’t say much. He’s having a really bad day too.
Daddy’s colleagues sent us a beautiful wind chime. It is engraved with your name. I can hear it now on the front porch on this windy night, and I pretend that you’re talking to me. You’re telling me that you’re ok. You’re not in pain.
I hope that we didn’t fail you. Every day, there are questions. Every day, I struggle for answers. I have none. I find myself clenching my jaw constantly. It aches sometimes. I don’t even realize that I’m doing it.
James, I was ready. I was so ready to be a special needs mom for as long as you needed me. I remember the first 3 days home from the NICU. I was panicked, terrified, pacing the floor, hyperventilating. How could we possibly care for you? How could you possibly fit into our lives? How could we have any sort of life? What would constant doctor’s appointments and hospital trips be like? How could we keep our family together, cohesive, with one parent always in one place and the other elsewhere?
And then, something happened. I still don’t know what the shift was to this day, but it was a monumental one. I knew that I could do it. I knew that I could be the mother that you needed, for as long as you needed me. I was ready. It was time to stop fretting and take care of you.
And then, 5 months went by like a sigh. We had our routine. We had figured out the tricks to making you more mobile, to making us more mobile, to being the best at special needs parenting. I was ready for years of caring for you, whatever that entailed. We had our routines. Mommy slept next to you all night, took care of your nighttime needs. I woke with you in the morning. We did our CPT, our nebulization, medications, diapers, snuggles. Lots and lots of snuggles.
And then you left. Just like that, our jubilance and exaltation in your successful surgery were extinguished. You died, and you took our hearts with you into the cold January ground.
I wasn’t ready. I had so much more to give you. I will never be ready. My grief will burn within my heart for the rest of my life. There is no loss like losing you. There is no salve to heal this wound.
James, I am going to try. I am going to try to reach out and help others. Every day, I am going to do something, no matter how small. Today and yesterday, I mailed out most of your medical supplies to other trisomy families. It was so, so hard. Going through boxes of oxygen tubing, suction catheters, cannulas – holding these things, remembering you. I cried over a box of Tegaderm. I remember every time that we had to peel it off your face, replace it with fresh tape, how Daddy and I both hated and loved to hear your lusty baby cry.
But other babies live in states with terrible supplemental disability insurance. Some babies aren’t lucky enough to have doctors that value their lives. We helped with that today, here and there, small things really, but huge things to these families with limited supplies. I hope that I made you proud, doing these things through the fog of grief that cloaks our household.
Grief is terrible. There is no escaping it. There is no going around it or over it. The only way is straight through the middle. I’m scared. I’m scared that I will never feel joy again. I’m scared that I will only see life in shades of gray now – no more vibrant colors. I know you wouldn’t want me to feel that way. I know that you were happy and so, so loved, and sometimes I believe that we did all that we could.
It will somehow have to be enough to get me through the days until I start to “feel better.”
Mommy loves you, Jamesy. I love you so very, very much. My heart calls to yours across the void, yet there is no answer.