Just before midnight tonight I was talking to my mom on the phone, who is still out East with my sister, and has been since the day after Aiden was born. We were just talking and sharing the latest details when she mentioned how when they returned home from the hospital last night there were some emotional moments as my sister sat listening to lullabies and talking about which ones she's been wanting to play for Aiden, her heart aching to have to spend the nights so far away from him. She'd already told me about this earlier.
"Mom," I said. "That wasn't last night, that was 2 nights ago."
"No honey, that was last night," she said. I was flabbergasted. Was it really? Hadn't she told me about that a long time ago.
"It's been a long day hasn't it?" She said. Well duh. I didn't go to sleep again last night. Seriously, my head hit the pillow and 30 seconds later my husband's alarm went off. I'm starting to wonder if there is a trigger for that thing under my pillow! But this is a story for another blog.
Yes. It has. It's been a long 10 days. That's how many days Aiden has been in this world tied up to wires and tubes and laying in a bassinet in the hospital. It seems like Aiden has been a part of our lives forever. That has got to sound crazy coming from me since I haven't even met the little guy yet, haven't even felt the warmth of his baby skin or the soft fuzzy hair on his head. If it's like that for me, I can't even imagine what an eternity it's felt like for my sister and brother-in-law... and their teen twins and my mom.
The day Aiden was born, my mom didn't sleep at all before flying out there. I know this because I sat up with her on my couch all night long. When she arrived into Boston, she got a cab and went straight to Brigham and Women's where my sister was. And there she stayed, suitcase and all, for the first 3 days (I think -maybe it was 2... like I said, it's hard to tell when one day stops and another starts). She walked the halls most of the first night there. I think she found a random chair and dozed in it for a bit. Another night, she tried to sleep in a chair in my sister's room. A nurse gently reminded her during the middle of the night that only one additional person was allowed to stay overnight in a patient's room. Of course, my brother-in-law was there too. She graduated to sleeping at my sister's house... on the couch, in a chair, on an airbed.
I think they are all so tired they just crash when they get home. My sister is finding it difficult and painful to go up and down stairs which makes simple daily getting ready tasks a challenge.
On top of all this, I think about the twins. They typically spend one night a week with my sister and brother-in-law and every other weekend. Aiden was born on a weekend they were with them. Their routine is all out of sorts too I'm guessing. I do know my brother-in-law did get a chance to take them to breakfast at Friendly's earlier this week. (I hope he let them order Peanut Butter Cup Sundaes!).
And I'm glad to hear he is planning to spend Thursday with them. I think they might go to Canobie Lake. I'm sure they are missing their dad and feeling the ups and downs of the whole situation in their own way.
I know that my own family has spent a great deal of time communicating with me via customized sign language or handwritten notes as I've spent a lot of time on the phone the last 10 days. I'm fairly certain I've made a meal or two this week but that might even be pushing it. I really can't say enough about my husband. His is a quiet kind of support but it gets the job done. He always gets the job done. There is a real comfort in that; knowing he is there and possesses the strength to keep us all moving forward, especially during times like this. It makes me wonder how people with strained relationships or weaker support systems manage to cope during stressful times in their lives.
There really is so much to think about and all the waiting is like an open invitation to enter the world of, "I Wonder." Because really, when you are completely focused on one thing, such as the health of this baby and getting him home, there is a lot of patience required as you sit in a holding pattern for hours, sometimes days, waiting to see what the next moment will bring. Progress? Setback? Status Quo? You can only keep thinking about the current moment so long. Sometimes it's helpful to let your mind drift a little, even if it's only to weave in and out of all the issues at the periphery of the actual situation you are in; which is your baby is in the hospital.
The thing about the NICU is it's a club. Not exactly a club anyone dreams of joining, but its members share something in common that is only ever completely understood by others that have or are living it too. I've been blessed with four children, all relatively typical pregnancies and births. It's as if my sister made up for all the aches and pains I was spared... and then some. Even with my own experience as a mother, I know enough to know I can't possibly understand exactly what it does to a parent to go through this. I can hear about it, explain it, try to describe it in an attempt to share the emotions with others, but really, we're all just looking in through the window. We can see a lot but we can't make out what's in the shadows of the room or around the corner or behind the curtain. But those other parents can, because they are right in there with them. Literally and figuratively.
The NICU has a bay where the same small group of babies share a common visiting space. In the first days, all you are focused on is your own plight; your own baby. But as the hours turn into days (and for some the days turn into weeks or more) you lift your eyes and suddenly see yourself staring into another pair of eyes filled with the same mix of hope, fear, desperation and helplessness. You are staring into a mirror, but it's not your reflection. It's the mother or father of another baby who is struggling. And you begin to communicate with those eyes that speak the words in your heart that your body is simply too exhausted to voice aloud.
Going in and out of the visiting bay, silent greetings are shared with eye contact, head nods, fleeting tentative smiles. As the whole surreal experience becomes a routine you settle into, you realize you have formed powerful bonds with people you've barely spoken too. But then the conversations begin. Of course, with my mother there at least, conversations would eventually begin. She once made friends with a person who dialed her as a wrong number. True story!
They now count the other parents in their NICU club among their friends. It's funny how a similarly shared experience and simple physical presence (with or without the exchange of words) can bond people together and grow a sense of compassion for each other. They have become cheerleaders for each other and added all the babies and their families to their prayers.
Being in the NICU surrounded by other babies struggling with various health issues is a constant reminder of the gravity of the situation. It's a place where you can see grown men crumple under the weight of the pain and fear. It's a place where beeping alarms and the rushing sounds of nurses stirs a collective panic in the chests of all present. And it's a place where good news for one can inspire smiles and hopes for others.
In my sister and brother-in-law's case, they realize the blessing that while what they are experiencing is painful and emotional, their son's condition is not life-threatening. Unfortunately, that is not always the case for all parents in the NICU. I'm sure that has played a role in keeping their faith and strength going.
That first night Aiden was transferred to Children's she kept asking, "Why me? Why my baby?"
I'm sure there are many parents who are asking those questions and wondering, "What is the purpose of all this pain and suffering?" If I could share my thoughts with parents whose babies do not have the odds in their favor, I would struggle coming up with a way to make it all better for them. I mean how do you? What can you say?
I feel compelled to DO something. But what? What can I possibly do? That is partly why I am puutting together this blog for my sister; to help keep a record of the details and emotions of this time. Even though they are living through it, each day's utter exhaustion is surely wiping away bits and pieces of the prior day's challenges.
I think about how lucky I have been and how easy it can be for me - as well as so many other parents - to take our children's health for granted. Looking in on this window of life in a NICU has reminded me to acknowledge the blessings in my life; to celebrate them. And for goodness sakes, always give just one more hug and kiss to my kids. And you bet I do.
Lately, if I find one of my kids buried in my blankets pretending to sleep so I won't move them to their room, I just smile and snuggle down beside them knowing how lucky I am that I can lie down cheek to cheek with my baby tonight. And when I my kids rush past me, I reach out and hug them just a little more often; and I hold them for a few seconds longer as I whisper a prayer for peace, comfort and courage to those mommies and daddies that might only have a few seconds longer.
If there is any good at all that can come from all the tears of loss shed in a NICU, maybe it can be the sense of honor knowing that one child's struggles served to bring more love into the lives of others.
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