Accepting Help With Grace

I am fiercely independent. As much as it feels good to help others, I hate to be on the receiving end. It is most definitely a fault of mine that I'm a perfectionist, that I like to do things my way and to my specifications. I've long struggled with delegating. I enjoy the feeling of a job well done and of accomplishing things I hardly thought possible. I am terrifically competitive, with myself, and hardly a day goes by when I really have tackled all the things on the ridiculously long to-do list that I create each day. I have learned to manage these idiosyncrasies...I think. But, what has not gotten easier is asking for help--or even worse needing help. I really am just like my toddler who says "Self!" and pushes my hand away; I want to do it myself.

Here's the thing: You cannot possibly do it all by yourself when you have a baby in the NICU. You can't. You need to simultaneously talk to the doctor about that formula issue and find out the baby's stats for the day from the nurse and hold said baby and take your other child to school and call the insurance company about the ever-increasing bill you aren't so sure they're covering and go to the grocery store and cook food to feed your family and check work emails which has become a career in itself since you've been away and recover from major surgery and pump breast milk like there's no tomorrow.

There aren't enough hours in the day. And if you're exhausted and stressed, you're not able to be as competent in the NICU as you need to be. The terrifying part of the NICU journey for me was never knowing what was around the next bend, so if you show up too tired to function, how will you make some of the hard decisions asked of you?

We were so lucky that even though we have no family in town, my mother and my mother-in-law basically took turns living with us. With M, it was absolutely crucial because we also had a little boy at home who needed attention. There was no way for both my husband and me to be at the NICU together unless we had help at home. Not to mention all the household chores I physically could not do. Our mothers ran our home, from caring for my son to overseeing his therapy and schooling to cooking and cleaning for us. They did everything I could not do, and there really aren't enough thank-yous to ever repay them. EVER!

During our first NICU stay, I struggled to release my control on silly things like how the pantry was organized. During the second time, I was at first too sick and then too tired to care. I finally accepted that whatever help they offered was a blessing of their time and energy; it was a sacrifice for them. Who was I to demand how they organized my pantry? That's like asking for help and then specifying how and when you receive the help. I'm embarrassed that I was ever so thoughtless! And I hope they didn't notice.

To be fair to myself, I was learning how to accept help in a way I'd never needed it before, and I was suffering from the shock of having J at 26 weeks. And I was a new mommy, with all sorts of normal fears and emotions that compounded the stress of the NICU. But, with M, I was different. I was overwhelmed by the kindness and support our mothers offered--for a second time in three years. I was so amazed at the time they gave us--months and months of it. And I was relieved, that I could put some of the day-to-day burdens aside and focus my attention on M and the NICU.

My in-laws currently live with my ailing grandmother-in-law, and I find myself empathizing with both the caretakers and the caretakee. It is challenging all the way around, but what I keep coming back to is this one nugget of wisdom I gleaned from the NICU: Accept help with grace. Help is a gift, and it is a gift that you can pass on to others when it is your turn.

Besides, you never know when you might need help again. Like when you have another unexpected preemie.

Like a Monkey

I am so tired, and it has been a long day. The kids have been tag-teaming all day so that one naps while the other one is awake. So, just a quick thought for today. I was playing with J this afternoon, when he walked up me by holding my hands and scrambling up me with his feet. I could not believe that A) he is strong enough to do this after all the months we worked on rolling over, crawling, sitting up, and walking and that B) he is fearless enough, after being too cautious to try anything remotely dangerous. It was a simple moment, but for me it was thrilling to see him hanging from my arms like a monkey. Just an average little boy doing what little boys do.

Being Compassionate

One of the best life lessons that the last three years have taught me is how to be compassionate. When someone is sick or housebound, when someone has lost a family member, or when someone is just in a dark place in life, what do you say? What can you do? Before the NICU, I thought about people, I really did. Sometimes I stewed over situations that really had nothing to do with me. I felt sorrow for people, and I offered up prayers and sent positive thoughts their direction. But, so many times since I didn't know how to fix their problem or even what to say to make it better, I just didn't say anything at all.

When my son was in the NICU, sometimes the silence was deafening. Of course I knew people cared, but on the dark days, I looked around and wondered who was standing with me, who was supporting me, who wanted to help. And truthfully, most of us are too busy, too wrapped up in ourselves to take the time to be compassionate.

I promise I'm not trying to keep score, but I remember every person during the 150 days my babies were in the hospital who called me or sent a card or sent me a message on Facebook. Dear friends in South Korea called from literally halfway around the world. The last communication I had from a childhood friend who committed suicide was a message on Facebook. He saw that I was online one night, and he asked how my baby was. I gave him the pat answer, a few stats on his weight gain and oxygen levels, and I thought that would be the end of it. He had the compassion to ask more questions, and then to tell me he was thinking of me and praying for me. Now, looking back I suspect his own pain made him sensitive to the pain in others.

The beauty of being compassionate is that you don't have to speak words of wisdom or fix a situation. Sometimes just being a lifeline, a warm hand on a shoulder, a sweet card in the mail, a friendly voice on the other end of the line, that is all you need to do. We just don't want to be alone. We don't want to wallow in self-pity and doubt. We want someone to recognize our pain and validate it.

Now, I look back, and I see so many missed opportunities. So many things I left unsaid and undone. And I am sorry for it. But, I have resolved to try to be more compassionate, which is not to say perfect. In the hustle of daily life with two small children, I still leave so much unsaid and undone, but instead of letting myself off the hook with an at-least-I-sent-them-positive-thoughts (as if people are automatically notified of these thoughts like I've texted them), I buy cards and send them, or I pick up the phone and use it, or I type out an email or a Facebook message and hit enter. Or with my ailing grandfather, I picked up his hand, looked deep into his eyes, and said, "I am so sorry, and I wish I could do more."

You never know the joy your card or your hug or your flowers bring until you're in a place of despair and sorrow. And I thank the NICU for that life lesson.

We Have Each Other

Ever since our first baby was in the NICU, my husband and I have a way of dealing with bad days. We'll vent about whatever the problem is, and then one of us will always say, "Well, at least we don't have a baby in the NICU." Then, the other one will smile, and we have some comfort in knowing that at least we're home together as a family. We have each other.

Inadequate

Last night, I snuggled next to J at bedtime. I felt his bony, little shoulder on my cheek. I watched him chatter and giggle, and then I closed my eyes and thought about those first two days after he was born. When we were separated. I saw him through a glass box, and then they wheeled him away to a hospital 30 minutes from mine. My husband visited him. My mother, my father, and my sister visited him. My mother-in-law and my father-in-law visited him. But, his mother did not. When I think back to that time, it feels like a Twilight Zone. They put me to sleep, they took my baby, and then I sat in a hospital room for two days waiting to see him again. It was surreal. Was I even pregnant? Did I really have a baby? Was he really alive? Was I a mother? I certainly didn't feel like it.

On Day 3 of my son's life, I was released from the hospital. I remember my husband wheeling me into the NICU for the first time. The sounds were foreign. The smells were foreign. Overwhelmingly foreign. My husband had to show me how to scrub properly. He took me to J's isolette, and he introduced me to his nurse. I felt out-of-place, truly like a visitor. And then I looked at that tiny baby in the big pexi-glass box under the bili lights.

Inadequate. I was wholly inadequate. I felt powerless, helpless, and clueless. Oh, and swollen and terribly sore too.

"Mama, WAKE! UP!" And here we are, J's smiling face in my own. I am the one who knows him best. I am a hero to him, all-powerful and full of answers. If only I could go back and tell the woman I was then that she wouldn't always be inadequate. If only I could tell her to be patient with herself and give it time.

We were all thrown into not just the deep end but a whirlpool. We were sucked under and spit out. We all struggled, my husband, my son, and me. But, then we all popped up to the surface, we found our places, and now we're a family. 

And I might be many, many things, but inadequate is no longer one of them.

Three

J turns three next week. THREE! For us, this is a huge milestone. It is the goal we have all worked toward. Three, when J would catch up to his peers.

When he was released from the NICU, a social worker referred J to a caseworker with the state, and she has guided us through home intervention with a teacher, physical therapy one and then two times a week, speech therapy, and placement at a school for toddlers with developmental delays. We were always talking about the boy he'd be when he was three. Three, when he could walk and talk and would no longer need therapy.

The pattern of our weeks followed the pattern of his therapy. Naps and playdates and errands all revolved around therapy. The people I talk to are therapists. There have been times in J's life when I'm convinced that J's therapists knew him better than almost anyone else because they have seen him week in and week out. They follow his progress. They set new goals and check off old ones. They push him and encourage him and rejoice at the boy he's become.

And here we are. Three.

This team of people have loved my child. Deeply and patiently. They gave me a social outlet when I had few friends in a new town and was housebound with a child who couldn't go into public. We chat about J; they want to know everything new he is doing. They hear out my fears. They have given me priceless advice about parenting and preemies and childhood development.

This team of people know where I live. They come to my home. They talk to me by phone and text. They know my parents and my in-laws. They know where we go on vacation and what food we're cooking for dinner. They got regular updates while M was in the NICU, and they provided a bit of normalcy during a period of upheaval for J. It is a wonderful and also intimate thing they do, coming into people's houses and helping raise their children.

Our speech therapist has suggested we do a playdate with her 3-year-old daughter once we're no longer clients. And our physical therapist will begin working with M in J's timeslot the week after he turns three. M currently has one of the home teachers J had, and once she's old enough for preschool, she'll probably qualify for that too, following in his tiny, preemie footsteps. So, this whole community of people who have given J such invaluable resources over the last three years will continue to be our home for the foreseeable future. I can't say I'm sorry about that because these people who love my child have also become my friends.

I hope other Preemie Parents have the same experience. I think about the children affected when I hear about budget cuts to early childhood education. Our state could have cut these resources, and our quality of life would have suffered with a baby who was 9 months behind in physical development. We have been phenomenally impacted by J's team over the last three years.

Three. J will be three, and I cannot even believe it.

How Preemie Moms Are Chosen

The kids and I have been staying with my parents for the last week, so I haven't had time to write. But, a friend tagged me in a post on Facebook about how God chooses preemie moms, and I think it's such a sweet way to think of having preemies. I definitely feel chosen.

How Preemie Moms Are Chosen
(Adapted from Erma Bombeck)
Did you ever wonder how the mothers of premature babies are chosen? Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger. "Beth Armstrong, son. Patron Saint, Matthew. Marjorie Forrest, daughter. Patron Saint, Celia. Carrie Rutledge, twins. Patron Saint ... give her Gerard. He's used to profanity." Finally, he passes a name to an angel and smiles. "Give her a preemie."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a premature baby a mother who knows no laughter? That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of its own. She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect. She has just the right amount of selfishness."
The angel gasps, "Selfishness?! Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'mama' for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see – ignorance, cruelty, prejudice – and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles.
"A mirror will suffice."