A New Early Intervention Adventure

M has taken a few steps. If we encourage her, she’ll take two or three before she gleefully collapses on the floor and crawls away at lightning speed.

I wrote about her first steps in “Waiting to Walk” and more recently in “The Timing That Is Not Our Own,” but the truth is that we’ve seen no progress on any of her physical goals since she stopped getting physical therapy a month ago.

I’ve heard from a number of people specializing in developmental delays that a toddler’s brain, especially a preemie’s brain that is working overtime to catch up, will often focus on either walking or talking, either on physical goals or language goals. And I have seen that scenario play out in both of my children. The most recent example is with M, who is now picking up at least one or two new words each day, but she’s not walking, though she’s nearly 19 months old.

We had M assessed by the state this week to determine her eligibility for early intervention services, and, as I expected, she has significant delays in her gross and fine motor skills, while she’s completely on par with her peers in language development. Until age 2, our state corrects for prematurity, so M is being evaluated based on when she should have been born and not her actual age. Before we moved, we lived in a state that was more aggressive in the first years and did not adjust for prematurity. There she would still be evaluated as an almost 19-month-old, instead of a barely 16-month-old.

The advantage in M still not walking is that she qualified this week for therapy, and once a child has services and is in the early intervention system, it’s so much easier to increase or alter services. I am so relieved to know that M is now in the system, so she’ll be followed more carefully until she’s 3. Had she not qualified now based on the referral generated by our out-of-state move, we might have had to wait until her delays were even more significant before she received any services.

I am such an advocate for early intervention, because I have seen the difference it has made in my children. I don’t believe in waiting to see what happens. Children’s brains, particularly in their earliest years, are fantastically malleable and incredibly resilient, so the philosophy behind early intervention is to help children bounce back from all the setbacks of being a preemie during the window when a child’s brain is the most forgiving.

So, I’m thrilled that M will receive early intervention, but I’m also surprised that she qualified for occupational therapy instead of physical therapy. Occupational therapy is generally more focused on skills necessary to everyday life.  Our former pt texted me, “What did she not do?” and I texted back, “Walk?” with a smiley face. I think the belief behind the recommendation of occupational therapy over physical therapy was that if we push M too hard physically just when her language skills are blossoming, her talking may suffer as well. And the therapists assessing her all agreed that she is so very close to walking.

But, as her mother, it was my job to say, “Yes, but she’s nearly 19 months old, and she’s not walking. I see that as her biggest issue right now.” And it’s my prerogative to be concerned that maybe we really should be pushing her physically, because she is capable and she is falling so far behind. However, I will reserve my judgment until we meet our occupational therapist and set M’s new goals. Occupational therapy will be a new experience for me, and as long as we can give M the confidence she needs to begin taking steps on her own, I’ll be grateful for the help, regardless of which kind of therapist provides it.

4 Years

Preemie Birthday Blues

I’ve written about how preemie birthdays are tricky here and here and here and here! And that’s probably not even the extent of it.

I used to think after the big First Birthday, preemie birthdays would get better. And they have. But, the Dark Days are still like skeletons in the closet or ghosts lurking in the room: I don’t want to acknowledge them, but they’re present no matter what I say or do. I can’t change what happened, and I can’t change that it haunts me, even though the passage of time gives me so many good memories to outweigh the bad.

On a preemie Facebook page, I once saw a mother ask if anyone else had felt sad leading up to a preemie’s birthday, and it was like someone unleashed a dam. A torrent of women rushed forward with their experiences, saying they thought no one else understood. They felt guilty for their feelings, as if they could force their way toward happiness for a day that should, in theory, be a joyous one.

And then there were the naysayers, those women who must take some satisfaction out of digging their heel into people already down: “I realize the blessing my child is, so I choose to celebrate the day.” “I could have lost my baby, so of course I enjoy his birthday!” AND, my favorite, “According to the Bible, you can’t question the will of God and be truly grateful at the same time. I am grateful for my daughter, so I don’t dwell on how she got here.”

I won’t get into a religious debate, but I have a totally different take on it. I don’t think that sadness and gratefulness are mutually exclusive. Besides, we’re discussing feelings here. Someone can’t help how she feels. You can choose what you do with your feelings, but you can’t erase a feeling just because you don’t like it. That’s terrible advice! And acting superior to someone, especially in the Preemie/Special Needs community, because you aren’t troubled by something that troubles others is problematic anyway. I kind of think it makes you a self-important, unsympathetic, a-hole, truth be known.

I’ve also noticed a difference between preemies born before 32 weeks and after. Here’s where I get on my soap box about how all preemies aren’t created equally. Some preemies skate out of the NICU in a few hours or days or weeks. Those parents are probably–but not always–less traumatized than say the families with babies hospitalized for months. So, I always want to congratulate those moms who say “I had a 34-weeker, and I’m fine with her birthday.” Good for you, but I’m not at all okay with either of my babies’ birth stories, thank-you-very-much.

So, now that I’m approaching my 4th birthday post-NICU with my first 2.5-lb baby, I can say this: It does get a little easier, but I’m still counting down the days. I’m still thinking about the girl I was four years ago. I’m thinking of that day and how it all went down. I’m remembering things said and things unsaid, things done and undone. It’s all there, just as fresh as yesterday.

The biggest difference between J’s first birthday and now? I don’t feel the need to apologize for my feelings. Birthdays are hard for me, for all the reasons I’ve said, and maybe they’ll always be hard for me. As the kids grow, I’ll celebrate with the best of them. We’ll have parties and we’ll laugh and we’ll eat cake. But, I’ll never forget where I was on that day and what happened. After all, I am my children’s mother. Even if no one else feels the pain of their early months, surely I do, and I’m entitled to it.

I accept the Preemie Birthday Blues for what it is: the anniversary of the beginning of a very difficult time, which also happened to coincide with the miracle of my baby’s birth.

Not-Jane

Having preemies affords some unique life experiences.

Like being friends with quadruplets.

I met my friend Not-Jane* in our Parents’ Reaching Out meetings at the NICU. After J’s birth, I was in desperate need of a support group. I was lost in the unknown, and the group of women I met in those meetings were the first people to validate my feelings. I am still in touch with a few of them.

I saw Not-Jane at the first meeting I attended. She was slim, and I had absolutely no clue she had multiples until she introduced herself. It turned out that J was only two days older than her four babies and that he was about a week more premature. I liked Not-Jane almost from the beginning, and I was curious about her experience of having four babies. After six weeks of passing each other in the NICU corridors, we became friends.

Not-Jane was a bright spot during long days, and I looked forward to daily check-ins with her. I remember huddling next to J’s bassinet, lost in frustrating thoughts, and seeing her walk through the doorway. We shared information and a little NICU gossip, and some of my clouds began to lift. Her friendship provided a sense of normalcy in a situation so outside the norm.

After J was discharged, I visited her at the Ronald McDonald house until the last of her babies was transferred to the NICU in her hometown. Then, I drove an hour and a half from my house to hers about once a month. It was RSV season, so we didn’t take our babies into public, for anything. Visiting her was respite from a very lonely winter.

I’ll never forget watching her juggle those babies. She lined up Boppies and marked bottles and organized a system to meet her babies’ needs. J was a very difficult baby during his first year, but seeing her conquer chaos was a reminder to me that my problems were temporary and could be overcome.

We celebrated surviving that winter with our first March of Dimes walk in April. We did it with other families we’d known in the NICU, and I was the only mother there who didn’t have multiples. With us were a set of twins, triplets, and quads. I was amused at all the double-takes and questions, because I could watch from the sidelines. No one noticed my singleton.

Every public outing for Not-Jane came at a price. People asked the most intrusive questions, like whether she had used fertility treatments to get pregnant. (When did that become an acceptable question for strangers to ask other strangers?) During our trips to the zoo, streams of people would stop us and ask if her babies were quads, and most of the comments were repetitive: “I don’t know how you do it!” and “I couldn’t have four babies!” and “They’re ALL yours?” Not-Jane had apparently heard the same things over and over at restaurants and grocery stores and everywhere in between because she appeared unfazed, but one time she leaned toward me and said, “What is my choice? I’m not going to stop going places because I have four babies.” I always admired that attitude, that her kids shouldn’t be punished because they were multiples, and as a result, her kids were excellent in public, even with people staring at them.

My favorite comment was when J was still a baby, and all five of our babies were lined in a row. Someone said, “You have FIVE BABIES!” Not-Jane replied, “Yes, we have quints,” and we laughed. We often met for lunch in the city. One time we streamed into a restaurant with our toddlers, who still looked like babies, and we occupied every high chair the place owned. I looked around the table at all those kids in all those high chairs, and I heard Jane’s voice saying, “We are the lucky ones.” I wanted to proclaim to the rest of the diners in the restaurant our success story, all the statistics these children had beaten.

And then I added M to our preemie brood, and Not-Jane mourned the fact that I’d missed out on another full-term pregnancy. I didn’t have to explain it. I knew she understood. She was one of the first people I told that I didn’t feel like I was done having kids, even though I’m done having babies. I knew she would understand that too.

Over the last year, circumstances have made our get-togethers more rare, and now I have moved five hours away. But, Not-Jane held my babies before most of their families did. She was one of three people I texted that I was being hospitalized with preeclampsia with M. I remember her kids as they were in the NICU, what each one of them looked like, and I can tell you most of the challenges her kids have overcome.

Some people sweep into your life at just the right moment. They laugh with you, worry with you, and cry with you. And no matter where they go in life, you feel a connection. With so many little people to consider, we seldom see each other, and when we are together, our conversations are punctuated with the chatter of six other voices. But, I am always glad to see Not-Jane, and I can hardly remember all my NICU firsts without thinking of her.

*Clearly, Not-Jane is not her real name. I’d like to protect her privacy, since she doesn’t go blogging all over the Internet like me. One of my favorite bloggers Beth Woolsey gives pseudonyms in this form, and it always makes me smile.

The Worst Goodbye

I knew it would be hard. I said it would be hard. But, it wasn’t hard. It was excruciating.

Leaving the kids’ school for the last time was gut-wrenching, and I’m not even exactly sure why.

I know I’m terrible at goodbyes. I hate watching people I love walk out of my life. But, I’ve said goodbye to plenty of people I love. I’ve left places I love. I’ve known I was closing chapters in my life before, but nothing compares to this goodbye.

I was completely unprepared for how it hurt me.

That last day, I watched from the booth on the other side of the one-way mirror for the last time, knowing that I might never again observe my kids in such a way. There is something amazing about witnessing your kids as they are when you aren’t visible, when they are standing on their own two feet without your presence to guide them.

That last day, I collected their art projects and extra changes of clothes.

I teared up as I individually thanked every, single person I saw, because they all are part of my children’s successes.

Their faces were sad too, because J had been at the school for longer than probably any other child. The age limit increased at exactly the time he would have aged out, so instead of getting nearly two years there, he had three.

I could see how much J meant to all of his teachers. That child isn’t the most exuberant one or the funniest or the silliest. But, he is solid and reliable and thoughtful and kind. His loyalty is rewarded by a small circle of people who love him fiercely. And maybe that’s what hurt so much about leaving. I was prepared for saying goodbye to people whom I respect, people who devote their lives to the service of helping children. I knew that leaving a place where we were all so comfortable would sting. But, we were leaving people who knew my children better than most. The purpose of coming home was to change that, to give my kids a chance to grow up around family and dear friends. But, in their early years, the dearest friends my children knew were their therapists and teachers.

Every teacher who said goodbye to J had tears in her eyes. They rubbed his head for the last time and patted his back and sent him off into the world a boy instead of a baby.

One of J’s teachers even walked us out into the parking lot, as if she couldn’t bring herself to say goodbye. She watched us walk away. I was so touched, but I stitched my face into a smile for the kids as I buckled them into their carseats. I managed a cheerful “Say goodbye to your school!” as we drove away.

And then I silently cried all the way home.

I Came Home

I went to see a nurse practitioner yesterday because I probably have a minor hernia because I might have picked up a large box while moving. Thanks to two emergency C-sections and three incisions, my abs aren’t what they once were.

Anyway, I hadn’t seen the nurse practitioner in seven years, since we last lived here. She walked in the door, looking down at her chart, and then her green eyes met mine. I was in the process of babbling that she probably didn’t remember me, and she interrupted me with, “Yes! Yes, I do remember you. And I always wondered what happened to you.” I briefed her on grad school and why I left in the first place, and then she asked, “Do you have babies?!”

Why yes, that’s an interesting topic. So, I told her about having preemies, and then a totally foreign thing happened. She told me her little girl is now a teenager who is babysitting, and just like that I have my nurse practitioner’s cell number and her daughter as a third babysitter. We just went for six months with no babysitter and no backup plan and no date nights, and without even trying, I have a list of people to call in a pinch.

I’ve spent the last four years with kids in school and therapy in a suburb in one direction and babies in a hospital in the city. And I lived in between, in a place where I knew almost no one. When I dashed to the grocery store, I knew I wouldn’t see a friendly face. One time I was surprised to run into my neighbor. I wanted to exclaim, “What are YOU doing here?!” until I realized that sounded ridiculous because the grocery store is five minutes from our neighborhood.

Having kids puts you in all sorts of pickles. You need to take one to the doctor–or even worse, the ER–but you don’t want to take your other child. You need to be in two places at once. You lock yourself out of the house, and you’re stuck outside with kids and no one to call. We’re just not meant to do it all alone, and for the last four years, I’ve had wonderful support for the kids but not really for me.

I feel such relief not to go it alone any more.

As I was leaving the nurse practitioner’s office, she gave me a big hug and said, “I’m so glad you’re back.”

That’s why I came home.

Journaling in the NICU

I’ve been inundated with the exhaustion that only moving out of state with two little kids can provide, so I haven’t been writing. But, my most recent piece “The Power Journaling in the NICU Can Give You” appeared today on Preemie Babies 101. It’s about my experiences journaling in the NICU. Thanks!

The Timing That Is Not Our Own

Closing on our first house

My husband and I are living in our fourth city as a couple, and as we prepare to move again, I can’t help but see a pattern to all the moves. With each transition, we changed a bit. We met new people, and we changed jobs. Our accomplishments and failures varied. Each place asked different things of us.

I see very clearly why we were here in this place, directly between a city with excellent NICUs to our north and a college town with an amazing preschool to our south. When we first came to look at homes before we moved here, I was newly pregnant, and our realtor had to remind us to view each home as parents. Did the house have a yard? Could you cook in the kitchen and see children playing in the living room? We had wanted a cottage near downtown, but instead we chose a comfortable home in the suburbs because it was close to my husband’s new workplace. We didn’t concern ourselves with the ratings of area hospitals or preschools, because we had no idea what lay ahead of us.

Almost from the moment we arrived with the moving truck, I was unhappy. Nothing about this place felt like home. In the six weeks before J was born, I wondered what we had done. And I knew my feelings weren’t the moving jitters that settle down after all the boxes are unpacked. I had moved enough times to sense immediately that this place would never be Home for me.

But, when we have kids, it’s not really about us, is it? With four years of perspective, I see vividly that this place was never about my husband or me. It was about what our children would need.

And, oh, how their needs have been met. Obstetricians who performed skillful emergency surgeries. An amazing NICU filled with dedicated professionals who cared for our children in all the ways we couldn’t. A pediatrician who has rejoiced with us. A speech therapist who helped J find all the words that jumbled in his head, frustrating him in ways he couldn’t communicate to us. A physical therapist who has known my babies since they were stranded in newborn bodies and who has been the only friend I’ve seen on a weekly basis for the last 3.5 years. A preschool with more devoted and talented teachers under one roof than a parent could ever expect, a place that has become a second home for my kids. These people have been life-sustaining in so many ways, and they have been an emotional oasis for all of us.

The days have been so very long, and I’ve wasted plenty of time yearning for new adventures for our family in a place that feels more like home. But, I’m amazed to discover as our time here draws to a close that it hurts to leave. This was the home of our babies, the anchor during difficult storms, our prison during winter quarantines, and our refuge during days that sucked the life out of us. Leaving here closes the chapter on tiny babies and NICUs. We came to this home as a couple, and we leave as a family.

This place has taught me about timing. We are not the masters of time, no matter how much we think we understand the plan. Having two tiny babies was never in my plan, but I would never change it. And living here might not have been of my choosing, but it was never about my husband and me. Our reason for being here was those babies who needed so much love and care in their early years.

And this week I’ve had one final lesson to underscore the point. Since M was born nearly 18 months ago, I’ve been saying that I didn’t want to leave her physical therapist until she could walk.

M took her first two steps at home this week, and she took four steps in therapy today. She is beginning to walk, the week before we’re leaving.

Sometimes, it is inexplicable how neatly the loose ends of life are tied.