Goodbye to Therapy

We saw our longtime physical therapist recently. She’s the one who worked with our family and both of our kids for 3.5 years. We only had a few minutes with her, but it was such a treat to see her face and give her a hug. As we were leaving, I told my husband how sad I was, that it was like leaving a dear friend.

And she is a dear friend. In the best of circumstances, therapists become friends, because they share a family’s goals, they visit a family’s home, and they know a family’s children better than most friends and extended family. Our pt knew nearly everything about our kids, she helped a clueless new mama find her bearings, and she heard all my concerns, complaints, and fears for years. She was encouraging, thoughtful, and central to the success of my kids. There really aren’t words to express my appreciation.

And true to our friendship, she helped me again in just the few minutes we were with her. She took one look at M, who wasn’t walking and was barely talking six months ago when we moved, and she said, “She doesn’t need therapy!” M was racing from one side of the room to the other, tripping over mats and toys. She was falling and popping right up. She was giggling and chattering. She was showing us how she can jump and throw. I said, “We’ve been discussing what to do, because she’s eligible for services until she’s 3. But, she’s come so far in the last few months that we’re not sure she needs any more therapy.” And the one person in the entire world whose opinion on development I trust the most spoke again. “She’s doing everything. I don’t think she needs therapy!”

And with that, I think we’ve made our decision, and after the holidays, I’ll finish the paperwork to end our four years of therapy. It was Christmas in 2010 when I cried to my best friend on the phone that I didn’t think I could go on because I was so overwhelmed, and when I look at these wild kids, I can’t help but be amazed that we’re here at the end of therapy. And I can’t help but be grateful for people who devote their lives to helping children.

Thank you, K. Thank you for everything.

My Cup Runneth Over

September and October passed so quickly. I often find myself lost in the daily rhythms of raising kids: wake up, feed the kids breakfast, take J to school, run errands, each lunch, nap time, and on. Each day blurs past me and into the next one, and before I know it, months have passed.

So, I can’t say when M stopped walking and started running. Each milestone was so arduous until August. Every move she made was monitored. Then, she finally started walking at nearly 20 months old and never looked back. She is such an energetic, athletic, busy, curious, wild child that I’m sure I’ll sit on the sidelines of the soccer field when she’s in high school, and I’ll reminisce with the other parents about how long it took her to walk. And that she’s been making up for it ever since!

With my son, a motor delay led to a speech delay; we worked so hard to help him physically that his brain had little energy left for talking. But, I’m amazed to witness my daughter shattering goal after goal, whether it’s gross motor, fine motor, or language development. Each week she’s a new child with new tricks. And I feel a little guilty that in all this rush, I’m failing to document all the cute things she says and does.

I simply cannot keep up.

But, when your child has started life so tiny, so fragile, and so inundated with a developmental uphill climb, there is something extra special about watching her soar. And for the first time in the more than four years that I’ve been a mother, we’re now looking at a future without therapy of any kind. I cannot even speak to how grateful I am. My cup absolutely runneth over.

The Preemie Brain

KROMKRATHOG/freedigitalphotos.net

KROMKRATHOG/freedigitalphotos.net

There are misconceptions about what it’s like for a baby born three months early, and they generally revolve around the idea that a baby who can live, even with extensive intervention, is basically just a tiny version of a full-term baby. And that just isn’t true. At all.

Preemie brains are wired differently. Especially the brains of preemies born months early.

I’ll admit it. Sometimes, I’m a little brusque when people question why my kids have therapy. I really try to be open and honest about all aspects of having a preemie, because if someone bothers to be interested, I want to share what I know. But, there is an element of the population that asks questions in a judgmental way. Why would a baby need therapy? Don’t I know preemies will catch up eventually anyway?

And they’re wrong. Babies often do need therapy, for a variety of reasons, and just like we seek out medical care, as parents we should be open to occupational, physical, and speech therapies. It is our job to change therapists or end a therapy program if we see that it isn’t working for our child, but I don’t understand being closed to the options available for your child before trying any of them. And I don’t know why another parent would question my child’s need for therapy. Besides, so much research shows how malleable a small child’s brain is. The more you encourage it to rewire itself around the damage caused by such an early birth, the more possibilities exist for that child.

When it comes to preemies and brain damage–caused by oxygen deprivation, brain bleeds, holes in the brain, and overstimulation to an immature neurological system–the jury is out. No one can tell you exactly how a child will do in a year or two years or ten years. This is why early intervention is critical and why developmental milestones are so crucial. Sure, the preemie born two months early won’t roll over or sit up on the same schedule as a full-term baby. But, when he isn’t rolling over at 7 months old, doctors and therapists begin to worry that larger issues like cerebral palsy exist. It’s not just about catching a preemie up to a full-term baby; each milestone met is evidence that a baby’s brain is continuing to grow and develop.

I also get frustrated when people tell me they have a preemie, who was born three weeks early, and that they understand what it’s like to have a preemie. I’m not taking away from the fact that a birth experience three weeks early can be a surprise and stressful, but the long-term concerns and care for a baby born at 34 weeks or later is completely different from all the risks of babies born MONTHS early. A baby born at 26 weeks has an entirely different experience from one born at 36 weeks. The earlier the baby is, the more risks for complications; it’s exponential. Before I was a mother, I’m sure I didn’t know the realities of having preemies–the therapies, diagnoses, interventions–but I know I wouldn’t have assumed that a baby can pop out of the womb three months early and act like a full-term baby. Babies are never meant to come into the world weeks and weeks early, and just because we have the capabilities to give them a great shot at life doesn’t mean the journey is easy. For most preemies born before 32 weeks, it takes years–yes, years–to catch up developmentally, and they may continue to face the challenges of being a preemie well into their childhoods and beyond.

Not all preemies are created equally. Another misconception is that because a neighbor had preemie twins born at 29 weeks who were typically developing babies within months of their release from the hospital, my experience should mirror that one. Each preemie is different, as different as their experiences and personalities and genetic makeup. So many NICU journeys overlap, but each one is unique. There is no baby whose story is just like anyone else’s. Miraculous stories should be shared, but sometimes the miracle is that a baby lived in the first place, not in how fast he bounded out of the hospital. Sometimes, when the expectation is that a baby should come home before her due date, it sets an unfair bar of achievement. And expecting a preemie who comes home to act like a full-term baby is not a fair standard either. It sets the whole family up for disappointment and frustration, and it takes away from all the miracles achieved on a daily basis.

I was hard on J. I knew in my head that his development would take longer, that he would be a baby well into his second year. But, I wasn’t prepared for the reality. I pushed him hard to walk and talk. Now, I better understand that he did hold himself back, as it is in his nature to do. J doesn’t rock the boat or take risks, and walking is risky for a baby because it involves falling. I see that J needs time and space and encouragement, and any frustration on my part hurts his progress. I also know more preemies than I did as a brand-new mother. I better understand that J’s health itself should be celebrated; we are so fortunate for it. I wish I’d focused on that fact more and worried less. But, I felt that I was constantly explaining to the world at large why my 17-month-old wasn’t walking, why my 2.5-year-old wasn’t talking, why my 3-year-old was wearing 24-month clothes. That’s all part of the journey, though.

Looking back, J tackled developmental goals impressively; it was just done with his characteristic caution and quiet reserve. He wasn’t showy. He didn’t develop in leaps and bounds, as my daughter does. Each day was a slight improvement on the day before, until before we knew it he was a typical 3-year-old. I was so frustrated that J didn’t walk until he was 17-months old, when he had the ability a month or two earlier. Then, enter M, who didn’t walk until she was nearly 20 months old and 17 months adjusted age, 3 months past the norm. M is healthy, strong, physically-active; I think she’ll be an athlete with her energy level, determination, and competitive spirit. But, she walked much later than J, and had he been my second child instead of my first, I would have better appreciated all of his achievements. Preemies are just on their own schedule.

I am just now fully realizing something critical: a preemie brain is phenomenally different from a full-term brain. Sometimes, we expect to see a preemie with asthma or glasses but not a preemie who takes two years to walk. I think this is because the stereotypes are based on a dated understanding about the capabilities of NICUs. The current medical technology is amazing, so many babies who come out of the NICU are in excellent outward health. They look perfectly healthy, but the NICU can’t alter the reality that a baby’s brain is not made to regulate temperature and breathing or to process the nerve sensations of the human touch at 26 weeks. I have witnessed how my babies are wired a bit differently. My husband and I now contribute some of the quirks of our children, which mirror no one else in the family, as having to do with the extraordinary feats of their brains. Sensations like light and sound are just different to preemies, even in babies who aren’t diagnosed with any other condition. Our preemies are easily over-stimulated and hard to relax. They don’t want to be rocked or held. They struggle to fall asleep. They cannot sleep in the car despite how exhausted they are, even on 12-hour road trips. In fact, the more exhausted they are, the less able to fall asleep they become. My son screamed for his first months at home, and the only way to wind him down was to push him in his stroller around the house in circles until he grew drowsy. His body would twitch as he struggled to relax. And we have literally held my daughter down until one by one her muscles relaxed; we could feel her falling asleep from her legs, to her arms, to her hands, and finally her eyelids. Sure, some full-term kids have some of the same problems, but to the extent that we notice it? We are regimented about nap times and bed times, about routines, and about sleep environments for a very good reason; sleep can be a challenge.

Another anomaly is that both of our preemies were left-side dominate as tiny babies, when almost no one in our families is left-handed. The conventional wisdom that you won’t know if a child prefers one hand over another until age 3? Hogwash! Ask our long-time physical therapist, and she’ll be our expert witness. The first hand both kids used to put a tiny, baby fist in their mouths? The left. The arm they first used to pull up? Their left. The first steps they took? With their left foot. My kids are complete opposites in temperament and personality, and the strengths of one are the weaknesses of the other; yet, they share left-handedness. More preemies are left-handed than full-term kids, and I would love to see more research concerning why, not just because it’s interesting but because I think it has to do with unusual brain development. A better understanding of that brain development could also shed light on all sorts of risks that our preemies face: autism, SPD, ADD/ADHD, cerebral palsy…and the list goes on and on.

Preemies are exceptional, in every sense of the word. They are amazing and unique, and they aren’t just tiny versions of bigger babies. It’s a completely different experience, and I guess I’m just a little out of breath with saying so. I love questions and curiosity; I like relating to other parents and sharing our experiences. Just because this is my life doesn’t mean I’m not curious about all the unique aspects of parenting that someone else has experienced. I just don’t want to have to justify why my child receives therapy or additional medical oversight or state medical services. I’m tired of explaining that part, like I’m some sort of taker of the medical system or some over-reacting stage mom.

I’m just a mom who has preemies, and I’m doing what any mom with tiny babies would do.

Gone Is The Long Babyhood

J LaughingRecently, J has taken ownership over his role as Big Brother. It used to be that M was crawling in all the wrong places (usually through J’s toys) and throwing all the wrong things (like J’s toys) and generally making a mess of things. But, as M has started walking more and crawling less, it’s as if her brother sees her differently. She’s no longer the baby who needs protection and redirection; she’s the little sister who is playing on J’s team. They run through the house and push toys all over the place. They squabble and squawk and giggle from one end of the house to the other. J’s imagination is on fire these days, and he thinks of all sorts of creative activities for them to do, which generally involve imagining that they’re repair people of some sort in large trucks. As hard-headed and opinionated as M is, she must not fully realize that J is organizing her play; she’s just glad to be allowed on his team.

What made me notice how much the play around here has changed is how J talks. Everything is “we” now. (We’re hungry. We want to go for a walk. We like peaches! We do not like to clean. We love dogs, Mama. We want more apples, please.) All this “we” business is adorable.

But, J also speaks for M about how she’s feeling or what she needs, which I actually find extraordinarily helpful. I can’t always see her signing or hear her babbling, so she’d developed a habit of just screaming until I came running. Now, J translates what she wants and yells it in my direction (usually in the kitchen). “MA-MA! M says she wants more blueberries, please!” I also find his translations sweet because he sees her pointing to her blueberries and signing more and he thinks to add the please part.

As with everything preemie-related, I catch myself watching them and traveling back in time. Two years ago, I couldn’t get much of a word out of J, and now he’s not only expressing his own needs in long sentences and paragraphs but he’s also expressing his sister’s needs. What happened to my tiny babies?

That long Preemie Babyhood that consumed the better part of four years is officially over.

Another Victory

I took the kids to the activity center last week to a free play session in the gymnasium. The entire room was lined with mats, encouraging kids to tumble and run and play wildly to their heart’s content. It was a joyous chaos.

Not long ago, I never would have considered such a place. My son is reserved and cautious; a year ago he would have taken one look at that wild room filled with loud, squealing, out-of-control children, and he would have walked back out the door. For so long, he was delayed in his speech and in his physical abilities. He was small for his age, and other kids pushed him around at playdates and in parks. Even if they meant him no harm, he was nervous around kids he didn’t know, especially wild ones playing in wild places.

It wasn’t long ago that M didn’t move enough to play in a gymnasium. Now, she’s crawling AND walking; she’s toddling and falling and exploring her world in ways she couldn’t just a few months ago.

I’m always struck by the sensation that people outside of our world who don’t know us have no idea of these sorts of victories. J was jumping off of mats and hanging off of bars. M crawled for a solid hour straight, only stopping to smile at other children bumping into her, before racing off to new discoveries. Nothing about these children suggests all the therapy it has taken to get us here. All of the interventions and teachers and advice and doctors. All of it.

As I watched J play with a friend, I remembered how distraught I was in his first months home. He was so small and so fragile. He was terribly unhappy. Compared to a baby boy born just five days earlier and dressed in the same red Christmas outfit, they looked months apart–which felt like oceans apart to me. And now, they’re jumping and laughing as equals, as friends.

This is what we’ve worked so hard to accomplish. Two kids happily rolling and walking and sliding and jumping.

Early intervention should never be underestimated, because maybe these kids would have gotten here. And maybe not. But, it’s not a maybe worth chancing.

This small victory has been worth it. It has been worth all of it.

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.

The Preemie Lifestyle


There is a myth that when you bring your baby home you put the NICU journey behind you.It’s what we all want to believe when we’re struggling through the emotions of having a hospitalized baby. We keep focused on that beautiful day when we’ll peel out of the hospital parking lot for the very last time with the baby in tow. And it’s a good thing that we have a goal as we trudge in and out of days in the NICU.

But, the crashing of fantasy and reality can be brutal.

After a couple of months of struggling through sleepless nights, a punishing pumping/breastfeeding schedule, and what I call the Two-Month Screaming, I began to fall into a depression. We were under our winter quarantine, I felt isolated, and the days were long and taxing.

I’ll admit that I wondered to myself, “What have I done?”

Parenting is rarely what you imagine, envision, or daydream. It is both better and worse. But, when you start out with a baby in the NICU, you drain so much of your emotional reserves in those early days. I found that I had little left for the journey after the NICU.

I came to a realization when J was six months old and he was evaluated for therapy. A social worker had mentioned all the services available for preemies as we were leaving the NICU, but I had no idea the kind of delays J would have. He wasn’t even rolling over at six months old. In fact, he didn’t roll over until he was closer to 9 months old and had spent three months in physical therapy.

It began to dawn on me that leaving the NICU wasn’t the destination or the endpoint. Having a preemie was a lifestyle. It involved Synagis shots and physical therapy and teachers who specialized in developmental delays. I wiped down surfaces with the zeal of a woman who feared one illness might kill her baby. Our entire family was vaccinated. My career disappeared into the background indefinitely. Getting J healthy was my singular focus. I felt that I owed it to him to give him as good of a start as I could, especially because I had evicted him from my body at 26 weeks.

Once I had M early too, this way of life really did become normal. I talk regularly with other preemie parents. I blog about preemie issues. I strategize on ways to help M catch up with her peers. Not a day goes by that I don’t think about where we’ve been. Raising preemies is a lifestyle, at least while they’re small children and maybe forever. The jury is out on where this journey goes, but for now it is all-consuming.

For a long time, I lived from one developmental goal to the next. I always focused on where we were going. But, sometimes we just need to slow down and appreciate where we are.

These children are hilarious and bright and energetic and enthusiastic. And so resilient. They could be poster children for all that is possible.

Would I see them this way if I hadn’t witnessed their beginning? Holding your baby in the palm of your hand changes you. Watching your two-pound baby breathe all on her own challenges everything you’ve ever believed. I’ve written before about the magic of having preemies, and it is so true. For all the difficulties, some of our moments in the NICU could take your breath away with their beauty.

Victories are sweeter, because they are so hard-fought. Walking isn’t just putting a few wobbly steps together; it’s the pinnacle of an uphill climb that began at birth, it’s the achievement built upon months and months of therapy. So what if everything takes longer, if it all seems so challenging, if sometimes I am so exhausted at trying to be a great mother? They are worth it all.

I didn’t choose the Preemie Lifestyle; it chose me. And I wouldn’t trade it.

Waiting To Walk

It took J forever to walk.

By forever, I mean 17 months.

Actually, in retrospect, I thought it took J forever to walk, but now I have M to put his development into perspective. M always has this effect on me. She is nothing like J, and her story is nothing like J’s. She is exuberance to his reserve. She is fearless to his caution. She is defiant to his obedience. She had 3.5 more weeks in the womb than he did, which any preemie parent knows is just about a lifetime. She also had two rounds of steroid shots to develop her lungs just before birth; J did not.

M is almost 16 months old. By adjusted age, she is nearly at the point when J was hanging onto his walking wings for dear life, taking his first steps of hard-fought independence. Despite all their differences and her perceived advantages, it appears that she will walk no earlier than he did.

If J changed everything in my life, turned it all upside down and inside out, then how could M be such a surprise? She has shown me that even when you think you’ve made sense of the world, you probably are still just a sweet, little babe in the woods, naïve about your own naivety. So much of my frustration with J was misplaced because I compared him to unfair goals and children who weren’t born prematurely. Now, I realize that every goal he met, every step of forward progress he made, was nothing short of miraculous.

Not to take anything away from M, because she has overcome odds too, but it was J who was thrown to the wolves at 26 weeks with so many challenges. In his caution and reserve, sometimes we miss the magic of his accomplishments. They aren’t done in explosive fits or with gleeful giggles, like with M, and so sometimes we look up one day and find that tiny changes have compounded into J becoming a totally different child.

Now, as I await the tentative first steps of another late walker, I also realize something else. The early years of raising premature babies are different from the norm; in fact, they are vastly different. And even though the kids are all different too, there are some commonalities that preemies share that we cannot escape.

It doesn’t seem to matter that M’s personality is nothing like J’s, or that she’s a girl and he’s a boy. It doesn’t seem to matter that she crawls and he didn’t, or that she had 25 more days of development in utero. Here we are at 16 months with a baby who isn’t yet walking. And in my world, that is perfectly normal.