Find Your Folks

When Ruby was a toddler I took her to an indoor gym class, to keep her moving in the cold winter. While she was climbing all over the equipment, another girl her age could neither climb up the very small ladder, nor slide down on her own. Her mother never let go of her hand, "helping" her all the time. The mother asked me why Ruby was so capable. My answer was, simple. Practice; allowing her to try.

This mother needed permission to let go. Seeing Ruby on the slide gave her more confidence to let her child try.

There is a notion I remember hearing when my kids were still too young for it to apply, that parents should look to local custom to help determine when to grant freedoms to their kids. That is, if the neighborhood kids are riding their bikes on their own at nine, then you know it's fine to let your kids do the same. Or, if most kids walk to middle school on their own, let you can feel comfortable letting your kids do it, too. The local custom part is important, as it acknowledges that what is normal in suburban New Jersey may be very different from the streets of Manhattan.

There's a community spirit to this reasoning, that puts the onus on making these leaps of faith--after all, letting our kids out of our sight can be seen as such a leap--on the shoulders of many families. The community spirit encourages families to trust each other, and to watch out for each other.

Parents using each other as guide-posts is a great way to work together to raise our children. But it can be hard to do this when there is little trust among parents, or when parents fear that only they can ensure the safety of their kids.

Once, years ago, my family was walking on the sidewalk with another family in a moderately busy area (not in NYC). The other family's child, age 4, rushed ahead with my kids, ages 4 and 6, who were playing, running, etc. My girls were used to walking behind us, in front of us, around us. Josh and I were watching them, but we did not insist that they hold our hands, except for crossing streets. The other family had different rules. The parents became furious with their child for running ahead and "not staying with them" -- i.e. doing exactly what we allowed ours to do all the time. I said "It's okay, we're watching them." But the parents shrugged us off, and punished their child anyway. They clearly didn't trust us, or our norms.

Without doubt, there are children who require special limits because of their own limitations. Know thy child, above all else. But this child seemed normal to me, capable and responsive. The parents' fear, and their need for obedience, were very different from our parental ethos.

Now that Bella and Ruby are walking to school on their own, I feel the tug of the variety of opinion on children's freedom. Some parents of similar-aged children bristle ("not my kid"). A few give their children more freedom than we do. There's no consensus.

So what gives? Aren't we parents supposed to be looking towards each other for guidance?

 I wonder if this is a New York City dilemma. After all, NYC is not a neighborhood in the traditional sense, in that it's so big and diverse. So, like in all other social spheres in this city, we need to go searching for our "neighbors"--the folks whose ways speak to us--and elect them as our community. I reckon this applies elsewhere, too.

When I need to, I find my free-range parenting friends to buck me up and give me support. One friend in particular, who has a slightly older child, tells me how it's done. She told me what to say to Bella before she took the subway by herself the first time, and how to prepare her for the what-ifs. She also told me that Bella could do it, just like her daughter had. And sure enough, Bella can. We all need friends like this! Parenting need not involve reinventing the wheel in each family. Wherever you are, find your folks.

Milo's Story

Last week, the following remarkable Facebook status flashed across my feed:

“I just learned that 64 percent of babies with spina bifida are selectively aborted after being diagnosed. That number is heartbreaking and we need to change that. Yes Milo has spina bifida, yes Milo (and all of us) have some really really hard days. But Milo is happy, Milo is thriving and best of all Milo is doing almost everything the doctors told us he wouldn't. Yes he has to work a lot harder, but he does it all with a smile and his strength and courage is an inspiration. October is spina bifida awareness month- if you have any questions about spina bifida or Milo's story, please just ask we are always happy to share and brag about our rock star.” --Tova Berger Nicholson

Tova and I grew up in the same Jewish community on Long Island. We have not kept in close contact, so I hadn't known that her son had spina bifida. I was struck by the honesty, sincerity, and joy in her post. Since I know very little spina bifida, I took Tova up on her offer to share Milo's story. I wanted to hear about the challenges and realities of raising her son, and I wanted to help her get the word out about the condition. But mostly, I wanted to hear more of her exuberance about parenting Milo. Below are Tova's answers to my questions.

How and when did you find out that Milo has spina bifida?

When I was 16 weeks pregnant I went in for the routine quad screening blood tests. A few days later I got a call from my doctor telling me the results were concerning: a 1 in 4 chance of a neural tube defect. We got the call on a Friday afternoon and there was literally nothing we could do--it was awful. We had to wait until Monday morning to go in for a level 2 (very detailed) ultrasound. We found out that morning, via ultrasound, that my blood results were not a false positive. Our little baby did in fact have a neural tube defect, spina bifida. It was a day we will never forget.

What was your reaction? Your husband’s? Your family’s?

The flood of emotions is hard to describe. In the moment we found out I was completely heartbroken and guilty. I can remember, very vividly, the doctor who gave us the results telling me over and over again that this wasn’t my fault. But as a mother, its hard to hear your baby is ‘broken’; how could I not be to blame? Alex, my husband, is always extremely optimistic, and in that moment his world shattered. Why us? Why our baby? We knew so many other people pregnant at the same time- why was this happening to our baby? The emotions changed over the course of the pregnancy (and they are still changing). I became really angry at points. I learned from some other families who we met through spina bifida connections, that you have to go through a grieving process to arrive at acceptance of the situation. It’s a weird thought to have to grieve, but it's true. You have to grieve over the idea of a ‘perfectly healthy’ baby and come to terms with spina bifida. Alex and I went through it together--when I had a down day, he picked me up, and vice versa. We never allowed both of us to be down at the same time. We spent the first week after the diagnosis in our apartment, watching movies and crying a lot. After that week we picked ourselves up and decided we needed to do whatever we could for our little baby, and that really helped get us through. We still have our down days, but they are so rare that when we have them, we allow ourselves to have a good cry and then move on.

I think our families all put on a brave face at the time. No one wants to hear something is wrong with a family member, especially an unborn baby. But they all stood strong and gave us the support we needed. They cried with us when we needed them to, but more importantly they picked us up when we needed it most. They reminded us over and over again that this little baby was ours and we would ALL get through this together. They are still a very integral part of our support system and a major reason why Milo is doing so amazingly.

What is spina bifida? What are Milo’s symptoms?

Spina bifida is a neural tube defect. Normally, the neural tube forms early in the pregnancy and closes by the 28th day after conception, when most people don’t even know they are pregnant yet. In babies with spina bifida, a portion of the neural tube fails to develop or close properly, causing defects in the spinal cord.

There are various forms of spina bifida ranging in severity. Myelomeningocele is the most severe form, but also the most common. In this form, the baby's spinal canal remains open causing nerves to be exposed. When a baby is diagnosed with myelomeningocele, surgery is performed usually within 24 hours after birth to close the back. Hydrocephalus (an excess of cerebrospinal fluid on the brain) is unfortunately something that goes hand in hand with spina bifida; I think about 80% of children born with spina bifida will also need a shunt to control the hydrocephalus. A shunt is placed in the brain to help drain the excess fluid, usually into the stomach.

Milo was born with myelomeningocele and does require a shunt. He was born, via c-section, three weeks early because the hydrocephalus was increasing faster than the doctors liked. Milo had his back closure surgery 24 hours after birth as well as his vp shunt placed. It was really, really hard--Milo was born in the morning, and I didn’t even get to see him until that night. As soon as he was delivered they had to take him to the NICU to protect his open back and monitor him.  Alex and my parents were able to meet him, but I had to wait since I was recovering from surgery. It was the longest 12 hours. We couldn’t hold him until he was three days old. 

But, from the beginning Milo shocked everyone. He was released after only one week; two major surgeries and he bounced right back. When Milo was eight weeks old his shunt malfunctioned and we ended up back in the hospital to get it replaced, so another surgery. But again, he literally came out of surgery as Milo 2.0.  

The opening on the spine causes nerve damage; which nerves are damaged depends on where the opening is on the spine. The lower on the spine, the better for walking, but more issues arise with bowel and bladder. Milo does have a few issues in that area, but we will keep that private for his sake. Milo's ankles are pretty weak, so he uses little ankle orthotics to help him walk, although he can walk without them as well, which is amazing. The hardest thing about spina bifida is not only is it a wait-and-see game, but each case is literally so unique. We know several other people with the same level opening as Milo, and they each function so differently.

Think back to the time when you first found out that Milo had spina bifida. How does life as Milo’s mother compare to what you imagined it would be?

When you first find out your child has some sort of disorder, your mind runs crazy. When you have doctors telling you the absolute worst outcomes, it's really hard to think about life being normal. We were told our son would be a vegetable, have a low IQ, not be able to walk, wouldn’t be able to go to the bathroom, and would be in and out of hospitals and doctors' offices. We were ready to accept whatever we were handed, but, my god, life is completely different to what the doctors told us. Milo is incredibly smart--no one can get over his vocabulary and social skills--he may be behind in some physical aspects, but he more than makes up for that in cognitive development. 

Don’t get me wrong, it's not a walk in the park: no parent of a child with spina bifida will say it's easy. We have a different normal and while the first year of Milo’s life was hard and took a lot physically and mentally, it was our learning curve and we now are in our groove and we make it all work. I wish, when I was pregnant, we could have had a glimpse into our life now--we would have been able to enjoy the pregnancy so much more!

What is the most surprising thing about parenting Milo?

Milo has taught us so much. I never realized how much it's possible to learn from someone at such a young age. He has taught us to stop and slow down and really appreciate every little thing. When Milo wiggles a toe, that’s a huge deal--we celebrate that and I remember the first time I saw him do it--it's something so many people take for granted. But he has taught us to never take for granted even the smallest thing. Alex and I had a pretty strong relationship before we got pregnant with Milo, but through pregnancy and these last 2+ years he has made us such a strong force; very little can get in our way.

What is the hardest thing?

It has gotten easier, but it's hard to see what other children Milo’s age, and younger, are able to do, and without any thought. In the playground they are running, jumping, going up and down the steps alone. When we go to the playground, Milo can do it all, he just needs his mama or daddy right there to help him. It doesn’t bother him, which makes it a bit easier for us, but it does still break my heart a bit. Milo knows a different normal than we do and it's hard to remember that. We do try to make sure he doesn’t feel different--we want to make sure he knows he is like everyone else. Instead of needing glasses to see or hearing aids to help hear, Milo needs braces to help walk, and that’s ok. And we want to make sure he always knows that.

What is the best thing?

The best thing is seeing how happy Milo is. Milo has worked so hard to get to where he is today--he started walking at 25 months and he hasn’t looked back. He is so proud of himself with every thing he has achieved with his own hard work. There is nothing more heart-warming than seeing your child achieve something they have been working so long and hard on, but then seeing how proud he is of himself is just the best. Milo has the most amazing attitude and literally just goes with the flow and it really has helped him overcome so much. His happiness is everything to us and when we do have that rare down day, seeing him happy really helps put things into perspective.

What else would you like people to know about your child, your family, or this condition?

Milo is a normal 28 month old. He is doing everything a two-year-old is supposed to do: he goes to a two’s program, he loves to color, play with trucks, and yes, he has his tantrums. Milo has spina bifida; he always will. But it's just a part of who he is, it is not WHO he is. We are always happy to talk about it, but we don’t make it the first thing people know, as we don’t want him treated differently from anyone else. People have said, how great he looks and you would never know anything was wrong. And I know they mean well, and who knows, I might have said something similar to other families as well, before we were in our situation. But the truth is, there is nothing wrong with Milo. People hear a diagnosis and they shudder and apologize. There is nothing to apologize for. If you have met and know Milo, you know that he is more than OK. I keep going back to it, but his happiness is everything. Yes, we will have bumps down the road, but his attitude will help overcome those bumps.

Milo is a normal 28 month old. He is doing everything a two-year-old is supposed to do: he goes to a two’s program, he loves to color, play with trucks, and yes, he has his tantrums. Milo has spina bifida; he always will. But it's just a part of who he is, it is not WHO he is.

One other thing: if you are ever in the unfortunate situation of receiving a diagnosis for your child, no matter what it is, do your research. Doctors are the experts on some things, but not everything. Find families who are dealing with it every day and talk to them; they will know best and tell it like it is. If we had listened to what the doctors told us, who knows where we would be today, and the thought honestly makes me sick. There are always families out there that would love to share their stories and help others.

What resources (websites, organizations) have helped you the most?

While I was pregnant I found a spina bifida kids group on babycenter. Those families saved us during our pregnancy. Hearing their stories and seeing their children really helped keep our spirits up. In the last year I joined a few groups on Facebook, and it's really amazing what a tight-knit community it is. It's really refreshing to be part of community where everyone "gets it". It's a place where people come to share and brag when their child gets up on all fours, or sits unassisted, or takes their first step, and everyone is excited, as we all know that feeling.

What do you do professionally?

I am a stay-at-home mom. It’s so cliche, but so true: being a stay at home mom is the hardest job I have ever had, but by far the most rewarding.

On the Shores of Lake Wobegon

Sitting in a circle on a grassy field beside a lake, fifteen or twenty parents joined together in a discussion at a school shabbaton, almost two years ago. The discussion leader, Rabbi Laurie Katz Braun, who is also a parent in our school, asked us to go around the circle and say three positive and three negative traits of our children.

Within minutes, parents in the circle were crying. It was very intimate, and very cathartic.

Why did the prompt evoke so much emotion? 

The positive traits, while important to appreciate in one's children, were predictable: She's creative. He's funny. She's loving. He's kind. She's intelligent. He's full of life.

The negative traits brought out something different. Everyone loves their children, and we all do our best to love all parts of them. But how often are we asked, outside of a therapist's office, to speak openly about their imperfections? How often do we offer to do so? The discussion of children's negative traits brought out elements of pain and fear. Mothers and fathers spoke about the challenges of raising children who are not what they might have expected; who have needs that sometimes seem beyond their powers to meet.

It's easy to feel (especially while flipping through Facebook), that everyone's lives are just perfect. Smiling kids, successful parents, trophies and performances and A's are blasted out into the world: the product of parents' pride. But what happens when perfection is expected? We only say the good things, so that any kind of difficulty becomes a secret. Welcome to Lake Wobegon, "where all the women are strong, all the men are good looking, and all the children are above average."

That parents' circle taught me something I will not soon forget. As I listened to the other parents talk about their challenging children, I realized that Josh and I are not alone. Our kids are not perfect. They each have their own challenges, but I won't pretend that they are equally challenging. We have one child who has required us to sharpen our parenting skills more than the others. It helps immeasurably to know that we're not alone.

Just as you can work for years with someone and not know their salary, so too do parents avoid discussing their kids' challenges. No one wants to out their kids as having problems, and fair enough: children deserve to be the bearers of their own issues. But on the other hand, there's nothing like feeling supported, especially when you're doing something hard, like parenting kids with all their varied needs. I hope other parents in that circle gained strength, as I did, from the simple acknowledgment of how hard it can be.

Thank you to the parents and friends--you know who you are--who have made me feel that I'm not alone. Parenting is a journey, and at times the road is steep. No one ever said it was going to be easy.


[p.s. I want to emphasize that the parenting circle at the shabbaton was not about parenting children with disabilities--it was just about parenting. But perhaps because of where the discussion went, Rabbi Laurie read an essay by Emily Perl Kingsley, which offers a poignant analogy to explain what it's like parenting a child with special needs. You've prepared for a trip to Italy, but surprise! You're going to Holland. Click here to read it: Welcome to Holland.]