Cleft Awareness

Posted on
Categories Congenital Anomaly, Medical, Parenting, Special Needs38 Comments

July is National Cleft and Craniofacial Awareness and Prevention Month! Find more #cleftawareness photos and stories on Facebook!

Sweet Pea’s Story

On a beautiful Colorado day in June of 2012, my heart was racing with anticipation and excitement. Our long awaited second child was about to make his entry into the world! When he was born, he made no sound because his cord was wrapped around his neck…twice. They removed it and within moments, he was screaming his head off. It was like music to my ears! Moments later, the doctor informed me that our son, our Sweet Pea, was born with a cleft palate. While we knew that this was a possibility as I was born with one as well, it was still a blow. I had walked this road, and I knew of the struggles that he would face.

IMG_0018

He was admitted to the NICU for observation due to his difficult delivery, but ended up staying for 3 days because he needed oxygen. He went home with oxygen, and remained on it for 13 weeks. During that time, feeding became a major issue. Our son was born without any of his soft palate, and was missing some of his hard palate as well. When people hear that we had cleft palates, they often say, “wow, you look so great!” While I appreciate the compliment, I realize that there is a lack of knowledge about clefts and choose to take these occurrences as a gift…an opportunity to raise awareness about clefts. For Sweet Pea and I, we do not have complete clefts, meaning our lips were not impacted by our cleft (see the bottom left picture in the chart below). While cosmetics were not an issue, feeding, breathing, speaking and orthodontics are.

11540883_488563694653563_785669165946100482_n

Because his cleft eliminated his entire soft palate, he was never able to latch to breastfeed. This was a huge blow to me and contributed to my post-partum depression. At only 6 weeks old, Sweet Pea was diagnosed with failure to thrive. We tried several methods of feeding him before we found the Haberman feeder. It is now called the Medela Special Needs Feeder and just one costs about $30. Obviously, the ability to feed our son was priceless, but it was very challenging. If it weren’t for this awesome bottle, our little man would have gotten a peg tube to feed him.

haberman

Many children have their cleft palates closed around 6 months of age…unless they have a craniofacial anomaly that impacts their airway. Our son also has Crouzon Syndrome, which makes his midface small, therefore making his airway small. Because of this, we had to wait until he was 12 months old before closing his palate. It was a long, difficult road, but well worth it!

A cleft palate repair typically takes about 3 hours…P’s took 5.  It was the longest day of my life.  When the craniofacial surgeon came out, he told us it was the most difficult repair he has ever done, but he believed it was successful. Two years later, I can attest to that claim. So far, P has had three surgeries, and the only surgery on the horizon is replacing his ear tubes. Today his biggest challenge is speech, but he has an amazing speech therapist and he is a resilient guy. We will continue to have him monitored by his Cleft/Craniofacial Team on a yearly basis. While we cannot predict his future, we do have a good idea of what to expect from my own experiences.

My hope is that this post will raise awareness about clefts and craniofacial differences, and that it will encourage parents who are on this road too. As someone who was born with Crouzon Syndrome, Craniosynostosis, Chiari Malformation, and a cleft palate, I can say that I am thriving today. My son has taught me a lot about myself, how I deal with our birth defects and how I view myself and him as we walk this path.  He has taught me that I am his voice, his advocate and his cheerleader. Maybe he can teach others too?

Here are some links for further research and support:

Risk of Oral Clefts in Twins

CCA Guide to Understanding Cleft Lip and Palate

Cleft Palate Foundation

CCA Kids

Do you, or someone you love, have a cleft?

Would you like further information about cleft or craniofacial support and encouragement?

Comment below or send a message!

Sara is a mama of four children, two of them being surprise identical twin girls. She is happily married to the love of her life, stays home with her children and is currently homeschooling her oldest child. Most of her writing is centered around raising awareness about Crouzon Syndrome and cleft palates, advocating for your child, homeschooling and raising multiples. Find her blog at Confessions of an Outnumbered Mom.

The Dad Network
Share this...Share on FacebookTweet about this on TwitterShare on Google+Pin on PinterestShare on StumbleUponShare on TumblrShare on RedditDigg thisShare on LinkedInEmail this to someone

Thank You, Derrick Coleman

Posted on
Categories Congenital Anomaly, Multiples in the NewsTags 2 Comments

I am no sports fan. I managed to completely forget that the Super Bowl was yesterday until a friend pointed it out when I invited her family over to dinner Sunday night.

I am, however, a fan of Derrick Coleman, player for the Seattle Seahawks (my daughters’ team, by the way, thanks to a Daddy and Grampy who are fans).

Here’s why.


See more US News from ABC|ABC World News

I could probably write a ton about why it’s important for people in the public eye to show compassion and generosity. I could go on and on about how important is it to see people with disabilities in professions unrelated to their disabilities. I could go on forever about why it’s important to acknowledge the challenges faced by those with special needs while at the same time letting them know that they can accomplish great things. But the video says it all.

Thank you, Derrick Coleman.

So, be honest. Did you cry watching this too?

Share this...Share on FacebookTweet about this on TwitterShare on Google+Pin on PinterestShare on StumbleUponShare on TumblrShare on RedditDigg thisShare on LinkedInEmail this to someone

Am I a Special Needs Parent?

Posted on
Categories Congenital Anomaly, Difference, Other people, Parenting, Perspective, Special Needs, Unique needs3 Comments

I read this exquisite piece by Sheri Dacon on the very particular grief that comes with having a special needs child. I hope that when I see a child with the facial features of Down Syndrome or the electric wheelchair that indicates some sort of mobility challenge, both the child and her parent see my smile as genuine, not strained and feel seen, not ogled.

I read a list of special needs parent characteristics that Marissa shared on Facebook, and was moved to tears by numbers 18 and 19:

  1. Your biggest fear is your child will outlive you.
  2. Your second biggest fear is he/she won’t.

What must it be like to fear or know that your child will never be self-sufficient? I felt it for a very short time. For a few months, early in my daughters’ lives, I felt the fear that I would have to bury my child. I wouldn’t wish that on anyone. Later, I feared that she would never be able to care for herself. I wouldn’t wish that on anyone either. But we’re past that now. M is doing great.

special

I’m Not a Special Needs Parent

Certainly, like every other responsible parent, I have a will that specifies who should care for my children if I die while they are still young and life insurance to minimize any financial burden on their care providers. I don’t, however, worry about their long-term wellbeing. Barring some unforeseen tragedy, both my children will be able to provide for themselves beyond high school. At age 7, they’re already talking about college, planning to get an apartment together as upperclassmen so they can have pets.

Compared to the parents I mentioned above, I am not a special needs parent. Not even close. The closest my kids come to being having special needs is in needing to be treated as intellectually well beyond their years while being emotionally and socially still just 7. J’s concern that it’s “rather risky, don’t you think?” for her father to mail her health insurance cards deserves a complete answer. Her question about the similarities between the recent Great Recession and the historic Great Depression, inspired by the Kit Kittredge books, required a nuanced response. I need to warn M to be careful about sharing her enthusiasm for the Fibonacci series because it might be perceived as bragging. These were just three topics that came up in the hour before I wrote this paragraph. My girls keep me and their teachers on our toes.

But I Am a Special Needs Parent

There are other measures, though, by which I am very much a special needs parent. We weren’t always so certain that my daughter M’s birth defect wouldn’t affect her life expectancy.

When the principal calls me into her office to discuss how children at school are teasing my child for her appearance, I am a special needs parents.

When my child’s teacher reads her whole class the beautiful book Wonder to help them have compassion for her, I am a special needs parent.

When I need to discuss with my 7-year-old whether she wants corrective surgery, I am a special needs parent.

When I ignore the stares of others because my daughter is panicking at the sight of a grocery store mascot or ballet dancer, I am a special needs parent.

I Fall In Between

My family is not shaped by M’s particular challenges. I do not have a severely disabled child. Nor are my children typical. M’s frontonasal dysplasia isn’t something I can afford to ignore. My daughters’ extreme intelligence is a parenting challenge.

I don’t pretend to understand the life-altering realities of families further down the special needs continuum. Nor should parents with neurotypical children or those whose appearance falls within our societal norms think they understand my reality.

There are things in my life that are hard for me. I can look around and see what appear to be easier lives and those that are much, much harder. Compassion beats comparison. “Hard is not relative,” says Ash Beckham around 3:40 in the video below, “Hard is hard.”

What’s the hard thing in your life? Do you feel guilty for finding it hard?

Sadia (rhymes with Nadia) has been coordinating How Do You Do It? since late 2012. She is the divorced mother of 7-year-old monozygotic twins, M and J. She lives with them and their 3 cats in the Austin, TX suburbs and works full time as a business analyst. She retired her personal blog, Double the Fun, when the girls entered elementary school and also blogs at Adoption.com and Multicultural Mothering.

Share this...Share on FacebookTweet about this on TwitterShare on Google+Pin on PinterestShare on StumbleUponShare on TumblrShare on RedditDigg thisShare on LinkedInEmail this to someone

Special Needs in the NICU

Posted on
Categories Anger, Congenital Anomaly, Emotion, Fear, Feeling Overwhelmed, Grief, Health, Love, Medical, Mommy Issues, NICU, Parenting, Special Needs, Theme Week, Unique needsTags , , , , , 2 Comments

Prematurity Awareness Week 2013: How Do You Do It?

World Prematurity Day November 17In the United States, 1 in 9 babies is born prematurely, 1 in 10 in Canada. Worldwide, over 15 million babies are born too soon each year. While not all multiples are born prematurely, a multiple birth increases the probability of an early delivery. Babies born prematurely, before 37 weeks gestation, are at a higher risk for health complications in infancy, some of which can have long-term effects. Full-term infants are not all free from their own health complications, of course.

In honor of November’s Prematurity Awareness Month, led by the March of Dimes, How Do You Do It? is focusing this week’s posts on The Moms’ experiences with premature deliveries, NICU stays, health complications, special needs, and how we’ve dealt with these complex issues.


Throughout my pregnancy, I knew premature delivery was possible, perhaps even likely. I read up on prematurity and the NICU. I was on bed rest for 12 weeks, and had access to the internet, after all. I thought I knew, more or less, what to expect from a NICU stay, especially as my pregnancy stretched into that “they’ll probably be just fine” stage after the magical 28th week.

I did not know, did not even suspect, what was in store for us. It took me a very long time to grasp it. In fact, I still may not fully comprehend things.

There is a whole other side to the NICU. Not just premature babies go there. Other babies, who may have been full term, end up there for various reasons. Whether by coincidence or by design (I never quite asked), our children’s hospital had an entire room (at least one) full of these babies, and that was where my Mr. A was transferred on his 15th day of life.

On his first day, and all the days leading up to it, I had no clue. He was measuring small, but doing fine. His anatomy scan was perfect. Our first trimester screenings—while not fully reliable for twins—were perfect. What they did not detect was undetectable: a cleft soft palate, dysgenesis of the corpus callosum, malrotated intestines, tracheomalacia, and other issues that, for his privacy, will remain undiscussed. At the root, a so-tiny and yet so-significant missing chunk of DNA. We did not find all this out on the first day, first week, or even first month. And we are not alone in this.

With a typical premature baby, of course there is no set path, and no guarantee. But with a special needs baby, especially one with a rare diagnoses, there’s even less. Every exam might have another pitfall. And when your baby is early and/or very small, as our Mr. A was, that’s all there is. The bad news just keeps coming, and they can’t do anything to fix it until he is bigger, if at all.

It is frightening. It is lonely. It is so very lonely. When you converse with parents of typical preemies, they cannot understand why your baby is doing so poorly. Conversations with parents of other medically complex babies are equally challenging: you are all new to this. “Oh, your baby’s heart is a mess? My son’s is just fine, but they want to give him a tracheostomy. What do you think I should do?”

specialneedsnicu

Conversations with doctors and nurses can be equally frustrating. Most of them, I have found, do not want to hurt your feelings. They might find refuge in medical terminology, they might be evasive, they might conceal information about your child’s health because they don’t want to overwhelm you. Worst of all, they may write you off completely, believing that your child is not worthy of their time and energy. All of these happened to us during our NICU stay.

When A was born, he did not have a gag reflex. I asked the neonatologist what that might mean for him, aside from the obvious. Her reply? “Oh, some sort of midline nervous issue,” and she walked away.

The doctor who gave us A’s diagnoses refused to answer any questions, saying, “But really, who can predict. My own son has learning disabilities. You never know.” We were not asking what his grades would be in 3rd grade, we were asking “But what does all this missing DNA mean?” The information pamphlet he handed to us (upside down, slid across the counter, like some sort of dirty secret) was printed entirely out of order and contained information on every known issue with deletions on the long arm of Chromosome 2, meaning not all of it applied to our son and much of it was conflicting. There were no page numbers and the printing cut off photos and such, so we were unable to piece it together and finally found it on the internet after we’d gone home. I don’t think the printing was intentional, but I do think he did not even glance at it and did not want to tell us anything it said.

A doctor, two weeks following A’s major abdominal surgery, told me he didn’t think A would ever be on full feeds, “because of his syndrome.” When I said he had been on full feeds (by tube) prior to the operation, the doctor at first refused to believe me, and then said, “Well, sometimes kids with syndromes just get worse.” My rage following that conversation ensured that that doctor never treated my son again.

Our underlying question, that I was only ever able to voice once, was: “Is all this worth it? Am I torturing my son for no reason? Should we just let him go? What will his quality of life be? Will he ever be happy?” The doctor I asked this to simply said, “Well, will your other son ever be happy?” To have asked the question that tormented my soul and to receive such a side-step of a response silenced me. I decided right then that, unless anyone flat-out told me that A was going to die, he would not die. He would be happy and just fine, thank you. (While it turns out that this is more or less the case, I was extremely angry to discover, by reading his medical records and asking more pointed questions of some of his doctors and therapists, now that I am in a more stable place myself, that very few people expected A to live to see his first birthday. The fact that no one, not a single person, prepared me for this is something I cannot forgive, even though it did not come to pass.)

This post is rambling. I have attempted to fix it numerous times. I simply can’t. The reality of having a child with complex medical needs in the NICU is overwhelming and, frankly, incomprehensible to live, and it appears that writing about it is the same.

The second piece of this all is the second baby. I was dealing with this and another newborn. At first, I could not distinguish things in my mind. That doctors seemed so fearful and pessimistic about A led me to feel that both my boys were at risk. No one ever called D a “feeder/grower”, no one ever said, “This little man will be just fine.” I was not well-versed enough in preemie-land to understand. Neither could eat, neither could maintain their temperatures, neither was awake for more than a few minutes at a time. I was as nervous making my post-pump midnight, 3, and 5 am calls to the NICU when asking about D as I was about A. Eventually it became clear to me that D was doing well and would be coming home soon. I did not realize how long of a road A had ahead of him (as their birth hospital, despite having a Level III NICU, could not do the imaging tests we needed, much less the surgeries). I’m glad of that. It allowed me to feel joy at D’s gains as well as A’s much smaller ones. I did feel a fundamental sense of wrongness when we took D home, leaving A there by himself…but I’d felt the same way upon my own discharge, leaving both my boys behind.

A was transferred the day after D came home. They’d kept him there as a kindness to us, but also because, really, nothing was so urgent that anyone would risk doing anything to such a small and fragile baby. He would have been doing the same things—trying to get bigger and stronger in order to face the upcoming challenges—at the children’s hospital, so there was no need to move him. But with one baby at home and one baby in a further (though still relatively close) NICU, life became even more complicated. D could not visit A. No baby can ever go back to the NICU (at least at our hospital) once they’ve left, because the risk of their “outside germs” infecting the delicate babies in the NICU is simply too great. I understand that. But it meant that, not only were my heart, body, and milk-containing breasts torn into two locations, I had to find babysitters. My husband needed to save his FML time for surgeries, scary times, and A’s homecoming. (We did not save nearly enough, but we did not know.) I had to leave D with my mother or grandmother, and A with his nurses. It was awful. It was exhausting. Pumping every 3 hours for A, who could not eat, and trying to establish breastfeeding with D (which I could not fully do until A came home), etc.

D came home when they were 14 days old. A came home on April Fool’s Day, after several false starts that made us unable to believe he was coming home until we were in the car. That was their 62nd day of life. 48 days apart. 48 days of driving from one place to another, always missing one baby, always feeling like I was failing both. I was so glad to close the door on that.

Of course, the other thing about a child like A is, that door never closes (until it is slammed shut for good, which is too horrifying to think about). I did not know it at the time, but ten days later, A would be back in intensive care. But it would be the PICU, then and again and again and again. Our NICU journey, at least, was behind us.

Share this...Share on FacebookTweet about this on TwitterShare on Google+Pin on PinterestShare on StumbleUponShare on TumblrShare on RedditDigg thisShare on LinkedInEmail this to someone

How I Learned that My Child Had Frontonasal Dysplasia

Posted on
Categories Congenital Anomaly, Difference, Medical, NICU, Prematurity, Special Needs, Theme WeekTags , , 7 Comments

The first indication I had that there was a problem beyond how premature my daughters were was a delivery nurse’s comment as the obstetrician removed Baby B from my womb: “There’s something wrong with her face!” Both my girls were whisked away to the NICU, although they did unstrap one wrist to I could stroke M’s hair for an instant while I was sewn back together.

I didn’t get to see my daughters until they were 36 hours old. They were in the NICU, which I wasn’t allowed to enter, thanks to a fever. At first, I was convinced that M hadn’t made it, despite my husband’s assertions to the contrary. I could see the fear in his eyes. It wasn’t until later that the fear was as much for my mental health as for our twins’ physical health.

In those first 36 hours, I was brought conflicting news. The babies were doing fine. They would be given my colostrum as soon as I produced some. No, they’d be on high-calorie formula only. They were on feeding tubes. Only J was on a feeding tube. M was at risk of starvation because they couldn’t insert the feeding tube nasally. She wouldn’t be allowed to starve; they could insert it orally. She had no nasal passages. She might have nasal passages. Of course they’d give the babies colostrum, mixed into their formula. The best news of the day came from my friend Kaylan. As my husband tried to explain to me what had gone on with M’s nose and droned on about blockages, Kaylan cut him off. “She had a really big booger,” she said. Her feeding tube was in place now that her nose had been cleared.

Twin B in the NICU, How I Learned that My Child Had Frontonasal Dysplasia, from hdydi.com
This was how I first saw my little girl.

I didn’t really know what to expect of the NICU, and I was more struck by how tiny both my little girls were, by how many wires and tubes draped their miniscule bodies, than by the difference in shape between M’s nose and J’s or how different my identical daughters looked. The girls wiggled and squirmed much as they had in my womb, but they cried too, almost silent kittenish meows. They were alive and I could hold them. I forgot all about the delivery nurse’s comment and concerns about M’s nose and just held my babies, one at a time. They were feeder growers. There was a little boy on hospice care in the next isolette to remind me how fortunate we were to have relatively healthy children.

Closeup in the NICU, How I Learned that My Child Had Frontonasal Dysplasia, from hdydi.com

It wasn’t long, though, before M’s face was at the forefront of our medical concerns. M’s nose was asymmetrical, large out of proportion with her face, flat and dimpled. It felt more like the cartilage of my upper ear than the hard bone of my own nose. It might be a glioma, they told us, a brain tumour, around which M’s face had formed. I knew better than to rush to the word “cancer” on hearing “tumour”, but that was where my mind went. We were scheduled for an MRI. Since a newborn couldn’t be expected to be still of her own accord, she would have to be sedated. At the same time, we were scheduled for an appointment with a geneticist to talk to us about what genetic tests would show. Facial anomalies frequently accompany chromosomal abnormalities of all sorts, from the relatively common Down Syndrome to a plethora of rare conditions.

I asked whether J should also undergo genetic testing, given that she was M’s identical twin. If there was a DNA-based issue, chances were huge that J had it too. My concerns were tabled until we had a diagnosis for M.

The geneticist saw us before we even left the NICU. It was strange to attend an appointment with a doctor for a person who couldn’t be present. Our NICU was part of what was then Austin’s Children’s Hospital, and the geneticist we saw was housed in the same building, but M still couldn’t leave the NICU to attend her own appointment.

The geneticist was incredibly kind. She could see how terrified we were. She was able to give us the good news that there was nothing obviously wrong with M from a genetic perspective, but we were no nearer a diagnosis. The only thing that was still on the table was glioma. We decided early not to include my family in the conversation; I knew we needed positive energy and we weren’t going to get that from them. Even a conversation with my ever-positive mother-in-law brought me to tears, tears I had so far withheld, as she told me all she had learned about St. Jude Children’s Research Hospital and its amazing work on pediatric cancer.

We had to wait for M’s MRI to know anything more about what was going on. Her breathing seemed unaffected, her pulse-ox consistently healthy.

M and J were out of the hospital and I had returned to work before our MRI appointment day came. In fact, M had done better in the NICU than J and was released to come home at 16 days old, not bad for a 33 week preemie. J joined us less than a week later.

On the day of the MRI, we had to withhold food from M. It broke my heart to pump her meal into a bottle instead of feeding my poor hungry crying baby. She was so tiny on the hospital bed they wheeled away from us through swinging doors. The waiting was awful, but eventually a nurse came out to get us. Only one parent would be allowed in the recovery room as she awoke. My husband and I looked at each other in horror, but he made the call. “You go,” he told me, “’cause she’ll want to nurse.”

She was asleep in the enormous bed when I went to her, an IV in her hand. She wiggled a little before opening her eyes groggily. The nurse gave me permission to hold her, and she hungrily rooted for my breast before giddily guzzling her next meal.

We were told to expect answers in a couple of weeks. On day 14, I had heard nothing. On day 15, I called the craniofacial specialist who had ordered the MRI. I’d met him at M’s bedside in the NICU, but I couldn’t remember which white-coated man he was. The receptionist who answered the phone didn’t know why I hadn’t received a call. I told her that I just wanted to know whether my baby had cancer or not. It had been months since we found out there was something wrong. She heard the urgency in my voice and put me on hold, returning to tell me that it wasn’t a tumour. Why they never called me with the results, I will never know. I guess it wasn’t urgent to them because she didn’t need immediate treatment. Well, it was urgent to us.

I made an appointment to talk to the craniofacial specialist. The wait was excruciating. There was an answer out there, but we didn’t have it yet.

Frontonasal dysplasia in one identical twin, from hdydi.comFinally, our appointment came, and with it the answer. M had frontonasal dysplasia. It was a condition in its own right and not indicative of any additional problems. In short, she had a facial cleft, not unlike a cleft palate, but higher in the face. We were told that corrective surgery was an option, but that M might not need it. We should watch her activity level and let them know if she seemed short of breath, which might necessitate surgery. Around age 7, kids might begin to tease her, so we might want to consider surgery for social and confidence reasons. They showed us photos of other kids with far more advanced frontonasal dysplasia. M’s was a minor case.

We had our diagnosis by the time the girls were 5 months old. M was perfect. So was J.

M is pretty and her special nose fits her face, frontonasal dysplasia and all.
Tell me she’s anything less than gorgeous. I dare you!
Photo Credit: Lifetouch

Today, at age 7, M has come to learn that her special nose is something that some people notice. Most people just look at her and see a vibrant, energetic, smart, beautiful chatterbox. Her frontonasal dysplasia is part of her story, but not a defining part.


Prematurity Awareness Week 2013: How Do You Do It?

World Prematurity Day November 17In the United States, 1 in 9 babies is born prematurely, 1 in 10 in Canada. Worldwide, over 15 million babies are born too soon each year. While not all multiples are born prematurely, a multiple birth increases the probability of an early delivery. Babies born prematurely, before 37 weeks gestation, are at a higher risk for health complications in infancy, some of which can have long-term effects. Full-term infants are not all free from their own health complications, of course.

In honor of November’s Prematurity Awareness Month, led by the March of Dimes, How Do You Do It? is focusing this week’s posts on The Moms’ experiences with premature deliveries, NICU stays, health complications, special needs, and how we’ve dealt with these complex issues.

Share this...Share on FacebookTweet about this on TwitterShare on Google+Pin on PinterestShare on StumbleUponShare on TumblrShare on RedditDigg thisShare on LinkedInEmail this to someone

Pride and Joy

Posted on
Categories Balance, Congenital Anomaly, Difference, Fraternal, Medical, Perspective, Special NeedsTags , , , 6 Comments

This is not the introductory post I had planned on writing. Then again, very few things in the past 15 months have gone according to plan, so, here we are.

We are attempting to reduce the number of bottles Mr. D drinks. He day-weaned months and months ago, lacking the patience to sit still at my breast. But he will carry a bottle with him all day, taking sips here and there, if we let him. Dire warnings of ruined mouth and teeth from our pediatrician have us taking action: he only gets bottles at naps and bedtime (and in cases of emergency).

“Ba-ba?” he asks.

“No, sweetheart, you only get bottles when you go night-night. Would you like a cup of water?”

“Ba-ba!”

“Only at night time.”

“Nigh-nigh!” He takes off, down the hall, towards our room. (Our as in mine and his father’s…but yes, we co-sleep, like the push-over, sleep-deprived parents we are.)

“Mister, it’s only 5:30, there’s no way you’re tired. Why don’t you come play with your house?”

“Nigh-nigh!!”

I follow him. He is climbing onto the bed. He lays down, rolls around, puts his bum in the air, then raises his head, looks at me, and triumphantly declares:

“Nigh-nigh!” (Long pause…) “Ba-ba?”

I scoop my deceitful, manipulative little man up into my arms. Trying to pull one over on me, at such a tender age (and with such a limited vocabulary)! How could this little creature, who didn’t even exist two years ago, have so much knowledge of the world?

And I think: could ever a mother be more proud of her son?

I attempt to relay this little story to my husband, by text-message. Phone reception in the Pediatric Intensive Care Unit at the children’s hospital is terrible, pretty much non-existent. But this is far from our first PICU stay, and we have learned that iPhones can somehow get text messages (even from non-smart-phones!) over the internet, and there is wireless access through-out the hospital. My husband is there with Mr. A, though he and I will soon be trading places.

A simple cold left both boys with runny noses, and then Mr. D got better and Mr. A did not. Our pediatrician suspected a sinus infection (not his first), but when the ten-day course of antibiotics was done, he was worse. The pediatrician-on-call for the day (because of course it was Saturday), suspected his recently repaired palate was infected. I filled another prescription, gave him the first dose, and put him down for his nap. He woke up, vomited blood. I pulled his remaining stomach contains back into a syringe via his G-tube: they were bloody. I put them in a small Tupperware container, changed his diaper (poop looked weird, so I bagged that, too), and took him (and his ‘samples’) to the ER, leaving Mr. D with my mother.

I watched them working on my son (it never gets any easier). They wanted to intubate him; I was able to buy a reprieve and repeat blood-gas, which showed that to be unnecessary. I spouted off his medical history better than I ever could my own: dates of hospitalizations, surgeries, tube placements; pertinent findings from swallow studies, sleep studies, upper- and lower-GI studies, MRIs, echoes, everything. And the underlying root of it all: a deletion on the long arm of Chromosome 2.

“Which specific deletion?” asked the attending, and I told her. She nodded sagely, losing my respect. She’d never heard of his deletion, I knew. Which is fine, but be honest with me, as my son’s life is in your hands. She would leave the room and attempt to Google Mr. A’s syndrome, and not find out much. Fewer than 25 cases of similar (and no exact) deletions are known to exist. And, to be perfectly frank, there seems to be not much to say about it except: “This is not good, and will cause lifelong problems. Here is a list of some but not all, of which he may have many.”

We were told awful things: lists of he-will-nevers and he-will-always-needs and the impression that very few people had any faith in Mr. A. But we had held him (after his fourth day of life, once he was stable enough), sang to him, loved him. He was and always will be our first-born, heir to the kingdom, recipient of faith, hope, and love.

It eventually became clear to me—first from suspicions, then from out-right confirmation—that few, if any, had expected him to make it through his first year of life. (That no one bothered to prepare us for this is another post.)

But he has indeed survived. He has blown previous research right out of the water. He is writing his own story, and I get to watch.

This stay was short: 2 nights in the PICU and one on the floor. I bring him home in fine spirits. He wants to stand. I take his hands and help him. He lifts one foot, then the other, walking across the living room with my assistance. A week ago, he would only do this with much prodding and many tears, and now here he is, trying to chase the cat.

And I think: could ever a mother be more proud of her son?

Share this...Share on FacebookTweet about this on TwitterShare on Google+Pin on PinterestShare on StumbleUponShare on TumblrShare on RedditDigg thisShare on LinkedInEmail this to someone

What Makes Her Special

Posted on
Categories Attitude, Congenital Anomaly, Difference, From the Mouths of Multiples, Identical, Medical, Other people, Parenting Twins, Perspective, School, School-Age, Special NeedsTags , , , , , 16 Comments

When I stopped by my daughters’ school to drop off birthday cupcakes (for J’s class) and doughnuts (for M’s), the principal spotted me and asked me into her office. She must have seen the look on my face–or perhaps she’s merely accustomed to people’s reactions to being called into the principal’s office–and set me at ease, saying, “I need to brag on M.”

“Did M tell you what happened last week?” she asked after we were seated.

“I don’t think so.” M told me a whole bunch of things that happened last week, but none of her stories featured anything principal-worthy.

The principal told me that one of her 4th graders, normally a sweet boy, has been acting up recently. In one incident, he sat next to M at lunch and asked her what happened to her face. M began to cry.

At this point in listening to the story, I began to cry too, which made the principal join in. It was a major tearfest.

Let me give you a little background.

These are my daughters. I don’t think it’s merely maternal pride that makes me think they’re both awfully pretty.

Twin sisters
J is on the left, in green. M is wearing blue.

They are identical twins, but by developmental happenstance, M was born with a facial cleft (think cleft palate, but higher in her face and not affecting her palate), while J was not. M has been seeing a craniofacial specialist since birth. The appointments were every 3 months at first, then slowed to being yearly, and are now every two years. She hasn’t needed surgery, and there’s nothing wrong with the function of her nose. It just doesn’t have a defined tip. The cleft also causes her eyes to be wide set and has given her a widow’s peak hairline. All of it combines, in my mind, to give her an adorable anime/china doll look.

M’s doctor warned us that, even if there was no functional issue with her nose, kids get mean about appearance around age 7, and we could always opt to consider surgery if it was needed for M to have a healthy self-image. Honestly, I haven’t given surgery much thought. M is a well-adjusted kid. It’s not like M’s unusual look has never come up before. When kids have asked why she has a “funny nose,” I’ve responded by saying it’s so that we could tell her apart from her sister. When I overheard a little girl telling M that her nose was “too small,” I responded by focusing on its purpose. “Does it breathe?” Yes. “Does it smell?” Yes. “So is it too small to do its job?” No.

I’ve told M that she has the world’s most kissable nose, and she permits me 5 kisses exactly at bedtime on her “kissy nose.” A while ago, J told someone that a good way to tell her and M apart was her pointy nose, in contrast to M’s flat one. I considered freaking out and then realized that she wasn’t attaching a value judgment to one look over the other. Part of me worried, though, that having an identical twin will eventually add insult to injury. There will always be J there to show M what she would have looked like without the cleft. It’s never come up, though. I hope it never does. It helps that, while my girls value the twin relationship, they also relish being individuals and having some differences from one another.

Let’s return to the principal’s office, shall we? As you may recall, there was crying.

The 4th grader had been mean, and M had cried. It took a while for him to admit that he’d acted wrongly and with intent to hurt, so by the time he was ready to deliver a real apology, M was back in her 2nd grade class. She was called out into the hallway, and he apologized.

“It’s okay,” she told him. “You already said sorry, and I forgave you. People say that stuff to me all the time. It’s fine.”

Just to keep the tearfest going, the little boy began to cry. He was ashamed.

“It’s not fine,” the principal told her. “You’re a beautiful girl, and it’s not okay that people say mean things.”

“But I forgive them,” said my amazing, extraordinary child. “I love this school!” And she skipped back to class.

Tonight, at dinner, J was distracted by her dessert, so I took the opportunity to talk to M about this whole thing. “I heard you were extremely forgiving at school. [Your principal] was pretty proud of you.”

M beamed.

“Wanna tell me about it?”

She told me essentially the same story I’d heard in the office. I reiterated what the principal had said, that she didn’t need to just accept people’s cruel words.

“But Mommy, it’s okay. They can say what they want. It’s my job to forgive. I just don’t get it. I don’t understand why they would want to be mean about what makes me special. My kissy nose makes me special. What’s wrong about that? I don’t know why it’s like this, but it makes me special.”

There was nothing wrong with that, I told her, and by a major act of self control, kept the tears in this time. Would she like to know why her nose was special? She did want to know, so I explained in very simple, objective terms the nature of her cleft. I also pointed out that it was responsible for her widow’s peak, which she calls her “heart hair,” since it helps give her a heart-shaped face.

“I love my heart hair!” she said. “That is part of what makes me special too.”

She went on to tell me that her teacher had told her about being teased as a child for not speaking good English. Her sister’s teacher told her about being teased for having a big nose. I added my own story. I told her my tale of being teased for my eczema. I told her that I’d never realized I was pretty until I was 18.

She gasped. “But Mommy, you’re beautiful.”

“So are you, baby girl. I’m so glad you already know it.”

“Me too. I’ve known ever since Nicole told me I was beautiful when I was very small. That’s why she’s such a good friend,” she said.

There was nothing more to say.

Share this...Share on FacebookTweet about this on TwitterShare on Google+Pin on PinterestShare on StumbleUponShare on TumblrShare on RedditDigg thisShare on LinkedInEmail this to someone