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Finn: A Visit To the Ophthalmologist

I mentioned not long ago that Finn’s left eye has been turning inward sometimes.  This has been a fairly new development; I’ve only started noticing it in the last month or two.  At his regular 4-year well check with our pediatrician, I was told that it’s an optical illusion – that his eye is not actually turning in.  I called bullshit – this isn’t my imagination, nor is it an illusion.  Not only that, but shortly after that appointment, his right eye also started turning in occasionally.

This morning we went to see a pediatric ophthalmologist – the same one he’s seen before, although it’s been quite a while since his last visit.

It was a nightmare.  Screaming 4-year old, screaming infant.  At one point, I was holding both Finn and Scarlett on my lap in the exam chair.  Finn has apparently developed quite an aversion to big, scary chairs, weird medical equipment, and lights being shined in his eyes.  He screamed and cried and thrashed through the entire examination, even kicking the doctor.  I finally put Scarlett back in her stroller where she screamed her head off, and sat with Finn in the exam chair, holding him in a headlock/bear hug with my legs pinning his legs, while he continued to howl and yell and cry.  And the truth?  What kept running through my head was, “This is the picture of Down syndrome, of developmental disability, that everyone is afraid of: the screaming, thrashing child who can’t verbalize his feelings, whose face is a mottled, snotty, drooly mess.”  I just wanted to cry.  But that would have made three of us crying, and although the doctor was extremely sweet and patient, I fear that would have put even her over the edge.

As it turns out, Finn does have strabismus, which is not uncommon in the general population of children, but is especially common in children with Down syndrome.  I have to admit that I take a perverse satisfaction in this confirmation that Finn’s intermittently misaligned peepers is neither illusion nor my imagination.  It’s likely that he will need glasses, but seriously, I am about 110% sure that there is no way in hell he’d keep glasses on at this point, so the doctor wants to see him again in six months, and in the meantime, we’re supposed to try to get him used to glasses by getting him some little-kid sunglasses and encouraging him to wear those.

Sigh.

 

Preschool: Ready, Set, Go!

Today was the long-awaited, much-anticipated first day of preschool for Finn.  In a nutshell, it went terrifically well.

I’ve been a little jittery about it, but I managed to not drive myself sleepless over it last night.  This morning while Finn was eating his breakfast, he pointed to this wall-hanging we have in the kitchen and said “tree.”

 

Well, buh-low me down, as Popeye would say.  First of all, I’ve never heard him say “tree” before (did I mention – no, I didn’t – that he started back up in speech therapy yesterday after taking the summer off, and his speech therapist commented on how blown away she was by how much his vocabulary had grown over summer break?).  Secondly, I had no idea that he could identify something from a rendering such as this – not even a photograph, for goodness sake!  Michael then showed him another picture that had a tree in it and asked Finn what it was, and he said, “tree.”  Like, “Duh, Daddy.”

A little later in the morning when I was getting him dressed, he got his backpack and said, “backpack.”  I didn’t know he knew that word, either!  I swear, this kid never stops surprising me.

I figured these demonstrations boded (bode?) well for a first day of preschool.  So off we went.

On the short (very short) drive over, I chanted in my head, “I’m not going to cry, I’m not going to cry, I’m not going to cry . . .” as I sniffled and hiccupped my way there.  Yes, I’ve been through this before – many times.  But leaving any of them at school for the very first time never fails to do a number on me.

Finn was totally fine with it.

 

Here’s part of the outdoor area of the preschool.  It’s amazing – not your typical playground, no.  It’s all gardens that the kids help tend, fountains, a treehouse, and more.  Very sensory rich.  I love it.

 

 

When we got to the classroom, Finn scampered off.  I really don’t recall him ever having any separation anxiety, so I didn’t expect that he would have any trouble saying goodbye to me.  He made himself right at home, and I took my leave quickly.

 

When I got home, Scarlett was asleep in her car seat, so I tiptoed her to the bedroom and closed the door.  And the house felt deathly quiet.  I honestly cannot remember the last time I experienced such utter quiet.  And unlike last week when the older kids all went back to school and I basked in the relative quiet, this time was different.  I felt lonely and a little lost.  I will have to get used to this, and make good use of the two mornings a week Finn will be at school.  And I will – I have goals!  Cleaning and organizing, writing, putting together photo books – all kinds of things I’ve been putting off forever and a day.

Three and a half hours later, it was time to pick Finn up.  When I got there, he had paint all over his shirt – a sure sign of a fun, successful day.  His teacher said he did just fine, only got upset at one point during song time when they were singing “John Jacob” really loudly, and she couldn’t figure out if he was bothered by the volume or by having to sit down with everyone.  I’m guessing it was the latter since she said he wasn’t covering his ears.  She said he got along great with the other kids, and kissed everyone night-night when they went down for naps (Finn doesn’t nap, so I pick him up when the other kids go down for naps).

A good day.

 

Birth Order

Alternatively titled, “Can a Boy With An Intellectual Disability Be a Big Brother?”

and/or “How Does a Late, Surprise Baby Fit Into the Fam?”

Those are two questions I think about a lot.

As it is right now, Finn is fairly smitten with Scarlett.  Not overly so (like the other kids, who can’t seem to keep their hands off her, no matter how many times I say, “Leave the baby alone!”).  While I was pregnant, I was worried about jealousy on his part.  Very worried.  There didn’t seem to be any way I could really prepare him for the coming arrival and his position as baby of the family therefore being usurped.  I tried to tell him many times over the months that Mommy had a baby in her belly, but I’m pretty sure all he got from it was that “baby” was another word for “belly.”  Thankfully, now that the baby is here, he does seem to get that “baby” and “belly” are two different things – and hey!  Baby has a belly, too!  Neato!

Anyway, I do think there is some jealousy on his part, or at least a sense of adjusting to this new family member and what it means for him.  At first, he seemed to actually be afraid of her – and who could blame him?  Here’s this tiny, funny looking creature who makes A LOT of VERY LOUD noise.  What the hell?  What is it and when will it go away?  (Okay, I’m putting words in his mouth, but I doubt that’s very far off from what he was thinking.)  Then he seemed angry, and he did take it out on Scarlett a few times, by smacking her and raking his fingernails very hard across her head.  That only lasted a week or two, thank goodness.

Now, he likes her just fine.  I think he’s still not too happy about getting less attention, but now he takes it out on me instead of on the baby.  He seems to get the most pissed off when I’m closed up in my room, nursing Scarlett and trying to get her to sleep.  He’ll stand right outside my door and yell at the top of his lungs, all angry like.  Or he’ll lie on the floor and kick the door over and over.  Or he’ll yell and kick the door.  If I’m nursing the baby and not trying to put her to sleep, I’ll let him climb up on me, too.  I know he still needs me, I know he still needs to be cuddled.  As for Scarlett, he likes to pat her (gently) and kiss her (repeatedly – one kiss is never enough), and he likes to tell me when she’s crying.  “Mommy, Baby Scarlett,” he tells me (“Scarlett” still sounds something like “Garlic” coming from him).  But he can sort of take her or leave her.  He doesn’t go looking for her, and he doesn’t seem to miss her when she’s tucked away napping or whatnot.  Out of sight, out of mind?  Maybe.

I’m sure Finn’s and Scarlett’s relationship will evolve over time.  I just wonder how it will evolve.  How will it look in, say, a year?  Five years?  Ten?  When they’re adults?  Will Finn be the protective older brother?  Will he teach her things?  Will he scold her?  Dote on her?

Or will it be the other way around?  Because, I gotta be honest: she’s going to pass him up – developmentally, intellectually – at some point.  I’m okay with that, it’s just the way it is.  Okay, yeah, there’s a little sadness there, a little worry, I confess.  It doesn’t eat at me, but I do wonder.

Regardless, I do know that Finn will enrich Scarlett’s life – and she his – just like he has enriched all his other siblings’ lives, and they his.  That’s something I don’t have doubts about.

And Miss Scarlett.  I wonder about her place in the family, too.  Sometimes it makes me sad that she’s probably too far behind the other three girls to ever be a full-fledged member of their little club.  Annabelle, Daisy, and Lilah – they’re tight, those three (Annabelle and Lilah, especially – which is interesting considering that Annabelle and Daisy are the twins).  They’re two years apart in age, two grades apart in school, they share a room, they share clothes, they share extracurricular activities – they’re pretty much a unit.  Scarlett is about five and half years younger than Lilah, the youngest of the threesome.  There’s no room to put her in their bedroom, so when she moves out of our bedroom in a few months, she’ll share a room with Finn – a boy.  A boy who is four years older than her.  A boy who is four years older than her and who has Down syndrome.  Huh.

Who will be her cohort?  Her compadre?  Because all my kids seem to have special alliances with one or another of each other.  Who will Scarlett partner up with?  Who knows – maybe it’ll be Finn.

I just wonder, worry, if she’ll go through life feeling like an appendage, an after thought.  An only child in some weird way.

I probably worry too much, right?

Feelin’ Funky

Okay, so I’ll cop to it: I guess I’m in a funk.  So many things on my mind lately . . .

Finn -

Remember how I mentioned that his left eye has been turning in?  Well, now both of them are.  It’s random and intermittent.  We have an appointment with a pediatric ophthalmologist in a couple weeks, so that’s good.  Just a little worried about it.

Also, he’s slated to start that awesome preschool program next week.  I really think it’s going to be a good fit, and I’m so thankful that they’re excited to have him.  We visited again a week or so ago, and met his teacher and talked about some of his specific issues (which they pretty much see as non-issues) just for my peace of mind, but I’m still worried/stressed about it.  How much will his language delays hinder him?  What if they can’t understand him?  What if he won’t follow directions?  Morbidly, what if something bad happens to him?  He won’t even be able to tell me.  It’s not like I can even have the talk with him about strangers and boundaries – cognitively, he’s just not there yet.  Also how will he do with the whole potty thing?  They know he’s not potty trained, but most of the kids are, and they encourage all of them – even those in pull-ups – to use the potty at regular intervals.  I have no idea how he’s going to do.  I will say that I’ve had ZERO luck at home in this area.  It’s like he just doesn’t make the connection.  He’ll sit on the potty, but he never, ever does anything on it.  It’s discouraging.  But maybe seeing other kids do it will be helpful, right?  Isn’t that the point of his having typical peer models?

Annabelle & Daisy -

With the first week of school behind us, we’ve gotten off to a very rocky start with regard to third grade homework.  Let me back up and say that they have both been placed in a GATE class.  I’m totally second-guessing this placement now.  There is no doubt that they’re both very bright, but I wonder about their maturity.  I’ll be honest – emotionally, they both seem more like second-graders to me than third graders.  Which is now making me wonder if we made a big mistake starting them in kindergarten when they hadn’t quite turned 5 yet instead of waiting a year (which we’ve also done with Lilah – she’s now in first grade and won’t turn 6 until early October).  I’m not going to put them back a grade, but I do wonder if they’re just not mature and disciplined enough to handle third grade GATE.  Homework has been a nightmare this week.  And it’s true that these two have always been particularly awful with regard to homework, but at this point, it’s not just whining that they don’t want to do homework, it’s whining and crying and wanting (needing?) help with every single homework problem.  And listen: I’m not a teacher!  I don’t have the patience for it.  And by third grade, it seems to me that they should be able to do their homework mostly independently – I know Kevin and Joey both were by this point (and they were both in GATE, as well).  So, I can’t figure out if they’re playing me, or if they truly are struggling with the concepts.  If they’re struggling this much with the concepts, that seems like a problem.  And if they’re playing me, well, that’s a problem, too, and I think it’s telling about their emotional ability to handle this kind of work.

So, I think I need to have a meeting with their teacher and try to nail down what’s going on and where we should go from here.  Keep them where they are and accept that third grade in general is quite a leap from second grade, and things are going to be trying for a while?  Move them to a regular third-grade class?  Throttle them both?  Move to a commune?  What?

Also, Annabelle’s hair.  She managed to grow out that bald spot on the back of her head over the summer, only to pull a brand new one on the side of her head right before school was due to start back up.  That girl is breaking my heart.  She came to me yesterday and said, “Mommy, I know what to say when people ask me about the bald spot.  I just tell them it’s a secret.”  I didn’t know whether to laugh or cry.  Part of me admires her moxie, and part of me feels like, “Great!  Now there’s no motivation for her to stop pulling her hair out.”

Cancer -

It seems like it’s never far away, cancer.  The sister of a girl I used to work with died yesterday from breast cancer.  My former co-worker and I were pretty good friends way back when.  We lost touch for a while and reconnected on Facebook a couple years ago.  I had met her sister, but didn’t know her really.  Anyway, she was diagnosed with stage 3 breast cancer at the age of 32 just three years ago.  She had two small children.  Apparently it was the really bad genetic kind, and both of her sisters (my friend included) had preventative mastectomies and hysterectomies because of the genetic link.  And then they watched their younger sister slowly die.  I haven’t really followed their journey too closely – I just signed onto FB yesterday and realized that my friend’s sister had died, and it left me absolutely stunned.  I’ve been crying on and off about it since last night.  I picture my own girls facing something like that as adults, and I can hardly handle it.  I keep thinking about that woman’s children and sisters and parents.  How will they go on – any of them?  I sifted through my friend’s Facebook photos, trying to piece it all together – was there a point where  it showed in the pictures that her sister wasn’t going to make it?  I needed to try to see it.

This isn’t even my friend, so I don’t even feel like I have the right to internalize this so, and let it affect me so deeply.  But it’s a harsh reminder that cancer fucks people at random.  It steals people who are loved, who are needed.  We are lucky – Michael fought his cancer and so far, he’s winning.  We didn’t lose him.  But sometimes it feels like the cancer returning is inevitable, and it stirs an almost paralyzing fear in me.

Life -

It’s a lot sometimes.

Two Months and Four Years

Today Scarlett is two months old.  That went fast!

Aside from being Grumpy Girl a whole lot of the time, she’s pretty much the most beautiful baby to ever grace the planet, don’t you think?

 

 

(I say that with the greatest humility, of course.)

 

Check out those blue, blue peepers.  If she’s anything like her mama and both of her originally blue eyed brothers, though, they’ll turn green within a few years.

 

Trivia: red is my favorite color.  That’s partly why we named her Scarlett.  If Finn had been a girl, he would have been named Ruby.

 

 

Completely unenhanced: no Photoshop, spray tan, Botox, collagen, or cheek implants.

 

 

 

 

She had her two-month checkup this morning, and all’s well.  She’s gained almost two pounds and two inches since she was born – all on mama’s milk.

Finn also had his four-year checkup today.

 

He weighs a whopping 29 pounds now – which is small, yes, but actually on par with all my other kids at the same age.  I make ‘em little.

The one issue I wanted to discuss with our pediatrician was the fact that lately, Finn’s left eye has been turning in noticeably.  It’s intermittent, not constant, and it’s not necessarily when he’s tired – it happens at all times throughout the day.

Well, our pediatrician actually insisted that it’s only an illusion caused by the wide nasal bridge associated with Down syndrome!  Even when Finn’s eye was totally turning in right there in the exam room, the doc insisted it really wasn’t, it just looked like it was.  Seriously, I like our doctor a lot, and we’ve been with him for a long time because I like him so much, but . . . what the FUCK?  If it were just an illusion caused by the wide nasal bridge, then why is it only a recent development?  And why is it just the one eye?  Come on.  And, we live with the kid – we see him all the time, and Michael and I have both noticed his eye doing this wonky thing lately.  The doctor is going to spend twenty minutes with him and decide we’re just imagining it?

Anyway, he’s going to refer Finn to a pediatric ophthalmologist anyway.  Pfft.

Also, he got his neck x-ray yesterday to screen for atlantoaxial instability (AAI).  No word yet.

Other than that, everything is good.

 

Mwah!

The Many Faces of Disability and Difference

Over the last four years, I’ve become very entrenched in the Down syndrome community – at least online.  Having a child with Down syndrome will do that to you – make you want to seek out other parents who are dealing with similar issues, experiencing similar feelings, fighting a similar fight to change how the world views their children and people like them, to demand respect, compassion, and appropriate opportunities for their children.  And when you have a child with Down syndrome, it’s easy to feel, on some unconscious level, that Down syndrome is THE disability that needs the most advocating, the most focus, the most energy.  Down syndrome is our reality; all other realities, I think, slip past our radar to a large degree.

This isn’t a judgment, just an observation – something I’ve become more aware of lately.

I recently began to become acquainted with a neighbor who has a teenage daughter with Rett syndrome.  I also have a friend who has a daughter with Wolf-Hirschhorn syndrome.  I know another woman who has a child with Williams syndrome.  When my twins were in preschool, one of the children in their class was a little girl with Prader-Willi syndrome.  I know someone who lost a baby to Edwards syndrome.  (I’m not making this up – I really have crossed paths with all these people.  That’s a lotta syndromes.)  Then there are all the people I know who have children with autism.  Michael and I have adult friends who are deaf.

There are A LOT of disabilities out there.  Although it’s easy to feel as though Down syndrome deserves the most focus, the most funding for research and services, the most advocacy (not that I think any of us think that on a conscious level), it’s really humbling to know that there are millions and millions of other parents out there with kids with all kinds of other issues – and you know what?  They’re all fighting the same fight we parents of kids with Ds are fighting.  We all want our kids to grow up in a world that treats them with dignity and compassion, we all want the best opportunities and the best medical treatment for our kids, we all want more funding for research for our kids’ particular conditions, we all want to do away with stereotypes, we all often feel bewildered by it all, and ultimately feel changed by having our children and their disabilities.  As big as the Down syndrome blogging community is, I bet there are blogging and other online  communities just as passionate and just as active among families touched by Rett syndrome, autism, deafness, and the like.  And if you go to any of the national websites for any of those syndromes or disorders, you will find many similarities to what you see on the national Down syndrome sites: information for new parents, photos of children with the disorder, lists of resources, information about conventions, and so forth.

I’m not really sure what I’m getting at.  Except to say that it’s a big, wide world out there, and none of us are alone.

Blog Hop – The Influence of Disability Within My World: What It’s Like

A little over three years ago, my sixth baby was born into loving hands, a planned home birth.  I had, of course, spent the previous nine months imagining what this newest member of our family was going to be like, and dreaming the dreams for him that mothers tend to dream for their babies.  Within the first day after his birth, it became clear that something was wrong, and after a frantic drive to the ER, our tiny newborn was admitted to the NICU where he would undergo major surgery at a day and a half old to correct the intestinal atresia he was born with.  It was while Finn was in the NICU that we learned that he has Down syndrome.

Suddenly it felt as if all the dreams I had dreamed for him were shattered.  I was afraid and angry – what did this mean?  What would it mean for our family?  What did I do to deserve this?  How bad was it going to be?  I was overcome by a grief so deep, it shook me to my core.  There wasn’t a moment I didn’t love my new baby, and I found myself feeling a fierce protectiveness over him – but I felt lost and completely ill-equipped to be one of those mothers – a mother of a child with special needs.  I was just a regular person, often frazzled and short on patience with my “typical” kids – certainly not thespecial kind of parent that everyone was suddenly assuring me I must be to have been given this special child.

I’ve traveled quite a long way since those early months of grief and fear and sorrow.  Finn has grown into a mischievous toddler who continues to surprise me all the time.  I’ve watched my other kids grow around Finn into sensitive, compassionate children who are accepting of people with all kinds of differences, from all walks of life.

As for me, I’ve made my peace with my son having Down syndrome, with his beingdifferent. I adore every inch of him, his body, his heart, and his mind, and I wouldn’t change him if I could.

It’s changed me, having Finn. Although I am not a believer in some grand, divine plan, I do believe that being Finn’s mother has enlightened me in ways I never really thought about before.  There has been a great deal of introspection, reflection, and reevaluation of what it is I value. What constitutes a happy, full life? Are happiness and success naturally borne out of intelligence and ability to achieve? What are the criteria for a life worth living?

I have a sense of appreciation and perspective that I never had before. I am able to see and accept my fellow human beings with a more open heart and a broader mind; it’s made my heart more tender towards those who are different, and harder towards those who are cruel or callous or rejecting of those who are different. It’s made me more aware that we all have our trials, and that I and my family are incredibly fortunate and have a trillion things to be grateful for, Finn being one of those.

Sometimes the fear is still there, but I experience moments of fear concerning each of my children when I try to guess at what the future might hold.  Life doesn’t offer guarantees to anyone.  I don’t know what Finn will be capable of, but I have very high hopes for him.  Those dreams I had for him that were shattered? They weren’t really shattered at all. It just took me a while to figure out that his life is not about my dreams, it’s about his dreams, and only he can decide what those dreams are. Only he will be able to show me how his life is going to play out.

What I want people to know most is that this is not a consolation prize. This is not our family just making the best of a sad situation. We do not exist under a cloud of sorrow, and we do not dwell on the fact that our son has Down syndrome. Finn just is who he is, and we’re pretty much like any other family. This is just life; it’s rich and full, and it’s pretty great.

- Reposted from October 2011

 

To see what other bloggers have to say about this topic, click here.

Four

 The Birth of Finnian Hendrix

July 7, 2008, 1:29 a.m.
6 lbs.; 19 inches
After a fairly uneventful pregnancy, my water broke at about 12:35 a.m. on Sunday, July 6. The only unusual aspect of my pregnancy was that I had started measuring ahead for dates in the third trimester; by mid-third trimester I was measuring about 6 weeks ahead and Sue, my midwife, concluded it was excess amniotic fluid, or more clinically, polyhydramnios. I was huge, and couldn’t completely shake the suspicion that I was actually carrying twins, despite have had two ultrasounds that showed only one baby. Although polyhydramnios can be an indication of a fetal anomaly, neither Sue nor we were especially concerned about that possibility given the fact that we had had a high level ultrasound at 20 weeks that did not reveal any major anomalies. The biggest concern was the risk of a cord prolapse in the event my water broke and the baby was not yet engaged.

So, again, my water broke at about 12:35 a.m. on July 6. I was 38 weeks, 2 days pregnant. I was asleep in bed when it happened – I had only been asleep for about an hour, and that’s the only sleep I would get that night – and it woke me up and honestly, it scared me and I started crying. I felt the “pop” and then a big gush, and my side of the bed was soaked. Michael woke up and asked me what was wrong because I was crying – he thought I was having a bad dream – and I told him my water had broken. He called Sue who instructed me to check for cord, which I did, and didn’t find any. She told me to get a towel and try to go back to sleep and that my contractions would likely start in earnest within a few hours. I tried to go back to sleep but couldn’t. I kept having sporadic contractions – more intense than the Braxton Hicks contractions I had been experiencing for months, but they weren’t falling into any pattern.

Sue came over later in the morning when everyone was up and about, and she listened to the baby’s heartbeat, checked my bp, etc., and everything looked just great. She checked my cervix and said I was dilated to 3 cm. I continued to have sporadic contractions and was beginning to feel a little discouraged because I had expected things to pick up by then. By late morning Sue decided to go home and told us to call her when my contractions picked up and I could no longer walk and talk through them. We had Alycia, our babysitter, come over and stay with the kids, and Michael and I went out to lunch and then walked around the mall for about an hour. The contractions seemed to be picking up somewhat by then, definitely more painful, but I was exhausted from not having slept more than an hour the night before, so we went home and I was able to sleep for a couple of hours.

The evening is a blur. I really don’t remember much, except that we got the kids to bed and then I was in the bedroom sitting on the birth ball watching an I Love Lucyrerun and eating Ben & Jerry’s ice cream, when suddenly the contractions got significantly more painful and closer together. I told Michael to please call Sue and fill the birth pool. Sue headed right over and arrived around 10 p.m. She checked me and said I was significantly more dilated (I don’t remember the number), that she felt a bulging bag of water, and that the baby’s head was still floating and not engaged. Apparently what I had experienced the night before was a high break, or a break higher up in the amniotic sac. The excess fluid seemed to be preventing the baby from settling into my pelvis, so we decided to go ahead and have Sue break my forewaters. She had a tough time breaking it, as the sac was pretty tough. When she did, the amount of fluid that came out was unbelievable. Before all was said and done, I would lose 6 lbs. during labor just in amniotic fluid.

I was not watching the clock at all during this time, so I have no idea of a timeline. At some point the contractions started coming hard and fast, and I got into the birth pool. It was as if the animal part of me took over. I instinctively got on my knees in the water and leaned over the side of the pool – not a position I had ever used during labor or birthing before, but it just seemed like the right position this time. I was trying so hard to relax my body during the contractions, but they were so painful and I was tensing up and moaning and swinging my head back and forth saying, “Noooo, noooo, nooooo!” What a sight it must have been. I knew I had hit transition when I began to shake uncontrollably. Sue checked me and said I just had a lip of cervix left. The contractions were so intense and painful by that time that I was pretty scared of the prospect of pushing during a contraction, and I asked if it was okay to push between contractions instead. Sue said I wasn’t ready to push yet. Within a minute or two of her saying that, I literally felt the baby descend down my pelvis – I can’t even explain the sensation . . . it was almost like this thunk in my pelvis and then the burning of him crowning. All the memories of pushing Lilah out came back to me and I started yelling and screaming just like I did with her. I didn’t want to push, but my body took over and the pushing was beyond my control. I was still on my knees in the water, and as I pushed, I was yelling, “NOOOO! IT HURTS, IT HURTS!!” I don’t know how long I pushed, but it wasn’t more than a few minutes and then his head was out, and then his shoulders, and then . . . he was stuck. I was close to panic by then – the sensation of having him half in and half out was almost more than I could bear and I started yelling “GET HIM OUT OF ME, GET HIM OUT!!” Sue told me to give one more good push, and finally he slid out . . . and the relief was immediate.

His cord was so short that we couldn’t even pull him up to my chest. I held him on my belly, and he was so calm and peaceful, it was almost surreal. He gave a couple of coughs, but never really cried, he just looked around. Sue clamped his cord and had Michael cut it pretty quickly because it was so short, and then I was able to lift him up onto my chest. He was covered in vernix, probably because he was a little early, and we were shocked to see this full head of platinum blond hair, and how tiny he was. With how big I got, I was expecting a much bigger baby, but he only weighed 6 lbs.

I had hemmorhaged after Lilah was born, and we expected that I would this time as well, especially because my uterus had been hyper-distended because of the excess fluid. We kept waiting for the blood to start flowing out of me, but it never did. After a few minutes, Sue had me stand up in the pool and try and push the placenta out, but I was so weak I could barely stand, so she had me lie down on the bed. The cramping I was having was horrendous – pretty much full blown contractions, and finally I felt the placenta move down through my pelvis – I actually could feel it in my hips, it was strange – and I pushed it out.

Finnian was still very calm and peaceful. He was spitting up some clear fluid with white floaties in it, and we figured he had swallowed amnio fluid in utero. There were lots of white floaties in the birth pool – vernix. So none of that seemed unusual. I nursed him for a while and then Sue did an initial newborn exam, wrapped him up and put him in bed with me and I dozed while Sue and Michael emptied the pool and cleaned up. Finn was born at 1:29 a.m. and I think Sue finally left at about 4:00 a.m. and then Michael came to bed and we slept for a couple of hours before the kids got up. The kids had slept through the entire birth, even with all of my screaming and yelling. Michael did wake Kevin up shortly after the baby was born so he could see him.

It was a hard birth, and I can’t even really explain why. It went smoothly, no complications, but it really kicked my ass. I remember thinking during pushing “I AM NEVER EVER DOING THIS AGAIN!” and “What the hell made me want to do this again after Lilah?!” I was so weak afterwards it almost scared me. I couldn’t walk to the bathroom without being held up, and I felt light headed, short of breath, and so sick to my stomach that I came close to vomiting a couple of times. My belly was so sore I couldn’t even stand up straight. I felt that way after the twins were born, and at the time I assumed it was because of the mag-sulph I was on for pre-e, but now I wonder. Sue thinks that all that excess fluid and the hyper-distended uterus just really traumatized my body.

I went into this birth hoping I would handle it better than I did Lilah’s – that is, hoping I could deal with the pushing a little better and not scream my way through it. I didn’t, but I’m okay with it. I feel neither defeated nor empowered by it at this point, just that I made it through, and I’m glad it’s over.


Edited Jan. 31, 2009:

I originally typed out Finn’s birth story just a few days after he was born, while he was in the hospital recovering from the surgery he would have at one day old. I think at the time that I wrote the story of his birth, we were still awaiting the results of the genetic workup that would confirm that he had Down syndrome, but we did not yet know for sure. I knew in my heart of hearts, though, that it was so. And so, that fact coupled with the fact that my newborn baby was in the hospital recovering from major abdominal surgery had thrown me into the depths of despair and grief and fear. And those emotions are probably reflected in the tone of his birth story, which now, all these months later, makes me sad.

The truth is, looking back, his birth was amazing and empowering. I can’t think of a thing I would have changed. I was supported by a loving husband and a caring midwife, and our baby entered this world gently, surrounded and embraced in love.

_______________________________________
The Diagnosis
I went into labor at right around 38 weeks with Finn. When my water broke, the amount of fluid that gushed and gushed was unbelievable. He was born in the wee hours of the morning on July 7, 2008. The birth itself went just fine, though the whole thing took quite a physical toll on me. All the excess fluid and the extent to which my uterus had been distended kind of put my body into shock, and I could barely stand up without help after Finn was born (it was the same after my twins were born).We were very surprised with how big I had gotten to see this tiny 6 pound baby emerge. I was so exhausted by the birth that I don’t think I was completely lucid or able to focus on details. I was surprised by Finn’s small size, but noticed nothing troubling about him. Michael was concerned about how the baby’s abdomen looked – it appeared distended. I couldn’t see what he was talking about. I just needed to rest. Our midwife stayed for a couple hours after the birth and then went home. Later I learned that she did not go home to sleep, but to pull out her textbooks and do research. Something about the baby didn’t seem quite right, but she didn’t want to alarm us, and nothing seemed life-threatening, so she went home to gather information before bringing anything to our attention.I slept. The baby slept. I woke every so often and tried to nurse him, but couldn’t get him to latch on. I was too exhausted to be concerned. I knew that babies are born with a reserve of fat and that they could actually go a day or so without feeding after birth and be fine. Besides, I remembered that it took some time for some of my other babies to become alert enough after being born to nurse. Finn didn’t pee or poop either during those first several hours. I wasn’t concerned. I was too tired, and my whole body hurt. I felt like I had been run over.

My midwife came back early in the afternoon of July 7 to check on me and the baby. While she was there, Finn opened his eyes for what seemed like the first time. I will never forget that moment. I saw it in his face then, that he had Down syndrome. It was fleeting, and I pushed the thought away. No, it can’t be, I told myself. I didn’t say anything. I noticed that Sue, my midwife, was doing an extremely thorough exam of the baby – way more thorough, it seemed, than she had done of Lilah when she was born. Still, I refused, or was unable, to register that something might be amiss. Then she showed me his palms, how they each had a single line crossing them (which I had never seen or even heard of before), and she gently said, “You might want to bring this to your pediatrician’s attention when you take Finn in.” “Why?” I asked. “Because,” she said, “it can sometimes indicate certain genetic anomalies.” I went cold then. “Like what?” I asked. But I knew what she was going to say even before she said it. “Down syndrome.”

Things got crazy shortly thereafter. Finn was by then about 12 hours old and still had not nursed, nor peed or pooped. Suddenly he started spitting up blood, and that was really the beginning of the rug being pulled out from under us. Leaving our midwife with our other kids, Michael and I had to rush our newborn to the ER where over the next several hours he would be hooked up to an IV, have a tube fed into his stomach to flush it repeatedly, and undergo a number of exams and tests which would eventually show that he had a duodenal atresia, which explained my polyhydramnios, and also explained why he wasn’t peeing or pooping. He was admitted to the NICU, and we went home that night with empty arms. The next morning, at one day old, Finn underwent major abdominal surgery to correct the duodenal atresia. Relatively speaking, in the gamut of abnormalities and surgeries, this was fairly straightforward and routine, but it was, of course, devastating to us to have to leave our baby and to see him struggle to recuperate from the surgery. He spent 12 days in the NICU, and it was during that time that we received confirmation via a blood draw that he did, in fact, have Down syndrome.

Sometimes I wonder, looking back, if the news of his Down syndrome might not have been quite so crushing had we not also been dealing with his having to have surgery and to be in the hospital instead of at home with us. It all seemed to compound it.

Nonetheless, I really feel that his diagnosis was delivered to us in the most gentle and humane way possible. Really, Finn himself was the first one to tell me, when he opened his eyes and I saw it in his face for that brief moment. I wasn’t ready to accept it then, but there it was. I actually hold that moment as very precious now. My midwife suspected almost immediately after he was born based on different observations she made, but she wanted to be sure before she said anything, and she wanted to give us time to bond with him and get to know him without a scary diagnosis standing in the way. I will forever be grateful to her for the way she handled it. And the doctors at the hospital were very kind when his diagnosis was confirmed. Not one of them ever painted a grim picture for us of Finn’s future, and as I sat there hour after hour, day after day, crying and trying to come to terms with it all, it was the doctors and nurses who told me over and over, “Who knows what he’ll be able to do? Just wait and see.”

There’s really nothing I’d change if I could. I don’t at all regret not having prenatal testing – I’m glad I didn’t know until after he was born. I had the luxury of just enjoying being pregnant and being excited about the coming arrival of another new baby. Had I known beforehand, I know myself well enough to know that I would have been scared and depressed – it would not have been the joyful experience it was. And knowing beforehand probably would have induced me to give birth at a hospital instead of at home, which I know I would have regretted.

I’m glad that Finn was born at home. Not that I’m advocating home birth (I’ll save that for my other blog!), but for me, it was the best thing. Giving birth at home allowed me a measure of love and support I never had with any of my hospital births. Finn was born into loving hands, in surroundings comfortable and comforting to me, and we were given hours and hours to be with him and love him without a diagnosis getting in the way. It would have been a whole different story had he been born in the hospital. A number of people seem to think the whole thing might have been better, or safer, had he been born in the hospital. I am here to say that that is just not the case. Being born at home did not cause his Down syndrome, and wouldn’t have changed the outcome of his duodenal atresia. Being born at home was the best thing for him and for us, and I’m extremely thankful.

And that’s the way it unfolded for us.

_______________________________________
Today
That was the beginning of Finn’s story, of our story with him.  Today Finn turned four  years old.  In some ways, I can hardly believe it’s already been four years; in some ways, I can hardly believe it’s only been four years.  In any case, we’ve all come a long, long way since those early, bewildering days.
To say that Finn is a gift sounds trite, but it’s true.  He’s a gift in the same way that each of our other children are gifts – they’ve each taught us about love and life and what really matters . . . and Finn, perhaps a little more so.

Faith and Disability – Blog Hop!

I am, as many who have been reading my blog for any length of time know, atheist.  This seems to be somewhat unusual in general – at least in my community where Christianity runs rampant – and even more so in the Down syndrome community I have become a part of online since Finn was born almost four years ago.

Click the photo to see what other bloggers have to say about this topic

I grew up Lutheran . . . whatever that means.  My mother took me and my brothers to church sporadically.  My dad never, ever went with us.  He was, I believe, agnostic, and also being the ’60s throwback rebel that he was, he made plenty of irreverent jokes about the “Jesus freaks” and the “Holy rollers.”  In any event, Christianity did not play a huge part in my upbringing – and yet, I grew up with steadfast beliefs: that it went without question that God existed, and that he watched my every move (and I had plenty, therefore, to feel guilty about), that I must confess all my sins daily via prayer (most nights while I prayed, my mind would wander and I’d inevitably fall asleep mid-prayer, which necessarily had to be added to the running list of “sins” I must confess the next night), and that even so, on Judgment Day, I would have to stand and face God and answer for every single wrong deed or thought I had ever committed in life.  I don’t remember ever getting any sense of comfort from my beliefs.  Sure, there was the promise of the afterlife, but one wrong move could land me in the fiery pits of Hell, and even if I ended up in Heaven, the idea of eternal life – even in paradise – freaked me the hell out.

In my adulthood, I tried a number of different churches, trying to find a sense of belonging, searching for that special something that would fill the void I carried around inside of me (the void I later realized was depression).  I never found it, and in fact, eventually abandoned organized religion altogether, so appalled and offended I was at the hypocrisy and judgment of these mere mortals (“Love your neighbor . . . homosexuality is sinful . . .”).  Still, I clung to my fundamental beliefs, insisting that one could have a relationship with God without being part of some man-made religion.

Eventually, though, my beliefs began to fall away.  I had always had questions that I mostly just swallowed, but there came a time when, on some subconscious level that I only recognized later, I began to allow the questions to take shape, and I began to explore them, believing, I think, that whatever faith I had might be made stronger by being put to the test of rigorous questioning.  It didn’t, however.  The more questions I had, the less sense the so-called answers made, the more it all began to resemble folk stories, myths, and fairy tales, with no substance to back it up.

It was a process.  I went from calling myself a Christian, to then agnostic.  But even that felt dishonest – it wasn’t really that I wasn’t sure.  Finally, only about five years ago, I let go and called myself atheist.  I don’t believe that any god or divine force exists.  I don’t believe there is anyone or anything looking out for any of us.  I don’t believe there is any afterlife; while I do believe in the “soul” in the sense that every person has an “essence” that makes them them, I don’t believe in a soul that is separate from or survives the body.  When you’re dead, you’re dead.

And you know what?  When I finally allowed all those old beliefs to fall away, I felt a weight lifted.  I felt free, and at peace.  And I realized that this life – this one life I have to live – is even more precious than I had thought before, because it’s all I’ll get.  Those feelings of peace and liberation remain with me today.

So how does this all play out in raising a child with a disability?

Everyone approaches parenting – of any child, with or without disabilities – from the perspective of whatever beliefs and philosophies they hold.  I’m no different.  My perspective just seems to be different from a lot of people’s when it comes to matters of faith.

The religious, I have found, seem to have a need to find divine meaning in things.  Many believers in the Down syndrome parenting community believe that God has given their child to them – specially chosen – to teach them some great lesson, or to use as a tool to teach other people some great lesson.  Some believers believe that having a child with Down syndrome is a special blessing; other Christians believe it is a punishment on the parents for unrepented sins.  Some of these views infuriate me because of their dangerous ignorance.  Some irritate me for the same reasons that many Christian views irritate me – views that have nothing at all to do with disability, but rather a propensity to foist one’s beliefs on others.

As soon as Finn was born, I felt bombarded by Christian sentiments.  “Do you have the Lord?” I was asked.  (As if “having the Lord” was necessary to cope with the awful tragedy of having a child with Down syndrome.)  “God never gives us more than we can handle,” I was told.  (An empty platitude if I ever heard one; plenty of people can’t handle, as it turns out, what life throws at them – that’s why there is suicide.)  “God gives special children to special parents,” I heard over and over.  (Really?  Even in Eastern Europe, where babies born with Down syndrome are still routinely institutionalized?)

Bah!

Life is random, that’s what I believe.  Nobody and no thing is in control behind the scenes – and that realization allows me the freedom to accept Finn without the weight of anger at some divine entity for burdening my son with a disability, and without the sense that I am expected to utilize Finn to get some dogmatic message across to anyone.  I believe that sometimes, in the dance between egg and sperm, in the delicate division of cells and chromosomes, something out of the ordinary happens, and a child like Finn results.  Life and parenting themselves provide innumerable opportunities for growth, for soul-searching, for learning profound lessons; there is no need to attach anything divine to it.  We can take whatever meaning we choose from every single experience we have.

My faith lies in science – to better understand Down syndrome – and all other disabilities – from a clinical standpoint, so that individual lives might be better lived.  My faith lies in humanity, and people’s ability to see beyond outward appearances, to embrace diversity, tolerance, compassion, and inclusion.

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