Friday, September 30, 2011

The Big Tell

On Wednesday I was able to attend our DS group put on by ICDSP.  Unfortunately, we had to leave early, just as the discussion was starting to get good.  It was a pity too, as it was a topic that has a lot of emotion surrounding it.  The question was put forth "how do you tell people that your child has Down syndrome?"

We took the easy way out (in a way) when it came time to inform family and friends about Wyatt.  I did it en mass.  I did it just like you are reading here:  I blogged about it.  That's how this blog started actually, all you see here stemmed from "updates" that I wrote to my friends and family on Facebook.  I did it that way as that option was available to me;  the ability to reach as many loved ones, friends and colleagues all at once and to give them all the correct information about Wyatt's AVSD and (then probable, now confirmed) Down syndrome. Telling individual people has been harder.  Colleagues that I am not on Facebook with, people in the neighborhood... there will always be that moment of uncomfortableness.

It is just that:  uncomfortable.

For me, it was never feelings of embarrassment or failure.  The little psych nurse on my shoulder made sure of that.  Most of the time I felt bad, in a way, for the people I had to tell as I knew it would at best be awkward and worst it might "ruin their day".  Other days, on angry days, I would get irritated at the inevitable head tilt and the sympathetic sigh of "oh".

"The Big Tell" as it's known around here, is just another example of how much education, how much work there is to do in regards to Down syndrome.  It didn't seem to matter who we were telling, the answers seemed to have the same basic lack of understanding.  Sean works in a warehouse with a high immigrant, low education population.  Initially he got confused looks as a lot of people did not know what Down syndrome was.  The R word came up, people either didn't know what to say or launched immediately into a story about someone they knew or saw.  The stories didn't always end happy.

When I told friends and colleagues, I got a lot of wishful/hopeful thinking.  Initially it would be his appearance ("He doesn't look it" or "Are you sure he isn't mosaic?" or "Are you sure he has it?")  I would carefully explain that he was karyotyped at birth.  Then it would be "he must have a mild case" or "he looks like he will be high functioning".  Then I would explain that there is no such thing as a mild case... you have it or you don't and how the extra gene expresses itself seems to be totally random, like squirting paint at a canvas.  We don't know what challenges he will have until we get there.  We won't know if he will be able to walk or run or sing or play music or balance a checkbook. The conversation would get uncomfortable. Eventually I got tired of explaining and would just nod and smile.

It didn't seem to matter what the level of education (some of the above were physicians, nurses, therapists, social workers, you name it...), there was an overall knowledge deficit.  Even I was shocked to learn how many different body systems can be affected [read: all of them].  That little extra manifests itself in some strange ways, from itchy skin to different hand prints to heart defects. Even from our little random sampling in group, you can see the extra copy in action as this child has this particular problem and that one has none.

We were lucky as we knew a month ahead of time.  Many people that I have met (either in person or virtually) did not know.  Their Big Tell would be laced with more anger and surprise than mine was, I would imagine.  The anger is real too... why my kid?  I have seen many expectant mothers drinking, smoking and doing drugs.  These people go on to have healthy babies that they cannot care for... Why is my child affected?  Why me?

Each new mother's situation is different as well, the manifestation of their anger/grief is unique to them.  For me, I was jealous of other Moms with only one DS child.  It makes little sense now, but at the time, in those early days of the NICU when I was typing "Down syndrome" into  a lot of search engines, I would be jealous of DS Moms who only had one baby or had one at a time.  "Oh sure", I thought to myself, "your kid can be all they can be... you have the time", whereas I had to divide my time between two babies.   Those days are long past, but it is the truth.  Now, I go to group and I am almost apologetic to bring Zoe as I know that some of those Moms who have just had their first child, a singleton with DS, would give their eye teeth to be in our position. 

It hasn't been all sunshine and kittens over here.  In that month before they were born, I wrote, I went to appointments and I painted.  I tried to make something constructive out of the anger that came from Wyatt's diagnosis.  It was a band-aid at best, but what else could I do?  As well wishers would ask how I was doing, as those friendly hands would pat my belly, I felt like screaming at them. "How do you think I feel?  My unborn son has a hole in his heart! He probably has a chromosomal disorder! How am I supposed to feel right now?"  How could they ask such things, I wondered.  How could they not know?  It felt like a neon sign was hanging over my head, for all the world to see. Instead, I would smile at a clerk and take my change or say "Not long now!" to the Mommies at the bus stop in the morning.  Maybe it wasn't the healthiest thing to do, but it got me through.  I was like a size 20 bridesmaid in a size 14 dress.  I knew that if I exhaled only once, just a little bit, I would totally come apart at the seams and there would be no stuffing it all back in again.

That had improved a bit by the time they were born and in the NICU, but I still had my moments.  When I wasn't at the hospital with them, I was at home, either getting what sleep I could or trying to reach out through the internet.  That is a difficult process too, as there are only certain times that you are actually up to this sort of thing.  There were days where I would type "Down syndrome" as a search term and have my finger hover over the 'enter' key, unable to press it as tears filled my eyes.  Other times I would be fascinated at some obscure part of Trisomy 21 and the tears would come, seemingly out of nowhere. 

Time does heal most wounds and education eases the troubled mind.  Now that I am back to work, I am running into lots of people that I haven't seen in a while.  Most know about Wyatt but there are still a few here and there that don't.  It is still a bit awkward, but I think my positive approach eases things a bit.  That positivity would not exist if it weren't for the work I've done in the mean time.

I had a friend tell me that she had read one of my postings where I had gone to the wrong doctor's office.  She marveled at how well I was doing as she felt that she would have fallen apart right then.  I chuckled and replied "Well, you just have to keep laughing", which is true.  If that incident had happened a few months earlier, I would have had a different story to tell... I probably would have fallen apart.  But, I didn't.  I face palmed myself and got on with my day, like I do most of the time.  It's about perspective.

Perhaps if Wyatt had needed his surgery earlier, life would be totally different, but I don't think so.  We would have hit our stride a bit later maybe, but we'd still be here.  Again, it's all a matter of perspective.  Down syndrome is not the worst thing that could happen by far.  Instead of having one "normal" twin and one "sickly" twin, I have two reasonably healthy babies who are both special in their own right (as is their older brother).  In fact, it was Zoe, the "normal" twin who needed surgery and a hospital stay.  We are lucky to have him in an age where DS resources and understanding have never been better (although there is still a lot of work to do).

If I had any further advice to new or expecting DS parents it would be this:  It is not the end of the world.  Your little one will surprise and delight you daily.  Tell the people that you want to know about your child any way that you want to.  Other people may have issue with this, but that is their problem, not yours.  Educate yourself as much as you can. 

If I had to do it all over again, I probably would do the same thing.  Except, this time, I would have posted the following:

Dear Friends and Family,

Sean and I are thrilled to announce the birth of our twins, Wyatt and Zoe on February 16, 2011.  Although a little earlier than expected, Wyatt came into this world at 10:18 pm weighing 4 lbs, 13 oz.  Zoe followed him three minutes later, weighing 4lbs 1oz.  Both are healthy and happy.  As a precautionary measure, they will have to stay in the NICU for a while. Both have dark hair and brilliant blue eyes and Wyatt has Down syndrome.  We're not sure, but so far it seems that Zoe is the spitting image of me.

We will try and keep everyone updated as time allows.  Pictures to follow!

Down syndrome is as much a part of Wyatt as brown eyes are to Zoe.  It is just part of him.  It will affect a few things, how well he does in school, what he does with his life, but it will not change how much we love him or his siblings.  It is not something to be ashamed of, nor is it something to go overboard with in the other direction, either.  His life will involved scraped knees and hurt feelings, just like the other two.

His life has purpose.  He is loved and will love.  I can tell you that right now for free.

Thursday, September 22, 2011

Points In Time

Where I am right now seemed like a distant, far off thing when my OB took me off work after Christmas. Not quite as far as Alpha Centauri, but not right across the street either. It was like looking at a remote building through the mist; it would shiver and waver and then parts of it would disappear as I squinted and tried to get my bearings.  I knew this point in time it was getting closer, how could I not? But, like anything in the fog, distance is a bit hard to judge. Now I find my arse on the pavement and my nose bloody as I seemed to have been off by a couple hundred miles and ran right into the damn thing.

But, here we all are. I return to work tomorrow. It's no secret that I am ambivalent about the whole thing.  It will be good for me to get out of the house, to have more structure other than 'who pooped when' and who's going to school and who needs socks. Instead, I will be concerned with 'who pooped when', who's going home and who needs meds. It will also mean not being with my babies for almost a week at a time. That is going to hurt. A lot.

This week has not been all doom and gloom however. This week has been about new foods and colours and textures. It's been about new groups and it has been about learning, sharing and clarification of purpose.

Since our last update, the babies have been introduced to bananas, sweet potatoes and peas. I think the jury is still out on the peas, but everything else seems to be an acceptable food source for both of them. In group yesterday (I'll get to more of that later), we had an OT visit to give us feeding tips. One of them was to offer the spoon sideways, not head on, as it forces the tongue back and keeps it from thrusting out (which DS kids tend to have an issue with). Wyatt is pretty good with his tongue and mouth development in general; although he does have a high palate (everyone in my family seems to), he keeps his fingers or thumb in there most of the time which has helped his tongue muscles develop and further his sensory awareness along. I'm just smacking myself as I knew that bit about the spoon... Or at least I did with the first kid:
Ah!  (Gimme!)
This is Quinn... and photographic proof that I knew what I was doing at one time.  My nails were better too...
The sideways technique works much better with Wyatt.  I had been stroking Wyatt's cheeks and lips in an effort (in my mind) to encourage the sensation in those areas which would help (once again, in my mind) with speech and eating.  I was a bit encouraged then when the OT demonstrated how stroking both sides of the face from the top of the jaw to the mouth and then under the nose to the mouth can stimulate awareness of the face and help activate the muscles. She also showed us how stroking the palate (the roof of the mouth) and the gums with a finger can do the same on the inside of the mouth, not to mention teach the tongue to move out of the way.  Many people have an idea of a "typical" DS kid with slouched shoulders and a protruding tongue;  this is due to the hypotonia or low muscle tone.  Try this yourself:  relax your shoulders, your spine, your torso.  Now relax all the muscles in your face.  Now your tongue.  Look in the mirror. Do you see it?

Sean went alone last week, but I was able to attend the group this week for new DS parents put on by ICDSP.  Other than another little girl who was born the same day as the twins, the other babies are only a few months old.  Just by looking around the room I recognized who was at what stage with their babies.  There was still a bit of fear in a few eyes... which makes this site and others like it that much more important.  In fact, I left the URL with the co-ordinator to check out and give to new parents if they wished (so, if you are joining us from there, hi!).  It may be a bit presumptuous, but I wish I had found several of the resources that I have on here much earlier. 

Each week they focus on a new topic.  As I mentioned earlier, today the group was visited by an OT who talked about eating, postioning, etc. There will be other important topics as well, including Will and Estate Planning,  Most of the positioning skills we covered today I already knew from my own research, although it was very validating to see them in action.  In fact, the OT remarked that she was happy to see how we repostion Wyatt frequently and allow him to use all his muscles.  I also brought up my Mother Goose experience as there are plenty of songs, rhymes and stories that you can use to interact with your little one and make it fun, not physio.

I had 'one of those moments' while I was there.  One of those "Aha!" moments, or a moment when you nod and say "yes, this is exactly right" or "this is exactly why I do what I do".  One of the services offered by ICDSP is a lending library of resources.  During the group, many of the DS books were laid out for us to check out if we wish.  Sean and I were the only ones that ventured over to take a look (perhaps we were the only ones ready... that is probably closest to the truth).  Sean picked up one book in particular called "Count Us In:  Growing Up with Down Syndrome" by Jason Kingsley and Mitchell Levitz, two men with Down Syndrome.  What Sean pointed out to me was an excerpt on page three of the introduction, written by Jason's mother Emily.  I've included it here, as Emily's words are much more powerful than mine:
Jason was born on June 27, 1974, and was diagnosed as having Down Syndrome when he was only a few hours old.  Like many other parents, my husband, Charles, and I were told by the doctor, "Your child will be mentally retarded.  He'll never sit or stand, walk or talk.  He'll never read or write or have a single meaningful thought or idea. The common practice for these children is to place them in an institution immediately."  The doctor went so far as to say, "Go home and tell your friends and family that he died in childbirth.".  

Other professionals were consulted reinforced this philosophy.  One psychologist suggested that raising a child like this would put extreme pressure and strain on our marriage and that the constant disappointment over the years would surely destroy our family.

This is in 1974, three years after I was born.   Yes, a whole generation has passed (and then some) between then and now, but ultimately this is not that long ago.  The above practice extended well into the 1980's.  I looked at the men on the cover of the book and thought about them and all the positive stories that I post every day on Down Wit Dat's Facebook Page.  Every one of those adults with Down Syndrome grew up in this environment.  As I've mentioned earlier, this is also the time when I grew up, where "retard" or "retarded" was common parlance.  Quite a few people have asked why I am doing this, why would I bother wasting my time. I've heard everything from "no one cares" to "is this still an issue?" to... well worse, ranging from apathy to ridicule to hatred.  To me the above quote crystalized the "why" for me.  Yes, we have come very far in the last 30 odd years, but we still have a long way to go.  One generation ago, the doctor might have said that to me. In this generation and the one before, I still encounter people that believe the above practice is still standard operating procedure (or that it "should be"). One generation from now, I want my grandchildren to look at their Uncle Wyatt with nothing more other than the love and respect that he deserves.  I want that time to fade into obscurity and looked upon with the same eye that we use look upon the darker areas of our barbaric history.  I want that time to be unfathomable.

Right now, Wyatt is still a little baby, although a little bigger and a little further along in his development.   I had hoped that both he and his sister would be a little more advanced by the time I returned to work, but it was not meant to be.  Instead, I will lug my trusty Medela to work and leave them in their father's capable hands.  For now, today, I will be spending my time with my kids.  We will do fun things and explore together in this last day that we have left together of 'our time'.  They'll eat/wear their mushed up peas and we will have a day filled with laughter.  I used to look at change and focus on the negative aspects, especially the "endings".  I'll say one thing for Wyatt, one of the things that he has taught me to appreciate are the beginnings.  Today is not an ending as much as tomorrow is the beginning. Tomorrow is the beginning of our next adventure.
Wyatt laughing at Mommy's antics
Added to the 'Define Normal' Blog Hop! Find out more @ Just Bring the Chocolate

Thursday, September 15, 2011

Bon Appétit!

We're on day four of The New World Order here at Team Logan and there have already been quite a few changes.  The kitchen is getting overhauled.  The laundry is no longer "Mount Logan" but rather resembles a large burial mound (hopefully not mine).  Everyone is a little more relaxed and Wyatt and Zoe are now eating solid food.

Last week I mentioned that I was leery of starting the babies on cereal;  I was concerned that Wyatt's head was still a little unstable.  My hope was to wait another two weeks to be well beyond the "six weeks corrected" grace period that each of their milestones is given.  That grand plan lasted until Saturday afternoon after observing both of them watching me eat.  After trying to take food away from me (not a wise move for anyone, even my own offspring) they sat there salivating as I ate my brunch.  Their little eyes bored into me, their jaws were moving in time to mine.  Their little pink tongues were darting out of their half open mouths over seemingly parched lips.  It was creepy.  It was time.  It was more than time.  These babies were hungry!

I hadn't dug out our high chair yet so they were each plunked into a Bumbo.  Wyatt still has trouble sitting up straight in the Bumbo for periods of time, so we were on the clock (I have since set up the high chair for him in the kitchen that works much better).  I mixed up a batch of runny rice cereal according to the directions for  "first feeding" and went to town.

Not surprising, my babies like to eat.

I love this one!
I love this and you Mom!

This is TASTY!
Rice?  More like awesomesauce!
I couldn't remember any of the first feeding guidelines so I had to consult 'the experts' beforehand.  According to a few places, a baby's first feed should be somewhere around a tablespoon or two.  These two polished off 1/4 cup (or more) each and were upset that I wouldn't give them more.

Please Mom... can I have some more?

I swear, I had to count my fingers afterwards as I was afraid that I had lost a few.  They were snapping at the spoons like little sharks.  According to the aforementioned 'experts', I was also supposed to keep food to once a day.  It was apparent by the end of day two that 2 "solid food" meals were going to be needed as they were starving (they still start out with a full breastfeeding session prior).  Can we say "growth spurt"?  Now they get BF 4 times a day, 4 hours apart and at lunch and dinner they get solid food and a "top up" bottle at bedtime.

I had been looking everywhere for first feeding instructions for kids with DS and found little that was useful.  There's a reason for that;  the instructions are no different than any other baby.  The main concerns are still head/neck development and swallowing ability.  Although Wyatt pushes a little food out with his tongue at times (because he is actually giving me his patented "raspberry of approval", not because of his glossal co-ordination), he has still taken to food pretty well.  He requires a little more "shaving" than his sister, but that is typical of a boy.  They like to wear their food.

We also have a new secret weapon this time:  Sean brought home The Baby Bullet.   I was skeptical at first, in fact the first time I saw the ads I remember thinking "how superfluous is that stupid thing?" (I used to have a vocabulary BT or "Before Twins").  I have a blender... yes it was a wedding present and therefore almost 14 years old, but it's still practically new (right?).  Except for the cereals, I made all of Quinn's baby food with it.  I would cook huge batches of things that were pureed according to his texture tolerance and frozen in ice cube trays (which I would then empty into labeled freezer bags).  It was a good system, it was healthy, it was cheaper... and it was a helluva mess.  I think I finally threw out the last of it a year ago.  This time I can make up one thing at a time, quickly and efficiently.  What really sold me on it was the milling head.  It never occurred to me to make my own cereals.  So I did.  This afternoon, I started with 1/2 a cup of brown rice and ended up 20 minutes later with enough ready made rice cereal to last us a week (if they ate at every meal).  I filled four of those wee containers (2 oz each) for the fridge and filled our freezer container (which is half the size of the one shown) and froze it for later.  It is awesome.  I still have a box of baby oatmeal cereal to start them on in a couple of days, but after that we are totally making everything ourselves. 

Baby Bullet
I could only be happier if I were full of squished sweet potatoes

I even used it to make the banana puree this afternoon.  We'll give it another chance, but thus far the verdict is split:  Wyatt is of the mind that I should immediately switch to having it "on tap" instead, while after a few bites Zoe decided that it was worthy of her best yucky face.  I'll mix it with a little rice cereal and maybe a bit of what is currently on tap and see what she thinks then.

Overall, both twins are doing well.  At their doctor visit yesterday they weighted in at 13 lbs 9.5 oz for Zoe and 13 lbs even for Wyatt.  That differential can totally be attributed to Zoe's muscle mass which continues to astounds me.  She is faster, stronger and way more agile than full-term Quinn at this age.  Wyatt is much improved as he is much less "floppy" than he used to be.  In fact, when we lift him up high into the air he is not as ragdoll like and more like superman.  He will also stand on his legs when held in a standing position, something that Quinn was totally against for a very long time.  To quote one of my girlfriends, Quinn's take was "Legs?  What are they good for?"  Wyatt seems to have his own way about things which is very much a delight to watch.

There was a chill in the air this morning;  I can almost smell winter coming.  The babies will be 7 months old tomorrow and I go back to work a week later.   Time is marching on.  With each new thing I am reminded that they will not be babies forever and this special time will be over for us soon.  As bittersweet as that is, it also represents all the new things headed our way.  New things that will be done first one way, then repeated slightly slower and differently. Done differently, done in the Down syndrome way.  Wyatt's little extra brings a whole new flavour to our family table. One that many, incuding us, have never experienced before but are enjoying immensely.

Bon appétit!

Thursday, September 8, 2011

Changing of the Guard

There are some big changes for Team Logan in the next few weeks.  Some are welcome, some not.  Some have been a long time coming.  In the next little while, we will be completely overhauling our lives, starting with our roles in this family.  It may seem a bit drastic or a bit weird or awkward to some, but I think it will all work out just fine for everyone involved.

Sean and I have always had to work;  it was never an option otherwise.  After we had Quinn I was hoping to drop to part time but unfortunately the gap in our wages is too far.  That is no slam against Sean, who does really well as a "Team Lead" or "Specialist" or whatever you call a supervisor today without actually calling them a supervisor (and therefore, do not have to pay them as a supervisor).  That's a sign of the times.  Companies want the most out of people for the least amount of reward.  It makes me very sad.  However, four years ago we stuck the boy in daycare and returned to our working lives.  Now we have two more little ones and I have to return to work early.

It really stinks that something so personal as time with your babies should come down to money, but it does.  I know I am not alone here, either.  "Family first", as they say... unfortunately that means "work your ass off and pay others to raise them for you or starve".  At the very least it won't be as bad as the last time;  I was a complete wreck when I went back to work after Quinn. At the time, we chose an in-home daycare option as it was a) cheaper and b) decreased the sample size in the petri dish.  His initial caregiver (he would go through 4 in 3 years) was a very nice lady who took very good care of him.  That didn't stop my husband and I from clinging to each other in the driveway of her house after we dropped him off on the first day. He was inside, probably finger painting his little heart out and we were outside carrying on like we had abandoned him to the elements.

This time is different as Sean will be taking the rest of the parental leave.  Instead of trying to pay for three kids in daycare, he is gong to stay home and spend the time with them.  I did not know until recently that he regretted not taking any time with Quinn, but this is something that he has certainly wanted to do.  I don't even know where to start with how much happier I am with this decision. Wyatt and Zoe will hopefully never know what it feels like to be woken up before 6 am, hastily eat and then be shoved first into a starfish shaped snowsuit, then into a cold car to be dumped at someone else's doorstep for the day. I'm sure this is just my mother paranoia kicking in but it is hard enough finding quality daycare for one child, never mind twins.  Never mind twins where one of them has special needs.

It also means no more late-night writing out of cheques and schedules, only to be told that I have hopelessly fouled them up a week later.  Oh sure, I can calm a maniacal hummingbird and soothe the most savage of beasts at 4 am, but apparently simple banking is beyond my skillset.  I used to have to make out calendars for everyone as well;  two for daycare (one for the provider and one for the agency) and one for Quinn's teacher so that she would know which days were "bus" days and which days his caregiver would pick him up.  As per my contract with the agency, I had to send him a minimum of 3 days a week.  I worked continental shifts (2 on, 2 off, three on, two off, two on, three off, switch to opposite end of clock).  In the interests of saving money, I would have to pull at least one "Iron Mom" a month where I would work all night and then stay up all day with him. When Sean's work moved from a comfy 6 minutes away to a mind-boggling 45 mins, the Iron Moms became up all day and then work all night.  Not recommended... but, every parent in my line of work has had to do it at some point in their career.  Thankfully the woman who ran the agency is a sweetheart and after politely pointing out my error would accept my fumbling excuses, make up checks and new schedules graciously.

Quinn was also a year old mind you, when I went back to work the first time.  This time the babies are a little over 6 months old.  As of right now they are still not taking any solids as Wyatt's head is still just a touch too unsteady to start cereal.  I'm sure he would be fine, but I am not taking the risk of aspiration as pneumonia could very quickly set in with his DS immune system and with his AVSD... well, I'm not going to even go there.  In any event, I am still their chief food source and I will have to take my trusty Medela with me when I return.  It should be interesting trying to find a quiet spot three times a shift, but it can and will be done.

Although most of me is sad and a little bit melancholy about returning to work, I cannot deny there is a tiny part of me that is doing her happy freedom dance.  Let's face it, I'm terrible at the stay at home Mom thing.  I don't know how other Moms do it, frankly.  I could have stayed off forever with Quinn, but now I find myself a little too eager to go back sometimes.  Maybe it's the constant screaming... maybe it's the constant laundry or the dishes or the little pieces of paper, glue, Popsicle sticks and other random craft supplies that my 5 year old leaves in a trail behind him... but part of me has had enough.  Part of me is willing to go back to the world where insanity comes in all flavours, shapes and sizes and there is never enough coffee, Sani-Gel or Jack Daniels to clean it all off. It is a small, crazy part, but it exists nevertheless.  I guess I need a balance and a sense of order which has totally broken down around here since I went off after Christmas.  [Un]fortunately, it is time for my shift to be finished and my relief to take over.

We were trying to explain to Quinn that shortly after he returned to school, Mommy was going back to work.  He asked if he was going back to his last caregiver and was quite concerned when he was told no.  I carefully explained that Daddy would be leaving work and staying home, at least for a little while and doing all the things that Mommy would normally do.  He looked really confused for a moment and when I asked him why, he asked "Is Daddy going to pump?"  I must have looked confused then because he continued with "...pump milk for the babies?"  When I had stopped choking on my own saliva, I explained how that was impossible.  We all had a good laugh about it and now it has become a family joke "Daddy's gonna stay home and PUMP!  Bwahahaha!"  What Daddy IS going to do however, is sort out quite a few problems around here... and he is welcome to them.  If he totally wants to reorganize the kitchen to his liking, so be it.  Do whatever you like, as long as it is consistent.

Please don't think I'm just going to throw him into the kitchen and shout "Bye!" as the door slams behind me.  We've arranged it so that we have almost two weeks together to transition.  There are a few appointments in there so I can familiarize him with a few specialists and clue him in on how each of their offices operate (I know I shouldn't have to, but it really does help to know all the tricks).   We can also have a block of time together where we can plan out a few things. Things like meals and swimming lessons and "what to do with the mudroom" and "where the hell are we going to put all this crap" and "how the frick am I going to sleep in the day with two babies in the house"... and so on.

There is a new shift to go back to;  tours of four 12 hour shifts (2 days and 2 nights) followed by five days off (with the occasional "red shift" thrown in for sh☠ts and giggles). The kids will most certainly benefit the most from Sean being home as they will have consistency, structure and at least one ready parent at all times.  I will most certainly benefit as I will have consistency, structure and one ready responsible adult at all times.  Which is very important, especially after the last night shift where I am probably sporting a new set of bruises and my brain has assumed a consistency not unlike tapioca pudding.

Weekends off will be scarce, but we will all have days off during the week where we can go do something.  Wyatt will have his needs met and then some;  a parent at home means he will do whatever exercises and skill practice he will have to do to be the best that he can be.  It also means that at least one of us can attend any of the daytime groups that ICDSP offers. Sean benefits as he becomes the family MVP, which pays less than his current employer, but the perks and swag are awesomesauce. 

Going back this time feels weird.  I went back to work the last time and retained my Mommy crown.  Now, I feel like I'm passing it on.  It's freeing and scary all at the same time. Overall I think I'm getting a pretty good deal as I get to reclaim some of my sanity, have meals planned and cooked for me and I can concentrate on my career and on being a Mom when I am home.  I can also do all of this without worry as I know they are in excellent hands and well cared for.  It's not for forever, it's for the time being and it's going to be pretty good.  It will also free up some time where I can actually write without having at least one child crying in the background while I reach around the Medela.  It might also be nice to eat a meal where I'm not acting like a prisoner:  hunched over, shoveling in the food and ready to shank the first bitch that looks at me the wrong way. 

It may not be mainstream, it may not be hip and it may not be what some would deem appropriate for a guy, but my guy is going to be a stay-at-home-Dad.  It may not be what all the rest of the cool Daddies are doing, but it's a lot more than what many fathers do:  he is doing what is best for his family.  Which is more "man-up" than a lot of men are capable of giving.  He's our new hero and we will be toasting his new position tomorrow afternoon, as a family, with celebratory smoothies.

Go Team Logan, Go.  We may be switching up the roster a bit, but our eyes are still collectively on the prize.

Mom, Dad, Boy, Twins.


We are down wit dat.


Friday, September 2, 2011

You Can't Always Get What You Want...

Last spring, we gave up trying for a baby. We had been working on this little project for over a year and we did not want our son Quinn to be an only child.  I was 38 and I felt that time was running out.  After all, the older you are, we thought, the greater the chances of having a baby with "problems".  We didn't want that,  so it had to be now.  As time went on we started saying things like "maybe we should go see somebody about this" and then we'd get busy and forget or I'd go back on nights and then whoosh!  Another month would go by. Then we'd look at each other again and say "we should really go see someone"... and so on.  Finally, in June we gave up.

Somewhere around then, Mother Nature looked over and said "You what?  I don't  f☠cking think so.  [Blam!] Twins!"

By July I knew I was pregnant and by the time Quinn started school I was perpetually green and frequently had my head hung over a toilet.  In the second week of September (at the twelve week mark) I knew something was "different" and I was dying to know what was going on in there.  I had the first part of my IPS screening on the Thursday, but by Monday's night shift I was really antsy.  Luckily, I'm a nurse who works in an ER and has friends who need to practice with the ultrasound machine.  After an unsuccessful attempt at the doppler (to hear the heartbeat... I just wanted to hear something) my friend advised me to come back later.  It was our little secret agent mission, Operation: Baby Peek. Meet you at oh-three-hundred.  Drink lots. Bring the machine. 

Thankfully, it was a very slow night.  My friend started expertly poking around with the ultrasound wand and then she found what she was looking for.

"Awww, there's the little nugget!" she said.

"Yeah... but what the hell is that?" I asked, pointing at the screen.

It was gone by the time I opened my mouth, but for a second there was the ghostly image of another baby, another sac, just beside the one she had found. Then it quickly faded back into the gloom.  We tried for 45 minutes to find it again.  Forty five minutes in the dark, poking and prodding and "Umph!"-ing and me saying things like "Ow!  Do you know what you are doing?" and some frantic button pushing on my friend's part.  Colleagues started poking their heads in as they noticed the lights were off, heard weird noises and wondered what the hell we were up to.  By the time we gave up, the room was pretty crowded and we still hadn't confirmed if there was a second baby or not.

My husband was noticeably silent the next morning on the phone and advised that we didn't know anything for sure and we should not worry about it until we did.  That period of logic induced calm ended Thursday morning after my tests. After blurting out "well, it's twins!",  I burst into tears.  We were both a little grey for a couple of days.  Two babies wasn't exactly what we had in mind. 

Earlier that year, in February to be exact, we had traded in our Saturn Ion for a sexy new red Equinox.  It had room, it had flash.  It was complete and total awesomesauce.  It also came with a pretty cool stereo, in which we popped a compilation CD of all our favourite tunes.  Quinn's taste in music is pretty eclectic sometimes, but he would always ask for  You Can't Always Get What You Want by The Rolling Stones.  Every car trip.  First it became annoying, then it became a joke, then it became a family song.  Quinn would entertain strangers with it in the grocery store and would sing it at daycare.  It would be sung at random and when we were looking for something around the house that we couldn't find.  It became a "thing", a touchstone for our little family of three.

When we found out that we were having twins, we switched into action mode.  Where is all our baby stuff?  Is our stuff good enough?  Do we have enough stuff?  All we had was "boy" stuff... what if we had a girl?  Girls?  It was a lot to think about.  It was also increasingly evident that our vehicle was inadequate.  There was no way that two baby seats and a booster could fit comfortably across the back seat.   We also needed storage space as twin strollers take up a LOT of room.  Much deliberation ensued.  Sean took me to the dealer lot one Saturday afternoon to show us a van that he was considering buying.  Not a mini-van.  A VAN.  As in holds 8 people and has room for everything that the kids own plus a small Shetland pony.  It was huge.  It was white.  It would hold all our stuff.  It was awful.  It was also the only vehicle that met our needs that we could afford.  So we bought it.  We held a contest on Facebook so that all our friends could help name the abomination on wheels that was eventually christened "The Whaaambulance"  (think three kids screaming down the highway).  It was dreadful.  It was also a couple of years old and the stereo wasn't as advanced as the one we'd just given up, so we couldn't have our CD sing along on the way home, sorry kiddo.  We turned on the radio to hear the angelic childrens chorus sing the opening of You Can't Always Get What You Want.  "You got that right!!" I grumbled as Sean swung the nose of our new white beast out into traffic while an enthusiastic little voice serenaded us from somewhere in the recesses of its body.

Having a baby with Down syndrome wasn't exactly what we planned either.  While we were waiting for our genetic counseling appointment in October, Sean and I talked at length about what the possibilities could be and what that would mean for our family.  He confided in me at the time that a delayed baby, such as one with Down syndrome was always his biggest fear.  To him, that seemed the worst case scenario.  I knew that wasn't the case... There are some pretty awful things that could happen out there.  However, I was pretty sure that I didn't want a baby with Down syndrome either.  We accepted the counselors odds all too quickly, all too easily;  one in three hundred.  We are just not that lucky, we told ourselves.  There is no way.

We certainly did not expect one of our babies, who by January had names and  personalities (at least in our minds) to have a hole in his heart.  We also did not expect them to arrive 6 weeks early, at 34 weeks and 4 days. I had discussed with friends prior to this that I feared prematurity and the idea of them being small and spending a lot of time in the NICU... which they both did:  Zoe for two weeks and Wyatt for a month.  So much unexpectedness in such a short amount of time.

I found a begrudging acceptance of the van the first couple of times we went grocery shopping.  That grew as time went on.  On our first road trip, I truly appreciated the amount of cargo space as we practically had to pack up the house to go away for a few days. 

Now that the twins are over six months old, they have really started to be fun.  Each has their own separate personality, set of likes and dislikes and methods for communicating and exploring the world around them.  They are fascinating to watch as they interact with one another and roll around on the floor.  Without sounding too clichéd (or like a gum commercial) they are truly double the pleasure.  Now that they are working on their first teeth, they are always looking for a ready chew toy.  Since they have learned that biting their own hand hurts, it's much more fun to nibble on your brother or sister.  It's a very interactive game; the down side is you may get hit or kicked  in the face.  You will also find them holding hands frequently and always orienting themselves by where the other is. If one loses track of the other for a period of time, there is hell to pay.  I can give example after example, but with twins you truly get to experience many beautiful things that having one baby simply does not provide.

Sleepy Kisses - 7 weeks old

We were sure that we did not want a baby with Down syndrome, but here he is.  In the time from his AVSD diagnosis in January to now, we have realized that this is not a "worse case scenario" at all.  We still have a long road ahead of us to be sure, but it is not as dark and foreboding as we once perceived it to be.  Every day he shows us something new, something unique to him that is so wonderful that it threatens to break my heart into a thousand pieces.  I'm not so sure things would be as noticeable if Zoe (his "typical" twin) was not here for contrast, but they are.  From the way he lifts his feet up to touch you in greeting, to the way he watches your mouth intently as you talk and tries to mimic the shapes you are making with it.  How he says "Ah-whoo!" when you enter the room as if to say "He-llo!" and only really cries when he bonks his head or gets very scared.  How his "bean bag" body snuggles perfectly into your arms and how extra fantastic it is every time he masters a new skill.  He is a wonderful little baby who will one day grow into a wonderful man.

I was in the middle of getting them dressed yesterday and was mulling over a few things when that song came on the radio.  You Can't Always Get What You Want.  I had to smile.  It is so true.  You can't and don't get everything in this life that you think you want.  When we were trying all those months ago, it was for one baby, not two and certainly not one with Down syndrome.  But here we are.  You can't always get what you want. Since last June we have been on a roller coaster ride, one that has necessitated a complete overhaul of our relationship, of our lives, of our finances, of our house, of our family.  We have had to learn to be more focused with our time and our energies.  We have made difficult choices.  We never would have asked for any of this.

What we've gotten in return is immeasurable.  What was unobtainable is now ridiculously easy.  What was troublesome is no longer an issue.  A view that was clouded by the past is now clear for the future.  You can't always get what you want. But, like the song says "if you try sometimes, you get what you need".

You really do.  We sure did. Our beautiful baby son showed us that.

Good Morning Wyatt - 6 mos

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