Happy Birthday, Babies!

A whole year has gone by. 

I'm still in shock at this realization.

One year ago today saw the beginning and the end of a lot of things.  One year ago brought us some harsh realities, packaged up into two bundles of joy.

Last year, my twins were born six weeks early.  Wyatt first, then his sister Zoe a few minutes later.  Wyatt weighed in at 4 lbs, 13oz, while Zoe was much smaller at 4lbs, 1oz.  Both had oodles of dark hair and the gossamer skin of prematurity.  Both had bright blue eyes.  You could tell right away that Zoe was going to be the spitting image of me.  To the medical staff at least, you could tell right away that Wyatt had Trisomy 21 or Down Syndrome. 

I was certain of his diagnosis as I looked over at his warmer a few moments after he was born.  Each baby had a team at his or her bedside, including a physician and several nurses.  Zoe's team was joyful;  there were jokes and occasional pauses in their work as they reflected on some nuance of my beautiful, yet feisty daughter.  Wyatt's team were a stark contrast.  They spoke in hushed, respectful tones as they worked on my son with efficient, businesslike hands. My husband jokes that my writing is often a string of homilies.  He's right.  This is the moment that began as I looked back and forth across the surgical suite, comparing and contrasting Team A and Team B as they saw to the needs of my newborn children.

Wyatt's cry at birth was different than Zoe's.  When he let forth the first breath of air that he had sucked into his tiny lungs, he sounded all the world like the newborns you hear on TV... only in short bursts. Zoe's pitiful wail would change shortly to the commanding screech she has now, but I did not hear her until after she had been totally suctioned out.  "She is the one that sounds abnormal", I remember thinking to myself.  "He sounds just fine to me."  I would later understand that she sounded like any other premature baby, but at the time, it gave me something to rationalize.  After the Neonatologist gave his awkward pronouncement,  they eventually brought Wyatt over, sleepily bundled up for me to see.  I gave him a quick peck before he was taken away by his procession of gowned attendants to the NICU.  "He doesn't look like he has it..."

Zoe was brought to me, mummified and scowling.  She was so tiny... so much smaller than her twin.  Even bundled up, she was still smaller than a football.  Zoe was too far away for me to kiss and I was about to ask for her to be brought closer when she was handed off to my husband and they too were whisked off to parts unknown.

"So small... So small.  Please be okay...  Please..."

I did not get to hold my children until the next day when I dragged myself and my IV pole almost the length of the hospital to the NICU.  After a night of lying half awake and in constant pain, I needed them and they needed me. Anyone that ever refers to a Caesarian section as "the easy way out" need only talk to me and hear the particulars about that walk.  My nurse was very concerned as I forced myself along... after all, we were supposed to be just dangling my legs over the end of the bed and here I was, on a mission, with my ass hanging out of a johnny gown.  She knew better than to stop me however, for at that moment, I would have crawled there over her broken body if that is what it took.

The babies were in separate isolettes and I visited each one in turn.  I was there for over three hours as my nurse came and went with a wheelchair, hoping to coax me back to my bed where I needed to rest.  The sad part was that I was resting;  the NICU, despite housing very sick babies, is the quietest place in the hospital.  The frequent spine-jarring announcements are hushed, the lights are muted and everyone talks in dulcet tones.  I spent a good while with each of them and examined Wyatt myself.  His ears were smaller and lower on his head and had a telltale fold.  His eyes were almond shaped with epicanthal folds.  His nose had barely a bridge and his face was flatter than hers.  His skull was shaped differently, being wider at the back and smaller at the front, giving the appearance of "points" on either side.  The back of his head was flattened and you could feel that his soft spot was open in a V to his eyebrows.  His hands, much to my delight, did not have a singer palmar crease and his toes did not appear to be parted with a sandal gap. Other than his heart, no other "abnormalities" were discussed.  "Maybe he's Mosaic... "  My husband came and finally convinced me to return and if not rest, eat.  Which I did, ravenously.

Flash forward a year and here we are.  My husband is in the kitchen putting stew in the crock pot and the kids are having great time playing together on the floor behind me.  Those fragile little humans are now thriving babies, who astound and delight us daily.  The only thing that has developed more in the last year is us.  Our thinking, our way of doing things.  There was a time where Wyatt's diagnosis would have meant something terrible.  (It isn't.)  There was a time where I would not have thought that I would have so much interest in genetic disorders and have time to make a difference.  (I do).  There was a time where it seemed that nothing was going to be right again.  (It didn't turn out like that at all).  There was a lot more born a year ago on this day than just these two babies:  Team Logan,  our network and support systems, our awareness, our desire to educate and advocate.  Two parents of a special needs child came into existence too.  We have all come so far.  It has been very difficult at times, of that I will not lie.  We've made therapy a casual everyday thing, something we can do while we play.  We make mealtimes fun.  We explore our world through the kids eyes, whether they be blue, brown or have Brushfield spots.  We love our son and embrace his differences just as much as we do his "sameness".

Today we celebrate many things along with the birth of our children.  Today will celebrate life and love.  We celebrate inclusion, we celebrate acceptance.  We celebrate strength and endurance.  Knowledge, education, awareness, advocacy... the list goes on and on. 

We celebrate new beginnings today. 

Happy Birthday, Wyatt and Zoe.  You are both perfect in every way.

You guys ROCK!

The Upside of Down

It is only Thursday and I am pooped.  It has been a very busy week so far (and will continue to be so), but we have had a few nagging questions addressed. I am happy to report that these answers have brought a lot of relief and comfort.

As I mentioned previously,  Our worker from Infant and Child Development Services came Monday morning.  Their workers come from a variety of backgrounds including ECE, Psychology, OT, Nursing... ours comes from an ECE and Developmental Psychology background, which suited me fine. She came in, introduced herself... and spent over two hours chatting with me and playing with the babies on the floor.  It was great.  Quinn was in fine form as well;  when he heard that she had arrived, he hurried to get dressed.  Unfortunately, he missed the pile of clothes that I had left on his bed for him (shorts and a t shirt as it was going to be a very hot day).  Instead, he came down in brown track pants and a light coloured pullover with a collar on backwards.  He came right up to us on the floor and sweetly announced "Hi, I'm Quinn" while wearing what looked like a straitjacket. That's m'boy.  She didn't bat an eye... I guess she was too busy gazing into his.  I sent my little lunatic upstairs to change and we got on with the assessment which was only occasionally punctuated by an off the wall [to us] but perfectly pertinent [to him] statement or question.

The whole conversation, like my brain, was very tangential and informal. It totally centered around what the kids were doing.  Both babies were awake and alert and ready to show their stuff.

Listen... they're talking about us again...

Wyatt's head is getting a little more steady every day, which is very encouraging.  "A."  was happy that Zoe could push herself up on her forearms and showed me a little trick to help them master it.  Overall she was very pleased with Wyatt's development;  she remarked on a few things, including his vocalizations, his mouth shapes during these vocalizations and his ability to track by sound and sight.  He also reaches well for things.  A. continued by listing off a few things that I can do to help both of them improve and I was very happy to hear they were things that I was already doing.  Little things such as ankle/wrist rattles, using the dangling toys on the Gymini-jillikers (Gymini play mat), the simple toys I was using, talking to them, imitating their sounds, changing their environment, introducing texture, playing music for them, singing and so on.  We talked about their delivery, Wyatt's diagnosis, their stay in the NICU and how we managed that... even Zoe's surgery.  She was amazed that a) I managed to make it to Mother Goose at all and b) how I was "handling" everything.  Sometimes you have to have things pointed out to you and I am no exception.  I guess our story is a little incredible if you think about it.  A. made a point of relaying how well she thought Team Logan worked together and how well we have dealt with our roller coaster lives over the last two years or so.  I told her that all you can do is laugh sometimes, and cited the dishwasher (which died a horrible leaky death the night before).  What are you going to do?  That's life.

Many of our questions were finally answered.  Infant and Child Development Services sets you up with whatever extended services you might need, such as OT, speech therapists, etc.  Usually, speech therapy and the like start after 1 year of age.  The idea being that you assess where the child is with their speech, etc at that time and then intervene appropriately.  We talked about Wyatt's physical health and swimming was discussed.  I was surprised that they don't recommend exersaucers and jolly-jumpers and the like, but she went on to say that many parents leave their children in them for hours at a time where they are standing on their toes and that interferes with proper leg and foot development.  She did add that 10 or 15 mins here and there would be fine and would be helpful, but no more.  A. went on to say that the best place for them would be just as I had them, on the floor, where they could grow and stretch and build their muscles in a more natural way. 

ICDSP also has a ton of resources for us to utilize:  They have toy and book/video libraries, will and estate planning, evaluating eligibility for and setting up government funding, groups and programs tailored for your needs... and the list goes on.  They will also be involved before Wyatt starts school;  the spring before he starts JK, we (A, the OT, any other development specialists, the teacher, the principal and Sean and myself) will all meet and discuss exactly what his needs are and whether or not he will need additional support in the classroom.  I guess at the time we will also discuss whether our school separates twins or not, but that is another issue.  Even though I knew that he would be going to regular classes like a regular kid, for some reason hearing it from this woman made me relax a little.  I don't know why... perhaps, once again, a small amount of validation can go a long way.  She will be visiting us monthly for the first while to assess his continuing development, which I was also pleased to hear.  I found the whole experience to be extremely positive;  Wyatt's doing well, we are doing well and we are doing the right things for him.  I don't think it gets better than that.

That night we took them to our GP for their 4 month shots.  I'm not so sure of their scale to be honest, but according to it, Zoe weighs 12 lbs, 6 oz and Wyatt weighs 12 lbs.  Zoe has officially beaten her brother in the weight department (you can chalk that up to the muscle tone).  Our Family Doctor was pleased overall with their progress and gave them a shot in each thigh.  I had Sean hold them down... I couldn't bear to do that again.  They were reasonable that night, but were feverish yesterday...  light to no clothes and Tylenol seems to have taken care of that for us.

Tuesday we had a trip to the cardiologist and once again, the kids were on.  I really do like going there as everyone is so friendly and very helpful.  We didn't have to sedate Wyatt (which is always a relief) and it was such a pleasure to watch the babies interact with the staff.  There were a few awkward spots especially when Zoe started crying right when we were doing an echo on Wyatt, but one of the staff just walked over and got her to smile as if this happened every day.  Wyatt had his checkup and his echo and the Dr. is so pleased with his progress that we do not have to see him for another 6 months.  Fantastic! 

We had a happy little moment on the way out as well.  Quinn was playing with a new friend in the waiting room and when we were leaving, I was delighted to see that the (younger) boy he was playing with so easily had DS.  I introduced myself to the boy and his mother and talked to Quinn that his new friend had the same condition that Wyatt has.  "But, they don't look the same" was his reply, to which I responded that "G" looked like his family while Wyatt looks like ours.  I don't even think Quinn noticed that his new playmate was non-verbal... they totally "got" each other.  "G"'s mom was very pleased with the interaction and I was too...  as it was just a little heartwarming glimpse into the future.

It is always good to hear good things about your kids, it's even better to be given the reassurance that they are doing well and most importantly that you are doing the right things for them.  Although I think we are pretty good parents and we strive to be the best that we can for our kids, it is good to have that little extra bit of validation.  Armed with that, we can continue on knowing that Wyatt (and all our kids) will be the best that they can be.  We may not be able to predict Wyatt's journey, but his path will take him places... of that I am sure.

Wyatt intently listening to big brother Quinn

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Mother Goose and Mother Guilt

Yesterday marked a milestone in my twins lives for two reasons. One, we managed to get out of the house ourselves for more than a Doctor's appointment. Two, we made it to Mother Goose.

Mother Goose is a program by the Ontario Early Years Centres for babies up to a year and their parents. The program facilitates bonding and communication with your child through song and activity. Quinn is a graduate of this program, as is the rest of my Stroller Posse (who as, you may or may not know, met in prenatal classes). I know that our weekly trips to Mother Goose certainly made a difference in my life. The networking with other Mommies was invaluable ("yours is doing that too?"), as was getting out of the house at least once a week for lunch with friends. The program itself helped me become more comfortable with Quinn as I learned how to soothe, stimulate and educate him using song. It sounds silly at first (it did to me too when I was initially encouraged to go), but it helped our connection along. His language skills are phenomenal (and always have been) and I attribute a lot of this to the program. Having my own lullaby set list saved us on more than one occasion. Whether his profound love of music and art came from Mother Goose or us or both is debatable, however he still has the CD and we still sing the songs to this day.

A sleepy little monster after a Mother Goose nap...

I haven't been able to do much of anything up until now with Zoe and Wyatt. The weather has been crappy, I'm still trying to catch up on the housework and it's only been recently that I've been getting more than 3 hours total sleep a day. Which brings me to my next topic...

The Mother Guilt. For my childless friends and family, I will explain... Mother Guilt is a real thing, as real as stubbed toes at 3am and diapers that leak. These things occur without fail and every Mother goes through it. It is not a stage, it is not a process, it is an almost daily occurrence and it never goes away. Mother Guilt is also largely unfounded and flies in the face of logic but nevertheless it perseveres. Your child hit their head on the door frame? You didn't childproof enough. Guilt. Child develops diabetes? It's your crappy genes. Guilt. Child not doing well with his or her peers? You didn't socialize them enough. Guilt.

Guilt, guilt, guilt. No therapy, class or time will diminish this; it is an integral part of the job description.

Talk to any parent with twins or read any twin book and you will be warned that you will have a lot of [additional] guilt and not feel fully bonded to your babies. As an added bonus, they caution, you may feel closer to one or the other for a variety of reasons and that this too is a normal thing. I can attest to this. Unlike with my first born baby, with whom I had time to cuddle and coo, these twins are work. Most days it feels like they are a series of jobs I have to complete. With twins it's all about task completion, schedules... and the myriad of other little things that you have to do in order to "get things done" or, more importantly "remain sane" (the last being debatable). I love my babies to pieces, but I envy the other Mommies with singletons who have more time to spend gazing into little eyes and stroking little hands and getting out to explore the world at large. Guilt. Wyatt needs extra time to help develop as much as possible and Zoe is a colicky mess most of the time... and I don't feel like I am spending any quality time with either of them. Lotsa guilt.

With Wyatt's DS, you would think that I would be all about the networking right now, but I'm not. I have tried... I really have. I have read the blogs, searched the associated websites... and I can't do it. I can't. They either depress the hell out of me and I close the browser window crying or they try and convince me how much of a blessing/treat/gift from God this is. There are also the "collectors" who, after having a child with DS, are moved to adopt several more from other places in the world. There are some with twins with DS, both identical and fraternal, but none with just one affected twin. I was reading the transcript of a radio interview this morning and the mother being interviewed was asked if she could take the additional gene away from her child would she do so. She responded with an emphatic "No!" and had a multitude of reasons why. Meanwhile, I'm thinking "In a f☠☠king heartbeat!". I guess the PC thing to say here is that I see Wyatt beyond his condition, but the truth is that I would never wish this on him. It's not horrible, it's not a death sentence, there are Rembrants and tulips here in Holland, but I would still change it, selfish as that may be. (Guilt).

Want to know The Big Guilt? The big Kahuna, the Grand Daddy, the done like dinner item? I realized by reading other blogs and online resources that I'm probably just as prejudiced as everyone else. I can't look at many pictures of other people's DS kids as they look "Too DS-y". I don't find them handsome or pretty most of the time. Despite every resource reassurring parents that DS kids look like other members of the family and not like each other, I think they do. I think a lot of them look the same. I do think Wyatt looks like my family however. I marvel at his normal hands and feet and point out that his physical characteristics are "minimal". It's kinda like saying he "has the good hair". When he's asleep and his tongue sticks out I gently tap it with an index finger to get him to close his mouth. I make sure I take the "best" pics possible of him (ie: less obvious).

Major Guilt. Check please.

Perhaps my perception will change over time as Wyatt grows into the man that he will be. Maybe I need this little learning curve to get over a few things, who knows? Maybe sancti-Mommy does need her little pity party in order to become a true advocate for her son. One can only hope so. I have spent the two months that he has been home trying to surpass this, trying to overcome the gulf that exists between myself and both my babies, especially Wyatt.

It hasn't been easy.

Up until yesterday all I saw were hurdles and tasks to be finished and overcome. Up until yesterday, I felt estranged and angry... and house happy. I was also desperately looking for a solution to Zoe's crying.

Leaving the house with twins remains a big deal, especially if you are like me and have to rely on transit during the day. I started preparing for our foray out Monday night. I was packed and clothes were laid out for all of us (including Quinn) to make my morning as easy as possible. On our arrival it was like stepping back in time; once I was in the group, singing the familiar songs I started to feel better. Oddly enough, it felt like home. Zoe stayed true to herself and cried throughout most of the hour, but Wyatt was a different story. I was sitting cross legged with Zoe balanced against one knee while I replaced her "tookie" (soother) again and again while Wyatt sat on my other knee. He was awake, but dozy, looking around lazily as he is want to do. We started with some bouncy action type songs and rhymes and I looked into his eyes at one point to find them wide open and staring. At me. Watching me sing. Then the most unbelievable thing happened.

He smiled and a connection was made.

You could tell that he was enjoying himself and that even for a brief moment, before Zoe lost her tookie and started screaming again, that we were in tune. We "got" each other. We had started to bond, finally. It was a very short period of time, but it was there. It happened.

This afternoon, after their lunch, I tried some of the songs and rhymes out on him again and the same thing happened. For a second, there it was. Zoe was still pretty nonplussed but Wyatt was on board. His eyes clicked over and he was paying attention. There was wonder in those beautiful blue eyes, and joy.

As with many of my journeys, I went seeking one thing and found another. Mother Goose may not be the answer for everything, but it will sure help. Maybe this level of networking will get me started and help me overcome a few things. Maybe I will find some resources that meet my needs, maybe I won't... or maybe I will be able to tailor what is available to fit and make my own.

I will keep looking, I'll keep shopping for people like me. In the meantime, I will continue to be honest with myself and move forward.

...And sing.

First Day of Mother Goose... a little light stretching before we started.

Drinkin' and Swearin'

I swear a lot.

A fuck of a lot.

Most people swear, I know, but I like to think of myself as a vulgarian. One of the last True Vulgarians. My friend Tracy and I are the last of this dying breed; we string together profanity as naturally as a stoned hippy strings beads. Not many people live in a Cockafuckatropolous, but by god, I do.

I have come by my swearing honestly enough: Dad was an electrician and dabbled a bit with the profanity himself. He once called my brother a "Bastardass" and liked to come out with things like "Holy Jumpin' Syph'd up Christ!" Truly, the genes come from his side. Nursing brought me to a whole new level of profanity. I didn't start using the "C" word (yes, THAT one!) until I became an RN... now I let it fly with an alarming frequency. I used to go into the med room and kick things and swear my head off. Now I have my "own" office. Unfortunately, there is a big window and some of my patients can read lips. Whatfuckingever.

Now I'm a MOM. I tried really hard when he was a baby to tone it down, but I always managed to rationalize it by "he's too little to understand". Now he repeats things like a demented parrot and I'm still trying to clean up my act. The other morning at breakfast was a perfect example. Hubby made Eggs Benny (yay!) and the Hollandaise ladle was there for any takers. Quinn gave it a good go and then offered what was left to his Dad. "Lick it, Daddy!", he said, innocent eyes shining. "Yeah! Lick it up, Bitch!" is what flew out of my mouth.

It hung in the air like a shot duck before it plummeted to the table. Without missing a beat, my son said "Yeah Daddy! Lick IT UP BITCH!!". Yes he did. My darling little cherub, with his eyes still shining, repeated it at the top of his lungs, with the window open. Over and over and OVER again for no kidding, 20 mins.

He already calls Schoolhouse Rock "The Grown Up DVD". When Children's Aid finally comes to the door, I know how this is going to play out... He learned the phrase "lick it up bitch" from Mommy and Daddy and then we all sat down to watch the grown up movie. We're fucked.

I can't drink that much any more, but you better believe that there are days when it calls. Loudly. That's why I was so happy to find my latest addition to my recomended read list: Moms Who Drink and Swear. It started out as a Facebook group (one that I will be as sure-as-shit joining as soon as I get home) and swelled quickly to the monster it is now. It is funny. There are T-shirts.

Fuckin'-A.