Forgiveness....

My father and I didn't always have the easiest of relationships. He lived a "hard" life - - drank and smoked for many years. I am sure I didn't always help situations either. We were close, but definitely had bumps along the way........

At some point I just decided to not put these unreasonable expectations on my dad. I let go of the little stuff and decided to focus on what was good....I realized that he's had a tough life and I became more forgiving...That shift in my thinking changed a lot of things for us....

When I got pregnant with Nate, he vowed to call me every single night. I think there have only been a handful of days in the last few years that we haven't spoke. In fact I think I can count those evenings on my fingers. He hasn't come up to visit me often, but he does know everything about our days - From what we are having for dinner --to the weather (always a favorite topic), and course that daily scoop on the "Bean." My dad could tell you all of the things that Nate can do. He has been incredibly supportive and so just so confident that we will get through our toughest days. My dad seemed to have more faith in us than we had in ourselves....

My two cents for the day -----For those family relationships that are challenging -Look at where you can let go a bit - Hold the line with things that are very important, but also find opportunities to be forgiving. There is a reason your family members became the people they are -----My mom once shared with me a profound (yet so simple) revelation she had: Find forgiveness and have faith in the power of love.

You just never know when you'll have to say goodbye........

Dad and Lorie came to see us the day after Nate was born....

This was the first time he got to meet his grandson...

I love this picture.

Goodbye Papi

At 2:30 this afternoon, my brother and stepmother called me at work to tell me that my father had passed away in his sleep. It was very unexpected --- Truthfully I think we're all still in shock.I am so glad that my dad got to meet and spend time with Nate. He was definitely a proud Papi!

We love you and will miss you so much.........

Bean's Buddies....

On Saturday, we woke up to a cool crisp autumn morning. There was that sweet smell of wood stove which almost made us believe there were eggs and bacon already cooking for us in the kitchen. I actually woke up at 5 a.m. and remarked to Eric that it somehow felt like Christmas morning. I am not sure what exactly it was - Perhaps it was a combination of the sweet smell of burning wood and that all encompassing quiet of early morning. You know that kind of quiet that you take in knowing that your day will be exciting, and that somehow your day will change you. And yes it was an exciting day. A day in fact to celebrate all that Nate brings to our lives. A day to celebrate every one of his perfect 47 chromosomes!

Eric set off early in the morning to help set-up. Nate's cold was pretty bad still so we took our time getting over to the park. Nate enjoyed a steamy bath and a big bowl of oatmeal and peaches.

As soon as we got there, Eric waved me over to do an interview with him for our local radio station. Even though we had been talking and planning this day for months, in that moment it was so hard to find a few words that captured what this day meant to us. How do we explain this day to people who don't even really know what Down syndrome is? (I should tell you that Nate was quite fascinated by the big black foam-topped microphone that the dj had -and boy he really looked like he had something he wanted to say- perhaps he'll have a future on the radio!)

There was our walk, fantastic music, an amazing key note speech, and wonderful performances. In some ways the day was a blur --- so much love, so many family and friends, so many hugs, so much to celebrate. Looking back on the day, Eric and I felt like we needed more time to connect with folks. There are many people we wanted to talk to and didn't. Eric actually thought a potluck the night before could have been fun. We have also talked about setting up a parent group for the Valley. One day just isn't enough to meet and talk to people in our "tribe."

Although there are probably things that could be improved for next year, all in all, this year's Buddy Walk was a great success. The time and commitment that the planning team dedicated to this event was evident --The day was quite special. Over 200 people came and I think we raised over $6000! Pretty impressive for our first walk!!?? Right??!!

Of course minutes into the walk itself, Nate feel asleep. I guess that is what a steamy bath and a big bowl of oatmeal will do to you on a cool crisp autumn morning.....Yes, it was a pretty perfect day for all........

Brattleboro Buddy Walk!

Is in two days -------October 17th!

So the weather forecast doesn't appear to be so great (Mother Nature is not looking like our Buddy), but we are still hopeful that we will have a great turn out and a truly special day!!

Listen here for my interview with Monte from WRSI, 93.9 The River:
http://www.wrsi.com/pages/3243131.php

Click on "Buddy Walk" under podcasts.

At the orchard with our Bean.......
It's just impossible to think of our lives without our sweet Nate....

Belonging

Have you been wondering how school (Daycare - but don't tell Nate) is going???

Well it's been going great!! Our month long transition into Winston Prouty was worth every minute. The school community is pretty awesome. Nate is in a very diverse class with some pretty cute 15 month to 2 year old kiddos. His teachers are incredibly caring and supportive. They are also quite skilled in what they do. They participate in regular professional development and believe that all students in their program are unique and special little beings. So true.
Here is more info about the program (pretty cool - right?):
http://www.winstonprouty.org/early_learning_center.htm


Now that we're here....2 weeks into it, I can say that we are feeling like this is right for Nate. Truthfully I don't think we could find another daycare situation quite like this. Nate's interventionists work right there in the school. They can provide intervention right in his classroom and model strategies for his teachers to use. It doesn't mean that all is perfect every day...We still find ourselves needing to advocate for Nate - or even just speak up when things don't seem to be handled appropriately for him. For example this week, a 16 month developmental questionnaire came home for us to fill out. Out of about 50 things listed on the questionnaire, Nate could do about two of the listed developmental skills. A big oops on their part. However, they are always ready to listen to our concerns, respect our knowledge of Nate, and support our goals for him.

What really is exciting is that Nate is becoming a part of an inclusive classroom community. Nate's new friends want to play games with him, want to pull him around in the wagon - grab his glasses off his face. When Nate arrives in the morning, they all hurry over to the classroom entrance calling out his name. I am not sure he gets their excitement -It probably means more to us at this moment than Nate. But our hope is that someday he will be able to understand that his classmates like him and care that he's a part of their day. That his presence in is important -- That they would notice if he wasn't there.

What more could we ask for. Isn't that what a lot of us want? To belong?

Thank you Winston Prouty - You are a pretty special place!

Ch-ch-changes.....

So after the 30th person asked us how old our little girl was, we decided it was time to get Nate's hair cut..... (Nate and his "new look" below)


Speaking of changes......after many drippy sippy cup drinks, Eric decided to try a straw cup with Nate.

And guess what??!!

He LOVED it!!!! Nate's great with a straw! No more sippy cups for Bean!! Wahoo!!

Finding pace...

Sitting back and reflecting, I am struck at how positively rushed our life feels right now. I have to say this pace is very unsettling. Our transitions (Nate to school and mine to work) have felt hard to say the least. We all miss those summer days when we had no idea of the time or day. We were spontaneous and just living in the moment, letting Nate be our guide. Now it feels like we carry the weight of some superimposed granite clock in our days, counting minutes, following calendars, and attempting to check things off an endless to-do list. I just have to note that as I write this I am hearing "the ants go marching one by one, hurrah, hurrah" in my head (lack of sleep? or my delirium from our crazed week?) . And even though I know we know that we are not the only ones who feel this way, I am still finding myself feeling so resentful and angry that this is the way we are living our life. Where's the peace in this pace? (yea say that ten times!).

And then there's Nate, a guy who definitely moves at his own pace. Eric and I have felt so conflicted about these changes in our lives. Should I have stayed home longer with Nate? Although we know there are many benefits to Nate starting preschool/day care, we also wonder if he would be better at home a little longer. Unless Nate has a corner to himself, preschool is a pretty hostile environment for our Bean. In his class of 9 children, Nate is the only one who isn't mobile at all. Not only is he having to get used to all the sounds that other little ones are making (talking, crying to screaming), he also has limited ways to defend himself when other kids come into his space and touch him. Nate can't crawl or walk away, he can cry and that's about it. His mobility issues also impact his play. He needs to get "placed" in play situations when other kiddos can move in and out of play choices. I know there are many benefits to preschool too- don't get me wrong. I just wonder if Nate would get more out of preschool if he were mobile. I have to tell you if there's one thing we've learned from other families about Down syndrome, it is that Down syndrome children learn to do all the same things that other kids do, but just at their own pace.

So I feel conflicted. Is it better to let Nate be the guide? Or is it better to have him in preschool, a place which may be a more challenging environment for him?

Packing and Unpacking

Packing.........

It is hard to believe that this is the last weekend of a truly wonderful summer with Bean. Our summer began with me packing up my corner of the Learning Lab in Conway and saying goodbye to the many good friends I made there along the way. In June I accepted the position of special educator in my K-8 hometown school. No longer will I be 40 to 45 minutes away from my dear Bean; my new school is only a mere 8 minutes from my house. It is also only about a 15 minute drive to Nate's school/daycare that he'll be attending in the fall. Such a serendipitous blessing for us all!

We also packed our suitcases for two wonderful summer vacations - One to Maine and the other to my hometown in Baltimore, MD. Nate got to share precious time with his grandparents and uncles. He also spent time with great aunts and uncles, cousins, and his great- grandma. We visited many friends and even found time for a trip to the zoo! Though I have to say that Nate, as a "puller" and "grabber" these days, was more interested in the plants and bushes he could reach out to while in his stroller than the animals.

In August, we packed up our towels and sunscreen and headed to a town pool with our local gang (Mommies and toddlers). It was a first for Nate! We lathered him up in sunscreen, put on shirt and hat, packed up our toys and towels and enjoyed playing in the pool on a hot summer day. I think we stayed in the water for over 2 hours. It was heavenly for us both.

This summer we also packed up Nate's portable high chair and headed out to meet several new families who have little ones with Down syndrome. We hope to find a way to create a playgroup with these boys who are so close in age. In addition to meeting new friends, we so enjoyed seeing our old friends - R-man in Bratt and big boy P all the way up from DC.

And there was unpacking too......

So starts a season of many big transitions for us all. Unpacking also represents change and new beginnings. My heart sinks when I think about it. It's all good, but new. I start working full-time again (and sadly have to say good-bye to my days with Nate), Eric is home with Bean for the month of September, and Nate begins the transition to preschool. Lots of unpacking, shifting, and settling into new routines.

Speaking of transitions (and unpacking), we think Nate is on the verge of another milestone. Usually right before something big changes for him, we see a bit of regression and plateauing of skills. Perhaps putting together some new skill takes all of his focus -- he's working so hard at one thing, other skills lose priority for him. Because motor skills in general are so challenging for Nate, we've come to really appreciate all that goes into a motor milestone. I watch toddlers move effortlessly from sitting, to side lying, to squirming on the floor. It's fluid and so natural for them. Yet for Nate, we have to break-down the skill into all the prerequisite steps that go into the action. So we practice helping him move to side-lying when transitioning to a sitting position. We provide hip support to work his mid section muscles. We also continue to work on strengthening his upper body so that he can use his arms to support his body. For Nate, this work is hard. I don't mean a little hard, but red-cheek-heart racing hard. A real workout. Essentially we have to unpack all these developmental milestones for him. Luckily, the wonderful book, "Gross Motor Skills in Children with Down Syndrome, A Guide for Parents and Professionals," by Patricia C. Winders does a lot of the work for us. Thank you!

So yes, lots of packing and unpacking this summer. So many new experiences for all of us...

And now for some pictures.......

Pushing up is getting easier ; )

Quadruped --- Not a favorite position to be placed in...

At the pool....Ahhhhhhhhh

Happy visiting his Richmond cousins! Bye bye!

Our 1 year well visit...

went well! I again was asked to educate a medical student about Nate and his Down syndrome. I am of course happy to do this, however, sometimes I would like us to just have a regular visit with our doc. Our doc always asks me to point out all of Nate's physical characteristics that are related to DS. I kind of go into automatic pilot now when I do this. Maybe it bugs me because I want the visit to really be about Nate...not just his Down syndrome. Does that make sense?

Anywho, here are his current stats:

Weight: 21.1 lbs
Height: 29 1/2 in.
Head Circumference: 45 cm

Yes, thank goodness, our Bean continues to be healthy. Our big issues now are with his swallowing and possible reflux. Today we meet with the nutritionist and will introduce "thick-it." Thick-it will hopefully help Nate be able to better swallow water. We also got a prescription for a reflux med, Ranitidine, to try. Nate does need to get his hearing tested again, but we have decided to wait and have that done at our next trip to Beantown and BCH.

AND of course we need to give a glasses update! Nate can now keep them on for 10-15 minutes at a time! We actually think he likes them!

I wonder what his world looks like now.........

Nate's new glasses!

Nate's glasses finally came in yesterday. I think the verdict is still out on them. Unfortunately we don't think they fit him very well. Not only is he still a peanut, his ears are lower set and the bridge of his nose isn't as defined. There are wonderful glasses for kiddos with DS, but they don't have sizes small enough for little ones like Nate-Bean. Right now we're just working on keeping them on!

A week ago yesterday....

Our little boy turned one!

There is so much to say about our year with him. It's interesting to us that although we of course loved him dearly since the day he was born (well truthfully conceived!), he felt a little bit like a stranger to us. In the past year his personality has started to reveal itself. Nate Bean is clearly a little person with his own place in our family. He is curious, busy, funny, and just so musical. He loves his yo-baby yogurt but detests spinach and potatoes. Sometimes before he falls asleep, Nate gets super silly and can end up in a fit of giggles. Favorite toys include butterfly, dad's nose, the big white spoon and of course the mirror. He's a talker too --- Dadadadada and some new monkey noises too!

We can't imagine our days without our sweet Bean.
We love you Nate!

Perspective

I have been thinking a lot about perspective. Sometimes it is shifting the way we see something (literally in Bean's case) or life's backdrop that changes our perspective and ultimately our experiences with ourselves and one another.

Nate's big shift is that he's pretty much sitting on his own. About two weeks ago he basically sat all by himself for his whole music class!! It was amazing to follow his eyes and see what he noticed. He played with all the instruments and just loved looking at all the other children. And the cool thing is - once he started engaging more, the other children wanted to engage with him more. At one point, a little girl decided that Nate's lap would be the perfect place to sit. You should have seen Nate's face - It was priceless!

Just a simple shift in in our thinking allows us to see all the things Nate can do.
Again, it is all in perspective.

This and That

The last few weeks -- or has it been a month (yikes) have felt like a blur. Lots of sun...laughing...sleepless nights...and baby babble....

First the swallowing study....Here's a pic:


The good news is that all is well on the swallowing front. Nate still can only handle pureed food. Looks like we may have to talk to a SLP or feeding specialist about that. In general eating is going better. He is eating 3 meals now!

Also - the EEG came back, "relatively normal" - however, the doc still recommended that we follow-up with a neurologist. I should note that at first we thought we would just wait to see a neuro. But over the last few weeks, Nate's odd behavior continues to increase -and not just when he is eating. He also is doing some weird eye-rolling-in the back of his head stuff. Not sure what to make of it, but are thinking we really do need to see someone.

Ahh - the sleepless nights. It's still so funny to me how many times I heard that Down syndrome babies sleep well. Ha! Last night was our hardest night yet. I am not sure how any of us will function today. I think Nate was up every 30-45 minutes last night. At this point we just want something to show for all of our hours awake. A tooth would be nice.

Pictures that make me smile

Nate's nighttime routine: bath, story, snuggle with Mommy

My nighttime routine: tea, pumping, & pictures of Nate

Nate discovers himself in the mirror.....hehe



Peek-a boo! (By the way we love playing in the laundry basket!)

Nate recently became a more proficient roller
and you can see where this got him!

This is an oldie that always makes us laugh -
We saw this face a lot for a couple of weeks.

Eye to eye with the giraffe..horse..what the heck are you anyway animal??

.

Beantown continued...

Friday was such a beautiful day. We got ready early and walked over to the hospital. Nate did really well with the EEG. First his head was measured and marked (for correct electrode placement). Next the nurse used sticky tape to place about the 20 or so electrodes to his head. These were attached to many different colored wires. We sang our whole repertoire of songs to Nate -- and as long as were singing, Nate was happy. After he was hooked up, the nurse used a strobe light with Nate. It hurt our eyes, but Nate loved it - ha! Then we fed him to see if he would do the concerning behavior. Unfortunately by this point Nate was super sleepy and just wanted to nurse. So I nursed him and his brain activity was recorded while he slept. Poor Bean only got to sleep a few minutes before the nurse wanted to see him aroused. When calling his name didn't work, the nurse tickled his ear. That woke him right up --- I could tell by the look on his face that he knew he got gypped on his nap. We don't think the results will show much --- but I guess we'll get the official word from the doc next week.
Here's Nate with his head wrapped up.


Nate's eye appointment was long...but very interesting. You may remember that at Nate's PT appointment yesterday we mentioned that he tilts his head to one side. Well the doc thinks that when Nate tilts his head he is actually able to focus and coordinate his eyes better. So rather than this being an issue perhaps related to torticolis, in fact it is an adaptation that Nate is doing to help him see better. The eye doctor also noted that Nate's eyes turn inward when he's trying to focus - and that this too is another way he is coping with being far-sighted. The doc thinks glasses will really help --It'll just be a matter of us finding a way to keep them on!

Here are some more pics of our Boston visit.....

Side sitting with PT, Priscilla Osborne:

Snuggling with Papa after clinic day....


Nate's grandparents came to visit us at the hotel and brought him a new pair of shoes!

Beantown!

On our way into Boston we stopped by my cousin's house. Truthfully they really feel like my aunt and uncle. We hadn't seen each other in over twenty years! We had a delicious dinner and told stories of Great Grandma Zimroot and Peter. What a lovely way to start our Boston visit! Thank you Cheryl and Richie.

So the clinic. First of all, Angela, the DS clinic coordinator is amazing. She made everything about this day feel easy. Second, our little Bean did remarkably well. He was his sweet self from 9 - until 2! Pretty amazing.

When we arrived, a nurse came and did a weight and length check on Bean. He is 19 lbs, 6 ounces and 27 1/2 inched long.

Our first appointment was with the dentist. She talked to us about the importance of preventing cavities in Nate's baby teeth. The dentist swabbed both Nate and I for Streptococcus bacteria (http://en.wikipedia.org/wiki/Streptococcus_mutans). She also did an oral exam - Low and behold she saw several tooth buds on the top and bottom of Nate's mouth!!! Besides seeing the outlines of these baby teeth, we learned that dry red cheeks and smelly pee pee diapers can indicate that teeth are on their way. Just the other day E and I were noting just how pungent Nate's diaper was (sans poop). With the increase of drool, the theory is that babies tend to get a little more dehydrated when they are teething. Maybe this explains our difficult nights! Poor baby!

Next we saw the nutritionist. Nate ate (and of course didn't do his funny behavior stuff or choking). He 's right where he should be in terms of weight and length. We talked food and milk. She did give us the go ahead to start yogurt - yummy!

After this appointment Nate got super sleepy and took a short shnoozey. He then went to see the physical therapist. She was great - so experienced and insightful. On cue Nate rolled from his belly to his back and then from his back to his belly. Such a performer. She had a whole bunch of toys and put him in all kinds of positions. He loved it! At one point she used a little wooden chair as a little desk for him. His legs were tucked under and he could play with his toys on the flat part of the chair seat. I think we really need to build him something like that. The physical therapist did notice that he is tilting his head a bit to one side. Because if this and some of his other gross motor challenges, she recommended weekly PT for him.

Next Nate went to see the developmental pediatrician. The doc asked lots of questions and did a thorough examination of Nate. He recommended that we get a post natal genetic work-up with Nate to see if there was anything else going on w/him and if we were likely to another child with DS. Also the doc talked about accessing more services for Nate. Last, we spent a good amount of time talking about that strange behavior Nate does - mostly when in his high chair. Prior to our visit we shared this video with Angela (http://www.youtube.com/watch?v=dql00S-7sS0) and then she sent it to the docs we saw on Thursday. I guess there was enough concern about the behavior that the doc and Angela wanted us to see a pediatric neurologist. Because we are here an extra day, Angela was able to schedule an EEG this morning for Nate before his eye appointment.

Speaking of our appointments today....we need to get ready! We'll post pics tomorrow.

Nuk Brush

I feel like I have this running commentary on my life going on all the time in my head. And I think if only I could write that down! Is this just a human characteristic? Are you constantly narrating your life? This chatter would make perfect blogging. So much I want to say...and yet I find it so hard to find time to write. It always sounds so much better in my head too. Maybe that's why I keep it there!

I can't write without sharing something about our sweet boy. So here's a video - Nate lovin' the nuk brush. What a cutie!

9 months

Happy 9 months Bean!

Before Nate

It's hard to reflect back to the person I was before Nate. The love I have for him is so overwhelming and scares me at times. I sometimes find myself praying out loud when I am driving -Please please keep Nate safe. Please big truck just stay in your lane...Don't pass me. Just leave Nate and I alone. Inevitably the prayer always ends with -Just please don't ever take him from us.

I can't imagine my life without him.

I don't think I understood selflessness before Nate. God I would do anything for my boy.I sometimes daydream about these awful scenarios in which Nate is in danger. These dreams are so terrible that I don't even want to say them aloud. You probably have had these kinds of dreams before too. I would do anything for Nate. I would give him anything I had.

I am also not sure I really saw (I mean really took the time to notice) people with disabilities like I do now. When I see children or adults with special needs I look for something now...Some kind of gesture or expression that tells me about who they are....what their essence is. Who are you? What is important to you? I am not afraid of what makes you different. What is your story?

I also don't think I really understood what it meant to be present in my life. Boy my days would fly by! Well ...they did before Nate arrived. Now I move from one moment to the next with Nate, never quite knowing where we'll end up. Today I decided to pack up Bean and head into Brattleboro after some snuggle time in bed today didn't result in Nate taking a nap. We ended up walking around (with him in the Ergo carrier) until almost 7 o'clock - This was way past Nate's dinner and bath time. Yes, bad Mommy. BUT we had such a lovey time together. Nate did what I call "mommy worshiping." He leaned his head back and just watched my every move..my every expression. We made funny sounds back and forth to one another. I did my "Oh Boy" surprised look over and over again just so that I could just hear his little grunt of a laugh.

Nate just being Nate is truly the most beautiful expression of what it means to live in the present.

Thank you my Bean for all you have already taught me. I am so glad you're here.

Music Class

Last Fall Nate and I tried music class. Even though he loves music, the classes inevitably put him right to sleep. Yes these were pretty expensive naps. So today Nate and I tried Music Together again. It was nice seeing familiar faces. So many of the babies we had met were now toddlers. Most were walking - or wobbling around now. Nate did pretty well. He seemed more interested in the other children. He really liked it when the teacher broke out the scarves. Of course Nate was interested in tasting the scarves. After about 4 songs (with various percussive shakers), Nate started to cry. I saw that quivering pout and his eyes just filled up with tears. My poor baby! Was it too much for him? I nursed him for about ten minutes and was able to make it back to the group for the parachute (with glow-in-the dark stars underneath). That was definitely fun!

I think today was a success, but I am not 100% sure. Is music class really good for him or is it something that I want to be good for him? Did he like it?

Well it definitely tired him out. Nate and I came home and promptly took an hour and a half nap together. I love sleeping next to him...His hand was tucked under my chin and his feet curled up between my thighs. Snuggled up tight together. So warm ...so happy.

February 28, 2008

I recently found a part of a post I wrote the day after we found out about Nate's Down Syndrome. From 2/28/08

Can you tell I am practicing saying it? Last night we got the call we had been anticipating. Little Bean has Trisomy 21. It is so hard to explain all the emotions....... It's amazing how protective I already feel about my little guy - I don't want people to feel sorry for him or for us. I know Bean will bring great joy to our lives and we can make him very happy. We have no doubt. Everyone has life challenges....from parents with cancer, to house fires, to brothers in Iraq, poverty, to drug addiction (this list goes on..)..... This is just our story. So today begins a new journey for us. In some ways, I am still similar to you...pregnant and totally in love with my baby. In other ways, I am on a different road. I have a lot of learning to do.

It's hard to explain where our emotions are now. In some ways we are just new parents who are totally consumed with our son. We take a gazillion pictures of Nate and call to each other constantly to come see one of the million of cute things Nate is doing. We talk about the consistency of peas...what to do for constipation, sleeping through the night and our quest for the perfect sock "booty." On the other hand we are part of a new family --- the world of parenting a special needs child. In this family we celebrate our small and sometimes unconventional milestones (this week it was Nate grunting if we grunted)...We talk doctor appointments and early intervention. We embrace our differences and try to figure out how to navigate this life that has been given to us.

Right now we are still in what we call the "baby" bubble. At nine months, Nate's differences are still perhaps not as obvious to all (unless you are familiar with Down Syndrome). And truthfully, we don't even really know what others see. We just see our beautiful boy -with his big blue eyes, long lashes, beautiful smile, and delicious cheeks. Eric and I know Nate's Down Syndrome will continue to become more visible. Will our way of seeing Nate change?

The beginning of blogging....

Eric and I have thought about starting a blog for several months now. We hope it'll be a good place to talk about our Nate-Bean and adventures in parenting.

I just love this picture of him.