Nixing the Inner-Grinch

So this is mainly to get my inner-Grinchiness out of the way before the holidays.  In January, Parker moves up to the next room at daycare!! Normally, this would terrify me, but I am excited! He does so well with peers as his models.  His current room is 12-18 month olds, and he is 25 months, so he will be back with kids his age!  After two years and three daycares, it is amazing to me how clear it is when people LOVE Parker, versus being intimidated by his diagnosis, versus thinking of him as more work.  I think it is a mixture of Mommy instincts, plus teacher instincts that tune me in to this...and sometimes it is depressing.  

Parker has intensely and abruptly entered into toddler-hood.  He is mischievous (and clever), wild (and hilarious), stubborn in his exploration, and beautiful.  Typical toddler, right?  The hard part is that his communication struggles prevent him from comprehending commands or instructions-- so he is diving head-first into two-year-old behavior with the language skills of a 10 month old.  This makes some of his behavior challenging.  Currently, his teachers are frustrated with his swatting, pulling, and throwing.  He is STRONG! So he throws hard, and sometimes hits other kids with the toys he throws.  Gone is the baby whose calmness was envied by our friends and family with kids-- which we did love, but truly, we are SO thankful to see him engage with his environment!

The bottom line is, that it has become clear that some people see Parker as extra work and effort, and I hate being witness to that.  Teachers have a LOT of responsibility no matter what age level they are teaching.  But less teaching or child development knowledge is much more excusable when I know they love my boy. To be fair, this week has been worse than others, but still...I look forward to the next step...because it brings new opportunity to bond with people who love Parker despite his challenges, and who believe in him, and believe he can achieve. 

Cardiology 2014

This was it....the appointment that caused so much dread, anxiety, fear, and every other similar adjective in the book.  This one single cardiology appointment hung over our heads, looming, for an entire year.  I heard the Coldplay song "A Sky Full of Stars" on the way there and had tears in my eyes, because it makes me think of my Grandpop, and tends to ironically come on whenever I am thinking of him.  At the time, it felt ominous and sad, but I know that it was his message that everything would be okay.

The very last thing in the world we expected was to see the cardiologist's stunned face as he looked at the echo-cardiogram, and the very last thing we expected to hear was that we could come back in two years just to feel better about following up.  We were prepared for planning follow-ups and surgery dates in 2015.  We were prepared to hear that nothing had changed (like last year). 

To say we are grateful feels like the biggest understatement of our lives.  I know that so many other parents have so many worse issues to deal with than a moderate-sized hole in the heart, but for us....this situation (and the threat of open heart surgery) was unbearable.  This is a massive weight off our shoulders.

I really feel like we have guardian angels in our grandparents.  I picture my Grandpop up in Heaven, teasing my Grandmom, and rolling his eyes at the attention and admiration he is getting from down below.  I picture Matt's Grandpa leaning into his Grandma, saying "PMA!" - Positive Mental Attitude.  We are lucky to have them watching over us, and are lucky to have had them all in our lives.

Our little boy is so well loved, and is so fortunate to have (finally, in our minds) caught a break.  A big break.  Thank God.

My Grandpop.

How do you say goodbye to a man you have idolized your entire life?  Believe me, I know how lucky I am to have the opportunity.  My Grandpop is one of my most favorite people-- he is hilarious, feisty, generous, and hard-working, even after having been put through the ringer physically.  He is a smart, completely coherent man with a body that has failed him-- and there are days when I am so angry about that.  He made the courageous decision last week to enter hospice, after determining that his dialysis treatments were instigating strokes.  He was forced to choose between the unpredictability that comes with strokes with each treatment or ending dialysis.  He has come to the end of his fight, and made peace with that.


My family and I spent last weekend soaking up every moment we could with him.  Our favorite moments were the times when his personality pushed through.  His home was a revolving door of support, admiration, and love.  That being said, as my mom puts it, my Grandpop has endured what could be equated to attending his own wake over the last 9 days.  One night, he was restless and audibly upset-- and when asked if he was nauseous or hurting, he said no -- that he was just so sad, and said "I will just miss you people so much."  Every time someone walks out the door a sobbing mess, he has to see and feel their pain.  That is so hard.  I dreaded the moment when it would be my turn, and can honestly say it was one of the hardest moments of my life.  

We have been lucky to be with him, though.  He was furious about his last haircut, which was really a buzz cut, and thought it looked stupid, and did his usual grumbling :) I saw his last sip of beer and Sambuca.  We got to eat Rita's Italian Ice together.  He got to put as much salt on his fruit as he wanted.  We Face-Timed with Parker and Matt every day.  We went through old pictures, heard his wishes for his most treasured things, and ate some awesome Cannoli and Cannoli Cake (who knew that existed!?).  We also took some new pictures with him and the people who love him most.  We held his hand, kissed his cheek, told him how much we love him, how brave he is, and how proud we are. 

But ultimately, this sucks.  I have dreaded it my whole life, and counted myself so lucky to have him for so long.  Having him at my wedding, and watching him hold Parker have been some of the most cherished memories of my life.  I don't know what to do without him.  He is "New Jersey" to me.  He is "home" and he is the glue of our family...the patriarch.  I don't know how to be there without him.

And although at this point he is semi-comatose, he has been counting down the days.  Hospice told him 10 days (which he was mad about), which will be "up" tomorrow.  My heart hurts and I so dread the phone call that I know is inevitable.  I can't wait to be with my family, and as much as it kills me, I know that when my Grandpop isn't HERE with us, he will be at peace, reunited with my Grandmom and so many of his favorite people he has lost.  I love you, Grandpop.  You are my "person," and I will miss you every day.  Check in on us from time to time, if you aren't too busy catering to all of the pretty ladies in heaven :)

Fun with Ice Cream!

What it's all about....

This is what really matters.  After a long Monday filled with tension and stress, this is what matters.  This. Is. It.

Time is FLYING....

Our baby is almost two years old!  He is officially a serious walker and is constantly on the move.  After working SO hard on trying to help him walk and move more fluently, we are getting close to the point of trying SO hard to keep him still enough to do a learning activity.  I suspect this will become more challenging for us as time goes on, but for right now, it is a new thought process.  This week, we got two new pieces of "assistive technology," in addition to his orthotics, to help him do that.  

The first set is his SPIO, which is basically a wet suit.  It is a custom measured compression vest and shorts that are supposed to help him with his vestibular needs, and therefore, help him focus.  Yeah, I had to look all of that up too.  Basically, helping Parker feel secure physically helps him build his core strength, and allows his focus to move from balance and motor movements, to something else.  This will likely translate to what I am more familiar with in education--- weighted blankets and lap pads, special sensory seat pads, etc. 

The second is a Leckey Pal Seat, which I am honestly still learning about.  To me, it looks like a suped-up booster seat.  It comes with a tray, lots of pads, and adjustable everything.  The idea is the same...force some focused activity time.  

Right now, because of his age--all toddlers seem to have a propensity for constant movement and exploration-- it is really hard for us to tell how much Parker is struggling with focus.  If he has the right toy or activity, it seems like he could stay in one spot forever.  At the moment, we have only really found three things that are focus inducing....playing at his water table, listening to Daddy play guitar, and watching Baby Signing Time on the iPad.  With everything else, he seems to be seeking movement, and fights sustained activities unless we give him movement breaks, like swinging him from side to side, or bouncing him on our legs.  It is another one of those things that is fascinating, and would be more so if it weren't our day to day.  We try not to worry about what school will be like, and instead, put our energy into learning.

We are SO SO SO proud of everything Parker has accomplished so far.  We know he is going to blow us away in the next year, just as he has in the last 1.75.  We are loving seeing his personality and preferences come out.  He has become more reactive with scenarios he doesn't like.  The other day, Parker was standing near the door as Matt walked into the garage, and Parker started crying.  I just about cried.  He cries/yells when he accidentally turns off Baby Signing Time.  He spits out food he doesn't want.  He crawls up to me with a big smile when I pick him up from daycare.  These are all things that are "normal" that we have been waiting for for a long time.  The fact that his environment is clear enough to him now that he can begin to process it is a blessing.

Love him.  I wish time would slow down a bit, but we so love seeing him achieve.

Back to School!

It is back-to-school for Mama, officially, at least!  Even though I worked almost all of June and a good part of August, it is still hard to officially say goodbye to summer!  I am happy to return to our routine, excited to delve into my new school, but sad to leave the day to day experience with my little man.  

I learned a lot this summer, not the least of which is that, while I would love to stay at home with Parker so that I wouldn't miss so much of his day, I'm not sure I am cut out for the stay-at-home mom/wife role.  Sitting through hours and hours of therapy was so fascinating to me, but when we work on the same thing every week to help with mastery (ie: walking laps around the house, climbing the stairs, etc.), it got a bit tedious.  Constantly having to choose between playing with Parker or taking him somewhere, and the 10 million other things that need to get done was a long extension of the mental battle and guilt that comes along with some of those decisions as a working mom.

That being said, I relished in the ability to truly take my time with using signs between each bite, to see each minute progression with my own eyes, and to be "in the present" with Parker, his goals, and his personality.  I loved being able to see his smile when he woke up from his nap, hear his giggle when Chase licked his face, and his first steps.  SO much better than reading a daily report.

I wish I could give him the best of both worlds.  I think there are so many benefits to sending him to "school" --especially the one he is at right now.  The social awareness, language immersion, high expectations, and strong modeling that happens when surrounded by other people are things I cannot replicate at home.  However, that one-on-one attention, TIME, and perseverance are things I wish he could have.  Parker's sign language skills benefited so much from a lengthy, hour-long breakfast where we signed "More" over and over and over.  

I'm hoping that once Parker enters the public school system next year, that we will be able to push more for that attention that he needs (and deserves).  

For now, let the working mom guilt prevail, and the uncontrollable urge for snuggles and chubby cheek kisses continue.

Whew!

Whew, it has been a while!  I have so sorely neglected this blog that I love.  Life has happened, at the pace of a million miles per hour-- and I've always written when I FEEL like writing.  Not that we haven't been up to a lot, but in my down time, I chose to do other things....like laundry, or cleaning, or play time with Parker, or a bazillion hours of therapy with him, or just sitting and reading a horribly cheesy romance novel.  I know there will be a day when I read through this blog and wish I had written more, but again....life happens.  So, I will slowly recap the summer through flashback posts and pictures, and keep loving on my little boy as he gets bigger and bigger.

For a quick update-- Parker at 21 months:

Major Milestone:  Parker is walking more and more fluently every day! He is at the point this week where he is consciously choosing to walk instead of crawl, even when crawling might be faster.

Major Milestone: We have been working tirelessly for months on basic sign language.  Repetition and contacts for vision have been a huge support in this.  Each addition of a new sign is a bit tough, and causes Parker to jumble his repertoire for a week or so, but at this point, he is getting better at using "more," "all done," "eat," and "dog."  We are currently working on "milk," "Mommy" and "Daddy."  We are so thrilled!  Finding things he REALLY loves and shows preference for is so important to us.  Oatmeal and Daddy's smoothies currently top the charts!

Love: Parker still LOVES water play.  Baths are huge favorite, and he enjoyed fun summer dips in various baby pools and water tables.  

Love: Baby Signing Time! This DVD series has become a major favorite.  We have an iPad with a baby-proof case that we put in the playroom with P in the evenings while we get dinner ready and change from work.  I love the fact that it has real kids, some with special needs, the songs are easy to sing along to, and the songs cover daily routines.  This Mama stinks at making up her own songs :)

Love: Daddy's Guitar!  Matt will start playing the guitar in the living room, and Parker will rush over from wherever he is playing to listen and touch the guitar strings.  My heart melts every time I see it. 

Hate:  Surprisingly, Parker is NOT a fan of chicken, or most meat for that matter.  Every time we are out with friends or family, someone tries to give him some, and every time, he spits it right back out.  He does like meatballs and ground turkey in tomato sauce, but so far, meat is not his favorite.

Hate: Contacts getting stuck.  Last night, Matt and I were up until midnight driving around the neighborhood trying to get P to fall asleep deeply enough that we could take his contacts out.  One had been stuck for a full day.  I LOATHE these days, especially after working for 15 hours, but overall, the contacts are SO worth it.  

Working on: We are constantly working on sign language and communication!  Another part of speech is getting Parker off of bottles.  At this point, he still doesn't understand this sippy cup/honey bear straw cup business.  This is a BIG deal for us, as he isn't getting fluids any other way right now, he is the only one in his pre-toddler room still using bottles, and the next room up will be a struggle if we can't learn the sippy way.

Working on: Body awareness-- eye contact when playing with someone or interacting, wearing a SPIO compression vest and shorts for some sensory input, and core strengthening.

Father's Day 2014

This year for Father's Day, we took a family trip to St. Louis!  It was a MUCH needed get-away for us.  We had a lot of great food; Matt was in heaven with his beer tasting group at Perennial Brewing, and we had a blast visiting some "touristy" locations.  It was too crowded to go up in the Gateway Arch, but we got to sit by it for a while, and it is gorgeous.

While at the brewery, a mom came up to us because she recognized that Parker has Down Syndrome--which is a first for us. It was her birthday and she was with all of her family, including her 16 month old, but she took the time to come up to us, talk to Parker, and tell us how great and adorable Parker is.  She came up and talked to me a few times throughout the afternoon, and ended up telling me that her niece has Down Syndrome.  I was startled by how many emotions that made me feel!  I will never forget her kindness and sincere adoration she showed for Parker.  My only regret is that I didn't thank her for coming to talk to us!

So, a week later, I saw a mom with her adult son with Down Syndrome at the grocery store.  Of course I was watching them awkwardly with a big smile on my face, and the mom caught me :) So I went up to her and asked her how old her son was, and told her he was so cute and sweet-- he kept coyly smiling at me from afar.  I told her that I also have a son with DS, and told her a little bit about Parker.  She got emotional, and talked about how lucky they are that her son is still with them, as he almost didn't survive heart surgery as a baby, and that he is also on the autism spectrum- which I am hearing a lot about these days.  It was wonderful for me to see them-- I hope it was wonderful for her, too.  I am lucky to have a community of others to lean on, and know that so many other people don't get that opportunity.  Small acts of kindness are definitely what get us through life!

GiGi's Playhouse 5k

The GiGi's Playhouse 5k was much different for us this year than last year.  For one, with our switch in daycares (again) and everyone's crazy schedules, we didn't aggressively fundraise this year.  Our team was basically Matt, Parker, and I, and we walked with Parker's friends through the mile part of the morning.  Unbeknownst to us, it would be the last time we got to see Annie before she passed.  We got a chance to kiss her and hug her and support her in person, which we hadn't been able to do in a while.  It was a beautiful day, filled with a lot of support.  We helped Parker take steps across the finish line, and the video of that will stay close to my heart forever.  I can't wait until next year, when he will walk across the line himself!