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!

Annie Golden Heart

This week has been hard.  Really. Really. Hard.  Last Wednesday morning, our little community lost sweet Annie.  Not much in this world is more devastating than losing a child.  I have to say that our "moms' group" has banded together in ways that I am so proud of and admire so deeply.  And though in some cases, the (now) 22,000+ people that follow Annie's page on Facebook acted rashly or offensively, I am ultimately proud of that too.  The Down Syndrome community is one of warriors and fierce advocates who have the power of technology to help in uniting the force against any injustice that might plague our little ones.  

Annie's service was beautiful.  We wore red flower bracelets in her honor, had our kids there to support us all, and released balloons that reminded us all that just because Annie can no longer be seen doesn't mean she isn't with us.  Her two older sisters were more courageous than I could even comprehend.

For now, I find myself imagining Annie with her angel wings, in a pink dress, giggling and dancing in Heaven, free from suffering and pain.  I know it is unimaginably hard for her family to wake up each morning without her, and how much hurt and anger they must feel.  I am so thankful to them for bringing Annie into all of our lives-- she was a brave, strong little girl that deserved many more painless days than she was given, but taught us to smile through it whenever possible, all the same.

We love and miss you, Annie Golden Heart. 

Parker can SEE!

 The contacts have been in use for about 2 weeks!  We have had a hard time with them, as we somewhat expected.  But the benefits far outweigh the drawbacks...though you may have to remind us of that on tough nights!  We tried soft contacts, with no luck, and switched to hard contacts.  The benefit to these is that we can leave them in longer, they provide a little bit more focus for Parker, and they are slightly easier to take in and out.  

We VERY quickly realized that it is just about impossible (unless you have about 6-8 hands) to do anything near Parker's eyes while he is awake.  Thankfully, we are able to do just about everything we need to while Parker is asleep.  We also discovered that it is REALLY hard to take out someone else's contacts, so we use a mini plunger, one that you might expect to find in a doll house, to take the contacts out.  

The scary times are when the contacts get stuck-- the right one doesn't have a perfect fit, and easily becomes dislodged and stuck in the corner of Parker's eye, and knowing that since he only cooperates while sleeping, if there were ever an emergency, we would be left helpless without outside help.  

But the benefit....Parker can see!  In less than two weeks of consistent use, Parker has learned how to put things in and take them out of a bucket, play mini-basketball, and launch for people who are across the room!  It is so incredible to watch him develop so rapidly, though it is very difficult to manage the emotions that come from "what if..." questions, like "what if we had gotten these 6 months ago?"  I suspect that will be a recurring theme that I will need to work on!

Basketball: