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:

Whew! Find the Balance....Breathe.

This Spring has been crazy and shows no signs of letting up for summer.  Parker is getting big so fast, I just want to freeze time before it all goes flying by.  We are so very much enjoying the warm weather-- though it is about to leave us again for a few days.  We are excited for the summer when the threat of being cold is out of our minds for a while.

This school year has been especially hard in terms of balancing family and work responsibilities.  I have found myself struggling with being great at either one, which is a hard pill to swallow for me.  For some reason, I have been under the impression that as Parker gets older, his appointments and checkups will decrease, and that has just not been the case for us.  While I love being in Chicago, which sometimes feels like the expert doctor hub of the region, we have found that the doctors around her often travel from hospital to hospital around the area, and are therefore only at hospitals near enough to Parker's daycare once or twice every few weeks.  This ends up meaning a new appointment on a new day every time we have a checkup-- even if the appointments are at the same location.  Matt is having a hard time with this with his new job, and I have maxed out on my sick time at work-- unfortunately, my job does not allow me to leave an hour early one day and stay an hour later the next.

We have accepted the fact that we still have ugly curtains up in the living room that were here when we moved in, have weeds overgrowing our back flower beds, and have the long lawn of shame in the neighborhood.  We try to keep up appearances, go out with friends/family, work out (ha!), etc., but sometimes just fail at doing what we "should" be doing.  There are some nights when the anxiety of not doing enough for Parker is suffocating--- the "I should have..." or "I need to..." thoughts are so overwhelming.  We are trying the best we can to keep up, but some days just result in lazy couch evenings, or on tough days, some tears and a good book to escape a bit.  Parker is such a good model for us-- he is so resilient, even when the appointments we go to cause him discomfort or pain.

At this point, we are trying to determine what we can take off our own plates to keep life manageable.  Do we hire a lawn service? Do we try a cleaning service?  Who knows.

It is also no secret that I have always been looking forward to becoming a mother, and get a strong baby fever, which set in a few months ago.  After the past few months of strain and appointments, we have decided to hold off another year on baby #2, as much as it hurts and is scary genetically to wait.  We feel like emotionally, we are barely getting by, and have some work to do to re-prioritize our lives to remove some of the stressors.

Needless to day, I can't wait for my 5.5 weeks off this summer (I agreed to work 4 weeks of summer!).

Contacts: First Attempt

For the last several weeks (or really, months), we have been in a battle to understand what is going on with Parker's eyes and vision.  At this point, we know he has astigmatism, nystagmus, and extreme nearsightedness.  We have been passed from doctor to doctor, with no real understanding of what is "best" for Parker.  After Parker's glasses failed because of being too big for his face and him pulling them off, his original doctor started considering and suggesting contacts.  As a side note, there ARE glasses for kids with Down Syndrome and their face shape, but the ones that fit the best are wire frames.  Parker is at the very-clumsy-toddler-trying-to-walk stage, so they are not comfortable having him wear these. 

Our original doctor set us up with the procedure to measure his eyes and get appropriate measurements along with his ear tubes and hearing test.  At that point, she passed us (without telling us) to a new doctor.  We could tell this doctor was slightly uncomfortable with contacts in a 17 month old, but really couldn't tell us one way or another what the best option was for him.  She left the ball in our court to make a decision...which I have to say, is infuriating!  She referred us to an optometrist, who is working with us to fit the contacts and get backup glasses for Parker.

This particular doctor has explained to us that, yes, contacts are the best option for Parker because of his unique visual issues, but she is not sure about the best type of contacts.  I do feel comforted by the fact that she has contacts in her own infant's eyes for his visual issues.  We went in Wednesday to try the first pair ordered, thinking we would go home with them and start using them.  Getting them in Parker's eyes was sheer hell.  Matt and I held him down and comforted him, the doctor attempted getting the contacts in, and the technician held my iPhone to play a visual/music app to calm and distract him.  After much fighting and screaming, we got the contacts in...only to have one of them pop out within the first 2-3 minutes of wear.  

Thank God, getting the contact that fell out back in was easier than the initial attempt.  Once the contacts were in, the doctor was able to measure his vision for a great improvement.  Parker was wide-eyed and very taken-aback by the sensation, though irritated that he could feel the contacts.

SO, ultimately, we wait another 2 weeks for "tighter" contacts to come in, so Matt and I can be trained on taking them out and putting them in.  YIKES.  The bottom line is that Parker MUST be able to have clear vision to process his environment appropriately......and we will do whatever it takes to get him to that point.  

Man, sometimes this "Mommy" stuff is hard!  I wish the kid could be cut a break or two, along with all of his friends!