Goodbyes...

Parker had his last week at the Bright Horizons daycare, and say "goodbye" to his two favorite teachers, Miss Hilary and Miss Lisa.  It was an emotional day for all of us...as letting go of people who love your baby is a hard thing to do.  Out of all of us, Parker will probably handle the transition the best!  We know that we will see them again soon, though, at GiGi's events, babysitting, and hopefully Parker's birthday!  Miss Hilary wrote a beautifully heart-felt letter for Parker's new teachers, which I thought was such a nice gesture.  I am so happy we got the chance to be with these ladies, so we know what "the best" feels like, and have high standards to compare to.

I would by lying if I said I'm not nervous about his new daycare.  It is always tough to teach new people about Parker, and difficult to trust new caregivers to love and connect with your baby.  It is a new set of parents that will have to learn about him, and a new set of professionals to believe in him.  

And as grateful as I am that he will be close to my work now, I do think it makes me even more anxious to pick him up and even more conscious of him during the day --whereas with Matt taking him so far from my work, I was able to disconnect a little more and leave the mommy-guilt behind some.

I am sure every mother's hope is the same...that caregivers and teachers UNDERSTAND their child(ren), and take that understanding a step further by believing in and loving them. 

Two Steps Forward....

Today, I reminded myself that sometimes, it is okay to take a step back.  I love going to GiGi's...and the moms that go there have become my community and safe place.  But at the same time, it is really hard to be there and see faces sometimes barely masking the pain and exhaustion this journey sometimes induces.  It makes me wonder how often someone catches it flash across my face.  For me, as anyone who knows me could guess, when I am surrounded by beautiful babies, life is good.  It is the teenage and adult world of Down Syndrome that terrifies me.  And it is the scary health issues that threaten our kids that wear on us all.  Our group has learned that too well recently, and the way we have supported one another makes me so proud and comforted!

I held Parker tonight, and he was giggling, happy, and his usual spunky, adorable self and just cried.  I cried for the unfairness of Down Syndrome for him, and all of his friends.  How they deserve lives full of health and experiences that I deem to be great (marriage, kids, homes, family, etc.).  I looked at the house we are buying...and thought of how great the kitchenette in the basement is...but wished that there was a bathroom...in case Parker wants to live there when he is older.  No one should have to think of that when they buy their first house.  I don't want that for him.  I want so much more for his life.

And yet, as I type this....I can count all of the "me's" and "I's" that are glaring in front of me...like flashing neon signs.  On one hand, I shame myself for the selfishness of these thoughts....and almost don't want to post them on here.  They are embarrassing, and really make me feel vulnerable.  On the other hand...I will press the little orange publish button to remind myself that it is okay to FEEL on this journey.  And also that this process of accepting, grieving, persevering, persisting, and soaring will never be finished...it will always be evolving, will always be emotional...and probably a bit selfish at times.

I just pray (with a whole lot of begging) that Parker is HAPPY in this life, even if his happy presents differently than mine.  And I hope desperately that Matt and I can find peace in that, and leave him with support and a community of his own.

Your heart truly lives outside of you when you have a baby.  I think my heart is just going through a little bit of weathering before it can really survive on its own out there.  Good thing I have a sweet, chunky baby to help me along the way!

House, House, House!

This has been one unbelievable week for the Preis Family!  On Sunday, we went house hunting for the millionth time, and actually saw a house we really liked (finally)!  Like anyone would, we wanted to go back and see it another time.  Long story, short --we ended up in a 3-way bidding war after only having seen it the one time.  After a higher-than-we-wanted offer, a little luck, and maybe some begging, the sellers accepted!  We had a successful home inspection today, with some minor repairs needed...and are so excited!  We are definitely counting down to closing day!

We had a few snafus this week with P's appointments.  He was supposed to have had his MRI and MRA under anesthesia yesterday, but they got cancelled due to a few scheduling errors at the hospital.  The appointment is rescheduled for mid-September (ugh!).  Hoping to get it over with once and for all.  We also went to try on his glasses on Thursday...which were way too big, so we sent them back to get the smaller frames! He has one more week of freedom before he enters the world of ophthalmology for good!

I was lucky enough to have my parents come in for the inspection today, since Matt was out of town, and even luckier to have it be a GiGi's Saturday group!  They got to meet some of Parker's friends, see GiGi's, and learn about some of the therapies that he has.  We even got to meet some new families from all over the country!  It is always so fun and easy to be there with everyone...the one place I can take a breath and relax, knowing that everyone else there knows exactly what this journey is like. 


Over the next few weeks, as long as all goes well with the house, we will be packing (and packing....and packing), moving, and pushing forward to new and exciting moments for our little family.  We are so excited, a bit nervous, and quite overwhelmed!

Time Crunch!

We are really trying to jam in any doctor visit or test that we can before I go back to work --only one week of precious summer left.  I am avoiding the thought to try and spare myself the heartache and anxiety that I have not missed one bit.  

On Thursday of last week, we saw Parker's ophthalmologist (I have subsequently learned that in every single post I have written about the "eye doctor" -I have spelled this word wrong!).  We heard as we expected...Parker needs glasses! Yes, to those unfamiliar with the world of ophthalmology like me, they do make glasses for babies that are safe and even a little cute!  The best glasses for kids come from Miraflex, a company that realized that metal frames and tiny, curious, sometimes frustrated hands/faces do not go together.  These glasses are made with kid-safe lenses that won't break if thrown, chewed, or lost in the depths of the couch, and frames that are flexible and rubbery.  We ordered Parker a cute blue pair that we should be getting soon!  

On Friday, we had his "sleep deprived EEG."  This was no fun for anyone...but the rough moments really crept up on us sneakily.  Matt stayed up with Parker until midnight, which wasn't nearly as difficult as expected.  They ate and played until Parker fell asleep on his playmat promptly at 11:57pm.  I had morning duty starting at 4:00am.  Since I went to bed at 9:30 the night before, it wasn't horrendous to wake up at 4.  Parker played for a few hours in the morning...with the occasional attempt at snoozing when I would walk away to put something in the kitchen. 

Really, the hardest part of being sleep deprived (for all of us!) was the car ride.  Unfortunately, this procedure required us to drive down town, close to rush hour.  So it was about an hour drive...with all of us running on 4-6 hours of sleep.  It was nearly impossible to keep Parker awake...and I quickly realized that sitting in the back seat with him and trying to act like an idiot to keep him up really wasn't effective.  All in all...he slept for probably about 10 minutes of the ride...with maybe a few snoozes here and there.  I count that as a success!  

One thing I didn't like, and really don't understand upon arriving, is that the EEG technicians only allow one adult in the room with the child, so Matt had to wait in the reception area.  The rooms were plenty big for the procedure, but I'm sure they have their reasons. 

The tech started the procedure by taking a big Q-tip with cleaning gel and rubbed it pretty forcefully in about 20 spots on Parker's poor little head (that I was holding tightly).  She then added a paste--which I am convinced was a version of those glue sticks we used in school and pushed down an electrode into the glue, with a piece of gauze on top...again, pretty forcefully.  By about the 5th or 6th electrode, P had reached his breaking point.  He was pretty unhappy for the rest of the electrodes and the surgical tape that pressed them down! Finally, I was able to jump in bed with him swaddled, and give him his bottle...in the pitch black, laying in a bed.........in the pitch black.  Guess who fell asleep first?  Just kidding...he did, but I wasn't far behind him.  

P was allowed to sleep for about 40 minutes while being monitored by the computer system.  I appreciated the 20 minute power nap too!  He was rudely awakened by strobe lights, loud claps, unswaddling, and many, many more strobe lights.  He was surprisingly calm during this, and even giggled and laughed a few times.  Really, it was the removing of the electrodes that was the worst part, and lasted throughout the day and weekend.  The tech soaks the tape and glue until she can pull them out and rub out the glue the best she can.  She assured me that soap and water would take out the rest at home...but I was skeptical.  All but two tiny parts of glue did come out, though, which led us to need to cut teeny pieces of hair at home.  

Really, the babe was a trooper...as always.  He only cried if in pain, and even that was pretty short lived considering.  If someone yanked me out of bed after 4 hours and did all of that...I would probably be throwing punches!  Love this boy...and am always so proud of him.

DT and OT

Parker had his first week with all four therapies in place!  He had developmental and occupational therapy for the first time.

In occupational therapy, Parker is overlapping a lot with physical therapy until his core is strong enough to begin more fine motor skills.  He is working on bearing weight and sitting up, as in PT, and on grasping and reaching for objects around him and in cups or smaller locations.

Developmental therapy has been both of our favorites so far.  Our developmental therapist has a PhD. in development, but is considered a music therapist.  She uses songs and instruments to help Parker learn and develop.  Since he loves music, this was a hit for him, and I really enjoyed learning too!

Overall, this was a pretty exhausting week for both of us.  I am getting anxious about going back to work and somehow fitting in 3/4 therapies a week.  My mantra at the moment is just to do the very best I can, and just breathe.  

Neurology

Whew... these appointments are happening faster than I can write about them!  We have officially added Neurology to our ever-growing list.  

 Parker had a neurology referral because of a few different red flags, but mainly his nystagmus- which is involuntary shaking of one or both eyes.  This can either be localized to the eyes, sometimes indicating low vision, or can be a symptom of a neurological issue.  Neither sound great to me!

His neurologist has recommended that he get an MRI and MRA of the brain to make sure Parker is in the clear and also to rule out a blood vessel disorder called Moyamoya.  He is also having an MRI of his eye orbits.  Those are all done under sedation...which makes this mama very anxious.  I can't feed hom anything for more than 4 hours...We have pushed to get this appointment done before school starts...so Monday it is!

The other test his neurologist wants done is an EEG.  This studies his brain waves to rule out any seizures or abnormalities.  This is done while Parker is "sleep deprived" to force any potential issues to show themselves.  Go ahead and ask me how you sleep deprive an infant......okay I'll give.  To sleep deprive Parker, we have to only allow him to sleep from midnight until 4am...this includes keeping him awake for the car ride downtown. This one isn't as nerve wracking as sedating him...but sure is exhausting to even think about.  This one is Friday! 

So...I will be scouring the Internet for tips on withholding sleep and food from an 8 month old...yikes!  Keep us in your thoughts, as these appointments are likely to be hard on the whole family!

Lucky!

Through GiGi's Playhouse, I have found an amazing group of moms!  We have thankfully created a little community, passing on advice, suggestions, wisdom, frustration, and pride throughout each of our individual but similar treks through the special needs world.  Our babies are fortunate enough to grow up together and know that they are never alone and always have a village of people supporting them.  So, I consider myself lucky!

The picture below is of some of our group after one of GiGi's Playhouse LMNOP classes --a signing,singing, and learning class that we have been fortunate enough to be able to attend this summer.  Thank you ladies, for including Parker and I!

3rd Anniversary

Finally, 17 days later, I am getting the chance to talk about our anniversary!  To be totally honest, after a year where we really needed to celebrate our marriage the most, we didn't even get to be in the same state!  Bummer!  Matt began a new job on July 1st, and being in-between trips (New Jersey and Columbus), it didn't make sense for me to drive an extra 10 hours with Parker to be in Chicago for 2-3 days.  We are still working on a good way to celebrate!

I remember very clearly last summer taking a deep breath, and relishing in the fact that we had made it through 8 months of long distance, the uncomfortable first trimester of pregnancy, and a huge, life-changing move...and how I anxiously awaited our baby boy.  I kept waiting and waiting to take that sigh of relief --waiting for when things would finally feel calm and comfortable.  I think I am still waiting!  In my heart I knew that our challenges were not over yet...I just couldn't grasp how they would unfold.  

A dear friend of mine mentioned to me once that having a baby, as much of a miraculous gift as it is, can make cracks in a marriage be exposed as if they are canyons. I definitely think that can be true.  Couples many times need to relearn how to navigate their relationship and how to communicate again post-baby --with quite a bit of exhaustion, snuggles, and spit up involved.  I also think having a baby with special needs can sometimes carve out those canyons with fear, pain, anxiety, and some more fear.  We had a lot to learn, and an abundance of "new" in our lives.

That being said, the last year was the best gift we have ever been given as individuals and as a couple...it was just wrapped deeply in a lot of packaging that took some time to unravel. Every day we look at Parker, and then each other, with pride and endearment.  We are not without imperfection or the "canyons" that arise as a part of parenthood and simultaneously navigating the special needs world, but we are stronger and more determined than we ever have been before.  My husband works SO hard for us, and seeing him with Parker just makes me turn to mush. 

We are ultimately so lucky to have one another, and to be surrounded by so many strong couples that set incredible examples for us.  We are deep in the eternal and continuous adventure of appreciating the intricate, breath-taking, humbling pieces of our marriage.  I love you, Matt, and this crazy journey we so take for granted!  To many, many more years....!

Summer Trip 2013- #MegPlusJace

The Law/Hunter wedding was a blast!  Even though it was hard to leave our little man behind (and got many inquiries as to why he wasn't there), it was fun to spend some more time with the girls I love and so seldom see, and to have an evening "out" with Matt.  

The "girl time" started off with picking up Allie and Kalyn from the airport! Woohoo!  There is such exhilaration that goes with picking up friends or family from the airport-- you just know that there are good times to be had.  We spent the night catching up, and relishing in the fact that this has been an "on" year-- with more opportunities to see each other than normal.  

Early Friday morning, I kissed my chubby-cheeked babe goodbye and we headed towards Columbus for a fancy day of pampering...mani-pedis and eye brow waxing have been luxuries I just haven't had time....or let's be honest...energy for over the last year or so.  We got dressed up, and went to the rehearsal dinner, which was of course beautiful and delicious!  It was so much fun to see Meg so excited about the whole weekend, and the Law family is always a blast to be around.  I felt lucky to be included in all of the festivities!

After the "welcome reception" at the hotel that evening, we headed to the Law house for a sleepover before the main events began.  

Saturday morning, bright and early, we got ready, and had time for more luxuries!  A yummy breakfast filled with Meg's "11 favorite things," updos, and makeup!  It was such a girly morning and I loved every second.  Just as the night before, Meg's excitement was palpable! 

We headed to the church and Ohio State House for the pictures, ceremony, and reception.  Every event was planned perfectly and went off without a hitch!  Both the church and State House were gorgeous!  We had so much fun dancing, catching up with college friends, and staying up past 10:30! 

Aside from the beautiful ceremony, one of the most touching things that stood out to me was the closing song of the night.  I've posted before about Zach Sobiech, the INCREDIBLE teenager with cancer who lived by philosophies that we could all learn from.  He communicated his love for life and his family through music, and the closing song of the night was one of his --Clouds!  We also had the honor of hearing one of his good friends play the violin during the ceremony.  It was just a heartfelt thought that really captured the upbeat, love-filled feel of the day.

Summer Trip 2013- Springboro

After 9 hours of driving -we finally made it back to Ohio after being in New Jersey for a week.  It is and always will be a bittersweet drive.  There is a part of me that is still 12 years old and hates the "Welcome  to Pennsylvania sign" and 70 West.  I have to give big kudos to my mom who volunteered to ride back with us.  Our family trips always were about speed and stops were few and far between --so traveling with a baby is a little different.  Parker made it 8/9 of the way to Springboro without a peep...but made up for it that last hour!

We spent Tuesday and Wednesday recovering and relaxing a little bit!  We had a visit with the Zimmer girls, Tammy, Ashley, and Lexi- which is always a blast! They loved Parker and of course he loved being fawned over by cute little girls! 

Tuesday night, we got to go see George, Joe, Jen, Eric, and sweet baby Nora --who is just beautiful, and so so tiny! It is amazing how you forget what a newborn feels like, even though you just had one!  It was great for Parker to meet so many more friends that already love him!

Wednesday July 3rd was our 3rd wedding anniversary!  We were both really bummed that we were apart on it, though.  More on this later!

Thursday was really spent getting ready to be away for the weekend for the Hunter/Law wedding!  We pureed food, showed Nonna and Grandpa how to make bottles, organized the mountain of "stuff" babies seem to attract, and got ready to pick up Kalyn and Allie from the airport!  I am always sad to leave my baby, but at least glad it was for something so fun!

It was nice to be in Springboro, and so good to see so many familiar (and missed) faces!