GiGi's September

We had SO much fun last weekend at GiGi's! We got to see Miss Hilary and Miss Lisa, and all of Parker's friends.  He got to show off his pre-crawl, and all of the kids got to play on their Rody toys! I love this place, these moms, and all of the ladies who care about Parker so much.  I leave with a full heart every time.

Parker's Pre-Crawl!!!!

Momma-Bear!

I am having a super hard time wearing my mommy hat and teacher hat at the same time today.  As a teacher, I understand well what it is like to be responsible for "all" children, or at least for your own class.  I also understand what it is like to be protective of them, and want to do what is best for them.  On the flip side, I understand the fierce and undying commitment one has to her own children.

So what happens when the needs of my own baby seemingly go against the needs of others?  I try to be flexible, empathetic, and generous when I am able.  Today, I hit a wall with being the nice teacher-mama.

One of Parker's daycare teachers let me know third-hand today that the director wanted her to tell me that I will need to do my Thursday developmental therapy sessions with Parker in her office.  The reason?  Because his therapist used toys with sounds/music during therapy that other teachers complained about, as it was nap time for most kids in the daycare.

Now, at first glance, this seems somewhat reasonable to an outsider.  I know, because I've thought about it for hours (once my momma-bear rage settled).  

However, I am not willing to siphon my baby off to the back office during his therapy, and set a trend for exclusion.  This office is about the size of a closet, and excluded from Parker's class (and all of the others).  His most effective environment is his natural environment.  Who knows? Other kids may learn something too! And Parker certainly learns from them.  

Additionally, his teachers have been somewhat overwhelmed with the start of the year and have been a bit apathetic to learning about him.  Therapy prompts them to ask questions and LEARN about his development, which in reality, is knowledge that will help them understand all children.  

Lastly, I was sitting with Parker and his therapist the whole time.  Two babies in the room were two feet from us, and didn't stir during their naps.  

I think it was wrong for her to try and tell me third-hand through one of Parker's teachers, and to not give me any other options...like a phonecall saying "Hi Megan, would you mind letting your therapist know that it is the daycare's nap time, and to steer clear of the noisy toys?"  How easy could that have been?  I like to think I am pretty reasonable, and would have been agreeable to this, even knowing that musical, light-up toys are Parker's biggest motivators. 

Thank God for the ability to write this out, and remove some of my emotion so that when I speak to her, I can sound like a rational, intelligent adult instead of a furious nutcase. 

 Whew!

New Daycare

I remember so vividly being terrified of sending my baby to daycare. I wrote about it often, thought about it constantly, and dreaded going back to work after having Parker. But we were fortunate enough to have two teachers that absolutely love Parker to this day. Saying goodbye to them was one of the hardest “mommy moments” I have had in a while. With Matt’s new job, driving Parker an hour west and then an hour back east to our jobs would equal 3-4 hours of driving a day, which is just too much for all three of us. Even though Parker would have “aged up” into a new class eventually, it is still so hard to leave people you trust and have grown to care about. All of us cried, and all of us wished it could be another way…:(

Parker’s new daycare is about one minute from my work. As comforting as I thought this would be, it is actually very distracting! When Parker was an hour away at the Sears Daycare, I could more easily push away the urge to run over and snuggle him. I also came to terms with not being at his therapies because there was no other choice. With having him so close, I find myself wanting to be there during my lunch and rushing to get him after school. I do love getting more time with him, though!

The daycare he is at is brand new, and on the local high school campus…which has its perks and pitfalls. It is clean and fresh, and follows my school district schedule. On the other hand, all of the procedures for driving around high school kids, picking up, supplies, etc. are both different for us and new for the staff there. We are still getting used to the changes!

His teachers are nice, but since they are new to the building, and the kids are all new to them, they are overwhelmed….and I don’t feel like they are forming a particularly close bond with Parker (or me) quite yet. They do the best they can to show him attention, but they don’t have the same level of intensity and desire to learn about him and help him in the ways we got used to.

I am hoping as we settle into the school year, we will get closer to his teachers, and let go of the hurt of leaving great people. I am finding it interesting to try and wear my teacher hat and parent hat at the same time and empathize with everyone involved. We will see how it goes!

Therapy Re-Mix

One big change caused by moving is therapy placements. Early Intervention, the state program that assigns us a coordinator to help us locate and employ therapists for Parker, is broken into regions. Usually, therapists only travel to specific regions and have very packed schedules, thus prompting our need to change therapists now that we are living in a new location.

This is always a stressful process for us. Luckily, it isn’t so bad for Parker, as he seems to be happy to be around anyone right now, and isn’t showing much preference to specific people. Being Parker’s advocate requires me to only accept therapists that are a good match for him—both in personality, how they handle him, how they interact with our family, and the tasks they push him to accomplish.

Twice since we have started therapy, we opted to change therapists—and for me, that is an especially difficult thing to do. I hate knowing that I hurt someone’s feelings or made them uncomfortable. But the bottom line is that I am here to make sure Parker gets what he needs and deserves. Thankfully, we have a coordinator that actually conveys the decisions to the therapists!

My hope is that with our new round of therapists, we can get a good, hardworking, and collaborative team together to help him progress. We have already seen our OT, and she seems great! We start DT next week, and are still waiting for Speech and PT. Here’s to hoping for a strong team right out of the gate!

Hiatus...Over!!

The blog hiatus is finally over! Our internet is FINALLY hooked up (and we can FINALLY watch the Breaking Bad episode we missed on Sunday).

Anyway……..have you ever had a time in your life where you felt like something is too good to be true? We are totally feeling that way with our new house.

As is typical for our little family, things seem to fall into place at the last second with only a few nerves to spare. Essentially, we viewed, offered, purchased, and moved into our home in less than a month. Whew! There are still many full, unopened boxes staring at me, just waiting to be unpacked!

Another trend for our family is jumbling and jamming (with a fair amount of fumbling) a lot of big life changes into a short period of time. Matt got a new job, Parker is in a new daycare because of that job, I started the school year, and our house dream has come to fruition after a few years of searching and a lot of hard work.

Our greatest amount of appreciation goes to our families, though. Without their support, encouragement, and excitement for us, we would definitely not be here.

So visitors….come on over!

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.