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.
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!
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!
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.
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.
