The reality of life is that we have good days and bad days. The bad help us appreciate the good. Today was a bad day. I am emotionally spent and raw, and would like nothing more than to go home, snuggle my baby, and go to bed, honestly. I am hoping to write this post as a way of venting so I can move on with my day!
Parker had his Audiology and ENT follow-ups this morning-- which for some reason, we appointments that I thought would be a breeze. His last ENT visit lasted all of 5 minutes and involved a quick peek in the ears and that was it. Today was different, and I am not a fan.
For audiology, Parker is old enough to start doing the behavioral hearing tests instead of the ABR test--which doesn't require anything of him. We sit in a small sound room with speakers and screens on either side of us, and hope that Parker responds physically to the sounds he hears. If he turns to look towards the sound, a screen flashes colorful lights to praise him. Out of about 5 attempts, Parker turned to look twice, partially turned once, and ignored (or didn't hear) the sounds twice. By the end of the test, which also included probing and middle ear testing, the audiologist could said with certainty that Parker doesn't have any moderate or severe hearing loss....Thank God. However, she couldn't tell if he wouldn't respond to the test because of development or because of hearing, so she couldn't rule out mild hearing loss.
SO, we are going to try this test again in January to give Parker some time to grow and develop. If he still doesn't respond well, then we will have to put him under general anesthesia and do the ABR.
THEN, we went to the ENT appointment. This started with the doctor letting us know that almost all children with Down Syndrome have to get tubes because of their ear canals. Because of Parker's shaky history with hearing exams, he thinks it is best for us to move forward with tubes soon--potentially sometime after the next visit. Since we were expecting tubes at some point, this wasn't a huge shock, but did happen sooner that expected. This is considered a surgical procedure, though.
After talking with us, two nurses and I had to hold Parker down so the doctor could scrape out his ears. I know this is by no means a life-altering procedure, but Parker was screaming so badly that he lost his voice. I couldn't calm or snuggle him until it was over...which was an experience that left me teary eyed, shaking, and sick to my stomach. There is no other torture like seeing your baby hurting.
The appointment ended with the doctor telling us that the tubes procedure would be difficult and may require special tubes because Parker's ear canals are so small. They are so tiny, in fact, that when the doctor was scraping out his ears, he pulled 1-2 hairs from inside...obviously adding to the screaming that was already happening. While many would assume this means he is a bad doctor, I trust that he knows what he is doing....he has done procedures and exams thousands of times, and is on the board of and a professor at Northwestern. Still...not a fun Mommy moment.
Luckily, I had some time before needing to head to my half day of work to cool off, and take some deep breaths. Now, I am trying my best to focus on work and erase from my brain the sight of my screaming baby, though I think the effort will be fruitless.
Hoping the next one goes better, and that November's mass appointments (RSV shots, cardiology, neurology, etc.) go a little more smoothly.
We LOVE the GiGi's Playhouse calendars! Parker is one of the beautiful kids on the "March" showcase! It is so nice to see our babies depicted in such a colorful, lively, and inspiring way.
We feel honored to be a part of such an incredible organization...and are so thankful for everything they do for our family.
These calendars seem like fun, cute pictures to most people. To us, they give our son a voice. These pictures are proof that these babies are worth our attention, effort, and support.
Here's to taking things a step past "awareness" and "acceptance" --and on to support and appreciation.
Parker is 11 months old today...the next time a month goes by, I will be able to say my baby has been here a full year! It is incredible to me that the time has passed so quickly. My sweet, beautiful boy is racing into toddler-hood. It is awe-inspiring and heart-breaking at the same time. Every small milestone is a huge achievement in our house, and Parker never ceases to amaze us with his determination and strength.
As the toddler years approach, I can feel "baby fever" slowly creeping back up --I know (Mom & Matt!) that there is still a lot that needs to happen before we think about baby #2. And my thoughts about more children are intertwined with some really complicated memories, emotions, and dreams. I keep picturing a house with little ones running around, but those images are laced with flashbacks from last November and December. I have so many questions and fears.
I want to beg God not to make us go through that experience again, while simultaneously wanting to show thanks for what we have been gifted. I want someone to be able to tell me that our second baby won't have Down Syndrome, while simultaneously asking everyone around us to accept and appreciate Down Syndrome. These are just a few of the thoughts that get stronger and stronger every day that Parker grows and we get closer to expanding our family. These are the thoughts that rob me from my time thinking about and appreciating Parker. And that makes me angry. Because really, at this point, Parker is the role model for me. And my life is all about him...which is how I've always wanted it to be from before I even knew he existed.
He reminds me day in, and day out that he should never be underestimated, and that the power of a smile and a snuggle are immeasurable.
So, for the next month, my goal is to push through every traumatic memory, painful emotion, joyous celebration, and triumphant accomplishment, and allow myself to heal and dream again, and just "get over it." Instead of looking over my shoulder for the next big blow, I want to look ahead at Parker's future...one filled with many more upcoming birthdays, even more love and excitement, and obviously snuggles and smiles.
I love you Parker. Thank you for being so patient and giving to your Mommy.
We so loved having the Raker family come visit us (and can't believe it has already been a week and a half since they were here!). Our beautiful kiddos got the chance to play together, and the Rakers got the chance to explore Chicago post-babies. Our favorite day was Saturday, when we went to the Shedd Aquarium-- our first time there! Although he and Ansley slept most of the time, Parker loved all of the lights and colors! He was enamored with the dolphin/whale area (as was his Mommy)!
Parker got to show off his pre-crawl moves, Ansley got try out Rody, and Roby got to ride the train! Of course, the kids were not the only ones who enjoyed the time. It was so great to get some adult time with great friends, and I might have been more excited about some of the aquarium exhibits than the kids!
We hope to do this again in years to come!
Last week, we said "Goodbye" to Matt's Grandpa, Parker's Great Grandpa, Leonard Glass. He was 97 (almost 98!), and lived such a beautiful life. It was evident by the service and celebration of his life that people adored him. Everyone will miss him terribly, but we are so enjoying imagining him in heaven dancing with "Honey" --Great-Grandma, eating yummy steaks and sandwiches, and discussing the values of a healthy body and attitude with everyone around him.
Here is a video of his first visit with Parker. We miss you, Grandpa!
