Now that we have made it through Thanksgiving, Christmas, and are ready to begin a new year, I guess a little update is in order! (I mean, I’m sure you were just dying for one, right?! ;-)) Anyway, we are slowly coming back down to reality after a trip to Disney World with Chip’s family and celebrating Christmas! Next week we are going to have a hard time when school and therapy get started back in full force! Until then, I am soaking up every minute with all of us at home. It is so, so nice to not have to be anywhere “on time,” and to take life at a slower pace for just a little while.
As I mentioned, we just returned (at 2:30 in the morning) on Christmas Eve, from a four day trip to Disney World, thanks to Chip’s parents, (“Gran and Poppa.”) I mainly want to document some about the trip so that I will actually be able to look back and remember one day. I will be honest in saying that Chip and I probably would have otherwise never made this trip, had it not been for his parents’ idea to go and actually making it happen. We would discuss it off and on, and we always decided we probably wouldn’t enjoy the crowds, long lines, pushing Lindsay around, etc. You just can’t say no, though, when the opportunity presents itself! Boy, are we glad we got to experience it, now! The rest of our family drove down together, but we decided back this summer that if we could make it work for the five of us to fly; we would love to do so. The boys have always begged to fly somewhere, so we figured this would probably be their only chance for a long time! Also, the idea of such a long drive with the three of them did not excite us. The fun part was planning all of this without the kids knowing! We all kept it a surprise until two weeks before the trip! My mother-in-law, sisters-in-law, and I would just about die discussing it behind their backs and almost exploded before we could tell them! My sister-in-law created a scavenger hunt for the kids that ended up with the words, “We are going to Disney,” spelled out in the clues! Even once they put all of the clues together, I think it took quite awhile for it to sink in with all of them!
We headed to the airport early on the Saturday after school let out for winter break, and barely boarded the plane before it was time to leave! Oops. Seriously, it was completely a “God-thing” that we were able to go through the fast line that morning at security. Nobody had to remove shoes, fold up the stroller, etc. Had it not been for that, we would have been in what looked to be at least an hour-long line. I’m sure all of the people who were already on the plane just rolled their eyes as we wagged all of our “stuff,” as well as our three kids on board! I was so nervous about how Lindsay would do since she had to sit in her own seat, but she was absolutely perfect the entire ride! She did not make a peep! She was so fascinated by the flight attendants- particularly the one who kept calling her a little “peppermint!” (She was decked out in red and white from head to toe, with her Minnie Mouse dress, red and white leg warmers, and red sparkly shoes.) Because, why not?!! Chip and I sat on different rows, so we sort of mouthed to each other that we would just be the last ones to get off of the plane in order to not delay the people who were overly anxious to do so! (It turned out to be a great thing, because the flight attendants helped us get everything, and even loaded us up with snacks and drinks to go!)
I know many of you have been to Disney with your kiddos, but we just could not get over how easy they make the whole process! Seriously, from the time you land until you come back home, the whole experience is amazing! If you are unsure about something, there is an employee about every five steps to help you! Even the security guards who check your bags are pleasant! (I know quite a few employees around here who could take a note or two! 😉
We met up with the rest of our family later in the day, went to dinner, and started early the next morning going to the parks. For three days, the boys rode everything they could with their big cousins, Parker and Sadler, and had the time of their lives. Since the weather stayed in the 70s and 80s, it was hard to believe we were a few days away from Christmas! We were able to get a “disability pass” for Lindsay, so that she could ride some of the smaller rides without having to physically wait in line for them. I think what she enjoyed the most was watching all of the lights and fireworks at night! I think we all made the most out of every second of the trip, and I am so glad we got the chance to go!
On our final day, the rest of Chip’s family left in the morning to begin the long drive back, while we stayed at the hotel until late afternoon when it was time to go back to the airport. It was almost funny that the boys were swimming two days before Christmas! I’ll say that our trip back wasn’t quite as smooth as the one on the way down, due to crazy weather all over the place! We had several delays in Orlando and several more in Atlanta, so we had lots of “fun” airport time. Fortunately, Lindsay slept, and the boys made an adventure out of the airports! They fell asleep as soon as we got on the plane in Atlanta, and had no idea that we had even gone anywhere when we woke them up back in Nashville!
Now that we’ve been back home for a little over a week and celebrated Christmas, I’ve finally taken the time to reflect on life a little bit. On Friday, when I was getting on the treadmill to watch the VOLS play, I decided to put Lindsay in her stander to give her a little exercise, too. Usually, when I am strapping her in, I have to get a strong grip on her to keep her from falling until she is secured. Not this time!!! I realized that she was just easily standing there, without any help from me! Once I strapped her in, she stood straight and tall for over an hour! She has come a long way this year, because she generally doesn’t appreciate having to stand for that long. And she will let you hear about it! A few days before our trip, as some of you saw on Facebook :-), we got great news from her neurologist! Her EEG showed no signs of seizures, and she does not have to go back to him for a year! Even better news to this momma was when her doctor walked in the door, smiled, and said, “This looks like an entirely different child! She’s so much stronger. The next time I see her, she will be walking!” (He’s not known for smiling or his warm and fuzzy personality! ;-)) He even told me he wanted to take her home, but I informed him that I would have to “hunt him down” if he did that. 😉
One of the things I have read about Pitt Hopkins kiddos is that they all seem to love music. I’ve certainly noticed that with Lindsay, so I try to play as much music as possible. She’s really started to “dance” along with it. Some of you may have seen the video of her dancing along to “Good, Good Father,” by Chris Tomlin the other night. A fellow “Special Needs” momma sent me a message after she saw it, and I wanted to share an excerpt with you. I’ll try not to cry again. 🙂
“I don’t doubt that they’ve told you some terrifying things about what Lindsay’s cognitive potential may be. When I watch this video, it is so so SO clear to me in Lindsay’s face and her eyes that she’s not just dancing and having fun–she GETS it. She understands those words, likely in a way most adults don’t. It’s funny to me that doctors say things about how kiddos like ours deal with intellectual disability, etc., but I see time and time again that their understanding of God blows most ‘typical’ kids out of the water. They comprehend the spiritual on an amazingly deep level. That light in Lindsay’s eyes as she responds to those comforting words is such evidence that she gets it–all the things that truly matter, in this life and in eternity.”
She went on to tell me about a dream she had where Lindsay was speaking perfectly articulate words, and how she couldn’t help but wonder if maybe it was a tiny glimpse from God of what her future might hold. You should know that I read this in the middle of the night, so I didn’t do a whole lot of sleeping after that. (I didn’t mind a bit!) Now, I have those dreams a lot, and so do other members of my family. I cannot tell you what it does for my heart to hear that my precious girl has even found her way into the dreams of others.
I’ve written before about seasons of life. Recently, things have been pretty “sweet.” They’ve also been difficult, as the scope of Lindsay’s disabilities become more apparent. All I know is that our Good, Good Father is in control of it ALL. He doesn’t just “hang” around for the good times.
We have a special privilege that few people enjoy in that we get to watch our girl achieve things in “slow-motion.” As much as that can be frustrating sometimes, I’ll often remind myself that I’m now getting to witness so many of the things that my boys did without me giving it much thought. It is as if God is gently reminding me, “Slow down. NOTICE HER!” I got a plaque for Christmas from my aunt that has one of my favorite sayings on it: “Life isn’t about waiting for the storm to pass, but learning to dance in the rain.” So, in my family, we’re going to dance!
**Thank you, to so many of you who never cease praying on our and Lindsay’s behalf. She is going to do amazing things!
~I wanted to share some of the lyrics of “Good, Good Father”
“Oh, I’ve heard a thousand stories of what they think you’re like/ But I’ve heard the tender whisper of love in the dead of night/ And you tell me that you’re pleased/ And that I’m never alone
You’re a Good, Good Father/ It’s who you are, it’s who you are/ And I’m loved by you/ It’s who I am, it’s who I am
Oh, and I’ve seen many searching for answers far and wide/ But I know we’re all searching for answers only you provide/ Cause you know just what we need before we say a word
Until next time…