They might have missed the last day of school, but I taught my kids today!
The lesson?
MODES OF TRANSPORTATION
we took a car, a plane, a taxi, the subway and finally a pedi-cab, with lots of walking in between. (And as a side note, the poor pedi-cab driver was a sweaty mess when he got done hauling the four of us 14 blocks! I gave him a nice tip, and it was worth every penny because I can’t remember the last time I heard my kids giggle so hard they couldn’t stop. Of course, some of the giggling was because we came so close to hitting someone or something……) we got to Times Square and (part) of Rockefeller Center today. Pretty good coverage for half a day;)
They are sleeping soundly now. (They should be, it’s almost 1am.) We’ll be up early to get to the hospital by 7:30 for Caitlin’s MRI. That should take 2 or 3 hours though. Maybe an appointment with the neurologist after? (No results till Friday when we see Dr. Mark.)
Then, we (and by “we” I mean “me”) hope to grab hotdogs at a vendor near Central Park and we can spend a good part of the afternoon at the Central Park Zoo and exploring the rest of Central Park when the zoo closes around 5:00.
love, d
PS- I heard a rumor my girls were BUSY with golf tournament prep work today, and that they’ll be at it again tomorrow evening. Thank you again, to each of you for the continuous hours and effort you put into making something happen for our family. I love you, from the depths of my heart❤
Because I’m doing this!
Yes, I am!
We are leaving on a flight this am to NYC. It’s likely our last trip for the next several months. Caitlin has her 30 day post-op MRI very early tomorrow morning. We should finish up by lunchtime and then have the rest of the day to play and explore! Friday morning we go back to see the physicians, and then come home late afternoon.
Cole and Courtney are behaving well, and are so excited! Caitlin is thrilled to have them along! (Yes, we left the Bull home with Starchild and some sleepovers at Nana and Pop’s. And daddy has to work:(
Check back over the next few days for pictures of our adventures. We find out MRI results on Friday.
Love, d
Hi! Thanks for asking about the golf tournament. It is on June 10th. If you are on Facebook, visit the Cheering For Caitlin page to download a flyer. Or for more information please call Ashley or Sharon at Starchild Academy in Oviedo. Their phone number is 407.977.8989 and their website address is www.starchildoviedo.com. They have an icon “Driving for the Downings” on their home page. If you click on that the golf tournament brochure and registration form will come up.
Thanks again for being interested! (The resort is family friendly too. A lot of us will be there in the pool and water areas with the kids while the tournament is being played! Fun for the whole family;)
A Lesson in Humility
I write this update as Caitlin sleeps in my lap, as we taxi down the runway and prepare to take off and venture to You Nork before the sun even thinks of rising. Caitlin has been well, with only a few headaches. Today we have appointments at 10:00 and 11:00. No scans or bloodwork are planned for today. We are scheduled to fly back to Orlando tonight at 6:40. So, if we finish the way we expect to, we may be able to get lunch at our fav restaurant Serendipity, or wander in Central Park for a bit.
It has been several days since I’ve been able to write. It is not for a loss of activity or reason, but simply a loss of ability to put my thoughts into words. I’m still struggling, but I know that I need to say what I’m feeling.
A few months ago I begged God to allow us to celebrate Caitlin’s 5th birthday. Well, Saturday we celebrated Caitlin’s birthday. And by celebrate, I mean the biggest party a little girl has ever had for turning 5 years old. It was only possible because of Doubledown Athletics, and an amazing troupe of incredible friends led by a very special woman. People and organizations donated and volunteered their time, their money, their services. It was fabulous, and we are overjoyed by the people who came to help us celebrate. (Lots of pictures have been posted on the Cheering For Caitlin Facebook page.)
Since January I have been more self absorbed than I ever was before. (I know you will say I’m entitled, but that isn’t the point.) In the past week and a half, I have been more tuned in, more aware of the little things and details that (in the past) I have never missed. Yesterday, while I was (sit down) spending a couple hours doing something for myself with some friends, it hit me like a speeding truck.
I have tried repeatedly to explain the gratitude in my heart. Those expressions have been true, honest and completely genuine. We would not have carried on if it weren’t for all of the incredible people doing incredible things for us, with us and because of us in the last several months; both near and far, large and small.
But, in the past 10 days I’ve started to understand something a little more “real.”
I know the manpower it takes to do anything extra ordinary (that’s not a typo). Any kind of event or special engagement requires planning, gathering and “doing.” I’ve typically been on the helping side of those kinds of happenings. But recently, well, it’s a new experience.
Those close to me have been collecting, building, asking for what they needed to make one more day amazing for our family. And they have been doing this while also going to work/running their own businesses, juggling their children’s schedules, and dealing with their own “stuff.” I’ve witnessed it now, even though it’s been going on for months.
A conversation with a friend revealed the start of my eyes opening. Busy with all her own things, she was taking a sliver of free time and running an errand at a shopping center somewhat out of the way from where we live. When I asked why she was going all the way there, she explained it was to gather the necessary items she had obligated herself to bring to Caitlin’s party. And there have been more. Yesterday a conversation with a different friend resulted from her receiving a call/text from a friend close to both of us. They were talking about golf balls. Huh? They were talking about which one had secured a donor for the golf balls for the golf tournament “Driving for the Downings” in June. We asked if she wanted to meet us for lunch since she wasn’t working yesterday. Her response? “I have to pick up a donation for the silent auction, run 2 more errands (for the golf tournament) and I’ll meet you at Chilis if I can get that all done.”
The first friend then gushed on in excitement about how thrilling the planning for the golf tournament is for her. She talked about hole sponsorships and 4-somes that are quite personally provided and paid for.
I cried. I cried for the gratitude in my heart for what I was discovering, and for the gratitude for all that has been taking place that I’ve “missed” being observant of. I cried for my friends, and for so many more that continue to give up their own free time to make time and expend energy, and call in favors and request help for my family, my child.
I cried then, and a few more times since then, at the edge of embarrassment I seem to stand on. I’m embarrassed for my lack of seeing things with more clarity from the beginning of this journey. I’m embarrassed for my absolute inability to find a way to express my infinite gratitude for the big things, and also for the time it takes for you to text me, email me, reach out to me and pray for my sweet daughter and my family. I need to express this thanks, and I desperately need for each one of you reading this to understand this thanks.
I am humbled. I am so very humbled, by each one of you.
Thank you, from the bottom of my humbled soul.
With love, d
Thank you for your UNBELIEVABLE birthday wishes. I haven’t seen all of them yet because of the hectic nature of our day. But I will see them all before I fall asleep tonight. And tomorrow Caitlin and I will look at them together, without the stress of procedures and appointments and planes.
This is a picture of the treatment team at Caitlin’s Sloan Kettering birthday party. That’s her, with Dr. Mark (Souweidane), Dr. Kramer, Miss Maria, Miss Vanessa and Dr. Lightner. They are a great team of clinicians!
Thanks again for celebrating Caitlin with us!!!
all my love, d
Sometimes,
That’s not right…..
Most of the time, I could be described as somewhat controlling, leaning toward the OCD side of personalities, and maybe a little too anxious too. These aren’t qualities I like necessarily, but I have come to learn that they are a part of what makes me up.
Lately, I’ve been so anxious that my stomach muscles hurt. My insides feel like a snake that is all coiled up, waiting to attack. And that last second before it attacks, when the snake holds it all together with the knowing it will explode to strike out……it’s almost painful the strength it takes to hold that energy in check. That’s exactly how my gut has felt for the last 3 weeks.
Today we ventured out early to You Nork. Caitlin was a trooper, swinging her colorful skirt and head of pink hair. She only stopped when it came time for an IV start and blood draw. She cried, and was so pitiful. But, she got thru it like a champ, and as always, said thank you to the nurse who performed the procedure. We met with the treatment team, who thru Caitlin a Sloan Kettering birthday party, complete with presents, cards and chocolate frosted donuts with sprinkles! They raved about her progress since surgery and how pleased they were with her ability to return to a baseline neurological status in just 2 weeks. Then, off she went, running ahead of me to MRI. Oh boy! Almost 3 hours later, I lifted a crying Caitlin off the MRI table and headed out of radiology. I texted Jeff, “She says her head hurts, and her body hurts, and she’s complaining of aching.” His reply came quickly,”That’s fair Denise. Anyone who had to stay in one position that long SHOULD be aching and hurting.” Back to the clinic we went, for an IV removal and rounds of hugs good bye until next week. And then the birthday princess decided that out of all the incredible places to find food in You Nork, she wanted chicken nuggets from McDonalds. (Ugh!) A call from the hospital had us back to speak with another physician quickly and out the door to catch a cab and our plane home.
It was 3:40. We would easily be at JFK by 4:40, 2 hours before our flight left. (See the controlling, OCD nature I’m referring to?) Well, here is a travel tip if you’re ever in You Nork and need a cab to the airport between 3:40 and 5:00…..YOU CAN’T GET ONE TO TAKE YOU THERE!!! I’m not kidding, 11 cabs stopped and when I told them JFK they laughed, shook their heads and drove off. By cab #12, at 4:05, I cried. The cabbie must have felt bad, because he said he would give me directions and drop me off at the subway station, explaining no one would take me to the airport until after change of shift at 5:00. So we fought the traffic, fought the rush hour craziness of the subway system, and rushed, rushed, rushed to the airport.
When the crowds thinned out a little I looked down at the little body attached to the hand I was dragging thru You Nork, and she was skipping. She was dancing, and twirling, and giggling. She was looking at me with big green eyes saying,” I LOVE being 5 years old!” She was smiling at strangers who were in obvious awe of her happy nature. She jumped and hopped and watched her skirt bounce and flounce every time she did that. And that fast, in less than one second, the snake was deheaded. It was gone. Seriously finished.
I slowed down. I stopped pulling her arm out of its socket in my hurry. I laughed with her. I watched her skirt bounce and flounce too. I lifted my arm up so she could dance and twirl underneath it. I giggled and smiled as she laughed louder. Suddenly, something was more important than making that flight, or my strict schedule for us. The only thing that was important, at that very moment, was that I loved Caitlin being 5 years old too.
We made our flight, even with the pause to dance and skip and laugh. We even had time to get sandwiches to take on the plane for dinner. And the snake hasn’t recoiled.
I’m sure it will again. And I’ll still keep my time frame of “appropriate” arrival times for departing flights. And there will still be order and structure. But today, my 5 year old taught me those aren’t the only things, or the most important things…..
We also have to take time to dance…..
Jeff spoke with one of the primary physicians in the clinical trial Caitlin is participating in. She reported to Jeff that there are no signs of anything that would appear to be harmful or a reason for cause of Caitlin’s headaches. That’s good news. There is also no change in her tumor. It hasn’t gotten bigger. It hasn’t gotten any smaller.
I won’t let the snake ready itself for attack over that, not yet. We get another scan in 2 weeks. We’ll worry about that in 14 days.
We’ve got to get our party dresses on…… Someone I know is celebrating her 5th birthday…..
grab your child, grab your pet, grab your co-worker,
and go dance, and twirl, and skip……
you’ll be amazed at how good it feels!!!
love tonight, lots and lots of love, d
What a way to start the day! As we pulled out of the garage this morning at 3:40, a still pajama clad Caitlin shrieked as my headlights lit up this gorgeous display on the front lawn!! Thank you to our “secret” birthday surprisers!!
It certainly is a reason to celebrate today. I wasnt sure we would get to today. But, thankfully we have. ❤
And what better way to celebrate your 5th birthday than in a brand new,fun and sassy, Hello Kitty outfit and pink hair! (thank you Assenmachers and Coach Terri!)
We thought today would just be a routine follow up, without scans or procedures. But, after speaking with the medical team yesterday, they have decided Caitlin should have an MRI today because she has been having daily headaches. So, my anxiety has kicked up a notch or two (and some of you thought that wasn’t possible!)
We won’t be home until late tonight…..but we will be home! And able to sleep in our own beds, to wake up to the wonderful chaos of 4 children and a couple adults trying to get out the door on time. (Never happens by the way)
Thanks for all the birthday wishes you’ve sent ready, and the emails and texts for a good trip!
With love and a celebratory heart this early morning, d
(I have been slow to answer emails and texts in the last few days- please don’t think they are unimportant….that’s not the case! They mean the world to me! xoxo)
Monday May 14th
What a great Mother’s Day! So much love, and time spent with our families!
Caitlin continues to do well since we returned home. She is sassy and happy, skipping, and dancing and laughing. With the exception of an (almost) daily headache relieved with Tylenol, and the bald spot on top of her head, she’s just being “Caitlin.” And we love to see that!
Thursday will be a great day of celebration for us as Caitlin turns 5. We will celebrate during the weekend, since Thursday will also find us back in NYC for a day of follow up appointments.
Thanks to Marni Jameson at the Orlando Sentinel for a beautiful article in Sunday’s paper. And thanks to each of you, again for your incredible support and love. We meant everything we said in the article and in the video.
Finally, I wanted to let you know something. Some of you have kindly and thoughtfully reached out to us through the “ask a question” section on the blog. Unfortunately, in order to answer or respond to those caring messages, it would have to be entered as a blog post, and often times it would be more appropriate for me to respond privately. So, for that reason, I am asking that you please email me so I have a way to communicate back to you. My email address is denisedowning31@yahoo.com
With lots of love, d
A reporter from the Orlando Sentinel came to the house yesterday. She was kind. She asked questions; about Caitlin, our experience with her medical condition, the community, our trip to New York.
Her questions started off quite simply. I was immediately at ease and able to give answers without having to think too hard to get my thoughts together.
“Who is your community? How do you define it? What makes it up?”
Another easy question, I assumed. And I started to answer,” Our friends and family, the elementary school where Courtney and Cole attend, Starchild Academy where Caitlin and Campbell attend, it’s our Pop Warner Family, Oviedo Babe Ruth, Doubledown Athletics where Courtney cheers and tumbles……”
I stopped. I think I froze. I thought about the question again, shook my head and realized how big “community” has gotten in the last 4 months of our lives. A picture popped into my head.
It’s a ripple effect.
Caitlin is the stone that’s been dropped in the water; the stone that gets picked up off the ground without much thought, plunked into the water and then simply settles down to the bottom of the water without knowledge or thought that there is anything more.
But, instead of just settling down, that stone does something else, something that is completely unintentional. It makes an impact, one that is ever expanding and pervasive. It is an impact far removed from where it originates. The many ripples made by the easy movement of a falling stone travel outward and gradually spread further and further with an effect and influence incomparable to that initial act.
How does an unassuming, selfless, sensitive child become a stone that creates a ripple effect?
I don’t know. But I do know that it has effected a community. A community where my family and friends have become closer. Where friends of mine have become friends with one another. A community in which casual or passing acquaintances have become my friends. A community that has given strangers the willingness and heart to reach out. A community that starts surrounding Oviedo and grows, reaching up to the northeast and out to the west, and across the nation, and into other countries.
Parents with more than one child will tell you that their children’s personalities are each different. And that those personalities are easily defined early in the child’s life. Since Courtney was a baby, her intensity, passion and drive have been clearly visible. Campbell has followed with the same type of unmistakable personality as Courtney. Cole has shown passion, in a quiet and undemanding way. Caitlin has always been our laid back, giving, sensitive child. Her priority has always been someone else’s needs and feelings, never her own. In the past, when I look at each of my children, and consider their personalities, my thoughts have been that Courtney and Campbell were built for great things; big dreams they would certainly conquer regardless of hurdles or obstacles. Cole would go after what he wanted too, finding a way to get there with possibly some harder hurdles to jump. Caitlin, I thought, would be successful, and find an inner happiness to whatever she did, without it ever having to be “great” or “big” like her sisters.
I think maybe I’ve got that all wrong. Her ripples are the proof.
That’s some kind of ripple…..
Thank you for being effected by it.
All my love, d
We are home safe! Came home to a beautifully decorated house, complete with posters, candy bouquet, flowers and balloons!!
Thank you again, to each of you. For your never-ending support and love, your prayers and good wishes, your texts and messages, and for all the help. We couldn’t (and wouldn’t) be functioning without it!!
We are having breakfast at the Townhouse, and then going home to unpack!
Love you all!! d
