Friday, January 28, 2011

Happy 8-month Birthday, Jack!

WOW, I can't believe I just typed that! 8 months ... REALLY!?!? I literally woke up this morning, realizing what day it was, and started crying. Why does time have to fly by so quickly? Well, I guess it just does when you're having so much fun!

Today, we will celebrate Jack's 8-month birthday by heading to the Outer Banks for a little family time together. Can't wait!!

I realize that you all are due a little Jack update. Jack is doing wonderful! A few weeks ago (I can't believe I forgot to tell you all this earlier), Jack said "mama" while we were outside playing in the snow. It was so unexpected, and I could hardly believe my ears! Jack and I were sitting in the snowy woods behind our house playing, and just when I turned my head to get my camera, I heard the sweetest little voice say, "mama." Not "mamamama" but straight up, "mama." Tears welled up in my eyes ... it was the most beautiful thing I'd ever heard!

At first I thought I might have just been hearing things and that it was too good to be true, but just a couple days later Jack said it again and again (with witnesses present to prove that I am not crazy). Since then, Jack has been babbling up a storm ... saying, "mamamama" and "bababababa" (and maybe one or two "dadadada's"). He's also taken to "yelling" at his toys ... it's hilarious! I caught Jack babbling on video the other night, and I will gladly share it with you all as soon as I overcome some "technical difficulties" and figure out how to upload it to my computer!

Jack gives us "high fives" now, which is too cute, he's starting to reach his arms up for us to hold him (LOVE!!!), and Robert thinks that he might have done the sign for "Mama" the other day. Incredible! Jack can also sit independently now for hours, bear weight on his legs while holding onto something in the standing position, and he can hold himself up on all fours in the crawling position. He can't quite get himself completely into this position on his own, but he certainly tries! Jack is one determined little fella!

Happy 8-month birthday to my favorite person in the world! I love you so much, and I am so proud of you.
You amaze me more and more each day!

Tuesday, January 25, 2011

"You have made known to me the path of life;

... you will fill me with joy in your presence" -Psalms 16:11

I have been meaning to make this post for a few weeks now, but for lack of time it just hasn't happened yet. Now the time is better than ever, though, as a new friend has "made known to me" something tremendous and has "filled me with joy" and hope for the future of people with Down Syndrome.

A few weeks ago, my friend Kristin (mom to little Carter, Jack's new BFF, whom you've all heard about) had a very, very special playdate at her house. Kristin, Carter, Jack and myself met in person a new friend (or a new "sister," if you will, in our exclusive little club our boys made us a part of) named Erin, mother of two precious boys Mason and Grady (who has T21). Erin lives in New York but went to college in North Carolina. She has a wonderfully beautiful blog (check it out at which Kristin introduced to me, and we both have been following it for months. Since we "discovered" this remarkable family, Kristin and I have both also "friended" Erin on Facebook and have communicated a little here and there with her.

Well, one day a few weeks ago, I read a post on Erin's blog that said she was coming back to NC to visit friends and family. She also mentioned a special meeting that was to take place ... she was planning to meet Kristin and Carter while staying with her cousin in Winston-Salem (only 25 minutes from Greensboro)!!! Could this be true, I thought. And, if so ... I HAVE to meet her and little Grady!!! I MUST!!! So, my very next action (and this won't surprise any of you who know me really well) was to promptly invite myself to this extraordinary playdate (thank goodness they said yes!). And so we met on a Friday afternoon at Kristin and Carter's cozy home, and it was an absolutely wonderful, wonderful day. Erin is one of those people that makes you feel like a better person by just knowing her, someone you'll never forget and who you just know has something special ... she is destined for great things. As for Grady, he is an absolute precious angel, so sweet, cuddly and cute with these big, beautiful ice blue eyes. He, Jack and Carter were instant friends ... they played so hard together that they all passed out asleep at the very end of the playdate!

So everyone, please meet Grady:

Sweet Grady (I can't get over how much he and Jack look alike!)
Here are some photos of our wonderful day (sorry I'm so late in posting these):
Grady and Jack holding hands

Jack eating Grady's hands (what doesn't this kid put into his mouth these days?!?!)

Too sweet!

Welcome to our club, Grady! (You should move to NC!)
New BFF's

Three peas in a pod

Circle of Friends

Proud Mommies and babies

Our new wonderful friend Erin with the boys

Beautiful Kristin with the boys (Again, thanks for hosting!)

I had just too much fun with these little angels!

Sleeping angels

Jack woke up, of course!

Can't get enough of baby feet!
Now I change the subject.
So now that you've all met our new friend Grady, now please meet Simon:
Simon has a lot in common with Grady, Carter and Jack ... they all have Down Syndrome (and they're all absurdly adorable!), but Simon's life is very different than the rest of the boys'. Simon was born in Eastern Europe on February 19th of 2010, just one day before Grady Wayne was born here in the United States. On the day that Grady was born here, Simon was transferred to an orphanage in Europe simply because his mother did not want to care for him ... because he has Down Syndrome.

In Eastern Europe, children with special needs are institutionalized and poorly cared for ... in fact, as the Today Show described it, these children are "tortured." (Videos of this grotesque inhumanity can be found on Erin's most recent blog post at Our dear new friend Erin, who is just as beautiful and true on the inside as she is on the outside, found Simon on the Reece's Rainbow website (, which is an International Down Syndrome Orphan Ministry, and she has been following his story for many months. If Simon, who turns one this February 19th, does not get adopted by his birthday, he will likely be placed in an institution where he lead live a lonely and despair-filled (non)life without the love, basic care, and attention he deserves.

For Grady's first birthday, our friend Erin asks not for toys or books or clothes for her precious little boy, for he has every thing he needs in his warm and providing home. Instead, Erin's family asks of her friends (and I am lucky to count myself among them) to help fulfil "Grady's 1st Birthday Wish" and consider donating to Reece's Rainbow towards the cost of Simon's adoption at Today, I am fulfilling my promise to help Erin and her family with this mission by sharing this message to all Jack's supporters out there. I ask that you consider helping our new friends, helping the Down Syndrome Community, but most importantly, helping bring Simon home to a caring and loving family ... who knows, maybe with your help he could even become Grady's second "big" brother some day soon!!!

Wednesday, January 19, 2011


... that's Latin for "blessings," I've learned. And, I sure have had a lot of blessings in the days since my Jack's birth. Among these "beautitudes" have been many people I've started calling our "guardian angels," who have swooped into our lives and held our hand during the first few months of this new and wonderful journey. Among the top names on this list of guardian angels most definitely lies one name ... Lisa.

Those of you who have been following my blog or know me personally have probably heard me talk of Lisa, our Family Support Network liason. The Family Support Network of Central Carolina is an organization that follows babies after birth who were born prematurely and/or have special needs. In essence, this organization (along with the CDSA and others) helps so-called "challenged" babies stay on track developmentally by regularly evaluating children's needs and recommending therapies and tools for growth.

On the day of Jack's birth, rather than have "family time," strangers were in and out of our room for three days straight ... doctors, geneticists, social workers, case managers, etc. Among these strangers was one that would become a mentor on the subject of life, a confidant, a long-lost sister, a best friend ... a guardian angel. The days following Jack's birth are still a little foggy, given the medications I'd had and sleep deprivation, but Lisa always stood out in my mind. Her bright light blue eyes looked right into mine while she told me that everything would be okay and that she was here for me and my family. I immediately felt a bond with her and knew that she was telling the truth.

Nearly every other week since Jack's birth, Lisa has visited us in our home to not only check on Jack's development, but also to check on us as a family and as her friends. Lisa recommended therapies when needed, taught us ways to stimulate Jack during play that we wouldn't have ever thought of, and really helped me on days I just needed to talk. She trusted us and opened her arms up to our family, just as we opened our hearts and our home to her.

The reason I'm telling you all this is because today was Lisa's (can I actually say it without crying?!?!) ... it was her LAST VISIT. (She typically follows children for the first 6 months of life, but we had to do some rearranging with my schedule, her schedule, the holidays, etc. which stalled our last visit for a month or so ... oh darn.)

So, tonight I'd like to dedicate this post to Lisa ...
... who believes in children in whom many others don't believe
... who encourages children to reach their fullest potential no matter how long it takes
... who celebrates even these children's smallest accomplishments, as if they were her own flesh and blood
... who dedicates her life and her career to helping others who need help the most, when others turn a cheek
... who recognizes a child's true potential and doesn't ever let him give up
... who cries and means it
... who cares for special babies not as her job, but as her life's mission
... who is our Guardian Angel and whom we'll never, ever forget.

Although the words "thank you" don't begin to describe our appreciation for everything you've done for us, Lisa, I can't help but say, "Thank you, thank you, thank you!" I couldn't have picked a better person to hold our hands during this challenging but exciting and smile-filled ride we're on. I know that it's now time to let go of your hand, but bear with me ... I'm having trouble. So, I'll go by not saying "goodbye," but instead "See you later!"

(How about lunch next week?!?! :)

For Lisa ...

Beautitudes for Friends of People with Special Needs
(Author Unknown)
Blessed are you who take the time
to listen to difficult speech
for you help me to know that
if I persevere,
I can be understood.
Blessed are you who never bid me
to "hurry up"
or take my tasks from me
and do them for me,
for I often need time, rather than help.
Blessed are you who stand beside me
as I enter new and untried ventures,
for my failures will be outweighed
by the times I surprise
myself and you.
Blessed are you who ask
for my help
for my greatest need is to be needed.
Blessed are you, who with a smile,
encourage me to try once more.
Blessed are you who
never remind me
that today I asked
the same question twice.
Blessed are you who respect me
and love me just as I am.
... Love, Jack

Sunday, January 16, 2011

What happiness looks like

I used to wonder from time to time what it means to be truly happy. Not anymore. Everyday my angel gives me special moments, brief but beautiful glimpses into heaven, profound gifts from God, that remind me again and again what true happiness is ...

Happiness is little ears and a tiny nose ...

It is little eyes and baby toes.

It is a waking child's face ...

In the dancing sunlight

... and naked baby photo shoots
when the moment's just right.

Happiness is bear hugs and sloppy, open-mouth kisses ...

that are worth more than all the world's riches.

It is watching a child discover new things,

Updating his Facebook profile

Baby "Shake Weight"

And all the wonders that this life brings.

Best friends

Happiness is a child's first outing in fresh fallen snow,
"Mommy, can we PA-LEASE go outside and play in the snow?!?!"

(It doesn't take much for Mommy to give in to this little face!)

And watching his face purely joyful and aglow.
Happiness is all of this and more ...
But sometimes it just takes a game of peek-a-boo

To make your heart soar ...

Friday, January 14, 2011


A sigh of relief. I can breathe again ...

I have been waiting for weeks to make this post because I did not want to worry anyone before we had answers, but I would like to share something with all of you because I know you care about Jack and want to know how he's doing. Before you read on, though, I want you all to know that all is good at the "Casa del Hickling," and that Jack is a perfectly happy and healthy boy. It ends up we were worried for no reason. Here's the story ...

Since the day Jack was diagnosed with T21, Robert and I knew (and have talked about MANY times) that there would be bumps along the road during this whirlwind of a journey we are on. Jack has grown and developed so much like any other child (in some areas, even faster than other children) that I couldn't help but find myself almost waiting for, expecting something weird to show up. Well, Jack who always seems to know exactly what Mommy is thinking, only let us wait 7 months for that something weird. Again, I promise everything is fine, just read on ...

On the Monday night before Christmas, we noticed some weird behaviors while Jack was sitting in his highchair eating dinner. About 5 or 6 times within about 10 minutes, Jack tensed up his arms and they would tremor a little bit while he squinted his eyes and then they rolled back into his head. The scariest moment of my life. I was almost certain Jack had just had a seizure. Robert told me to run to get the video camera so we could show a video of it to his dad, who is a Pediatric Neurologist. Completely shocked, I tried not to get too worked up and to give the situation the benefit of the doubt, thinking Korey, you're just overreacting, it's nothing. Please, God, let it be nothing. Jack did this a few more times over the next few days while or shortly after eating. And, despite my prayers for Robert's dad to watch the video and say, "You all are just overreacting," he instead said, "That looks like a complex partial seizure." Wham, dagger to my heart. I couldn't even breathe. Why this? Why now? I can handle Down Syndrome, but God, I don't think I can handle epilepsy. (For those of you who don't know much about seizures, if frequent enough they can cause brain damage, leading to developmental delays. My little boy already has the cards stacked against him. How would we deal with this too?) I often don't even think of Jack as having Down Syndrome because he's just like any other baby to me, but this brought it all right back into the foreground. Our first bump.

Unless you have children, you cannot begin to imagine the pain, helplessness, and absolute sickening feeling you get when you think something is wrong with your child. Here we are, just having gotten used to this whole Down Syndrome thing, and now we're facing this too?!?! So not fair. The only other time I've ever felt so indescribably scared was when my father was dying of cancer nearly 7 years ago. I started to think, how much can one person take?

The following Wednesday after the "event," Robert's dad (Bill) did an EEG on Jack (to measure/analyze his brain wave activity) at his office. We fed Jack during the EEG but, of course, he did not have an "episode." Bill did say, however, that he usually (but not all time) sees "inter-ictal" activity on EEGs of children with epilepsy even when they're not actively seizing. Also, Jack fell asleep during the EEG and his results showed "normal sleep spindles," and Bill typically sees seizure spikes during sleep in epilepsy patients, because the brain is less inhibited during sleep. Also, since his "episodes" happened mainly while eating, Bill proposed that it might just be a weird reaction to reflux (GERD). Interesting theory, we thought, but Jack hardly ever spits up. And, wouldn't we have known before 7 months of age that he had reflux?!?!? But it was worth investigating, so we got a GI consult the next week. Whew ... we were a little encouraged by all this, although not completely out of the woods. Bill was still not 100% sure that Jack was not having seizures.

The GI specialist was not very convinced that Jack had reflux (for the same reasons we weren't) but he sent Jack for an "Upper GI" series (basically, videos of Jack's esophagus and tummy while he drank Barium from a bottle ... yummy, huh?). Jack's gastrointestinal anatomy is completely normal, which was nice to know since many children with Down Syndrome can have GI abnormalities. And, at the end of the study, what do ya know? Jack refluxed! So, he was diagnosed with GERD. Seizure disorder, no can do. But, reflux? Yes, please! And, I'll take it with a side of Prevacid, thank you very much!

Despite ths diagnosis and the fact that Jack's "episodes" have been less frequent and less intense since starting Prevacid, Bill still wanted to go ahead with a prolonged EEG to rule out seizures altogether. Being the patient's grandfather, he was having trouble staying objective about it all and wanted final answers. So, last Tuesday Mommy, Daddy, and Jack were admitted to Baptist Hospital in Winston-Salem for a 24-hour (or potentially 72-hour) video EEG in the EMU (Epilepsy Monitoring Unit). This entailed Jack getting 22 probes glued (literally) to his head and then his head wrapped in gauze. These electrodes were connected by wires to a box that was continuously plugged in the wall, which made it quite difficult to maneuver in our tight hospital room (that housed a hospital bed, a cot, AND a crib). We were also given a button to push when we thought Jack was having one of his "events" so they could tag it on the EEG. Jack did a few of his funny things while we were there (but not any of the eye rolling like the first couple of times), but we felt that they had sufficient data to determine if Jack had epilepsy. The staff were all really friendly and the experience, I guess, was as good as could be expected. Jack HATED getting the probes attached, and the poor baby screamed during that whole process. (This broke my heart, but I tried to transform into "nurse mode" and keep it together!) Once the probes were on though, Jack was such a little trooper (as usual), and they didn't seem to bother him at all! He didn't sleep well at all the night we were there, though. He only slept from 9pm until 2am before awakening and "talking" while looking around at all the "cool" new things in our hospital room. It was frustrating to be up at that time, but all in all it was pretty darn cute, because he wasn't crying or fussing at all, just taking in all the new stuff around him. Such a sweet baby. I was so very proud of how he handled it all. It was a difficult 24 hours, but it was all worth knowing that my little boy's alright.

The next day in the hospital, the neurologist came into to examine Jack and tell us that his continuous EEG was completely NORMAL!!! Another whew! Deep sigh of relief! She was very enamoured of Jack as well, asking me while he sat and played with her if we were sure he didn't have DS Mosaicism rather than full Down Syndrome because he seemed so high functioning. After weeks of torment and fear, these words and knowing his EEG was normal put a huge smile on this Mommy's face!

So, it appears that Jack's "episodes" are quite possibly (a) just a "Jack thing" or (b) just GERD. Really? GERD can cause all that trouble?!?! Who would've thunk it? Jack's been doing better on the Prevacid (less "events," but strangely he's spitting up more. Not sure what that's all about.) Our little man is back to usual jolly adorable self, sleeping through the nights and making Mommy and Daddy smile by day. We feel so ever grateful to everyone who has helped us throughout the last few weeks. Our families have been incredibly supportive and caring, always calling to check in on Jackers. Obviously, huge thanks to Robert's dad, without whom we wouldn't have gotten answers nearly as quickly as we did. (Thanks, Pops!) Our coworkers have been more than supportive by being so understanding about it all and allowing us time off as we needed it. Lisa from the Family Support Network and Jane from the CDSA, you ladies were very kind and uplifting during our several phone calls. My dear friends, you all were great too. We couldn't do all that we do for Jack alone. And to those of you who haven't heard from us in a while, I'm very sorry. We weren't trying to be bad friends, we just had a lot going on personally and really needed to focus on our family and our health. And, we didn't want to worry anyone until we had answers.

I'd also like to thank my husband who is my best friend, my rock, my shoulder to cry on, and my complete confidant. Stressful situations can often pull families apart, but this just brought us closer. Robert, you a wonderful man and an absolutely amazing father. I love how you light up and get the most genuine little tears in your eyes when you see Jack or even just talk about him. I love how when you get home from work you bypass me to kiss the baby before me. It's too cute! And, I love how these past couple weeks has strengthened our family bond even more. And, I am more certain now than ever before that this bond is truly unbreakable. I love our family, and I wouldn't change it for the world.

So, our first bump in the road ended up thankfully just being a small one, and all we needed to fix it was a little pink tablet that we have to give Jack every day. Here's to hoping the next bump is miles and miles away ...

Wednesday, January 12, 2011

A Beautiful Cause

Although I have complete and total blog envy over the inspiring mother, writer and photographer Kelle Hampton, who has little Nella (who also rocks a little extra chromosome), I wish for all Jack's fans out there to check out "Enjoying the Small Things" at and find out how to donate money for Down Syndrome. Kelle's blog really helped me through the tough parts of my days immediately following Jack's birth, and I continue to visit her site for some little uplifting inspiration from time to time. Please check it out and consider donating! Jack wants you to! ;)

Disclaimer: Please, no comparing my blog to hers allowed!