Monday, June 28, 2010

Welcome to Holland

For those of you who have never read the following essay by Emily Perl Kingsley about having a child with special needs, I highly recommend checking it out.

Since I had Jack, many people have brought this essay to my attention, but I was first exposed to it four years ago when I was in my pediatrics course in nursing school. We spend nearly a week learning about Down Syndrome, and we watched an inspirational video about children with Downs which included this essay. I remember being so incredibly uplifted and moved by the essay that I immediately called my sister Kelly and said to her, "You know ... I think if I ever had a child with Down Syndrome, I would be okay with it." Kelly reminded me of this conversation when I was in the hospital, just having given birth to Jack. It's amazing how the world works, isn't it? And, thanks, Kelly, for reminding me of my own inner strength ...

When life throws you a curve ball ...

... you eat ice cream!!!

Last night, Jack and I attended our first Moms of Children with Down Syndrome meeting with the DSNGG at Ben and Jerry's. It was really, really nice and comfortable to be around other moms of children with DS. Two other moms brought their babies, too, so it was of course more fun with them there! We got to know each other and shared stories as we passed around babies (Jack was a hit!).

Although our life has been thrown a little curve ball, I feel so fortunate to have these types of resources available even this early on in the game. Several of the moms were very, very open with their feelings and emotions, including the difficulty that sometimes accompanies getting used to the idea of having a child with special needs. It was so nice to have all my feelings validated and to know that I have so many new supportive friends!

Friday, June 25, 2010

"Old friends are best, lest you can catch a new one that's fit to make an old one out of." ~ Sarah Orne Jewett

Last night, Robert, Jack and I had the privilege of meeting our "Parent Match" through the Down Syndrome Network of Greater Greensboro, which is an organization affiliated with the Family Support Network of Central Carolina. When asked in the hospital by an organizational representative if we were ready to be paired up with some parents of a child with Downs, we immediately jumped at this great opportunity.

So, last evening, Abby and Jason Hilemn and their little girl Lacey, who's 2 and a half years old, brought a delicious dinner over to our house. It was such an amazing experience to meet a young, attractive, successful couple that completely understands exactly what we are going through. Abby is now 33 and she had Lacey when she was 30, and Jason actually works somewhat with me at Moses Cone, and I definitely recognized him from work. So, it was nice to also be able to "talk shop" a little as well!

Abby and Jason found out that Lacey had Down Syndrome while Abby was pregnant during early ultrasounds and screenings, so their experience was a little different than ours. Nevertheless, it was interesting to find that Abby and Jason went through similar emotions and feelings as we did although we found out about our babies' diagnoses at different points in the game. Abby and Jason did not hesitate to answer all of our questions, and they gave us very candid advice, which we greatly appreciated. It makes such a greater impact to hear advice from people who have lived through what we're going through rather than from others who haven't.

Let me just tell you ... Lacey is one of the most adorable, vibrant, bright, charismatic, loving and affectionate little girls we have ever met. I wish I had taken a picture of her to post! She is just a ball of energy and just wanted to explore everything! She isn't talking just yet, but communicates just as effectively through signing. It was actually quite nice to have the spirit of a little rambunctious youngster around without all the noise!!! Abby and Jason tell us that little Lacey hit all of her other milestones right around the time expected of any "typical" child, so this was very encouraging for Robert and me.

So, we would like to formally extend our gratitude to Abby, Jason, and Lacey for the wonderful company, great advice, and delicious food ... we feel very lucky to have such a great parent match. The Family Support Network could not have picked a better couple for us, and we look forward to an everlasting bond and friendship that we now know we couldn't live without! Thanks so much, guys!

Thursday, June 24, 2010

A Quick Update

Thanks to everyone who has read our blog and for the wonderful comments! We love all of you very much and appreciate your support.

Just wanted to let you all know that Jack got weighed yesterday by our Smart Start nurse, Jeanne (she's AMAZING), and he topped the scales at 7 pounds 15 ounces! Almost 8 pounds! He has gained a full 16 ounces (1 pound) in only 13 days since her last visit!


Wednesday, June 23, 2010

Our First Post

Hello everyone! So, I've never blogged before in my life (and frankly always thought my life was not interesting enough to do so), but we are just way too excited about our new addition to our family not to share him with everyone we know and love!

So ... we would like to officially introduce to the world the new light of our lives, John Robert Hickling (affectionately known as "Jack"). Jack was born on Friday, May 28, 2010 at 5:27 am after 26 hours of labor (very fun, by the way ;) and an eventual C-section. He weighed 6 pounds, 11 ounces at birth and was 19 1/2 inches long.

As many of you probably already know, we were shocked to learn shortly after Jack's birth that, despite negative prenatal testing, he has Trisomy 21, more commonly known as Down Syndrome. Although we were all stunned to hear this news, our feelings were completely transformed into nothing but love and amazement when we saw Jack's beautiful face, his little feet and hands, and his big heart. We also began to count our many, many blessings as we found out that Jack's echocardiogram was completely normal (heart defects are fairly common in Trisomy 21) and that he passed his hearing test with flying colors. And, after a brief stint with jaundice and 3 days on home phototherapy, Jack began to and continues to thrive daily. Breastfeeding has been challenging (for mom) but, with formula supplements, Jack is growing into a very, very strong little boy. He even got back up to birth weight within 10 days of birth, and I have no doubt that he weighs close to 8 pounds now!

Robert and I know that we potentially face challenges in our future with Jack, as many special needs children experience developmental delays and/or health problems. However, as for now, we have seen absolutely no signs for concern in our little buddy, so we chose not to worry about anything until there is something to actually worry about. We know a little bit about Down Syndrome but continue to learn more each day by reading and talking with other parents of children with special needs. We are amazed by the amount of resources and support there is out there for parents like us. We love to watch Jack develop and interact with us, and we try meet every new day as an opportunity to grow as a family. Even our beloved dog Forest seems to know how special our little guy is and, as his first job as "Big Brother," has taken on the responsibility of Jack's constant guardian!

We may have obstacles in our future that many other people never have to face, but one thing is for sure ... Jack is one of a kind already, and we know that he will enrich our lives more than we could ever imagine. We feel like the luckiest and most blessed parents already to have such a special little boy in our lives, and we know that he will teach us more about the right way to live than could ever be taught in any book. After my prenatal screening, I was assured that there was only a "1 in 10,000" chance that my baby could have Down Syndrome. Now, we feel blessed that we didn't miss out on being parents to this "1 in 10,000" kind of child!

We would like to thank everyone for their many, many cards, gifts, emails and phone calls. We are so lucky to have so many caring and supportive people in our lives at this very important and life-changing time.

We have been told by the "Band of Angels" ... "Just wait until you discover the HUGE JOY packed in that little extra chromosome." We have already discovered such joy in our little Jack, and we look forward to so much more! Just as importantly, we hope that you also get to experience the joy that Jack brings!