Maddie's Mavericks

The Buddy Walk was almost 2 weekends ago, and I'm just now getting around to blogging about it. I don't really have any excuses except that we have been really busy, and if I get the chance, I'll blog about all of that, too. :)

The weekend was AMAZING, to say the least! We had lots of family come in from out of town to help us celebrate all weekend, and I couldn't have been happier to have them all in. Their show of support meant the world to me, and I don't ever think I'll be able to show my appreciation to everyone for coming out.

Since this was obviously our first year, we didn't know what to expect. When we would ask people, the most common response was, "Oh, it's a great time. You'll have a blast!". Being the planner and organizer I am, I needed something more concrete. So, when someone mentioned that they feed the people that come to support their team, I took the idea and ran with it, and we had one heck of a celebration. Because, after all, that was what the day was about, celebration. Celebrating our individuality and extra chromosomes, and realizing that even though we are all unique, we truly are all "more alike than different".

There was tons of food, a petting zoo, a train ride, an ambulance, and much, much more to do while we were there.

When it came time for the walk, our guest of honor immediately fell asleep, and continued to sleep through the entire walk. But, what baby doesn't want to be snuggled warm and close to Mama while she walks? It's enough to put anyone to sleep!

Luckily, everyone else was ready to go!

(We were about in the middle of the whole walk, and this is looking behind us.)

Maddie's Mavericks

At the end of the day, both kids were exhausted and fell asleep in the car on the way home.

I've said it before, but loving my children is the best gift you all have given me. I worry about Maddie being accepted throughout her life, but I know that no matter what happens, she will always have her "village" of people to lift her back up. You all showed me that at the walk. It gives me so much hope for Maddie's future, and makes me one proud Mama to be a part of this group! Thank you!

*P.S. The counts aren't in yet on how much money the Buddy Walk raised all together or how any of the individual groups did, but as soon as they are, I will give everyone an update.

The Buddy Walk

October is National Down Syndrome Awareness Month. Every October, the National Down Syndrome Society celebrates this month with an annual Buddy Walk. The Buddy Walk is designed to support awareness and inclusion of people with Down syndrome and they are held all across the country hosted by local Down Syndrome Associations. This year, Grant and I, and our families will be walking in Maddie's honor at the 16th Annual Buddy Walk for the Down Syndrome Association of Pittsburgh. 

We invite you all to come and participate with us, and support “Maddie’s Mavericks”. Please visit https://www.dsapgh.org/buddywalk-register.asp to register. If you cannot attend, but would like to donate, go to the above address and click the button saying you cannot attend, but would like to donate instead. In the line marked "Buddy's Name", please put "Madelyn Williams". The site will be available for another week, until October 11th, after that, if you would like to walk with us, you will have to register at the walk itself. Donations will be taken by the general DSAP donation link. There is an option to specify who the donation is in honor of and you can type in "Madelyn Williams Buddy Walk 2010" so they know it is for this event.

Grant and I would like to thank everyone so far for your love and support, not just for the Buddy Walk, but also since Madelyn's birth. The last 8 months have been such an amazing whirlwind, with lots of highs and lows, but the whole time you all have been so generous. I knew we were cared for, but I had no idea how blessed we were to have so many friends and family that truly love us. You will never know how much you have helped us through this time and I could spend a lifetime thanking you all individually and it will never amount to the gratitude I have in my heart for you all. Madelyn is a lucky little girl to have such a wonderful support system. She is an amazing little girl and I can’t wait to see what big things she has in store for her life. She is going to do great things, I just know it, and I can’t wait for you all to see what impact you’ve had on her as well. Thank you all for loving my children, there is no better gift!

Ch-ch-ch-changes

This week has been super busy. Everyday was packed with school (!!!), appointments, and meetings, and that was just for the kids and me. Grant was gone for most of the week with school during the day and rehearsals at night.

Monday morning Maddie had her 6 month appointment at the Down Syndrome Center (DSC). I am always anxious about these appointments, and I am so in my head when they happen that I am not so good at paying attention to much else. During the appointment, the nurse handed Aiden a paper measuring tape that she had used to measure Maddie's head circumference. Apparently he asked me if he could wrap it around his neck to measure it, and I replied, "Ok, Honey!" Luckily, Grant and the nurse were paying much more attention than I was and didn't allow him to get even close to doing this. Of course, normally I would never have allowed this, but I'm just so wrapped up in everything that's going on at the DSC that I can't focus on much else.

The rest of her appointment went really well. She is gaining weight like a champ and according to their calculations, she is in the almost 50th percentile for girls with DS. We have been having problems with her feeding recently. She has been having problems eating her baby food and has been choking and gaging during feedings and even afterwards. The pediatrician recommended that we take her to get a feeding evaluation and a swallow study (cookie swallow). He also recommended that we get an Occupational Therapist (OT) and Speech Therapist in through our Early Intervention (EI) services. We have scheduled the cookie swallow and feeding evaluation for October 11th and then have a follow-up scheduled for November 11th. I am waiting to hear back from our EI coordinator about the OT and Speech Therapist, but should hear back sometime in the next week or so. It's a little overwhelming to be having 4 therapists in our house every week, but I'm hoping OT and Speech are temporary.

Tuesday, Aiden started preschool. For months I have been both excited and anxious about the start of school for him. Fortunately, they encourage parents to stay with their kids the first full day of school and to take "coffee breaks" throughout the day to ease the kids into separating from their parents. Really though, I think it's more for the parents than the kids. So after taking a "coffee break" on the first day, I went up into the observation room they have, put on the headphones and listened and watched as Aiden played the rest of the morning with all his new friends. He did a great job and appeared not to miss me at all. He did have some trouble the first day listening to his teachers and he really wanted to follow a little boy who was kind of a trouble maker, but all in all, he did a great job! I was so proud. He enjoyed it so much that when I came back into the room, he started crying because he wasn't ready to leave.

On Wednesday I thought that I would be able to just drop Aiden off and leave, but the observation room is so addicting that once I got up there to check on him, I didn't leave. I am amazed at watching this little boy who has grown so much from this tiny baby I once had. He is so kind and gentle to his new friends and always invites them to play with him. He doesn't like it so much when other kids butt in and take what he's playing with, but instead of having a temper tantrum, he tries to redirect them to something else, or if he's really angry, he lets the teacher know. On the first day I didn't cry at all, but on Wednesday, when Aiden told his teacher he had to go potty, then went to the bathroom, pulled down his pants and underwear, went potty, wiped, pulled up his pants and underwear, and washed his hands all by himself, I couldn't have been more proud! I almost lost it right there and then. Again, at the end of the day, when Aiden saw me, he started crying because he wasn't ready to go home. I think I had prepared myself for him to cry when I left, but I wasn't ready for this. His teachers are going to think I'm some horrible parent if this keeps up.

Maddie also had PT Wednesday afternoon. She did amazing, as always! And, she even sat up for a whole 30 seconds by herself!! I've found that she is really enthralled by clapping, and that if I clap and cheer for her while the PT balances her and then lets go she doesn't even realize she's doing it herself.

Thursday, Grant took Aiden to school and I stayed at home with Maddie and got some chores done. I have to say, it was really nice having those 3 hours to get some things done around the house. Grant ended up staying the whole time watching Aiden in the observation room, too. So far, Aiden has not had a day at school with us not there, even though he thinks we're gone. Monday will be the first day. I'm hoping. It's just really hard to leave him though. I guess I'm worried that I won't be there if he needs me. Although, I'm not really sure what I would do if he actually did need me. It's not like I'd just barge into the room, but I'm afraid I'll miss something, too and he won't remember to tell me. I think this is definitely harder on me than it is on him.

Friday, there was no school, and when I told Aiden that he got to spend the day with me and didn't have to go to school, he cried. I thought that he'd be as excited as I was to spend the day with me, but he wasn't, he just wanted to go back to school. Poor Mama.

Maddie had her Developmental Therapist come in on Friday, and I was so excited to tell her that Maddie has started saying, "Buh, buh, buh"!! Her little voice is so sweet and I can't wait to hear all the wonderful (and not so wonderful) things that she will eventually say. The next thing we will work on are her "m" sounds and "d" sounds. I was so ecstatic to hear the "buh", I can't imagine how I will feel when I hear the "ma" sound come out!

Maddie has also decided that she really enjoys having her Daddy sing her to sleep and takes advantage of having him home to put her down as often as she can.

Next week is just as busy as this week was, but luckily it won't be as new. Hopefully, I'll be able to leave Aiden at preschool this week. Maddie and I have a lot of girl time that we need to start enjoying!

Meredith and Ryan's Baby Shower

For the past few weeks, I have been planning and prepping to throw a shower for my dear friends who are due in October with their first baby, a boy. When I found out that Meredith and Ryan were pregnant, I was ecstatic for them! The way they interact with Aiden and Maddie, I just know they are going to be wonderful parents to their sweet baby.

I knew immediately that I wanted to throw a Children's book themed shower for them, which happened to fit perfectly into their nursery scheme which is classic Winnie-the-Pooh. We decided to have all the guests bring a children's book with them as their card and go in on a bigger group gift. Everyone did a great job picking out books and I think Mer and Ryan have a really great start to their library. They also loved the video camera we got for them!

I made all the decorations and food match the book theme and it turned out great! I made burp cloths out of Winnie-the-Pooh and yellow polka dot fabric and used it to secure the diaper cake that I made also. For the menu, I made: green deviled eggs, ham and cheese sandwiches (Green Eggs and Ham), a blueberry salad (Blueberries for Sal), cheese plate (The Stinky Cheese Man and Other Fairly Stupid Tales), vegetable platter (The Vegetable Alphabet), fruit platter (James and the Giant Peach), honey BBQ chicken nuggets (Chicken Little), chocolate chip cookies with milk shooters (If You Give a Mouse a Cookie), rainbow goldfish (The Rainbow Fish), and vanilla bean cupcakes with buttercream frosting in the shape of The Very Hungry Caterpillar.

Here are some pictures:

At one point in the shower, I stopped and looked at everyone who was there and thought about how far we had come and what we've been through together as a group. There have been so many highs that we have celebrated and a few lows that we've leaned on one another for support through. New people have come into the group, and old one's have left, but belonging to this little community is such a privilege. I thought about when we first moved here and how we would go out and party like rock stars as a group, and now we get together and we're swapping babies, telling stories, and leaving parties early to tuck our sweet littles into bed. We don't get together nearly as often as we used to, but the progression has been so nice. And, as we start our 5th year here, it's wonderful to see how much we've grown together as a group. I'm so lucky to have these people to laugh with, learn from, and lean on. And, as Meredith and Ryan start a new chapter in their lives, I feel so lucky to be a part of that with them. Congratulations again, guys! I can't wait to meet the newest addition to our little group, and to your family!

I never want to forget...

There are times that something happens and I think I'll never forget that because it's too cute/sweet/funny/etc. However, I'm afraid that as time passes I will start to forget. When Aiden started talking, we had a list of words that he would say and what they meant. For instance, "meatmoe" meant oatmeal, "k-bop" was ketchup, but as I write this, those are the only two on the list that I can remember.

This evening, as I was singing Maddie to sleep in her room, Aiden came in and whispered to me, "Mommy! Are you ok?" I said, "Yes." He replied, "Ok, if you need my help, just come and get me, I'll be out here." I never want to forget how sweet and genuinely concerned he was when he said that.

The other day as Maddie was swinging in her swing, Aiden ran over, stopped the swing, hugged Maddie and whispered in her ear, "I'll always be with you Maddie."  and continued on to play on his own. I had to ask him what he said to her because I wasn't sure I heard him right since he was whispering. My heart melted. Aiden will never be able to know how much it meant to me for him to say that. He will be the best big brother Maddie could ever ask for. I never want to forget that.

And, I never want to forget how special the bond is between Aiden and Maddie right now. I'm sure in the near future they will be arguing and fighting and I will inevitably have to break them up from all of the fighting, but right now... right now they were meant to be together. The way Maddie looks at Aiden like she is absorbing every movement he makes is amazing. The way that Aiden can make Maddie smile some of the biggest toothless grins I've ever seen, is so special. They light each other up, and I am so lucky that I get to be a part of that.