It's My (Pity) Party and I'll cry if I want to....

So, forgive my long absence. I have been juggling 3 toddlers and it is not as easy as you might think. And forgive that the first post back is yet another venting/ therapeutic post. Feel free to stop reading now.

We were invited to a birthday party today for a sweet girl from Casey and Connor's class. It was the second friend birthday they have ever been invited to and I was really looking forward to watching them interact with other kids in a different setting.

Let me start off by saying that I often get told that I am "super mom" or "really have a lot of patience" but neither of these things hold any water. I am a mom like every other mom in that I have good days, I have bad days and there are days I feel like I might have this zoo of mine under control and days where it's like a war zone and the only object is to just survive until bedtime. Can you guess what today was?

Casey and Connor are good kids. That said, they are definitely 3, they are very busy and curious little boys and they are certainly headstrong. These are all pretty typical traits for this age group. The difference with C&C is that they have a cognitive delay that is getting less pronounced but is still obviously present. Today was a perfect example of that delay.

The birthday party was both in and outdoors. The other kids played together and rode bikes and C&C played together and explored on their own. Unfortunately, that exploring led them to the neighbor's yard (nice landscaping, Nancy!!) and toward the street too many times to make this mommy feel very comfortable. I try to explain to them that they must stay in the yard but it gets lost somewhere in the jumble of toddler thoughts that revolve around cars, blocks and the pursuit of fun and in the end I found myself running all over the place like a crazed shopper on Black Friday the entire time we were at the party. Many thoughts and feelings went through my head. First, I am embarrassed that I can not control my kids. I am embarrassed that a person who told me they think of me as a super mom is witnessing the reality of my life and how utterly NOT super I am. I am a walking parent fail. I have no control. My beautiful little miracle men don't listen or don't understand or just forget or a combination of all of the above but the bottom line is- I am not fun to have at a party. I also totally understand why some parents use those leashes that pretend to be backpacks. I am seriously considering making those my very next purchase.

I know that we get a bit of a "pass" because people know C&C have Down syndrome. But I don't want a pass. I want to raise my boys to be responsible men. I want them to behave in public and I want them to be safe. Right now they are neither well behaved or safe. More than being embarrassed at my parenting failures I was scared for them. I was terrified that I would be distracted for a moment and then hear the screech of tires and a the thud of a 30 pound child being thrown on the hood of a car that never saw him coming. There is so much fear involved in my daily life sometimes but it is much more pronounced when we are in public and not in the safety of our very baby-proofed house.

Also, I think it should be noted I am NEVER EVER embarrassed by my kids. NEVER. EVER. I am only concerned for their safety and well being. I am a firm believer that a child's behavior reflects directly on the parents and as such I think I must seem like a train wreck of a mom. I will never be embarrassed by my kids. (well until they say something truly horrendous in public like every child inevitably does and I will then be embarrassed by the incident not the child.)

I finally had to throw the towel in before cake and presents because I was just too tired of running after my little wild men. I was also perilously close to tears and didn't want anyone to witness that. I managed a quick goodbye and many thank yous and got the guys loaded up and as soon as the doors closed and the van was moving they fell asleep and there was nothing I could do to stop the flow of tears. I just let them come. And then felt like a jerk for crying and cried more because I felt like a jerk.

I cried for the fact that I can't get them to understand the danger they put themselves in and I cried for the fear I felt and the loneliness I feel sometimes, today even, despite being around many kind and wonderful people. I cried because I went so far as to join a Mom's club in May to make some friends and never took the boys to a play date because I know that they don't listen and I am afraid of how the other moms would feel. I am attempting a mom's night out with the club next week and I am looking forward to socializing but feel guilty for doing this for myself and not allowing C&C a chance to enjoy the company of other kids. I am all for inclusion and yet I am EXCLUDING my boys. I. Am. An. Asshole.  And a hypocrite. And... afraid.

I also cried because I have to wonder how many invitations will come for the guys if people think they are wild and don't listen. I want them to learn good behavior so that they keep getting invited. I have met people who have children that out of control and I don't find myself calling them too often because it is exhausting watching them run about like maniacs on speed. Now, I am *that* mom with *those* kids. Awesome.

I need a book or instructions or just a break in the fog that is preventing me from seeing the solution that has got to be in front of me. How do you get toddlers to behave like people and not like rabid squirrels who got into a case of 5 hour energy shots? There has got to be a way. Right? Please tell me there is something I can do to make this happen.

I think this is why we don't go out. We stay home. We don't really go to restaurants unless they feature a giant singing mouse named Chuck. We go to the grocery store. We go to speech. We go to school. It's a life of predictability and safety.

I feel badly complaining. I feel like a jerk for even being frustrated with this behavior. The boys are making huge leaps in so many areas so I KNOW that this will come, too. I know it, just as I KNOW it will happen before my eyes and I will be relieved and proud. I just had a bad day. So, in addition to a birthday party, I got to attend this kick ass pity party for one. I don't throw them often but I can tell you all, I do feel somewhat ashamed when I do. I have no reason to complain. My kids are healthy and are learning and growing. My life is good. Great even. But, I am human and there are days that some things just feel so heavy and I just need to unload. And once I get all the "yuck" out of my head, I am more able to clearly see the beauty and magic of my life. That's why I write. I need this outlet. I write for purely selfish reasons. I just need to step back and see my life more clearly. This allows me to do that. It also gives me a way to show that I am not a "super mom" and to prove I am not patient. I do not deserve any of the awesome words people use to describe me. I just muddle along and hope I don't screw my kids up too badly.

I also PROMISE that tomorrow I will give you all a proper update. There are so many things to share and I PROMISE it will be a positive post full of pictures. Until tomorrow, know that this post made me feel like a sane person again. Today, that was more than I could have asked for!

World Down Syndrome Day- Celebrating the 21st Chromosome

It's here! It's World Down Syndrome Day and that's a big deal around here! I look at WDSD not only as a day to celebrate the boys and all those with Down syndrome but to celebrate the strides we are making every day in raising awareness, increasing acceptance and encouraging open dialogues and open minds. What great reasons to celebrate!

Today, in their preschool class, Casey and Connor will celebrate their bonus 21sts with their friends and teachers and they will do so wearing shirts specially made for the day as a craft project earlier in the week- tie dyed blue and yellow! Their class also made blue and yellow flowers for the other teachers to wear and made special treats to share with the other classrooms. I am bringing in blue and yellow iced cookies for snack and wrote a brief note to be sent home with each child in the class. It explains what WDSD is and thanks the other parents for raising awesome kids who are learning inclusion and extending friendships to those who may seem different from themselves.

Think about that. Think about that whole paragraph above and then think about the impact this one day could potentially have on hundreds of lives. Casey and Connor have 7 other children in their class plus 2 teachers. Every other classroom is made up of roughly the same number of students *between 9-12 students in each class). Each of those children will have an introduction to the idea of WDSD as a reason to CELEBRATE what makes us similar AND what makes us different. If even a tiny portion of that idea sticks in their minds we have begun moving mountains. Awesome.

Now, multiply that effect as at least a portion of those kiddos will go home and talk to their mom and dad or grandma or babysitter about the day and that could potentially open up conversations or plant the seeds of change in someone's mind. Now multiply that further and realize that this is just in MY kids' school. Celebrations like this are taking place in classrooms all over the world. The reach of this ONE day is mind boggling. Millions of people the world over could potentially be touched by WDSD and who knows how many lives could be saved if a parent is given a prenatal diagnosis of Down syndrome but they were effected by WDSD or how many new friends could be made by making children realize that their classmates with Down syndrome really are just like them. It makes my heart swell with joy.

Beyond the festivities at school, we will be celebrating alongside several friends from the Up Side of Downs at an indoor playground! After that, I will be attending an open house at Dream Out Loud Studio- an absolutely outstanding studio for artists with developmental disabilities that is run by the Summit DD. It is my intention to talk to as many people as possible today, to share our message with as many new folks as I can.

There is one other goal for the day and that is to hug my boys as many times as I can and thank them for changing my life, for forever altering the very fabric of who I am in ways that I could never have imagined. I will hug them and find more joy than usual in their smiles, in the way their sparkling brown eyes slant up just so, I will remember to enjoy the beauty of that single palmar crease, their cute little ears and the way that they look when they run, smile and laugh. I will celebrate every breath they have taken, every milestone hit, every goal yet to be accomplished and I will do all this with nothing but absolute joy and pride. I will look at my boys and KNOW that I have been given a gift far better than anything sold at Tiffany & Co., something far more precious than any artwork- I have been given LOVE in the shape and size of 3 year old miracles. I have been given little angels without wings. I have been given a mirror that shows me the potential of MY life if I live in a way that makes God proud and makes my boys proud. I have been given a glimpse at perfection, innocence and the purity of spirit that only a child with Down syndrome has. All children are amazing but a child with Down syndrome has accomplished so much in their life by simply refusing to give up when things are difficult. A child with Down syndrome works harder for every single milestone than I have ever worked for anything in my life and they do it in a way that enhances the lives of those around them. What better gift could there possibly be??

Today, I will also celebrate my gorgeous baby girl who accomplishes things so easily. I will celebrate the fact that she will grow up with 2 brothers who love her unconditionally, who look at her like she is the most fascinating creature on earth and who adore her without limit or reservation. I will celebrate that SHE will grow up knowing more than I did, more than her dad did and I know that she will impact this world as much as her brothers do solely because she got to grow up in a household that will teach her to respect those that others may blow off and to lift up those who may be weaker. She will always know that she is loved, that she is special and that she is important just like her brothers.

Finally, I will celebrate today for all the parents out there who are not quite ready to celebrate it yet. I will hold in my heart those who just got the diagnosis or who have a baby or child with Down syndrome who are not yet able to see the beauty of the extra 21st chromosome. I will celebrate that I was once at the stage where celebrating was the furthest thing from my mind but my heart was changed and I learned to not only embrace Down syndrome as part of my life but that I also learned to truly, genuinely LOVE that it's part of my life. I celebrate ME for how far I have come. I will also let those parents who are not "here" yet- that it is OK to not be ready to celebrate. It's OK to feel overwhelmed or unsure. It's OK to not love the challenges that come with DS. Just open your heart to the beauty of this life and in time the celebrations will come.

There are many things to accomplish today, much joy to be shared and many hearts to touch. I chose to start that journey here, with you. Please share these words with others if you feel moved to do so. There are so many to reach.

God Bless and Happy World Down Syndrome Day!!!
-Meghan

New Year, New beginnings

First let me say, I hope everyone had a VERY Merry Christmas (or Happy Hanukkah, Happy Kwanza... whatever the case may be!) and that your Holidays were as happy and blessed as ours were!

Tonight we will be ringing in the New Year in typical Wilkinson fashion- at home in our jammies. Matthew and I will likely watch something on Netflix and Casey and Connor will be in bed sleeping by 8 pm. We were supposed to go to a wedding tonight but as usually happens- plans just fall apart. We are getting hammered with snow, Casey is CRABBY and Matt has one of his awful migraine headaches. Those 3 things equal no wedding for us but we are sending out warm wishes for a long and HAPPY marriage to Joy and Mike- you two deserve amazing things! Best wishes!!

I like to look back at the year as we move forward to a new year and this year was FULL of outstanding things! Casey and Connor learned to walk, learned to climb (nothing is safe anymore!) and they learned to use the stairs by themselves. They learned several signs and are beginning to use them more frequently though they do still resort to crying and misbehaving when they want something and we are not getting it fast enough. The boys accompanied me to 16 sessions with 3rd year med students at Akron Children's Hospital and the Genetic Anomaly conference at Case Western. They have shown so many people how fabulous they really are! Their Facebook fan page is over 570 fans, the blog has nearly 27,000 page views and has reached countries I have had to look up on a map to know where they are!

Most recently, the boys got to play in the snow for the very first time. They were not able to walk well enough last winter to put them out in the snow so it was a very memorable experience here a few days ago!

We survived Connor being hospitalized twice with dehydration and his also getting 2 stitches in his head after falling down the stairs. We went through 2 pairs each of SureSteps orthotics and 1 pair of crickets shoe inserts for Casey.   We went through countless diapers, transitioned to toddler beds, watched the movie CARS 4 bazillion times and watched as the boys adjusted to having a baby sister!

The miracle men were in their first Christmas program at church and they became the January 2013 page of the Summit DD calendar!

Overall, it was an exciting and wonderful year!

This year we are looking forward to starting pre-school, making new friends and continuing with Medical education at Akron Children's Hospital. We will happily forgo any hospital stays though!

All in all, the blessings we had were numerous, the bad days were few and the memories and smiles were countless.

In 2013, we wish you and yours nothing but love, good health and good fortune. We wish for you to remember that life is all about your attitude. Just think of this- ANYONE can enjoy a good day- it takes a strong person to find the joys in the bad days. May you always be able to find the joys, share a smile and take the time to help a friend or stranger. The smallest acts of kindness can make a huge difference. Please help spread the words that I write that we may reach many more people this year and they can learn that Down Syndrome is a blessing not a burden!

Most importantly, thank you. Thank you so much for sharing in our fantastic journey! We are thrilled you are along for the ride!

God Bless and Happy New Year!
With LOVE,
Meghan

Dream Until Your Dream Comes True

I have always liked the band Aerosmith. Actually, the very first concert I ever went to was Aerosmith at the Richfield Colosseum in 1994. I was a freshman in high school and I went with my friend Kasha. We sat in the nosebleed seats and it was the first time I had ever been around anyone who was smoking pot. The guys next to us were pretty heavy smokers and about 1/4 of the way through the show one of them threw up on the floor next to us. We didn't even care. It was a magical night. It was our first foray into "adulthood" and we felt bigger than life. Well, I did and I am imagining that's how she felt, too.

As I said it was my first concert. Everything about that night, the sound of music blaring out at you, the smells of beer and cigarettes and yes, pot, all mixing with my Estee Lauder Pleasures perfume I got from the family I babysat for through junior high and high school. It. Was. Awesome. I had been a fan of Aerosmith from a young age. I remember seeing the video for "Rag Doll" while sitting on an exercise bike at my mom's gym when I was 7 or 8 and thinking A.) that girl's underpants are showing and B.) I LOVE this song. I had no clue what it meant but that music moved me.

There is a point to all this, I swear. The part of that night I remember the very most was when I heard the song "Dream On" for the very first time live. I. Was. Blown. Away. I will never forget that moment. Or that song. I think of that song as one of many on the soundtrack of my life. Something about it just gets to me. It has inspired me countless times and I find that usually happens when I need it the most.

It got me again today. I was thinking about how when I was pregnant with Casey and Connor my dreams for them were pretty standard- play sports, be well liked, always like me the best because they're both mommy's boys, go to college, be something outstanding, give me lots of grandchildren to spoil. After I heard the words Down syndrome that all changed. For awhile I had no dreams for their futures. I dreamt for their immediate lives- I dreamed that they would smile, laugh, coo, hold their heads up, sit unassisted, stand, walk. I didn't go much past those basics.

It's amazing how things changed and how I was looking at their lives in small bites. I was looking at their every accomplishment as reason for celebration and didn't bother thinking much further or bigger. Until the last 6 months or so and things have once again changed.

More back story- when I was young I went to Kent State University. I went right after high school and I didn't really know what I wanted out of life. I just went because I was supposed to go. I didn't really have a dream for myself. I just wanted to do what I was supposed to do. I chose Early Childhood Education as my major because I liked kids well enough and I figured I could do that as a career. I was never really invested in the idea though. Long story short- I failed out of college. Not just failed out a little- like in a BIG, BIG way. I failed at something that I never truly gave any thought to but I was really sad that I let the opportunity get away from me. Not all was lost- I met one of my very best friends at KSU and she and I remain very close. I also learned that I am not so great unless I have a clear dream and direction.

I have not had a clear dream or direction in, well, ever. That is until my world changed completely and I was given my miracle men and their sweet baby sister. I have dreams now- for all of us and while they do include a number of small things ( I am still waiting to hear the word mommy) I find I am planning much farther ahead.

I am dreaming of my angels changing the world. I want them to work hard and accomplish amazing things. I dream of watching Casey and Connor being handed high school diplomas- not certificates of completion- DIPLOMAS. I dream of them going off to college- maybe even Kent State which now has a great program for adults with Down syndrome. I dream of Reagan becoming an advocate for anyone who struggles. I dream of filling her head with positive things and confidence and the wisdom to share those gifts with the world. I dream of raising my children to become kinder than I was, stronger than I am and far more focused than their momma ever managed to be herself. I want my children to go out and make this world a better place to be and I want them to do it in a BIG way. I want them to shatter preconceived notions and to challenge the idea that some are worth more than others. I want them to go out into the world and I want the world to take notice. In short- I want them to be successful and kind and loving but to also be great at whatever they choose to pursue.

In honor of those dreams for them I have decided to allow myself to dream for me also. I am really beginning to think of MY future. I want to be something. I want to be someone who makes a difference. I want to live up to all the potential I ignored all those years ago at Kent State University. I know I want to go back to school. I am not sure for what yet. I have it narrowed down to  a few possibles.

In addition to wanting to go back to school I have also decided to allow myself to want other things. Recently I was approached about running for a position with a well known agency. I can't go into too much more detail but if I decide to pursue this opportunity and I get chosen I could be part of something very important and it would likely help me to help many, many people with disabilities. At first I was hesitant to even admit I wanted this position because, as is my nature, I don't believe I am good enough or qualified enough. But some very good friends gave me the pep talk that very good friends give and I have decided to push the fear aside and go for it- and to admit I really want to be picked. SO, without any other details than that please pray that I am chosen and that this surge of confidence holds. God will know what you're talking about.

On that note, I feel I have written enough tonight. I'll leave you with a part of the lyrics that often inspire me...

dream on, dream on, dream on,
and dream until your dream comes true 

Simple words.
Great meaning.
Better memories.