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!

Apologies and Pledges

It doesn't happen very often and I am sorry that I let my frustration get the best of me the other day. I think a part of my mini meltdown can be blamed on pregnancy hormones. I have been told that I shouldn't let words get me down, that when people use the "R" word it's not directed at people like my sons. I disagree. There is no instance when someone can call someone else or something else retarded that makes it acceptable. I will continue to react and to educate and fight back against the use of derogatory words. I will fight this fight until people realize what a disgusting word it really is. It was not that long ago that people felt perfectly comfortable calling black people the n word. It was used in everyday conversations. SOMEONE stood up and said NO! This is not acceptable. Then more people stood with him (or her!) and made that same statement- 'This is NOT OKAY!' Today, we hear that word from fewer people (sadly from quite a few rappers) but it's not something I expect to hear in a conversation with the checkout guy at the supermarket. The "R" word is not the same though. Doctors, nurses, lawyers, politicians, actors, news anchors, singers, authors, teachers, students and people from every walk of life and age group can be heard using the "r" word. It's offensive and upsetting. My husband hears it often in his classes at Kent State University and he has corrected people. The kids on our street hear it and now some react and correct others. It's a snowball effect. I am standing up and saying 'NO! I will NOT tolerate that language!' My voice is joining THOUSANDS of other voices all proclaiming the same thing "THIS WORD IS UNACCEPTABLE!" Soon our voices may drown out those of overpaid actors and sports stars and we can change things. I have hope. I will continue to fight. I need to remember that things DO NOT change over night. I need to keep the faith that I can do this- I CAN change how people see kids like mine. I CAN change what opportunities people with disabilities are given. I CAN change the language people see as acceptable. I am strong and capable and I am NEVER going to quit fighting for Casey and Connor and for EVERY SINGLE PERSON WITH ANY DISABILITY. I will NEVER give up on trying to make this a better world for ALL CHILDREN to grow up in. You are all on this journey with me! Help me. Share the link to the Spread the Word to End the Word campaign http://www.r-word.org/ and have your kids, friends and family pledge to stop using the word retard and retarded. Post it to celebrity twitter and facebook pages. Make people aware! It will take time. It just so happens we all have time to spare.

Thanks for all the support. Please keep sharing this blog (use the buttons at the bottom of the post to share) and keep the faith that every time you stand up and say "No!" YOU are making a difference! As always, feel free to contact me at meghan_wilkinson10808@yahoo.com or find Casey and Connor on FaceBook and become a fan!

"Every worthwhile accomplishment, big or little, has its stages of drudgery and triumph; a beginning, a struggle and a victory." Ghandi

It's All About Attitude

To be perfectly honest- I SHOULD be in bed. In fact, I was upstairs brushing my teeth and yawning- yearning for the comfort of a bed already warmed by husband- when I realized I had been mentally writing a new blog post. Who am I to deny the flow of words??

I want to start with this quote:

“The longer I live, the more I realize the impact of attitude on life. Attitude, to me, is more important than facts. It is more important than the past, the education, the money, than circumstances, than failure, than successes, than what other people think or say or do. It is more important than appearance, giftedness or skill. It will make or break a company... a church... a home. The remarkable thing is we have a choice everyday regarding the attitude we will embrace for that day. We cannot change our past... we cannot change the fact that people will act in a certain way. We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude. I am convinced that life is 10% what happens to me and 90% of how I react to it. And so it is with you... we are in charge of our Attitudes.”- Charles R. Swindoll

When I first heard this quote I was 20. I was working for a man whom I admired and respected very much. Mike was a heck of a boss. He was, by far, one of the biggest influences on my early adulthood. I will always remember him.

Mike loved this quote. He had me print it out and post it on the bulletin board above the phones at the pizza shop he owned and I helped manage. I read it every day. It made a HUGE impact on me and I still think of it to this day- nearly 12 years later. I can't thank him enough for this.

I was talking to a friend tonight. She is a wonderful mom. She is also blessed to be part of the DS community. I really like her. And, though we have never met in real life, I feel a strong connection to her. She is honest and funny and she is REAL.

She said something to me tonight that I have been thinking on so much and it's funny she said it to me tonight because I had a separate experience today which directly relates. She said to me, "I don't love the DS."

I have said numerous times that I would not change my boys for anything. If I were given a wish it would not be to remove their 3rd 21sts. Until tonight, no one has made me think about that too much. She did.

Here is my reasoning. Casey and Connor are everything I never knew I needed or wanted in my life. They are the reason I am who I am today. More importantly, the fact that they have DS is a HUGE reason why I have grown and evolved into who I am. If I were to change this one thing about them I would change everything about my life today. I would not have the friends I have. I would not be as patient and caring. I would probably not have gone back to church and focused on my faith as I have. I would not be as happy with me. If I were to remove that teeny tiny little extra genetic material my ENTIRE LIFE WOULD BE DIFFERENT.

Think about that- the very thing that pregnant women dread, pray to happen to someone else's baby, not theirs- is the exact thing that has made my life and ME into something to be proud of. That's heavy stuff. If it weren't for Casey and Connor's DS I would have continued going about my life as a self-centered jerk, using the R word, judging people, not caring- pretty much just sucking. Instead, God gave me my sons and in doing so he blessed me with something else many people pray for- a second chance at living a life to be remembered. PRAISE BE TO GOD!

The first few days after "The Diagnosis" were a roller coaster. I was devastated and in love, I was broken and battered and also made whole, I was destroyed and rebuilt. Honestly- it was almost too much to keep up with- I went through every emotion known to man- and then some. At the end of those days though I came out of the darkness and into a world that is so much better and more beautiful than any I had ever known.

When I looked into the stunningly beautiful faces of my sons I felt the weight of the job given to me- it weighed heavy on me but at the same time- I knew I was capable of succeeding and making a difference. I made the decision that I would go into the world and spread the word that life is not over because you have a child/ren with a disability. It's just a new path.

In the last 21 months I have learned so much. I have learned that life really IS about your attitude. I am positive and upbeat about everything in our lives about 99.5% of the time. There are days when I feel sad, or overwhelmed or just plain sorry for myself but then I remember that Casey and Connor deserve to have a mother that cherishes them- as they are- no questions- no limits.

I mentioned another incident that happened earlier in the day. While we were waiting for Matt to finish his last class on campus today, the boys and I were sitting on a bench enjoying the beautiful day and watching all the people. They loved all the "big boys"- aka college boys- walking by. They smiled and waved and even got a few high 5's from these 19 and 20 somethings. It was great.

Sitting on the bench beside us was a very pretty woman. She was polite and smiled and asked the usual questions we get- 'Are they twins' 'How old' 'What are their names'- the basics. Then she asked me if they were walking and talking a lot. I smiled and said, "No. They both have Down syndrome and they are delayed a bit in those areas but we get closer everyday." She looked at them, looked at me and said, 'I'm sorry, I didn't know.' I told her many people don't notice and that they are the biggest blessings in my whole life. We talked more- about her 6 month old son, her desire for another baby, the boys' fan page (shameless plugs all around!!) and she thanked me for talking with her.

As she was leaving she said to me 'Many people are afraid of having a child with Down syndrome and here you are, and you are SO happy. Smiling. It's inspiring.' My heart sang. She told me she'd look the boys up on Facebook. I hope she does. I also hope she reads this so she knows how much she truly touched my heart today. A few minutes after she left another woman- barely a woman- came out and said to me that the boys are the the most adorable babies she'd ever seen. She asked me, 'Do they have Down syndrome?' I said yes. She went on to explain that her uncle who is almost 40 has DS and is 'so high functioning you'd never know it' and he is 'awesome.' She stayed long enough for C&C to smile and flirt a little and left as Matt came out of the building.

I love days like this. I love to meet new people and tell them that my life is amazing and worth living and that Casey and Connor lead full lives. I love meeting people who already know what I know- that DS is beautiful and the people who have it are angels on Earth.

My attitude about our life is one of positivity and hope. I believe with all my heart that I can make a difference and that C&C can and will accomplish amazing things. If my attitude were any different I don't think I could function.

So, here is my conclusion. I love Casey and Connor. I love every single thing about them from their beautiful almond shaped eyes, their single palmar crease, the broad flat plane of the bridge of their nose. I love their perfect little toes, their curiosity, their hugs, their moods, their belly buttons. Everything. Every. Last. Chromosome.

I even love the DS.

Food for thought- “We are all faced with a series of great opportunities brilliantly disguised as impossible situations.” Chuck R. Swindoll

What will YOU do with your great opportunities?

xoxo, Meghan

It is what it is.

When I began this blog I did so because I wanted to teach people what Down syndrome is really all about. I wanted people to know that it is not the end of the world and I figured that if I could save one unborn baby diagnosed with DS from being aborted I would have been a success.

My goals remain the same. I also made a promise to myself that what I write is honest and heartfelt and as real as I could make it- no matter what. If I am going to be true to that goal then I have to make this post.

My sons amaze me. Honestly. Everything they do is so cool. I am sure all mothers feel that way about their kids but there is a depth to Casey and Connor that I was not expecting. I'll explain.

The other day Casey was busy at work with his Mega Bloks. He LOVES his blocks. That boy is one heck of a tower builder! The amazing thing is- during this particular session he built a tower of only blue blocks. There are red blocks and yellow blocks, and green and orange blocks all mixed in but Casey wanted only the blue ones. He really thinks things through. He is patient and he knows what he wants and he does it.

This is not the first time Casey has searched for the right blocks to make a creation come to life. We have a great video of him building where he is searching for specific blocks. He sometimes only wants blocks with 2 posts or sometimes he wants ones with 3. He shows a level of concentration that I was not expecting and am continually impressed with.

Connor is no different. He loves books. He will sit and look at books for 30 minutes or more. He studies the pages, he has favorites and he adores being read to. He watches so closely when people speak to him. He watches and tries to imitate. He is fascinated by words.

My sons are incredible. They are funny. They love music. They have incredible rhythm.They love one another. They high five friends and family and strangers alike. There is nothing about Casey and Connor that is not magical.

They are my miracle men.

I am proud of them everyday. I love them more than I thought I could ever love another person- or people. I would not change anything about them.

I say all that because there are times when I do feel a little sad. I mentioned before my group of mom friends that were all pregnant at the same time. They all talk about what their kids are doing and I feel left behind, out of the loop- alone. I love to read about their children and their children's milestones but there are times when I read those things and there is this little nagging in me that says, 'I want those experience.' It may actually be worse with my friends I see in person who have babies that are younger than my miracle men and I see in real time how much these other babies do that the guys don't. Yet.

I know comparing kids is not the way to go and I also know that each child is different and comparing C&C to their typical peers is not ideal but I can not help myself.

I wish I could explain how much I long to hear the words mommy, daddy, and I love you. I wish I could tell you how much it hurts to see babies younger than my boys up and walking or doing somersaults. I wish that I could explain the deep and difficult to ignore feelings of jealousy I have when someone posts a story about the amazingly funny thing their child said. I get impatient. I don't mean to and I do try to keep myself in check because I never want my boys to think for one millisecond that they aren't good enough or I wish that they were different. They are better than good enough and they are PERFECT as they are but as a mother, I want to see milestones. I love the scenic route. I really and truly do. However, there are times the turnpike is faster and you just want to get where you're going.

The true problem lies in me. I have trouble admitting sometimes that this is a tough journey for me. I don't bemoan my life. I am truly and profoundly grateful for every single blessing in my life. God has given me a beautiful family, a solid faith, health, love, happiness, friendship and so much more. But to be perfectly honest- there are times it's rough. I worry over all the what ifs of the future. I wonder if the boys will be happy. I wonder if they will have friends, be treated kindly, fall in love. I worry kids will pick on them or that they will have a teacher who just doesn't want to deal with them. I worry about far worse things that I won't write about.

I know that no child's future is certain but the reality is- there are a lot more gray areas in my sons' lives than there are in a child born without disabilities. The biggest obstacle that my sons and others with DS face is the stigma that comes from the label DOWN SYNDROME. People who don't know better assume the worst or they believe in the inaccurate portrayals of people with disabilities that Hollywood spews about. It's getting harder for me to decide who to tell about C&C if they have never met them. (For the record- I feel utterly disgusted with myself for admitting this)

This came up recently. My husband and I just joined the Natatorium- it's our community rec and aquatic center. There is a child care facility in the Nat for children ages 1 and up for when parents are working out. On the information sheet all parents are required to fill out there is a question about any disabilities your child has. I debated putting anything down. It went something like this:
Me: does it really matter? I don't want them to be judged because I wrote DS on a stupid form. I'm not writing anything.
Me part 2: What if something happened to the boys and they are not covered because you didn't disclose they have DS?
Me: Well, I am not ashamed they have DS why not just tell the caregivers? That way- if there are questions you can use it to educate them.
Me: What if they are not as nice or as welcoming to the boys because they know and they are ignorant about DS?
Me: This is stupid, just write it. Be proud of your kids. Let them shine and show people what that bonus 21st is all about.

In the end I wrote this: Casey and Connor have Down Syndrome. They have no medical issues that will affect their care. They are a little delayed in gross motor skills. There are NO SPECIAL REQUIREMENTS for their care.

I hate what I wrote but it's straightforward.

At the end of the day, Casey and Connor will be who they are and accomplish what they accomplish. I can't change it I can only support, encourage and gently nudge them to be the absolute best they can be.

Here's one more lesson I am learning. Casey and Connor are the ones who are perfect in our family. I am the flawed one.

They are making me into a better version of me. There are certain things that are harder to change about me.

They are patient teachers though. I will continue to strive to be the very best mother and Meghan I can be.