Saturday, September 21, 2013

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!


















Wednesday, May 15, 2013

Hold tight to the kisses.

I wish that toddlers understood what the waving of a white flag meant. If they did they would have noticed me surrendering today to the insanity that three children 3 and under brings. I have a confession- I am sometimes a complete wreck of a mother.

I am a fraud.

I am impatient and frustrated.

I raise my voice.

I feel awful.

When I go to do my sessions at Akron Children's Hospital with the 3rd year medical students I make it a point to share how amazing my life is with them. I want these future docs to know that my life is full and happy and that C&C have FULL and HAPPY lives as well. When I talk to other parents or parents just getting the diagnosis that is the central theme- life is good.

And it is. Sweet. Happy. Full. Meaningful.

But there are times- though not many- that I find myself utterly and completely overwhelmed and just... sad.

Today was one of those days. I know how smart Casey and Connor are and I know that they understand the vast majority of what we say to them. I also know that they are 3 and as such just choose not to listen sometimes. The morning went something like this:


Connor hitting Reagan.
Me: Don't hit your sister, Connor. It's not nice and it makes her cry.
Connor sits on Reagan.
Me: Connor! Don't sit on your sister!
Casey whines for something but I don't know what because he won't use his signs this morning.
Me: Casey Bear, what can I do for you?
Casey: Ahh. Ehh. Cry.
Me: Signing: Waffle? Milk? Toast? Cereal?
Casey: Cries to each suggestion and thrusts arm toward kitchen.
Me: Casey I... Connor- don't pinch the baby! Not nice!
Casey: Crying.
Connor: Laughing, sits on Reagan again.
Reagan: screaming like someone has just cut off a limb.
Me: Connor Thomas! Get off your sister. (Pick him up and put him on the recliner) (Pick up Reagan and soothe her.)
Casey: cries louder and gestures toward kitchen.
Me: Buddy, what do you want? More signing, Milk? Waffle? Yogurt (which I have no idea how to sign so I just ask him.).
Casey: yells something indecipherable.
Me: I don't know what you want! Can you show me? I let him in the kitchen. He sits on the floor and cries. Then he signs car.
Me: You want Cars? Do you want to play with your cars?
Casey: Ehhghsua.
Me: ??? DO you want to watch cars?
Casey: Signs waffle.
Me: You want to eat a waffle?
Casey: Signs yes.

Seriously?? Didn't I ask that 10 minutes ago? We get the waffle. Put it in the toaster. Then hear crying.

Rush out of the kitchen- Connor! Get off your sister! She is not a chair!

Move Connor, soothe Reagan. Casey's waffle pops up. Grab that, blow on it to cool it down, hand it to him.

Casey: looks at waffle, throws himself to the floor and sobs.

Me: (deep breath) Buddy?? How about some cereal.

Casey: pops head up and says "oohh"

Get out cheerios. Pour in a bowl. Hand to Casey. He looks at the bowl. Turns it over. Dumps cereal. Stands up, steps on it. Sits in the middle of it and eats it. Until Regan crawls over and eats an "O" and then Casey doesn't want it anymore.

Time to get ready for school. Shoes on. Socks on. Grab sweatshirts. Connor taking shoes off. Reagan stands by the bench. Casey pushes her over and she hits the chair. She screams and cries. I soothe Reagan while scolding Casey and putting Connor's socks and shoes back on. Dog knocks toothbrush off counter and licks toothpaste off. I vaguely wonder if it's poisonous. Find that at that moment I just don't care. (Great! I'm an admitted awful dog parent now, too!) Wash off toothbrush, brush the boys "dinosaur teeth" one toothbrush in each hand. Clean their faces and hands. Turn to take the wipes and toothbrushes into the kitchen when Casey pushes Reagan over and then Connor shoves Casey. I make Casey sign I'm sorry and make Connor help Casey up and sign I'm sorry. He wasn't sorry. He pushes his brother again. I take a deep breath. Put Reagan in high chair. Get her shoes. Connor walks over and starts spitting on her. Nice. Casey pinches her arm. She cries. I scold boys and tell them they must be kind to their sister. They both walk away. Get Reagan ready to leave. I run upstairs and change out of pajamas. Decide that I should brush my hair. Ponytail. Headband. Back down stairs in under 2 minutes. Grab my jacket. Both boys now spitting on baby. Seriously??? Where did they learn THAT??? Grab keys. Pick up Reagan, usher boys through kitchen to the door. Get them all to the van. Connor in a seat. Casey opens other side door. He's going to leave. Run around to the other side, put him in a car seat. Reagan crawling freely, finds crackers. Dumps them over. Squishes into floor. Grab her, put her in seat. Back out of garage. Drive to school.

Once at school, get Reagan out and into her stroller. Realize my back hurts so bad I can barely stand up straight. Get Connor out of seat. Get Casey out of seat. Have one push stroller, the other hold my hand. Casey refuses to walk. I pick him up and help Connor push Reagan. Connor realizes Casey is being carried and must also be carried. My back will not allow for that today. I put Casey down and ask him to push. He refuses. Feel like a terrible mother who can't get her kids in the damn building. Feel bad for thinking it's a damn building.

Pick Casey back up and coax Connor along one step at a time. Connor sits down on the sidewalk. Refuses to move. I look at Casey and say with as much gusto and excitement as possible- do you want to walk or push your sister in the stroller. He chooses to push. Score! I thank him for being such a good boy. Connor no longer wants to be carried. He wants to walk in the grass. Fine. Good. Do it. Points out trees. I tell him that they are trees. Ask him if he hears the birds? He apparently hates birds. Starts to cry and throws his arms up to be carried. A 500 foot walk to the door has now taken 6 minutes. Casey pushes stroller off the sidewalk. I can't get it back up by myself. Amazing door monitor comes to help me. I nearly start to cry because I know I look like a complete friggin wreck.

Sniff. What's. Sniff. That? Casey. Did you just poop, buddy? Awesome. Carrying both boys now, get stroller stuck. Lots of offers to help me. I look like a total douche who is going to start sobbing. Smile. Thank everyone and say, we're just having one of those mornings. They either know exactly what I'm talking about or think I suck at life. I don't care which.

5 minutes later we are down the hall. And Casey finds his locker and picks his name out of the two choices on the door. He is correct on the first try. I'm so proud of him. I feel like such an ass for being frustrated. Connor picks his name correctly and looks up for a "bye bye kiss". I happily oblige. Walk him in, ask for a diaper and wipes for Casey.

Nearly start sobbing. Their teachers are so kind and wonderful. I love these ladies. I see Michelle. Sophia's mommy. I really like her. She is such a great person. She has really beautiful and kind eyes and she tells me she couldn't wait to see me today because she met my "biggest fan", a neighbor of hers who has been reading this blog since the boys were babies. I am so touched that I can no longer hold in the tears. I just start crying. She asks if I want to go get coffee. I jokingly say, margarita? And then, I do what I always do and say no. She has no idea how much her offer means to me. How much I just love her kindness.

Being a stay at home mom is lonely. Being the mom of kids with special needs is lonely. Being a mom in general is hard work. Harder than I ever imagined. These days when the lack of communication between my sweet boys and me makes even the simplest things- like, what do you want for breakfast?- seem like impossible interactions, I feel really alone. And tired. And honestly- like a horrible jerk- when I get frustrated at the children I live and breathe for.

These are the days I call my mom and sob and ask her if they will always be crazy. I need her to reassure me that I am normal and not awful for occasionally losing it and raising my voice or feeling frustrated. And I just cry and cry and cry.

So, today was rough. Really. Freaking. Hard. And I think, I can't do this. I can't. I'm not a good mother. I am not cut out for this. But then I realize- there is nothing I want more than to be their mother. There is no job in this world that is harder or more likely to drive me to absolute brink of madness but then can pull me back from the edge and fill my heart with such unbelievable joy because my 3 year old can finally recognize his own name on a locker and I think- holy crap! That is amazing. Those moments fill me up with the power to keep moving forward and plugging along. They recharge my batteries enough to face the rest of the day with a smile. Sure, there will be more moments like today. And I know there will be days that are just as hard and harder but then I am comforted in knowing that I am not alone. There are the Michelle's who want to get coffee. There are the Brooke and Rachel's who offer to change the poopy diaper. There are Mommy's who let you cry on the phone and offer up a prayer for your strength. There are my children who give me bye bye kisses and smile at me and in those smiles I see the very perfection that I live to share with as many as possible. And despite the bad morning I know that life is good and it could be so much worse. I am blessed with support and and love and I have my wonderful husband to share the journey with and to share the load. I have people all over the world who read this blog and maybe more than a few who offer up similar prayers for strength.

So, thank you for the support. Thank you for the love. Thank you for your kind emails and comments that let me know I am not alone. Thanks for saying, "We all have bad days." And to you I say, "You make this ride even more worthwhile." And to all the moms with unique situations, maybe raising a non verbal child or a medically fragile child or ANY child with ANY ability, I want you to know, bad days happen. As long as you can love your child and appreciate the sweet, little moments, things will be fine. In 10 years I won't remember today was a crappy day- but I will remember that a tiny human looked at me like I was the most important person in his world and he just HAD to give me a sweet little kiss.

Sage advice for the day. Let go of the frustrations. But hold tight to the kisses. The kisses are what matter most.



Friday, April 12, 2013

Open letter to the Summit County ESC

The following is a letter I wrote to the leadership team of the Summit County ESC and the preschool program. As my regular readers are well aware, Casey and Connor started school for the first time in January, and you all know how thrilled we have been with the experience. The biggest part of the joy we feel is due to the excellent teachers and therapists the boys have been working with at school who help them to reach their full potential.

Miss Brooke and Miss Rachel have made school one of the boys' favorite places to go and have helped them make progress in areas that I had no clue how to even begin to explore with my guys. Their therapists are also wonderful. Their speech therapist is a huge part of the reason they finally said momma and Casey and Connor clearly love her. Their PT/OT teams are top notch and the guys have made huge strides in both gross and fine motor skills. I am absolutely thrilled.

When we were at the school yesterday (4/11/13) for our very first Parent Teacher conferences we were informed that Miss Brooke would likely not be their teacher next year as she was being moved to another position and we were also told that their ST was let go due to budget concerns. These are decisions I am absolutely devastated by and I have the distinct impression that their teachers feel the same way.

When we began the program, one of the things I was happiest about was that the boys would likely remain with the same group of children and the same teaching team for their entire time at school. I was ecstatic because Casey and Connor thrive in an environment that is predictable and comfortable. The fact that they are losing both their beloved teacher AND their speech therapist is just unacceptable to me. I am also VERY upset that the parents in the program were neither notified of potential changes nor given an opportunity to express concerns over the change. And so, as is my way, I made my own opportunity to let my thoughts be heard. If nothing else, the leadership of this program deserves to know that the teachers and therapists they have in place are heads above many others and that they have a chance to recognize these professionals for their dedication and hard work. That is also why I chose to share this letter here. Brooke and the boys ST deserve recognition for the difference they have made in our lives and in the lives of so many other children. Their love for their work and for their students is apparent in everything they do and say. Again, I feel this is a HUGE loss for my sweet boys.

Here is the letter. Thoughts and comments are always welcome. I would love to know what you would do or how you would help your children transition in this situation.




To whom it may concern,

I am the mother of Casey and Connor Wilkinson, 3 year old twins with Down syndrome who are in Brooke Gray's class at Newberry preschool. My boys began school in January of this year and it was a very difficult time for me as their mother. It was difficult both because it was the first time my sons had ever been away from me and also because they are non-verbal and therefore unable to communicate what happened during the day while we were apart. Sending the boys to school took a tremendous amount of trust in the teachers who would spend the days with my little miracle men. When I met Brooke and Rachel the first time I knew that Casey and Connor would be well cared for and well educated. Now, months later, we have just finished our very first parent teacher conferences and I am absolutely thrilled with the progress they have made. I have nothing but wonderful things to say about Miss Brooke and Miss Rachel. Not only have they helped bring out the best in my boys they have proven to me that we made the right decision in sending them to school. Most importantly to me, as their mother, I have 100% confidence that not only are my boys learning something new every single day, but they are also well-loved by their teachers and therapists.

I'd like to share a perfect example of how these teachers have gone above and beyond to make a nervous mom feel calm and heard. A few weeks ago, I approached Brooke about my bringing a special snack in on March 21st, the last day before Spring break and also, World Down syndrome day, which I asked if the class could celebrate with Casey and Connor. The answer I got was "Yes! Of course!" I expected only to bring in cookies in the Down syndrome awareness colors of blue and yellow. What I got was amazing beyond my wildest dreams. Brooke and Rachel decided that they would take the opportunity to really educate the other children and teachers about World Down syndrome day and to REALLY promote inclusion and acceptance of my sweet little men and all those with Down syndrome. As class projects they helped each child in the class tie dye a shirt, they made blue and yellow tissue paper flowers for each teacher and Rachel, during her own time, made 75 blue and yellow cake pops with World Down syndrome day tags to hand out to each student and teacher in the school! They also made blue and yellow hand print magnets with the DS awareness ribbon to hang on each door and for each child in the class to take home. When the morning of March 21st came I went in to drop the boys off and was absolutely blown away by all they did. Truth be told, I was a sobbing, utterly grateful mess.

They loaded the boys up in a wagon and pulled them to each class where the kids wished their schoolmates Happy Down Syndrome day. The memories that were made that morning will live with me for the rest of my life. When I share that story with other parents with children with Down syndrome they tell me they only WISH their kids had teachers who cared enough to do so much and who so willingly and exuberantly celebrated the joy of their child's special genetic makeup. Other parents in the class told me their kids wear the shirts they made all the time and talk about how much they loved that party. So, not only do Brooke and Rachel teach all the kids in the class what they have to teach them, they also go above and beyond to teach them lessons that everyone should learn- lessons such as we are all more alike than different, and friends are friends regardless of a diagnosis.

The point of this email is to really extend my gratitude for the program that is available in our community but also to send much needed praise and express my admiration for the outstanding teachers and therapists that are in place within the school in particular Brooke and Rachel. It should also be known that they boys' therapists at school are utterly outstanding. With the expertise from Pam McGill and her gentle guidance my boys have improved in their speech and communication with both of them saying momma for the very first time!!

I am first and foremost Casey and Connor's mother but I am also a Board Member for the Summit DD, a tireless advocate for those with Down syndrome, an active member of 2 Down syndrome parent advocacy groups, a weekly lecturer at Akron Children's hospital in the Medical Education department where I talk openly and honestly about Down syndrome with 3rd year medical students. I have twice presented a parent run information session for medical students at Case Western Reserve University's Genetic Anomaly Conference and I am an avid blogger, writing about our family and our experiences in the world of disabilities. I say all that so that you know what my background is and also so that you have a point of reference when I tell you I hear about many experiences from family members, self advocates and medical professionals and many of those experiences are not the stellar examples of professionalism and caring I have share with you today.

As I mentioned earlier, we had our very first parent teacher conferences today and when I inquired about what the plan was to be for next year, Brooke and Rachel hesitantly but honestly answered that their amazing team was likely going to be split up and a new teacher would be taking Brooke's place. I was also informed that Pam McGill was let go and the boys would be getting a new speech therapist next year. I was so sad that I cried. And, as I sit here writing this letter, the tears are once again burning in my eyes. I don't know if my letter can change anything but I had to take the time to express my heartfelt desire that Miss Brooke remain at Newberry and remain in the same classroom and with my boys. A new teacher and a new speech therapist is far too much change. Furthermore, to change so much of the routine and team that they are comfortable with would be utterly detrimental to my sons' progress. My sons thrive best in an environment they can count on and where they know what and who to expect. Casey and Connor have blossomed since starting preschool. They are comfortable and happy and I feel safe with the teachers they have. I know that they have the very best intentions for my sons and that Casey and Connor's success is as important to Brooke and Rachel as it is to my husband and me.

As a parent, a tax payer and a voter who has supported the school levies in this city I felt it was my duty to share my positive experience with you and it was my right to ask for what I feel is best for my children. I am their voice, their advocate and I know that I am not alone in my admiration for Brooke and Rachel. I also want you to know that this letter will be shared as an open letter with a brief introduction on my blog, The 3rd 21st and on my sons' advocacy page on Facebook, as I strive to share all we are going through with my readers. You can view the Facebook page at www.facebook.com/CaseyandConnor and the blog at http://caseynconnor12409.blogspot.com/ This is solely to share with other parents how positive our school experience has been and also to share the sadness we feel at potentially losing such an outstanding educator.

Thank you for your time and consideration in this matter. I look forward to any response you can provide.

Sincerely,
Meghan M. Wilkinson



God doesn't give children with special needs to strong people; He gives children with special needs to ordinary, weak people and then gives them strength. Raising a child with Down syndrome doesn't TAKE a special family, it MAKES a special family....

Tuesday, April 9, 2013

Hey! Guess what! I'm not perfect. And it's ok!

There was a brief period of time recently when I debated quitting my blog. I felt  like I just wasn't making the time to do it justice and I feel like I am just halfheartedly trying to keep up. Then I really started thinking about deleting the whole thing. I really needed to explore the reason behind wanting to quit. Was it HONESTLY because I don't have the time? Certainly I am busy but too busy to sit for 20 minutes and bang out a few hundred words to share the joys and trials of this magical ride I am on with people all over the world- some of whom may be searching for just the tiniest bit of comfort that their newly diagnosed baby will one day be ok? Then I felt selfish. And lazy. And like a failure. My goodness! I am really harsh with myself sometimes. And thus this post.



I know I can not be the only mom in the world that feels like life is full of "Should do's" "Have To's" "Want To's" and "Not a chance that will happens". I'm good with the have to's- I have to do laundry and cook because I have a family and it is my job to care for them- but those things also fall under the want to's because I WANT TO be a good wife and mother and I WANT to care for my husband and our kids.  I have even gotten to a point where I accept the "Not a chance that will happens" because I have come to terms with the fact I am NOT a superhero. There is no way I can keep my house spotless and well organized- I have 3 small tornadoes that make short work of my cleaning. I CAN keep things neat but not perfect. Well, I could keep things perfectly clean but other things would suffer- like playing outside with my kids. I have to ask myself- what matters more? A shiny, spotless floor or that one day my kids can say, "Hey mom, remember when we painted the porch with water and paintbrushes and then we took off our shoes and socks and splashed in the water? That was fun!" I have learned the balancing act to some extent.

But then there are the should do's. Of all the things in my life that get to me it's the should do's. Things I should do but typically don't and feel ridiculously guilty about. I should work out everyday. I should write for the blog at least twice a week. I should clean the basement. I should find time to volunteer more. I should really make plans for the summer so I can make sure the boys are developing in the areas where they are behind. I should go to play dates. I should just quit sucking at things. I should dedicate myself to my home business. And on. And on. And on. And at the end of the day when I am trying to go to sleep all I find myself thinking of is all that I SHOULD HAVE gotten accomplished and how guilty I feel for failing.

Why do I do this to myself? Why do any of us? As I stated earlier- I KNOW I am not the only one who berates herself for not being that mom. The one who always seems to be on top of her game. The one who manages the household budget, Girl Scout troops, bake sales and is active in her church, at her kids schools and in her community. The one who always looks great, is running off to Zumba, while selling record setting amounts of Tastefully Simple or Partylite candles (or in my case ACE and Saba products) and somehow she is always on time and never looks frazzled. Always a smile on her face, never yelling at her perfectly mannered children. And on top of it all she has amazing dates with her husband and still somehow manages to find time for herself to craft and write a blog with thousands of followers.

And then it hit me! That mom doesn't actually exist! You may be thinking "Wait! What? This woman is crazy!" But I'm not and I am right. There are NO mothers out there who can do EVERYTHING. We all have our strengths and weaknesses. Every mom has moments where her patience is tested and she has days where she just feels like a failure. We will all have the "time out in the middle of the zoo" days. That's why they make wine. In all seriousness, perfection is in the eye of the beholder. The mom I look at with envy and awe is just as screwy as I am and has just as many moments of self doubt and thoughts of her own incompetence. To all the people who have called me a supermom- haha! Fooled ya!






So, realizing I am not the only who falls short of their ideas of what makes a good mom I now know as long as I am trying- moving forward and doing my best I don't have to do everything! I just have to do what I can. WHAT A BREAKTHROUGH!!!! I don't have to be PERFECT. I just have to try my best and love my kids and husband and remember to be thankful for all that I have. I can handle that.

I even made an e-card for this post! This is serious!


So, in light of this recent revelation I have decided to keep my blog and write when I can. I'll get here when I can and share my ramblings and smiles and lots of pictures of the kids who inspire me to try to be the best mom possible. 



AND I will encourage other moms to realize their value and their contributions to their households, their kids and the larger world there. So, great job moms! If you got up today and hugged yoiur kids and made them feel important and worthwhile you are already a success. If you didn't do that yet, the day is long- take the next chance you get to love your kids and make them realize you try your best because they matter.

Oh, yeah- be nice to yourself, too. You have a big job to do and you are doing great.


Thursday, March 21, 2013

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

Monday, March 18, 2013

Dear Spring- ANY DAY NOW!

You know your life is interesting when the nurses at your local children's hospital know you by name, know your children's names and know that "you were just in here the other day." Yes, friends, we have had a heck of a ride since the beginning of the year. Since January 21st we have had Connor's eye surgery and shortly after we came home that same day, Casey was seen in the ER and admitted over night for fluids for dehydration from a nasty GI bug.

Connor pre-surgery

Casey and his bucket in the ER



 Two weeks later Casey was back in the ER and then admitted for the same GI bug and dehydration, while Reagan was seen in the ER after visiting twice with her pediatrician and having 6 days of a fever over 102.





Connor was then seen by a gastroenterologist about his 2 hospital stays in 2012 for dehydration and bilious vomiting and was ordered to have an upper GI study with barium. Casey was then seen in the ER and hospitalized with a nasty case of croup that required a couple of breathing treatments and a steroid shot, and we ended it with an ER trip and hospitalization for Connor who somehow morphed the virus that caused Casey's croup into a virus that caused coughing, fever and bilious vomiting in him. So, to add that up that's 1 surgery, 5 ER trips and 4 overnight hospital stays and 1 upper GI study just since January 21st- so just less than 3 months. Is it any wonder I have not had time to update my little blog??

I must admit that Matthew and I are feeling a little beaten up and at times have felt slightly defeated. Three kids 3 years old and under is a lot of work but when all 3 are always sick it's a whole new ballgame, folks! My amazing pediatrician assures me that once Spring comes and the boys get a little bigger and stronger their immune systems will bulk up and we won't always be frequent fliers at the ER. Can I just say how much I can't WAIT for that day?

There were times when I felt like I was surely going to lose my mind. I felt like I could not handle one more minute of sick kiddo when that wonderful thing called perspective would slap me upside the head and remind me that we have it pretty damn good. I would remember that these were all normal childhood viruses and that though they were coming one right after another, they were just little things. It could be so much worse. Once I thought about the fact that my boys have healthy hearts, don't have cancer, and don't have some other debilitating disease I was able to look up and thank GOD for blessing me with 3 healthy kids. Someone's road is always harder than mine and I do well to remember to count the blessings I have and to realize that they are numerous. Once that happens, though I am tired I am no longer down and feeling beaten. Life is much sweeter when you can count the joys and know they wouldn't be as sweet without the occasional setbacks.




In other news, we filmed our commercial for the Summit DD and the Disabilities Awareness Month Campaign and my sweet little family is featured throughout our county on several billboards. What an honor to be the voice of such an important message- that despite having kids with disabilities I AM THE LUCKY ONE!  Here are both the link to the commercial on YouTube and a photo of our billboard.

 Click the link below to watch:
I AM THE LUCKY ONE


Myth: Having children with special needs, people feel sorry for me. FACT: I AM THE LUCKY ONE!


Reagan is just getting up from her morning nap so I'll have to end this update! Thanks for hanging in with us! Remember to like Casey and Connor on Facebook at www.facebook.com/CaseyandConnor and write on their wall!

Also remember that this Thursday 3/21 is World Down Syndrome Day! Wear your blue and yellow and spread the word that the 3rd 21st is the chromosome for cool! Love to you all!!

-Meghan

Wednesday, January 30, 2013

Open Letter to Q-92 and Mo of the Mo Show

 This post is an open letter to Q92 in Alliance, Ohio, and Mo, host of the Mo Show. Recently, a beautiful woman with Down syndrome mistakenly dialed the station's number thinking it was the phone number of a friend of hers. Mo took the opportunity to humiliate her, recorded the phone call and played it on the air for all to hear and laugh along. I am sickened by this and this is my response to his prank. If you would like to read the news story please visit http://www.timesreporter.com/features/x898122120/Radio-DJ-mocks-Strasburg-woman-with-disability-family-responds?photo=0&zc_p=1


Dear Mo,

I had never heard of you until today and I can honestly tell you that my initial impression of you is not all that positive. In fact, I would likely refer to you as a bully based solely on what I do know. But, words are powerful things and as I do not know you- I won't even stoop to calling you what many already are.

I want to tell you a story. It's an important one so I honestly hope you will take the time to read this and reflect on it. I am the mother of 3 children. I have two sons and a daughter. My sons are identical twins and they are absolutely incredible. They have huge brown eyes, they smile and laugh all the time but can throw a temper tantrum that could stop traffic. They give incredible hugs but their favorite greeting for a friend is a fist bump or a high five! They are really typical 3 year olds. They LOVE cars, playing basketball, and they love to paint and listen to music. They adore dinosaurs- the T-Rex especially, and they think nothing is better than playing in the backyard with our family dog. They love little girls (ok, in all honesty- they love all girls and women, regardless of their age.) They like building with their blocks and watching the movies Cars and Cars 2. The get really excited about big trucks and motorcycles. In short- they are just like every other 3 year old boy out there.

Today, as we got out the van and started walking into school I heard a sweet little voice say behind me, "That's Casey and Connor! They are my friends, mommy!" It was a perfect moment- one of many that I have had with my boys- and I can tell you, even my heart smiled. Why is that such a big deal? Because that sweet little girl who exclaimed proudly that Casey and Connor are her friends said so without any idea that there is a difference between her and the boys. She sees them and sees only their awesome personalities. But there is a small difference between her and my boys. See, my boys have Down syndrome and there are many who see them and only see limitations or an easy target for mockery and cruelty.

When Casey and Connor were just 10 weeks old I made a post in a support group for parents of children with Down syndrome on Facebook. It was on that forum that a man told me I should be ashamed of myself for having my kids. I should kill them. He said there were enough retards in the world and shame on me for bringing more into the world. I was shocked- unable to breathe. Heartbroken. The pain that those words caused me- still cause me- are impossible to describe to someone who has never lived through something like that. After your on air stunt involving Kellie Baker I wonder, are you that cruel? Are you capable of telling a young, first time mother that she should murder her babies because they have Down syndrome? Are you that heartless? I should hope not. Perhaps you are horrified that I could make the connection between that jerk who encouraged me to kill my 10 week old babies and you who only made a little joke at the expense of woman who made a mistake we have all made hundreds of times- she simply dialed a wrong number.

Truthfully though, there is little difference between you and Mr. Murder your kids because you both spread HATE and PAIN and you both enjoy getting a rise out of people and you both feel superior to someone who is disabled. So, there you go, Mo. You are just like the man who sent me into such a whirlwind of depression that I couldn't even look at my sweet boys for days without sobbing, wondering what terrible world I brought them into- where they would be mocked, told they should be dead, hurt. I felt like a monster for bringing children so full of innocence into a world that seeks to destroy things that are innocent and pure just for pleasure.

But I was wrong.

Casey and Connor are in this world to make it a better place. They don't seek to hurt people. They don't make fun of the kid who falls in the hallway at school. They offer their tiny little hand to help him up. They would see you in the store and smile their million dollar smiles at you and I guarantee you would smile back. They would raise their little fist to you to fist bump and they would never know that you went out of your way to humiliate, degrade and belittle a woman who also shares their syndrome. They would see you as a friend- not as the enemy. They would look at you like someone who they were thrilled to meet. And those are the reasons I am glad every single day that my babies are here. They remind me every day to be my best self. They teach me to quit judging people by how they speak or how they look. They are the reason why I want YOU to know that though there are thousands of angry people out there who wish to see you fired, to see your sponsors drop their advertising with your station, to see YOU humiliated- I am not one of them. Casey and Connor have helped me see the good in people- even ones who make idiotic mistakes, which is what I think you did. I think you made a mistake- trying to be funny and controversial. You missed the mark and instead of bringing Kellie Baker down you only succeeded in making yourself look foolish, and small and cruel. Sure, there are many out there that would defend you but there are far more that think you are a small man who hides behind a microphone and headset and chooses to use his platform to hurt someone who seeks only to get a fair break in the world.

There are kids who are bullied every day because they are different. They are tortured. Some kill themselves- some kill others. Many young people are begging for the bullying to stop. Many want nothing but peace in their schools, homes and on Facebook and Twitter. If kids "get it" why don't you? Why would you take an opportunity where you could have chosen to explain kindly to a woman she dialed the wrong number but instead you opted make fun of her and record it and play it on the air so that many people could laugh at her? Why can't you have been more like that sweet girl at my sons' school who so proudly exclaimed, "They are my friends, mommy!" Why did you choose the low road? In the end, Kellie Baker will survive this and she will have nothing but love and support. You'll survive it as well but you have forever tainted your name and your reputation with this deplorable stunt.

I hope that all the angry people out there who fight every day for their loved ones with Down syndrome show you far more compassion than you chose to show Miss Baker. Furthermore, I hope you are blessed with an opportunity to meet and get to know and love someone with Down syndrome. Your life will only be better for that chance. Before I go I want you to know that I would never trade or change my boys for anything. I would never trade my life for someone else's. I have learned that the worst thing in life is not having children with disabilities- that's a blessing. I think the worst thing in life would be to fail at my job as a mother and raise a child who would be cruel to a person with a disability. That would break my heart.

Good luck to you, Mo.

Sincerely,
Meghan M. Wilkinson
Cuyahoga Falls, Ohio


Thursday, January 24, 2013

Updates and an excuse to share lots of Pictures!

I laughed the other day when I opened my email and had 2 requests for updates about how Casey and Connor are doing in school! Thank you for reminding me that I DO have a blog and I should do a better job of writing!

Casey and Connor are doing amazing in school! They love it- all of it- getting in the van to go to school, getting out and walking into school, their lockers, their backpacks, the girls (!) and the entire experience! Their teachers and therapists are all wonderful. I honestly wonder what I was worried about. Most days I have to stop them at their classroom door and ask for a goodbye kiss. It's great.



In just 2 weeks there has been this huge blossoming in both boys. Connor is really becoming aware that things and people have names. This is a huge step. Every night he walks through the living room, touching things and looking at me and Matt and saying "ha?", like "What's this called?" We answer and he moves to something else. The other day we played for about 20 minutes and he just rotated between daddy, mommy, Casey, Reagan, ball, chair, box, desk, Bailey (our dog) and dinosaur. He would touch himself, too, and we would say "Connor" and he would smile. It's so cool!

Both boys are learning the sign for help now, too. Who knew that one small sign could make such a big difference!? Connor signs help when feeding himself and he just can't get something on the spoon or when he wants to be up on the bench at the dining room table. It's a GREAT sign!

On the health front, Connor had eye surgery on January 21st, on both eyes. He had a bilateral medial rectus recession and nasolacrimal duct probe done. Huh?? In simpler terms- Connor was going cross-eyed and the bilateral medial rectus recession simply moves a muscle in each eye back about 1/18th of an inch. The nasolacrimal duct probing was to help with his watery, runny eyes. The doctor took a very small probe and used it to gently open the tear ducts and place a teeny tiny silicon tube in his ducts to keep them open. In a few weeks that tube will be removed during an office visit and Connor's runny eye issue should be a thing of the past! As far as the muscle surgery- we won't know for a few weeks the level of success. It can take 6-8 weeks for the eyes to settle in to place and for the doctor to evaluate their position. 1 in 3 kids needs a repeat of the surgery. Please let Connor be in the 2 and not the 1! I HATED giving him to the nurse to take back to surgery.

Pre-Surgery




Casey was hospitalized with dehydration from a really nasty stomach virus that hit the whole household- minus daddy- but hit Casey the hardest. He is getting crankier by the minute so I think he is beginning to feel better. AMEN!



Other news:
Reagan continues to amaze me. At 7 months old she is crawling, pulling to stand, starting to furniture walk, can climb the first few stairs, use a straw, clap, and we think she is beginning to sign milk. She will eat anything and seems to prefer whatever we are eating over baby food though we still make her diet center around formula and fruits, veggies and cereal. Unlike her brothers, she will be a wonderful eater!




A while ago, I wrote about a photographer who contacted me about taking photos of the boys in order to raise awareness about Down syndrome. I'm certain you are well aware from your own lives, things just happen and time gets away from you and no matter how badly you may want your schedule to work, it sometimes just doesn't happen. I figured it was something that was just not meant to be but Lindsey Scholz of Lindsey Scholz Photography surprised me in the hospital after Reagan was born and did an amazing shoot right in my hospital room of both my sweet little princess and her amazing big brothers! OH MY GOSH! She is an ARTIST! If you are in the Columbus, Ohio, area and have kids or are having a new baby and want a birth or newbie session- Lindsey is absolutely amazing. You can look for her work on her FaceBook page at www.facebook.com/LindseyScholzPhotography Her newborn photos are breathtaking and I'm certain you will agree when you look at the following pictures that she captures the true child and not the one that is all poses and fake smiles. Truly, she is blessed with some fantastic talent!














That's all for now. I will definitely try to get back and post more soon!

Thanks for all the emails, comments, and new followers on Casey and Connor's FaceBook page! If you haven't "liked" their page yet you can find it at www.facebook.com/caseyandconnor and emails to me are ALWAYS welcome at meghan_wilkinson10808@yahoo.com

God bless,
Meg

Monday, December 31, 2012

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