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

Saturday, December 15, 2012

Heaven gained 26 angels

We took the boys and Reagan to get new photos taken yesterday. I was sick. I was really sick actually and by the time we finished picking which portraits we would purchase I took the keys from Matt and headed out to the van to wait in the quiet until they were finished printing the chosen photos and we could go home and I could bury my aching head under covers. Rather than making me wait Matt drove me home and I went straight to bed and buried my whole self under 3 blankets and a pillow willing the pounding in my head to cease and the rolling in my stomach to calm. Most importantly, I slept.

I slept so hard and could not tolerate sound or light that I missed the news of another school shooting until I woke up around 6 pm.

I just wanted to crawl back into my safe cocoon and un-know that 20 children and 6 adults were murdered in a place that parents should feel safe sending their babies. I can't even imagine the horror. Truthfully, I don't even want to try.

I don't want to put myself in those parents' shoes. I can't. My mind just can't go to a place that is filled with such pain. I have cried for them and their precious angels. I have wept and thanked God that it was not my kids. I have questioned HOW and WHY this keeps happening. Mostly, I just hope and pray it stops.

The thing that got me the most yesterday was when I looked over my sweet little boys staring in wonder again at the lights on our Christmas tree and I got excited again thinking about Christmas morning when they see that in addition to the beautiful lights they will be surrounded by their loving family and brightly colored packages that are mostly for them and their baby sister. I thought of the joy of the Holiday and how that joy comes from the innocence of children and their unbridled excitement- barely contained in their tiny bodies. I thought of the smiles I will flash at my husband when our children are opening gifts and playing with new toys or stealing the toys their sister receives. Then my mind reminded me that we live in a world where there are 20 more children who will not come running down the stairs to check if Santa had come.



I hate my mind.

I hate that it can go from the happiest of thoughts to ones of unbearable sadness in such a flash.

And I just let the tears fall. I left my cheeks unwiped and I allowed my heart to feel the ache of 20 little angels in Heaven and the 6 adults who joined them there. I let my whole self shake at the thought of losing one of my babies.

I looked at Matt and at Casey and at Connor and at Reagan and I called my mom and when I knew every person that my heart holds most dear was safe I felt like I could breathe. And then I remembered that my angels would be starting school in less than a month and we would be sending our two little men out into the world and we would just have to pray that they would be safe. And I have to say- even with as much faith as I have in God and in His love- I am terrified to send my children to a place where I can't be with them, protecting them myself. I have to send them out into a world where people wander about with anger and hate in their hearts and one day they decide to let the evil take over and they kill. Maybe they kill just one person and we don't hear about it or they kill 2 or 3 and it may get a brief mention on the nightly news. Or, as happened today in Connecticut, the person decides to forever change the entire world and take away 20 innocents. 20 people who have never hurt someone and who still viewed the world as a place of wonder and saw the joy in everyday things. That man also took away 6 adults- some of whom used their bodies to protect those children. My mind can't comprehend the evil that does this. My mind doesn't understand the world that we live in that allows such hate to exist.

I don't know what to do about all this. I don't have any answers. I have prayers and hopes that we can somehow save humanity from itself. I pray that I NEVER have to bury one of my children. I pray that those families that do can find some kind of peace.

For now, I will hold my kids extra tight. I will continue to hug them and love them and smell the backs of their heads in that soft little spot at the base of their skulls and at the top of their necks where their hairline is- that special place where they smell like Heaven still. I will find more patience than I do other days when my boys are being typical 3 year olds. I will find a smile for them when they are trying to play with the baby by sitting on her thinking she can wrestle like daddy does rather than an expression of annoyance that despite being told 4 million times they still sit on her. I will be thankful that I have another day of waking up with my world completely intact and I will be able to kiss them over and over again. I can hug them to my chest and though they may struggle to get free so they can play and run and climb they will still turn to give me a quick fist bump and smile before they run off to adventure.

In short- I still have my babies. I am incredibly blessed and I know it. And for that I thank God for His love and for Him allowing me to have my babies and my husband.

I thank Him that we still can experience the JOY this season. It will be tempered with sadness for the families that do not have joy, that have only heartache.

To the parents in Connecticut, I don't know you. But my heart is with you. My prayers are with you. I am so sorry. I, along with millions more, shed tears for you and your children.

And to those babies that were lost- all 26 babies, because they were all someone's children- I pray that you are at peace, that you are surrounded by all that loved you who left the world before you and that you can see the impact you have made in this world. This mother's heart breaks that you won't be here with those that love you who remain here. God bless you all, sweet babies. You won't be forgotten.

God bless us all.



-Meghan

Tuesday, December 11, 2012

I have an announcement

As most of you know my real passion in life is advocating for my boys and others with Down syndrome. That is where my heart always leads me, in whatever direction is necessary to make an impact on the community and the larger world and how they view those with disabilities. Once again, Casey and Connor have helped me with direction in my life and have opened a door that I never would have considered before I was blessed with my miracle men.

A few posts back I mentioned an opportunity to help many with disabilities and I wrote how I was afraid to admit how much I wanted to be able to have the chance to make a real difference. Well, friends, guess what?? Last night, my appointment to the Board of the County of Summit Developmental Disabilities Board was confirmed! I will begin my 4 year term in January and I will be part of a board that has made Summit County one of the very best counties in all of Ohio in which to live for someone with a disability!

The Summit DD serves more than 4,000 people and their families providing services like Early Intervention, Community Employment services, housing options, transportation and so much more. You can learn more at www.summitdd.org.

I am so honored to have been chosen and I am really looking forward to helping make things even better. My family has been so incredibly blessed by the Summit DD. We watched our sons THRIVE with Early Intervention and every person we have encountered with the Summit DD has been kind, compassionate, helpful and supportive.

Our Early Intervention team became a part of our family. In the beginning, I would find myself looking forward to the visits from out Intervention Specialist and our phenomenal pt/ot team, Help Me Grow service coordinator and our Speech therapist. I would look forward to their visits because they always came out with great attitudes and wonderful suggestions for ways to help Casey and Connor learn and grow. I honestly believe that without early intervention we would have been lost. Instead, with their help and support, we all grew and learned and our confidence also grew. I knew we were doing the right things to help our miracle men reach their full potential. Our experience with early intervention made me feel like I was not alone and like I was supported even when there were days I was certain I was making nothing but mistakes.

And now, I get to pay it forward.

What a blessing!

So, celebrate with me, friends! I am so excited for this new journey!

Thursday, December 6, 2012

Happy 3rd Birthday, Miracle Men!

As of yesterday Casey and Connor are 3 years old! Time has flown by and though I have been present for every day of their lives I find it hard to believe it has already been 3 years since the miracle men arrived in our lives. It has definitely been an adventure and a wonderful journey!



We spent the day yesterday at Akron Children's Hospital where we go every Tuesday to do medical education. My mom and I take the boys and Reagan to talk to small groups of 3rd year med students about Down syndrome. It always amazes me how many of these future physicians have never met a person with DS. So, we go and let them meet Casey and Connor and ask questions and I share my story, my feelings and thoughts about being a parent to children with Down syndrome. It is an incredible blessing to be able to go and do this every week.

There have been a few of these students that have really made an impact on me. "Dr. Matt" is one I have written about and yesterday was Kellan (or maybe it was Kellen). He will be a wonderful doctor. He was asking wonderful questions and I really felt like he will be the kind of doctor that takes the time to actually listen to patients and in my opinion that is one of the most important qualities a doctor can have- good listening ears.

Some of his questions had me really thinking and trying to explain just what a gift my boys have been to me and to my family. In honor of their birthday I would like to take a few minutes to tell all of you what I came up with.

Kellen/an asked me several questions but one in particular really made me think. He asked something along the lines of have I ever considered what my life would have been like if C&C were typical. That was not his exact question and I may have misinterpreted what he was asking but that's what my momma brain heard and processed. The simple answer to that question is yes.

I would be lying if I were to say I have never imagined what my life would be like if Casey and Connor were not my miracle men. I have thought about it a million times. I think we would still be a happy family but I think I would have gone back to work. I may have gone back to school by now. I would have loved them as fiercely as I do now so that would be the same. I would have expected them to always try their best- again no change from my life now. I would have been singing with them, laughing with them, sharing adorable photos of them with anyone with a cell phone or facebook page. So, really nothing would have been that different. Well, that's not entirely true- I would have had more free time- time not dedicated to weekly speech therapy, twice monthly physical therapy, bi-monthly feeding clinics, 2 visits monthly with Help Me Grow and Early Intervention, blood work to check their thyroids and CBCs to make sure there was no indication of leukemia. There would have been no visits to orthopedists for helmets and foot braces, cervical x-rays to rule out AI (atlantoaxial instability) and no need for EKGs to rule out heart problems like endocardial cushion defects. There would have been no need to KNOW words like endocardial cushion defects, atlantoaxial instability, duodenal atresia (or the need to know it presents with the classic double bubble)- no need to know the increased risk of leukemia or early onset of Alzheimer's. I feel like I could teach a class on the laundry list of crap that can come with that bonus 21st chromosome. But really, with all of that comes something amazing- the biggest thing that would have been different if Casey and Connor were not who they are- if they didn't have designer genes- is that *I* would be different.

When I look back on the person I was before my sons I can tell you that I am not proud of who I was. I was impatient, judgemental, cranky, lacking direction or any ties to my faith. Sure I smiled and loved to tell my cheesy jokes and I was outgoing but I was different. I was less. I was... incomplete. I was like a puzzle with missing pieces that you didn't realize were missing until you got to the end and noticed the damn dog was busily chewing up the last pieces you needed to complete the picture.

And then, on December 4th, 2009, that changed.

The dog dropped the pieces he was gnawing on and they were tapped into place- a little soggy, a little worn, but they were there and the puzzle finally came together.

My world changed.

I changed.

And it was for the better.



I still struggle with impatience and I still have a temper. However, I am far quicker to walk over to a person I don't know and ask if I can help them if I see them struggling with something. I have learned from my sons to not give up on anything. I have learned to look at people and see a friend not yet made. I see every hand as one worthy of a high five, a fist bump or an " it's a real pleasure to meet you" hand shake. I have learned to slow down and enjoy the little things. I have learned to recognize the infinite joy that comes from something that seems so simple like bubbles (even better in the living room!!) or an empty shoe box (Hello deluxe garage for toy cars!). I have learned that I *CAN* reach people and share the message of the gift of my children and I can do it in a way that may make them re-think how they view Down syndrome. My sons have given me courage. My sons have given me a voice. My sons have restored my faith in God and man. My sons have shown me that life is NEVER set in stone and that anything can change the path you *think* you are on and you may just find yourself on an adventure beyond your wildest dreams. My sons have given me many, many gifts. Every day is an honor to be their mother. Every moment I have with them- even the *really* trying toddler moments- are better because they are in my world.

Casey and Connor have taught me many things. But the thing I cherish the most- the best lesson I have learned from my sweet faced little angels is that it is ALWAYS acceptable to LOVE without reservation, without limitations and without hesitation. They have taught me that a smile that doesn't light up your whole self is not a true smile. They have given me the gift of laughter. They have shown me that even though I may not have a Grammy winning voice that I can belt out "Somewhere Over The Rainbow" with the best of them and my renditions of Billy Joel's "Lullaby" or Journey's "Don't Stop Believing" could bring any audience to their feet. To their little ears there is nothing sweeter than mommy's voice singing them to sleep. What an incredible blessing.

Casey and Connor look at me and they think I can do anything. Puzzle too hard- give it to mommy! Can't get your socks on? Mommy's got it covered! I am the keeper of the graham crackers and Goldfish and the reader of  "Goodnight Moon" and "Pajama Time". I am the singer of crazy little tunes while we brush our teeth, put our pants on or march like dinosaurs down a very public hallway. In short- I am a hero to my kids. I love them unconditionally and in the biggest way I know how. I am not a perfect mommy but I am their mommy and that is a pretty damned amazing job.

As I reflect on the last 3 years I am left with a full heart and a joyful soul. God has given ME a gift that I still don't know how I deserve. He has given me a do over. God has given me 2 children who make it seem criminal to not try to be the best me I can be. I have been given something many people would love to have- a second chance to be a person to be proud of, looked up to and maybe even admired a little.

So, yes. Yes, I have imagined my life if Casey and Connor were born without the extra chromosome and I have to honest- it's not nearly as sweet as the life we are living now. Sure things are challenging at times and we have some extra appointments that other families don't have to worry about and yes, my head is crammed full of lots of scary medical terms. But at the end of the day, I wouldn't trade any of the little inconveniences for the mountains of blessings that have been heaped on me because of my miracle men.

The true miracle of Casey and Connor is their power to completely transform a person.

I am sitting here wondering how we are so blessed to celebrate their birthday and yet WE are the ones that got the true and best gifts of all.

Happy Birthday, my little men. There are not words to tell you how much you mean to me. My life was worth nothing before you came along. You have given me purpose, passion and limitless love. For the rest of my life I will give thanks every day to God for giving me YOU!

I love you.


Monday, November 19, 2012

It's all about communication

I'm back. I often wonder if I keep this blog just for therapy purposes! I find I want to write when I have too much in my head to process and this is one of those times. Hi again!

Casey and Connor are just about 2 weeks away from being 3! THREE! How did the time go by so quickly? And because my miracle men are turning 3 we are getting ready to embark on a new adventure- Preschool. Uggh. Don't mistake my uggh for anything other than my disbelief that my little babies are now not so little and are ready to take their first steps toward their futures.



I am thrilled, so far, with the school where they will be going. It is just a few blocks from our home and it is a wonderful program where up to 3/4 of the students in their class will have some form of disability or delay and the remaining 1/4 will be typically developing. It is likely that some of the children in their class will be with them in elementary school and they will be comfortable with the boys and the boys with them. Their teachers seem wonderful and caring and the therapists and their assistants all seem fantastic as well. I know that they will thrive.

I am still sad. Not for them- solely for myself. My babies will now be out there in the world without me for about 12 hours a week. They will encounter other adults and children. I have to trust that everyone they meet will be kind and caring and I have to trust that they will be safe. This is especially difficult given that the boys are non-verbal and we have to rely on their moods, gestures and occasional temper tantrums to decipher their wants and needs. My stomach is in knots but I just keep praying that God will watch over my babies and that the school district has done their jobs and hired and contracted the best people for the job. Having faith is easy on paper (or computer screen) but in the dark of night when I am laying in my bed unable to sleep it is a different animal altogether.



Which brings me to my biggest issue I am having lately. Having 3 kids is a lot of work. Having 3 kids under the age of 3 is a bigger challenge and having 3 children who are all unable to communicate at this point is by far the biggest challenge I have ever faced. Casey and Connor are essentially non-verbal. They have a few signs they can use when prompted but rarely do they do so spontaneously. They can sign milk, more, eat, cracker, cereal and fish (which is for both the actual fish and the delicious cracker version). If something hurts them or they are tired or frustrated or sad or bored they have no way to let us know. They get frustrated that we aren't figuring out their wants and needs immediately and then they throw themselves on the floor and cry or throw toys over the baby gate into the kitchen or hit one another or the baby. They only act out when they need or want something and I have to be honest- it is extremely frustrating.

Connor Thomas in meltdown mode. Good times!!


If you have never been in a situation where you have ZERO idea what someone wants or needs and they just cry and scream or hit you or their sibling you can't truly understand what I am saying. It makes you feel like an inadequate parent, it makes ME feel like a complete and utter failure. And it frustrates me which makes me feel worse because I don't want to be *that* mom. The mom that wishes the day would be over so she can put her kids in bed and close the door and BREATHE. I LOVE my babies- I don't want to wish away their childhoods.

I adore my children. I would give my very heart and soul to be able to protect them and ensure that they have everything they need. To not know what they want or need kills me. I didn't realize what a big problem this was until the other night when Connor fell down the stairs. At first, we thought he was just shaken up and didn't immediately see anything wrong with him. We put him in the bathtub and it was not until I went to wash his hair that I saw the gash on his head. He was bleeding- not badly but bleeding nonetheless- and we took him to the ER where he got 2 stitches to close a wound that went all the way down to his skull. I felt like the biggest failure, completely incompetent as a parent. Had Connor had a way to tell me he was hurt, I could have attended to his needs immediately. Instead it was just luck that I saw it and I feel ill when I consider what could have happened had it not been bath night and had we not gotten his head closed up before it got infected. 



This communication gap we have is becoming a bigger problem than I wish to admit. On the days when I am alone all day not only can the boys not tell me what they want they don't always grasp what I need them to understand when there is no one else here to help me keep them safe- don't sit on the baby, no climbing on the table, don't hit the dog, please, for the love of God- don't throw your milk again because it explodes all over the floor and I have already mopped it up twice already! Then I get frustrated and I feel like I want to rip my hair out or cry. Sometimes I do both. And then I feel like an awful mother for not keeping my shit together. It's quite the cycle!

I don't complain about our lives much. I have so much to be thankful for and so little to be sad about but I have to admit- it is really difficult caring for children who do not speak. It's difficult to gauge what they understand and what they don't. At one evaluation the estimated cognitive age level for the boys was about 18 months. Imagine having a child with the energy and the will of a 3 year old with the understanding of an 18 month old. It can be trying. And you have to know I feel like a supreme jerk for writing these words. I do. I just don't know how to help and I am so tired of not knowing what to do to help them understand or to help them tell us what they need and want. I feel like I am letting them down. I *am* letting them down. And that is my biggest issue- I am failing my sons and that just breaks my heart in a way that I can't express.

Casey with a bite mark on his back from Connor.


Set aside the fact that in 3 years of being a mother I have never been called mom or mommy or mama by my children, that I have never heard the words I love you from them- those are painful things but in the grand scheme of things they are not that important. I would give ANYTHING to know what the boys want and need. I would do ANYTHING to help them. We have been going to speech therapy every week for over a year and they can now make awesome animal sounds but those sounds are not yet translating into anything we can use to make their lives better. I have faith that eventually they will but as of yet, they are not.

I think at this point I am going to end this rambling nonsense. I feel like I am bitching about the two most incredible little boys I know but please, PLEASE know that is not my intention. I am just trying to survive the toddler years. I needed to get all that out of my head and onto a screen where I can come and reread it later to see that while we have numerous blessings there are some challenges and that it's okay for me to feel overwhelmed at times. I have to trust that God didn't give me more than I can deal with- that He knew I would figure it out. I just haven't yet. I just keep praying hard for patience and gentleness and then I pray for forgiveness when I screw up- which is often. I hope that my boys can forgive my many shortcomings and just know with no doubt that I love them more than my own life and that my frustration is not with them but with my own inability to help.

Thanks for reading my therapy posts. If you have experienced these feelings and wish to share, please do so. I think it helps to know you are not alone and I KNOW there are other parents on this journey who read this blog who either ARE feeling this way or have felt this way. Can anyone out there offer any insight? Comment here or email me at meghan_wilkinson10808@yahoo.com

Love, Meghan

Wednesday, October 17, 2012

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.

Wednesday, August 29, 2012

Keep on Walking the Walk

Hi everyone!

There are days when I feel overwhelmed with life. Having 3 children under 3 is challenging sometimes- okay, a lot of the time. Don't take that as a complaint- it's not, it just is what it is. I love every moment I have with my babies and I am so glad to be fortunate enough to stay home with them. I live such a wonderful life.

THEY LOVE HER!!


To make up for the challenging days, God blesses me with fantastic days. 

Yesterday the boys and I (and my mommy) went to Akron Children's Hospital for round 2 of med student lectures on Down syndrome. I call it a lecture because I can't think of a better word for it but it is really a small group setting where I get to tell my lame jokes and share stories about how Casey and Connor are amazing little people. The first week there were 2 students and this past week there were 4. I have really loved meeting all 6 of them.

Sometimes, you meet people that just make an impression on you. In our group yesterday there was a young man we dubbed Dr. Matt. He was instantly comfortable with the boys and with me- asking great questions and he really seemed to try to get as much out of the session as possible. I was really impressed with him. 

I always tell people about Casey and Connor's FaceBook fan page (www.facebook.com/CaseyandConnor) because I want them to follow the boys and continue to see what they are accomplishing. Both students from session 1 became fans before I got home. Session 2- Dr. Matt became a fan. (Did I mention I really like this guy??) Tonight I logged on to the boys' page to see what new stuff was happening and I was greeted with a comment from Dr. Matt's mom. She told me that her son called her after his shift at the hospital to talk about the boys!!! Awesome. 

The ENTIRE reason I do things like talking to these students or writing this blog or doing the guys' page on Facebook is to touch lives. I do it to touch hearts and change minds. It is my life's mission to share the message that Down syndrome is a gift- not a curse. Dr. Matt showed me that I get it right sometimes. God bless him.

Learning that I am impacting lives (well, if we are being honest, learning that Casey and Connor are impacting lives) makes me so happy. It makes every single challenging moment of raising 3 under 3 seem much easier. I can look at my angel's sweet faces and know that they inspire me to go out and tell our story and I know I am doing it to make this world a better place for the 3 people who make me a better person.

I am inspired to spread our story even further! I will be spending time nearly every Tuesday until next July talking with the small groups of med students at ACH. In September, I am fortunate enough to be one of the parent speakers at Case Western Reserve University's med school during their Genetic Anomaly Correlation Conference. I did this last year and enjoyed the experience immensely.

I would love to have more opportunities to share my sons and our lives with more people. I have spoken at my church, to new parent groups and to med students but I want to do more. I am driven to continue this path to changing the world. I would love the chance to reach out to as many people as I can. I feel like God is calling me to continue walking this path. It is my dream to speak at schools, more churches and to other groups. I will continue to seek out these opportunities. If you hear of anything- keep me in mind. (It's my blog- I can shamelessly plug myself!)

Ok, friends, that's all for tonight. Right now I am debating between sleep and getting a few projects completed without 4 extra hands trying to help me. Thank you again for reading. As always, comments are welcomed and correspondence is appreciated. meghan_wilkinson10808@yahoo.com

 

Tuesday, August 21, 2012

2 announcements and a request!

Well, I didn't get to do a post yesterday so I will combine the one I planned for last night with tonight's post. As I said before I have some announcements that are rather exciting!
First, Casey and Connor will be in a new children's book about Down syndrome. The concept of the book is to show how typical children and adults with DS truly are. It is a book of pictures showcasing the many hobbies and interests that our kids have. Casey and Connor will be in the book along with several other children and adults including our good friend Toby.

I have never written about Toby before so I feel like you all deserve to know about him. He is 24 years old and absolutely outstanding. My family skydives. It has been a family hobby for more than half of my life. My big brothers are professional skydivers (sweet, right??) and my mom is a coach and used to teach first jump courses at the drop zone where they jumped. I never got the bug like the rest of them but I do have a respectable 7 jumps under my belt. A few years ago Toby came to make his first skydive. Having witnessed several hundred first jumps I was not all that impressed with 99.9% of the people that came to jump. Toby was different because he had this personality that grabbed your attention, a smile that melts your heart and he was just so JOYOUS about jumping out of a perfectly good airplane. Toby also has Down syndrome.

I had no idea at the time that someone with Down syndrome was capable of jumping from a plane. I had seen a quadriplegic jump but never someone with DS. WOW! Toby did amazingly well and I saw more than one person shed a tear as we all gathered around to watch the video of his jump. Now, several years later, Toby also has 7 jumps and will pass me up next year in July.

Not only is Toby incredible but his family is as well. We all fell in love with them- all of them. I am a firm believer that God brings people into your life at the perfect time and this was no exception. Meeting Toby and seeing what he was capable of blew me away. When my boys were born Toby was one of the first people that popped into my head and it made the diagnosis just a bit easier.

As I mentioned earlier Toby will also be in the book with Casey and Connor and I think he will make more people see how much kids like mine can really do. It's such a blessing to know him and to share this cool experience with him.

So that was the first news.

The second news is another great opportunity for us to share the miracle men with the world. C&C will be going to Akron Children's hospital to participate in medical student lectures about Down syndrome. This is cool because we have the opportunity to speak with future doctors about what our lives are really like and we have their ears to share what we need them to know. So, I need your help, friends. I want to know what one piece of information or one piece of advice you would like the physicians of tomorrow to know about Down syndrome. Please comment on the blog or email me at meghan_wilkinson10808@yahoo.com I will compile a list and copy it to give to the students at the next sessions. I will also post the answers here so PLEASE PLEASE PLEASE take a moment to respond. This is a huge chance for us to make our voices heard.

Alright, that's it for tonight. My littlest miracle is waking up to eat and then hopefully she will sleep for a solid 6-8 hours so I have the energy to chase those little monkeys around tomorrow! Thanks to my new followers!! We are up to 92 now! Only 8 more to hit my first goal. Also, please make sure you visit and like Casey and Connor at www.facebook.com/CaseyandConnor. They are over 450 fans!

Goodnight!

Monday, August 20, 2012

These are the Days!

Hello again!

First, let me just say WOW! My little blog is well over the 21,000 hits mark and has 89 followers. I am ecstatic! Thanks to everyone who reads and shares my thoughts. Most recently, thanks to those who keep checking to see if I have written anything new and finds that no, I am still far, far behind on my posting. Life with 3 kids under 3 is a lot harder than I expected!!

Let's start there.

Casey and Connor are surprising us every day. They are getting faster, stronger and crazier! Casey went from walking to running and then to climbing on everything. His new favorite game includes standing on things to leap onto the furniture or standing on chairs and benches to give speeches. He is "talking" like crazy but not using any form of English with which I am familiar. It's hysterical.

Our little family at the 2012 North East Ohio Buddy Walk


Connor is up and going, too. He has outgrown his second pair of Sure Steps and we are using Casey's Cricket inserts in Connor's shoes now as their feet are all but identical in measurements. The Crickets really seem to make Connor walk a lot more steadily and that makes him faster. I so love seeing my boys THRIVING!!

Checking out their pool with their shoes and socks on.


Reagan is going to be 11 weeks old on Wednesday. She is such a beautiful baby. She is very strong and very interested in everything. It is such a difference having a "typical" baby compared to one with Down syndrome. She is just so STRONG. Connor was very floppy as an infant. He had very poor muscle tone and was unable to really hold his head up until 3 months old. Reagan has been picking hers up since week 5. She is also trying to roll over, babbling and smiling. She has laughed once and it was just outstanding! With the boys we waited so long for smiles and laughter. It seems so odd that everything just happens on its own with a typical baby. I am learning how to parent all over again. It's different and wonderful all at the same time.



The fact that Reagan is progressing so quickly leaves me with a whole new set of anxieties. I find myself wondering if she will be the one that says "momma" first. And I worry that I will be sad if she does. I have been waiting 32 months to hear that word. I suppose it doesn't honestly matter who says it first but I think that word represents the many things in which Reagan may surpass her brothers. I am trying to learn how to celebrate her accomplishments without comparing her to her brothers and without feeling sad that she has such an easy time with new milestones.

I'm being silly.

I know this.

No two children are on the same timetable and comparing any two children is not advisable. I know this. I do. So why do I find myself doing it? Because I am human and I can't help myself.

I am proud every day of my Miracle Men. They are doing so much and excelling. I look at them and I think that if everyone had the chance to meet them in person, to see them playing and to get to know them there is not one person who would fear Down syndrome. They are such typical toddlers. I never would have expected this when Dr. Feick first uttered the words Down syndrome to me in the recovery room. I never could have predicted how much my life would mirror my friends' lives and how much my boys would behave like any other 2 1/2 year olds. Someone should have warned me! These boys are crazy!

All in all life is great. I don't get enough sleep and I am still fighting the battle of the baby weight and struggling with breastfeeding and I am trying desperately to figure a way to get my guys to eat something other than crackers and dry waffles but I am happy. Sincerely and overwhelmingly happy.


That's all for tonight. But please check back soon because I have a lot more to share and I am hoping to get new posts up tomorrow and Tuesday. I have some exciting announcements to make!

Thanks again for your patience while I settle into being a mom to 3. I hate that there is so much time between posts.

Oh, one more thing before I go!! Can you please encourage your friends and family to follow my blog?? My goal was to hit 100 followers before the end of 2012 and I am only 11 away. It would mean so much to hit that milestone. I'll tell you what! I'll do a give-away at 100 followers. I don't know what yet but I'll keep you posted!!

Take care!

Meg

Sunday, July 8, 2012

Our new arrival

It has been far too long since I have written and I can say honestly that I have missed it so much! Imagine my shock when I logged on today to discover that I am very near to 20,000 page views! Wow! When I began this blog I never imagined that I would reach so many people with my words. What an incredible blessing and opportunity.

So, as to my absence... Matthew and I were blessed with the arrival of Reagan Delaney Wilkinson on June 6th, 2012. She was born at 8.2 pounds, 20 inches and a head full of her daddy's dark hair. She is a joy and so different than her brothers. The moment they held her up for me to see she opened her mouth and cried so loudly I smiled. My girl has a voice and she is not afraid to use it- and use it she does! I don't remember the boys crying so much at this stage. Reagan certainly makes her wishes known.



Casey and Connor are adjusting to life with a new sister. They are both fascinated and annoyed by her presence. We have had a few jealousy issues but overall they are great brothers and I know that the three of them will grow to be great friends.

Casey and Reagan

Connor and Reagan


 We have been so busy adjusting to life as a family of 5 but we are all doing great. I am enjoying all the pink clothes and dresses and hair bows and I am loving watching my beautiful boys learning about their sister. I adore watching my husband interact with his daughter- she already has him firmly in the grasp of her tiny little hand. There is so much joy in my heart and love in our home. It is truly a fabulous and wonderful existence I lead.




I am hoping to have more time to update the blog from here on out. I thank you all for reading!

Thanks for all the support.





Friday, June 1, 2012

I will not hide...

I, like so many, am in love with the website Pinterest. It's become one of my favorite tools for finding recipes, craft ideas and design inspiration. I love to see what others share and to share what I love. Recently, I shared a photo of my miracle men on Pinterest- after all, what do I love more than my sweet boys? I never realized how many people would be uncomfortable with this particular pin.

This is the photo I posted:
And this is the caption I shared when I pinned it: This is Connor and Casey. They are my miracle men. Identical twins with Down syndrome. Why are so many people afraid to have beautiful children like these?? 90% of babies diagnosed prenatally with DS are aborted. Look at these faces and tell me that they don't deserve to be alive. Down syndrome is not as scary as you may think. My life is wonderful. Perfect. BLESSED.

When I originally chose to share my miracle men on my Pinterest page it was with the sincere hope that maybe I could open 1 person's heart and eyes to the wonder and beauty that I live with daily. What I never expected were some of the reactions I got. 

Here are a few and the responses I gave:

Kiowa Pendleton
Some people think having a child that can hardly take care of themselves is scary. I personally would not make a child go through that. I would hate to have down syndrome, or any defect and if my mom had aborted me because of that, I would have no idea anyways. Stop judging.


Meghan Wilkinson
Kiowa Pendleton- My sons are not incapable of caring for themselves. They are thriving and doing quite well. Adults with Down syndrome work, live independently, marry, drive and vote. And they are not as close minded as you. You are the one I would not want as a child. I would rather have my sons who love unconditionally than someone who could be so judgmental. Good luck in life. May you blessed enough to meet someone as amazing as my sons!



Leigh Manacher
Pinterest is not the place to discuss the joys of having down syndrome children or any children at all. Pinterest is not the place to discuss your relationship with God or even your own family! Pinterest was designed so that the creative community of artists, cooks, fashionistas and designers could share their sense of style and taste through inspiring photographs. This conversation belongs on a parenting website, not on this one.

Melissa Kaminska
Totally agree, Leigh. This is not the forum for this.


Meghan Wilkinson
Leigh, thank you for sharing your opinion. We are all welcome and entitled to one. However, Pinterest is about sharing what you love and what could I possibly share that I love more than the very children who showed me what true love and joy is all about? I am sorry if somehow those two beautiful faces upset or offended you but the really cool thing about life is- it's full of choices! You may choose NOT to look at this, share this, like this and I can choose to share it anyway. And as far as speaking about God, I personally think if more people did talk about God maybe the world would not be the cesspool it is anymore. Again, thank you for sharing your opinion. You inspired a blog post! I'm always on the lookout for new ideas to write about. I truly hope you have a nice day.


One thing I am learning is that not all people are ready for the new generation of parent who is raising a child with DS. We are the ones that refuse to hide our children behind closed doors, put them in institutions or have them sequestered solely in special ed classrooms. We are the generation of parents that share the joy our kids bring with the world, we fight for inclusion and understanding and we demand respect for the precious gifts that we have been given. 

I am proud to be part of the movement that is raising awareness, opening doors and knocking down stereotypes and misinformation. One way in which I do this is by sharing Casey and Connor as with as many people as I can and in as many ways as I can. I am not ashamed of my kids- I could not be prouder if I tried. And I am not alone! There are parents, aunts and uncles, siblings, friends and educators standing up all over the world to say Down syndrome is not to be feared but embraced. Even companies are beginning to understand what we are saying, that our children are beautiful are worthwhile and should be shared, not hidden. Target has been using several models with Down syndrome in their Sunday circulars. Other companies that are catching on are Toy's R Us, Macy's, and JC Penney. Popular shows are featuring children and adults with DS. More and more colleges and universities are beginning programs that accept and accommodate young adults with DS and other disabilities and help to propel them into the future and self sufficiency.

It's a great time to have DS. There are more doors open than ever there have been. What a beautiful thing. 

I'm not saying that I am changing the world. I am only one person who is creating small waves of change in the world. But those small waves combine with other small waves and eventually there will be a tsunami of hope and awareness and when a person chooses to share a photo of their child on Pinterest or Facebook or twitter, there will be comments of support and loving and not ones saying "This is not the place for this kind of sharing."

The same people who get upset or offended by what I share will happily repin and like the e-cards photos that use the "R" word, show Ryan Reynolds sans shirt and freely share the "LOL cats" with terrible grammar. How is my sharing of the biggest inspiration in my life not worthy of the same tolerance?

Now, it should be noted that there are over 70 comments on that one pin of C&C and the overwhelming majority of them are positive and loving and wonderful. A lot of them go on the attack of the few negative or less supportive comments. To those people who look at my little guys and see the miracle that is them, I say THANK YOU! It is those individuals that bolster me when I run across the ignorant and closed minded. They are the people who remind me that there are many out there who love as I love and  believe as I believe that every child is worthwhile. That is a great feeling. 

To the people who don't get it yet- one day you will either get on board this train or be run over by it. My kids aren't going anywhere. *I* am not going anywhere. I will share my life, my sons' lives and the lives of all people with DS ANYWHERE I choose and I will share my love of God, my faith and my belief in the connection between all these things anywhere I choose. You can ignore it but like I said- we aren't going away. 

Before I close this post, here is another photo of my miracle men- they are living works of art- they are the very shape of love and hope. What is more beautiful than that?


Monday, May 14, 2012

Dream A Little Dream

Time gets away from me these days. When I think it's only been a week since I've last written I realize it's been several. I offer no excuses other than that life has been happening and very quickly!

Connor was hospitalized for 3 days after contracting a nasty stomach virus and becoming extremely dehydrated. That was our first time staying in a hospital and though it was not the best experience of my life it was great because the nurses and doctors at Akron Children's Hospital are far and away some of the most caring and fantastic people I have gotten to meet. They all went out of their way to care for my little man and for me as well. I was 33 weeks pregnant when he was there and they did all that they could to ensure I was well hydrated and comfortable. I am grateful for all that was done for my family!
Now Connor is well and has finally begun walking with his brother. These two boys are so fast and so busy that by 8 pm I am ready for bed right along with them! What a blessing it has been watching them gain the strength and confidence to being walking and to watch them explore the world. Everything is new and exciting and I am learning to look at things as they do- with a fresh eye and an open mind. It's a beautiful way to see the world!

Speech is progressing slowly but surely. While they only have a few real words they are responding more and more to the things Matthew and I say or ask of them. For example, they can both point out their noses, heads, belly buttons and mouths. Also they are mimicking animal sounds now. They can tell you a what a wolf says, that an alligator says chomp, chomp, chomp (with awesome hand motions!) and they do a mean monkey impression. We are working on the cow say "moo" but M is one of those sounds that they just don't get consistently. It'll come.

I am now 36 weeks pregnant with Reagan and I am at the point where I really want to be done being pregnant and actually meet my little girl. I find myself wondering very often who she is and what she will be like. It's an exciting thing, imagining your unborn child. I can't wait for her arrival and for her to meet Casey and Connor and for them to become big brothers. It will be nothing short of fantastic.  

DREAMS

This is what I really came to write about today. I have talked about the dreams I have for my children but never do I really think what dreams I have for myself- unless I am actually dreaming. Last night I had this really great dream where I was talking to a group of people about Casey and Connor and Down syndrome. I explained that they are the greatest joy in my life and that to be their mother is to be blessed beyond anything I could have ever imagined. I told stories of adults with DS who are doing amazing things in their lives and that with support and love all our children could be capable of living their lives to the absolute fullest. I talked of my faith and how C&C strengthened my belief in God. It was a great speech. In the dream, there was a sweet lady, older, who was crying and crying while I spoke. I asked her why she was crying. She told me that she had found out a few days prior that her grandchild was going to have Down syndrome and she had been so depressed and sad thinking about her. She was not originally planning to come to hear me speak (wherever that may have been) but was brought by a friend. She held my hands in her hands and with tears pouring down her cheeks she told me that I changed her life and her opinion of her granddaughter to be. She no longer feared her but she looked forward to becoming an advocate and telling people that her granddaughter is a blessing. So overcome was I by emotion I cried with her. I felt like I had really made a difference in her world and the world at large.

What an incredible feeling!

When I woke up I felt like all of that had actually happened. I wanted it to actually happen. My dream for me is to make as much difference in the world as I possibly can. Not just for Casey and Connor but for Reagan and for every single child in the world. I hate the stigma attached to the diagnosis. I want to help break the walls down, pull the curtains back and reveal the beauty of the life that can be achieved with faith, support and love. I am starting small on that dream through this blog and the boys' fan page on FaceBook and sharing them with the everyone I can but I dream of finding a way to make a bigger impact. I will continue searching. Some day I will wake up feeling like I am living my dream rather than just experiencing it while I am sleeping.  


Dreams pass into the reality of action. From the actions stems the dream again; and this interdependence produces the highest form of living. Anais Nin

 

Monday, April 16, 2012

I'm only human

As a mother you try your very best to be perfect. You want to make sure you are doing everything you possibly can to ensure the brightest future for your children. You strive to make sure they eat well, sleep enough, don't watch too much tv, brush their teeth, learn their manners, and on and on and on. It's a full time job and one I am honored to have.

As a mother you look at your kids and see the perfection in them that others may not see. When they are throwing a tantrum you remember how sweet they look when sleeping and you manage to maintain your calm.

As an expectant mother you dream of your new child. You make plans and have hopes for her. You imagine holding her for the first time and seeing her little angel face. You try to get ready for the road ahead, making sure her room is perfect, her clothes are clean and ironed, you have the perfect pediatrician in place to care for her, you take your vitamins. Your whole world revolves around a person you have never met but you feel every second of the day.

When I was carrying Casey and Connor I did all of these things. I planned their futures. I painted their room. I washed their clothes. I dreamed of their arrival. I was over the moon excited to meet my sons. As you all know, when they were born and I heard the words "Down syndrome" all my planning and dreaming went out the window. I was left to grieve the children I had been expecting for 36 weeks and 2 days. I was shattered and heart broken. I was unable to dream or imagine a new and different future for them. That's when my husband saved me. He pulled me into his arms and told me our sons were perfect.

Knowing he looked at them and saw "perfect" allowed me to look at them and see "perfect" and it also allowed me to dream again- just differently. No words could ever express the love and gratitude I feel for Matthew because of that moment. My husband was my angel that day. He will forever hold my heart for the words he said that made me look at those tiny little boys and see miracle men.

With all that being said, I have a confession to make.

As we are getting closer and closer to the arrival of our daughter I am getting more and more nervous about who she is. I try so hard to believe that God will give me the baby I am meant to have and to blindly accept that He knows best. I try so hard to believe the geneticist who told us that the odds of having another child with Down syndrome are slim. I try so hard to believe that no matter what I will look at my little girl and see perfection.

The truth is- I am terrified. I declined all prenatal testing with her- just as I did with her brothers- because I KNOW it doesn't matter. In my heart, I KNOW that no matter what I will love her.

But I'm only human. A weak and scared one at that.

My biggest fear is that Reagan will arrive and I'll see immediately that she more closely resembles Casey and Connor than Matthew or me and that I will be sad, or mad, or just... heartbroken.

Don't misread that. If by chance our daughter DOES have DS I will love her and advocate for her and adore her as much as I do my boys. I will accept that God had chosen the path for me and I will walk it with my head held high and my heart filled with love for my children.

Let me see if I can explain this better. I will love her regardless of her chromosome count. My biggest fear is my reaction. Despite EVERYTHING I have done with and for my sons, despite all the love and affection, I feel so much guilt for EVER being upset about their diagnosis. I feel so much guilt for ever thinking they may not read or enjoy life the same way a child without DS does. I hate myself for ever looking at them and crying.

I feel like a terrible mother for ever thinking "I hope the doctors are wrong."

So, it's not Down syndrome I fear but my own weakness- my own limitations as a person to accept anything immediately.

On the flip side- I worry how I will feel if she DOES NOT have DS. Will I treat her differently than her brothers? Will people just assume I am thankful to have one "normal" child? Will that piss me off that people look at her and think she is the perfect one? Will my dreams for her be bigger than the dreams I have for Casey and Connor? Will one of my 3 babies feel less loved than their siblings?

Gah! I have so many worries. I am actually surprised at my willingness to share these thoughts with all those who choose to read my ramblings. It's not easy to admit you are so flawed. It's an uncomfortable thing to say I am scared of how I will feel about my child.

I guess that's the point of this whole blog though- to write what I feel and think- even the ugly crap- so other people know that it's ok to wonder or worry so long as in the end you try your hardest to be the best parent possible.

I am a far different person than I was when C&C were born. I like to think I am far better. Clearly not FAR better but better nonetheless. As much as I would like to think I am a super mom I know better.

I am scared.

I am weak.

I'm only human.

Thursday, April 5, 2012

It's good I have a GREAT sense of humor!

I often say that Casey and Connor are pretty typical boys and today they set out to prove just how typical they are!

This morning they had physical therapy. We had to leave the house by 8:20 am and it can be a struggle to get all three of us ready and out the door on time. Today was no exception. While I went upstairs to finish getting ready- all of 7 minutes tops- Casey decided he needed to be on the desk. He figured out how to pull out the desk chair, climb up on the chair, and use the chair to climb up on the desk. Once on the desk he got hold of the computer mouse in one hand and was typing with the other hand. Somewhere in between mousing and typing he thought to include his brother who was waiting on the floor to get in on the action, and he threw several pens, pencils and other things on the floor for Connor to play with. The most impressive feat of all these was just how quietly and QUICKLY they accomplished all these tasks.

Once I got that mess cleaned up and all 35 windows closed on the computer I loaded the guys up to head off for PT. What a great session they had today! Connor walked for 4 minutes on the treadmill. This is a great accomplishment for my littlest miracle man as he really struggles to find balance and he is not as strong in the core or legs as Casey. He is getting there! I am so proud of him for all his hard work. He really makes me see that no matter how big the challenge you can overcome anything if you keep trying and working hard! He is just awesome! Casey also did well today and seems to really like the workout and spending time with Miss Kristin and Miss Joan. I adore our PT team- they are wonderful!!

After PT I had the brilliant idea of going to Target to pick up a few things we still need to prepare for Reagan's arrival. Mind you, I am getting pretty large right now- at 30 weeks 4 days I am starting to feel the 3rd trimester lag.




When I pulled into the parking lot I scanned for a double cart in any of the cart corrals and found most of them completely bare- not many shoppers this early in the day. So, since Casey man is walking so well I decided to carry Connor and hold Casey's hand while letting him walk in the store. Overall it was a smooth transition.

Once we got into Target and I managed to get both boys strapped into their seats we set out for the baby section. Casey likes to take up as much space as possible in the cart so he stretched his feet across the seat and used Connor's legs as foot rests. At some point he had the notion to stick his fingers in Connor's mouth. It should be noted that Connor doesn't really bite too often- he is the less aggressive of the boys by far but if you put something in his mouth... you can only imagine. Shoppers for 15 aisles around must have heard the waaAHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH that came out of Casey when his brother chomped down- really hard- on his fingers. He cried like his heart was broken. He also decided he could not ride in the cart anymore and it was necessary for mommy to carry him.

So there I am- in the back of the store, with a double cart, a screaming toddler and a giant pregnant belly. Sure, I can carry you, Casey! And so I did. I managed to maneuver the cart and contain Casey and finish up the remainder of my shopping list.

By the time we reached the checkout I was sweating profusely, breathing hard and aching- but still smiling because I just can't get enough of my crazy boys!

There is a wonderful employee at our Target and I feel terrible I don't know his name but he is awesome to the boys and Casey especially loves him. He gives them stickers when we come in so he is definitely up there with the guys' favorite people.

When Casey saw him today he practically threw himself into his arms. Casey thinks this man is the business. He came back to me pretty quickly but went back and forth between the two of us at least 4 more times. Best friends.

Then the gentleman who checked us out smiled and said hi to Casey and Casey lunged over the credit card machine and into the cashier's arms. To C's delight he got more stickers. And I was reminded again of how NOT shy my son is becoming.

As we were leaving a nice woman asked all the usual twin questions then asked if I was crazy having a 3rd one. I assured her I *am * crazy but thrilled to be adding to the madness. She asked if she could help me out to the car or with my cart but I explained I am a master multi-tasker.

She was really nice.

Once the boys were buckled into their seats I made the decision to go to Mr. Bulky to buy a giant bag of red gummy bears and a bag of chocolate covered peanuts for Matt. We pulled into the lot and I hauled the double stroller out of the van. It was then I made a massive error in judgement and decided NOT to use the lovely 5 point harness system provided for my sons safety (and apparently my sanity)by Kolcraft. I figured we'd be in the store for 3-5 minutes tops. Why buckle them up?

FAIL!

After about 30 seconds in the store Connor discovered the bulk bins all had tongs or scoops that were simply too intriguing to pass up- he got himself in perfect position to grab a pair of tongs and in a miraculous half ballet, half gymnastic move I managed to catch said pair of tongs as they went flying. It was at that moment when Casey decided he was leaving the stroller. I caught him by the armpits and attempted to buckle him in- not so easy when he gets in his I am stiff as a board and just a straight- fighting position. While wrestling with Casey, Connor found a display of Mike and Ike's on the right side of the stroller. He happily threw 2 boxes of no less than 15 packets each of candy on the floor in approximately 2 milliseconds. So, now I have to hold on to a squirming Casey while lowering my ginormous self down to pick up 400 packs of candy. Are you still with me?? Mind you, I'm still smiling and talking to the boys very calmly all while cussing myself out internally.

It is while I am in what must have been a very glamorous pose that a nice old man walked up behind me and said, "I love children. I wish I could have had 100. I only had 1 because my wife got cancer and they wiped all that stuff out of her. Enjoy them." (Did he really just tell me about his wife's hysterectomy?? Awesome!)

I smiled and said I do enjoy them, every single day. They are my biggest blessings. He then noticed I was pregnant and he said, "Keep having babies if you can figure out how to pay for it. That's the hard part."

I wished him well, finished picking up the candy, got the bag of peanuts for Matt, found my purse- 2 aisles over- how did *that* happen, steered the double stroller to the register, still holding Casey and managed to pay. The cashier held the door open for me and we were about 200 feet from the van and a much needed breather when Connor decided he wanted to try surfing.

In a move that would make any hardcore, Hawaiian surfer proud, my 2 year old stood up in the back seat of the stroller and was ready to hang 10. I got him halfway seated (still holding Casey) and proceeded to walk into the parking lot. Connor decided to stand again. He almost fell out of the stroller (did I mention I FAIL?!?) but I caught him with one hand under one arm and got him back into his seat.

It was then a nice man asked if I needed help. Uh, yes. But my mouth formed the words, "No thank you, I've got it. Just doing some juggling. Thanks so much, though." He was not convinced but walked away anyway most likely thinking my kids were crazy and I was some awful mother.

I hand Connor the keys to occupy him for the last few steps to the van. He decided to chuck them into the parking lot. Now, if you have never played catch with Connor you wouldn't know that my little peanut makes up for the strength he lacks in core and legs in brute arm strength. Those keys were flying.

By this time I am drenched in sweat, practically hyperventilating, my hair is no longer in a neat ponytail and I am still carrying Casey and now I get to bend down again to retrieve my keys. Did I mention Connor is standing again. I am laughing hysterically now because really, there was nothing else to do.

I get the keys, sit Connor down, hit the button to open the van doors and jog to those open doors, I happily toss my monkeys in their seats, buckle them nice and tightly. I kiss their heads and tell them how much I love them.

Never a dull moment.

I couldn't possibly be upset with them for MY error in judgement.

As I pulled out of my space I called my mom to share my story and she said, "I hope those gummy bears were worth it."

I have now eaten about 40 of them and yes- yes they were worth it. But I do think it will be a LONG time before I attempt shopping with the guys by myself again.

AND when I do- I am using those belts and possibly installing another set to use, just in case.

Is it nap time yet??

Casey passed out cold.

Connor passed out cold- same position. I love twins!

Saturday, March 10, 2012

Fair warning- I'm in a mood....

I try very hard to show as many people as possible what incredible blessings my sons are- how EASY we actually have it in our lives. I have enlightened some, annoyed a few and shared the wonder of Casey and Connor with countless people. There are days I realize that my efforts and the efforts of families like mine are just not doing enough fast enough to make people realize that being afraid of Down syndrome is foolish.

Today I read that a couple in Portland, Oregon, was awarded nearly 3 MILLION dollars in a wrongful BIRTH suit. Let's look at that again- WRONGFUL. BIRTH!

This couple decided to have genetic testing done during the pregnancy and the child was not found to have Down syndrome. It turns out she does, in fact, have Down syndrome. She has mosaic down syndrome. The difference between mosaic DS and trisomy 21, which C&C have, is that in mosaic DS not every cell is affected- only some have the extra 21st. In trisomy 21 ALL cells have the extra 21st chromosome.

Had the couple known ahead of time they would have aborted their child. Since they didn't know they feel like they are stuck with this little girl.

I am really angry that the case was not thrown out, that a jury sided with them and felt sorry enough for their "burden" that they awarded them ANY money at all. I am angry about the precedent set by this case. But mostly I am angry that this little girl seems unwanted, unappreciated and viewed as a burden rather than a blessing.

WHAT???

What is this world coming to when people do not recognize the value of a human life? I am disgusted. I am angry. I am outraged.

I'm so, so sad.

How dare these people call themselves parents. They aren't. They are greedy, pathetic jerks.

If raising your child is such a chore why not give her to a family that would LOVE to raise her? Why not just admit you are not loving enough or compassionate enough to look at your own flesh and blood and LOVE her regardless of the number of chromosomes she has.

A real mother looks at her child and sees perfection. A REAL mother doesn't need money to "deal" with the burden of knowing her child should have been killed prior to birth.

Apparently the parents have received death threats. Let me cry for them. Nope. I have ZERO sympathy. It's no more than they offered their daughter. They would have slaughtered her before birth had they known she didn't meet their definition of perfect.

90%+ of babies diagnosed before birth with Down syndrome are aborted. KILLED. MURDERED. SLAUGHTERED.

Why?

Because they aren't "perfect"??

What's perfect? I'm not perfect though I don't have any extra chromosomes. I am not even close to perfect. I am flawed. This post proves it. I have an angry heart today. But THOSE people- those disgusting excuses for parents need to realize they aren't perfect either. FAR FROM IT. They are flawed and yet there are many who love and support them regardless of their MANY shortcomings. It's unfortunate their daughter isn't lucky enough to be afforded the same unconditional love.

There are people in my life who think I should ignore things like this. That I should not be affected by stories such as these that PROVE that my kids are less valued in society. How can I ignore this? How am I supposed to know that there are so many who look at me with PITY thinking I am BURDENED by my sons? How can I ignore the fact that as a parent of children with DS I am FORCED to fight for them- to ensure that they are given a fair shake? HOW can I sleep soundly knowing that there are juries out there that feel so strongly that a child should have been killed before birth that they award her parents $3 million in compensation now that they are stuck with her? Things like this serve only to reinforce the view of the majority that children with disabilities are worth LESS than those that don't have any disability.

I've said this before but I feel that it bears repeating- how many rapists, serial killers, drunk drivers, dead beat parents, child abusers, molesters, robbers, or drug addicts have Down syndrome?? How many adults with DS are sitting on death row for killing? So, really, where's the perfection in that??

Casey and Connor may have extra chromosomes. They may not talk yet, we may FIGHT for every damn milestone they hit but they are the most amazing little men I have ever met. They smile at everyone they meet. They see an old man in a store that most people would look past and they SMILE. They reach out to touch him, to say HI, to see the man that so many forget to love. I have seen this behavior time and time again. They make people smile. All the adults and teens I have met with DS are the same way- they see the people the rest of the world would deem unworthy of a smile, a kind word and big hug. What's MORE PERFECT than unrestrained love? What's MORE perfect than a person who sees the beauty that most of us forget to notice.

Normally, I can let things like this just go but not today. I am so sick about this. Not just sick but absolutely FRIGGIN FURIOUS! MY KIDS ARE NOT WORTH LESS THAN SOMEONE WITHOUT DOWN SYNDROME!! THAT LITTLE GIRL DESERVES A LIFE FULL OF LOVE AND NURTURING!! Sometimes I really hate this world.

And as I write that- I turn around and look at my miracle men and I am reminded that my corner of the world is perfect. My little piece of paradise is far, far better because of who my sons are and I adore, love and am blessed by every last chromosome in those little bodies.

And to anyone who is too ignorant to see the joy and beauty of my life I feel SORRY for YOU. I PITY YOU. You don't need to pity ME. My life is better than you could ever imagine.