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,

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.


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

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.