Wednesday, November 30, 2011

Apologies and Pledges

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

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

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

Sunday, November 27, 2011

So... small

Dear God, Please give me the strength I need to be a good mother, a good advocate and a strong voice in the world. I pray that I can change how people view those with disabilities. There are so many with such huge platforms that choose to degrade and belittle rather than choosing to encourage others to treat EVERYONE with respect. Please Lord, help me on this road you have laid out before me. There are times I feel too small to do much and there are times I feel to angry to be productive. I don't know why you chose this as my life but I am yours, Lord. Help me do you proud. Amen.

That was my Facebook status tonight and the prayer that I feel so strongly in my heart. After reading the review of George Clooney's new film "The Descendants" that was written by a wonderful friend who has a son with Down syndrome I have been D.O.W.N. down tonight. There is a scene that is utterly offensive and derogatory with use of the "r" word and where one character actually makes fun of people with disabilities saying something to the effect of "Speaking of the retarded," he says, "do you ever feel bad for wishing a retarded person or an old person or a disabled person would hurry up? Sometimes I wait for them to cross the street and I'm like, 'Come on already!' but then I feel bad."


Again. A question I have no answer for. I will never have an answer.

I have pain though. And anger. And an overwhelming need to protect my children from the world I brought them into

When will it stop? How does someone like little old ME make a difference? I feel helpless and angry and so damn sad that I wonder if I'll be able to sleep tonight. I honestly believe that God has a purpose for my life. I want to do something good. I feel really small. So. Small.

And this problem is SO OVERWHELMINGLY HUGE!

I am having a regular, old pity party tonight. I am sorry. Those of you who actually read this blog deserve something better, brighter- but tonight I don't feel bright. I feel angry. Really angry. And totally useless.

I am going to go to bed and pray that God give me the strength to not pity to not feel small and help me find my path more clearly defined. And I am going to THANK Him for giving me Casey and Connor.

That's the true blessing here. If it weren't for my magical, miracle men I would still be living my life as the shallow, unaware, uncaring mess I was before. If C&C didn't have their bonus 21st's I would have no idea that there was so much beauty in the world- tainted by occasional ugliness. I want the best for my sons, for all children- with disabilities and without. I want EVERYONE to know the love that I feel for my sons and I want them to share that love. I want people to learn to raise up rather than knock down.

I don't want much.


Carrie Underwood's song So Small is my theme song tonight.

Yeah, Yeah
What you got if you ain't got love
the kind that you just want to give away
its okay to open up
go ahead and let the light shine through
I know it's hard on a rainy day
you want to shut the world out and just be left alone
but don't run out on your faith

'cause sometimes that mountain you've been climbing
is just a grain of sand
and what you've been up there searching for forever
is in your hands
when you figure out love is all that matters after all
it sure makes everything else seem so small

it's so easy to get lost inside
a problem that seems so big at the time
it's like a river thats so wide
it swallows you whole
while you siting 'round thinking 'bout what you can't change
and worrying about all the wrong things
time's flying by
moving so fast
you better make it count 'cause you cant get it back

sometimes that mountain you've been climbing
is just a grain of sand
and what you've been up there searching for forever
is in your hands
oh when you figure out love is all that matters after all
it sure makes everything else seem so small

sometimes that mountain you've been climbing
is just a grain of sand
and what you've been up there searching for forever
is in your hands
oh when you figure out love is all that matters after all
it sure makes everything else...
oh it sure makes everything else seem so small
Yeah, Yeah

Thursday, November 17, 2011

Prayer Warriors PLEASE

There is this amazing little girl who I have never met. She is beautiful and strong. I love her. I love and respect her mother. I have never met her either. Sage Baker was born on December 3rd, 2009, 1 day before Casey and Connor. Her mother was part of the pregnancy website I found so many close friends on while carrying the boys. The friendships I made on this site are very real and are very strong and now as our little December babies turn 2 many of us are still very close and talk daily.

Athena, Sage's mom, has lived through so many tough nights since her beautiful girl was born. While her first 6 months were fairly typical, Sage was in for a battle no parent wants their child to face. Sweet angel Sage was diagnosed with leukemia on 6-26-10. The type of leukemia that she has is called acute leukemia of ambiguous lineage(or biphenotypic leukemia). You don't have to know much about cancer to know that that is a scary diagnosis for a 6 month old baby. The following is adapted from Sage's Caring Bridge page.

Many, many prayers were said for Sage and her whole family. Through God's grace Sage went into remission in September of 2010. She received a stem cell transplant four days after Christmas in 2010. She then spent 3 weeks at the end of January to mid February in the PICU because of a sever lung hemorrhage. Again, she fought and won. She was put on a ventilator and beat the very tough odds and survived. Athena was told by doctors that 95% of children who are put on a ventilator after a transplant like Sage's don't make it. Sage proved herself a fighter.

Sage was then diagnosed with Graft versus Host disease. She was back in the PICU and back on a ventilator for 2 1/2 weeks. She was in septic shock. She beat the odds again and was transferred back to the hematology/oncology unit on 10-3-11.

Doctors tried to prepare Sage's family at times for her death. They tried to make them understand that there was little that could be done to save her life. Sage and GOD had other plans. In what can ONLY be called a miracle Sage was released from the hospital on November 10th, 2011. Cries of joy and prayers of thanks went up all over the world for sweet baby Sage.

It is with the saddest of hearts I write this next paragraph- Sage was re-admitted to the PICU today for Septic shock. Doctors are trying to let this little warrior fight this without being put back on a ventilator. They believe that with the condition of her lungs she'd never get off it again.

Many times God has shown that if we believe hard enough and pray enough miracles happen. Sage has PROVEN she is stronger than most adults. Athena has PROVEN that a mother's love and faith can move mountains and help facilitate miracles. They need another one. They need it bad.

I can't begin to imagine seeing one of my little men so sick. I can't imagine a doctor trying to prepare me for their death. I can't even BEGIN to fathom the pain. PLEASE, if you pray, if you know people who pray, SHARE THIS STORY. SAGE NEEDS MILLIONS of prayers. She can win again. She can fight this. Pray that her little body, not even 2 years old yet, can overcome one more awful infection. Pray that God holds her in his mighty hands and heals her little body. Pray for her mother and father and all her family members that they be given the strength they need to get through this. Sage is a miracle, a wonder, a hero, an inspiration.

Give thanks for every healthy happy moment you have with YOUR children and try for 1 second to imagine how this must be and then think of how much you would want people to pray for your baby. That's really what it all comes down to, Sage could be ANY OF OUR CHILDREN. I've said before NOTHING in life is guaranteed. NOTHING. This could be your baby. Pray for her like she is.

Thank you.
God Bless Sage and Family.
I love you all.

Tuesday, November 15, 2011

I don't know much, but I KNOW I love you...

Once again, too long. I have been feeling pretty rough with this pregnancy. I do have excellent news to report- there is only one baby this time around and s/he is doing great! The baby is measuring right on with my due date of June 11th and all looks perfect.

This pregnancy has been such a different experience from the one with the boys. The first time I was completely oblivious to the fact that *something* could be wrong. It never even occurred to me that it was a possibility. This time around I am VERY aware of the chances and though I try not to worry, it does creep into my thoughts. I have had some pretty vivid nightmares about the baby being born without an arm or no heartbeat. I still stand by my decision to refuse all testing and I am putting my faith in God that we will have the baby we are meant to have but still, there are those small, nagging worries.

When I went for my first prenatal appointment last week I was given a book about the pregnancy and there were pamphlets about all the available testing that can be done. I was more than a little annoyed at some of these "informational" brochures.

In one for the new blood test available the term "Down syndrome fetus" was used. That annoyed me on so many levels but mainly because we strive so hard to teach people to use people first language. For example you don't say Down syndrome child, you say child WITH Down syndrome. They are PEOPLE first WITH a diagnosis second. Casey and Connor are NOT Down syndrome toddlers. That is such a small part of who they are. When will these medical "professionals" get this right??

I will say this; The midwife I met with for my first appointment was wonderful. Molly has such a warm personality and she just has this calming presence about her. At the beginning of my talk with her we were discussing my history and I told her C&C have DS and proceeded to make her look at pictures of the boys. She wants twin boys someday. She loved my miracle men- who can blame her? When we began discussing testing she said, "You don't want that, right?" 'No. I don't.' She smiled and said, "I have to ask but I figured." That was it. No pushing me toward it, no heavy sigh, no indication she thought I was a crazy lady. She was accepting and sweet and I think that once I get the go-ahead from my OB next month I will be switching to a midwife for this pregnancy and I think Molly is my number 1 choice.

I think more doctors and midwives should be as understanding as she was with what is ultimately a very personal decision. Women should not be pushed into testing if it's not something they are comfortable with. A woman on my June 2012 birth board on a popular pregnancy website said it best, "My husband and decided, before we conceived, that we wouldn't have any chromosomal testing. It's a Pandora's box I am not willing to open."

I am NOT opposed to testing. As I said, it's every woman's VERY personal decision. I DO however have a problem with what many choose to do with that information. If a baby is shown to have a higher likelihood of DS and the mother chooses to terminate the only one losing out is that baby. There is so much bad information out there about what life with a child with DS is like. If you want to test to know so you can be prepared, kudos to you. I am not one of those people who could have handled knowing ahead of time. I would have made myself sick with stress. If you want to find out so you can be sure you are having a "perfect" baby, well, that disgusts me. C&C ARE perfect. They are true miracles. I am blessed. I wish people knew that NOTHING is guaranteed in life. If your baby is born perfect you never know what might happen.

There are no certainties with children. Some live their whole lives perfectly healthy, others spend large chunks of their lives in hospitals fighting cancer. Still others end up with Chron's disease, Autism, brain damage- there are NO guarantees. At the very minimum this is true for my life. I KNOW Casey and Connor have DS. I KNOW there are things that will be difficult for them. I KNOW I will have to spend a lot of time fighting to make sure they get the same fair chances as other kids. I KNOW that people will look at us and judge- both positive and negative. I KNOW that I am blessed beyond belief. There are a lot of KNOWNS in my life. The UNknowns are the same ones parents of typical kids deal with all the time. I can handle that.

Thanks to everyone who continues to write and comment. I have the map narrowed down to 2 choices and should have it ordered in the next week. I will begin marking it and will post a picture as soon as possible!

Have a blessed day!!

Saturday, November 5, 2011

To my extended family...

I am so overwhelmed by the number of amazing emails I have been receiving from people all over the country and Canada! Thank you so much to all of you that have commented or emailed or both! When I first began writing this blog I think it was more of a therapy for me than it was anything else. What it has become today is a way for me to share the love and joy that I experience with my sons with the world. That is truly a blessing I never imagined!

Writing that last sentence makes me realize how far I have come as a mother and advocate. When the boys were first born I think I merely COPED with the diagnosis. I just got through the day, often numb, but still overwhelmingly in love with the guys. As time went by, I began to get more comfortable with it and didn't feel the need to blurt it out to everyone. In the beginning, I would announce it to everyone to gauge their reactions. It was my way of seeing if it mattered that they had Down syndrome. I would say it really fast, like I was ripping off a painful ban-aid. "This is Casey and Connor and they have Down syndrome." Pause. Wait for reaction. Prepare to cry or fight. Sigh with relief when someone said they were adorable.

Now, I celebrate my sons. EVERY SINGLE CHROMOSOME! They are such fantastic little beings! And it's no longer a painful band-aid in need of a quick rip- it's a badge of honor I wear. It's more like "This is Casey and Connor and I GET to be their mother. HOW LUCKY CAN AM I!??!"

People tell me that I am a great mother and I used to shy away from that. Now I agree. I do everything I can to make my sons feel important and validated and capable and amazing and PERFECT. I make plenty of mistakes- hell, my boys have not willingly eaten a single vegetable since December of '10, but that's OK. There are days when I am the reigning queen of morning sickness and they watch too much TV while I try just to keep breakfast down but anytime they turn around I am there and I tell them I love them.

Being a parent to any child is challenging. Being a parent to twins is often like being a super hero- how many places can I be at one time? But being a parent to 2 children with Down syndrome is the least of my concerns and is probably the least challenging part of my life. If someone would have told me that 2 years ago I would have told them they were crazy. Now, I know it is nothing but an absolute truth.

All the letters and comments I have gotten lately remind me of how truly outstanding my life has become! Thank you for reminding me! All of you who read this blog, who share this blog and who live your lives loving someone with a bonus 21st make MY LIFE better. Even if I don't know you or your story, the mere fact that you share in our journey makes you family. I love my family.

Thanks so much!

p.s. Keep the emails and comments coming. I want to know where you are from so that I can mark it on the map!

Tuesday, November 1, 2011

Happy November

It has been really busy here in the Wilkinson House! We are still going weekly to speech therapy appointments and it is really starting to pay off. Casey has his first official word- NO! and Connor is holding long, babbling conversations with his brother and anyone else who will chat. It's amazing.

We also had Casey evaluated for Physical therapy today. He ended up measuring at about 12-14 months which is something I was both prepared for and expecting. He will receive PT twice a month and it is our hope that with work we will have him up and walking by Christmas- what a gift that would be!

Connor will have his evaluation on Thursday but he is already scheduled for twice monthly PT sessions also.

I am so thankful for the wonderful resources available to my children in our area. We have been incredibly blessed with amazing professionals who love our sons as much as we do. There are many who are not as fortunate and this is something I am well aware of and it makes me sad.

As we are approaching the Holiday season I am inspired to look at all the blessings in my life and I want to make sure I take the time to really appreciate each of the blessings we have been given. I will be starting a new project this year, a garland to hang in our dining room. The garland will be made up of leaves that will each feature a different thing we are thankful for. I think it really helps to sometimes SEE the blessings on paper so that you can fully appreciate each of them.

I am particularly thankful to each of the people who visit my blog and read about our lives. I have a request. Will anyone who reads this blog take the time to comment or email me where you are from? I am going to start a map for the boys and mark the locations of each of our readers so that they can see where they are touching lives. I can see that we get readers from all over the world and I am really curious how our readers in Russia, the UK, Australia, Israel and Japan have found us. There are many more locations but if you could participate in this project for Casey and Connor I would be greatly appreciative.

I must be going now but hope to update again soon.

Visitors, comment or email me at! Thanks!!