These are the days...

I have been thinking a lot lately about changing the blog. When I first started this blog it was so important to me to have a place to write about C&C and all the things I was feeling being a new mother and being new to the world of Down syndrome. Back then it was really all-consuming. As time has passed I find I am now used to this life and celebrating it rather than coping with it I feel like I need to change things HERE to reflect the change I feel in my heart.

I still want to share things about DS but I find it to be less of a focus in my life- it is taking a back seat to raising two very active little boys, getting ready for baby #3, and living life to the fullest and in the best way possible.

That said, I want to start including more things about what we as a family enjoy. I am an avid crafter and reader, Casey and Connor are just getting ready to begin Special Olympics Young Athletes, we love cooking (and eating) and just being together. So, in order to REALLY show people who don't know how normal my life is- I want to share just that. The normal, every day stuff with a nice mix of information about Down syndrome, other disabilities and things to raise awareness. AND of course- TONS of great things about my miracle men- after all- Casey and Connor are the real stars in our world.

Connor and Casey say HI!

I hope you will continue on our journey with us and grow to like the changes. I feel good about this.


I have been keeping really busy the last few weeks trying to get ready for Reagan. I have been crafting like crazy and trying to organize the house so we have room for a whole other person. This is no small feat. Casey and Connor have SO MUCH STUFF! I decided to combat this problem by assembling cube shelves for the living room. I was inspired by friend Jeannette and her awesome living room where everything has a place and her little boy Adam can find anything he wants to play with easily. What a difference!

BEFORE: A huge jumble of toys in a 55 gallon tote.

AFTER: Everything has a place and I am LOVING it!

So, with that tackled, I got to work on some pieces for the nursery. Reagan's room will be Gray and Pink! Thus far I have made the following:


This is a small side table I painted. It has butterflies on it each featuring a different quality or value I want to instill in our new daughter. Too many girls are brought up believing that they should be princesses or (this one makes me shudder) a DIVA. In our house, we want Reagan to grow up knowing the importance of honesty, integrity, faith, love, fun, strength and more. This table will serve as a reminder to her that life is about more than superficial things, that a strong moral foundation is a gift no one can take away.

These are just some simple letters I painted with white acrylic paint and used rub on transfers to spell her first, middle and last names. I added some pre-painted wood embellishments I found at Pat Catan's for $.33/each. I love how they turned out.

My final project was inspired by something I found on Pinterest. If you aren't using Pinterest- you are missing out. I am beyond addicted but always inspired by ideas I see there. This is a great example.

I turned THIS:

Into THIS super cute storage cabinet!

Enough of my crafting. I'll leave you with a Casey and Connor update- they are both tackling going DOWN the stairs. It's pretty fantastic and I am ALMOST past the utter terror I feel watching them go down the stairs. Ehh, what's a few more gray hairs?

Blessings.

As always- emails welcome at meghan_wilkinson10808@yahoo.com

Hello again...

Sorry for the gap between posts but there has been much going on around the Wilkinson household. First, I want everyone to know that we found out on January 20th, that our June baby is going to be a beautiful little GIRL! We are ecstatic and can't wait to meet her. We have decided her name will be Reagan Delaney. All results from her ultrasound look great and everything is measuring perfectly. While we did not get any prenatal testing with this pregnancy I feel like everything is so different this time around. She is much more active than her brothers were at this point and though the boys showed no soft markers for Down syndrome on any ultrasound I am feeling confident our little princess will be born without an extra chromosome. It's a gut feeling and I could definitely be wrong (it has been known to happen on occasion) I will love her regardless of her chromosome count if I am wrong. It doesn't matter. She is already adored- so much.

Casey and Connor are making huge strides every week. Connor is finally opening up verbally a little- he now says baby and he is beginning to walk more to keep up with his brother. Casey says dada and no and yay- though they both throw out words every once in a while that surprise both of us- Casey said down and Connor said toes but only once each.

This week both of our miracle men went down the stairs for the first time. That was a heart pounding experience for mom, believe me!

I never have posted much about the feeding issues we have with C&C but they are both incredibly picky eaters and refuse about 95% of what we offer them. They like crackers and toast and dry cereal. Rounding out their diet is yogurt and applesauce and an occasional chicken nugget but that is rare and only Casey eats those. Connor has lost some weight and we are constantly trying to figure out what they may eat. It turns out Casey is a HUGE fan of the chocolate chip cookie. See pictures below.

Connor is not a fan of the chocolate chip cookie. Note how clean he is after throwing said cookie to the dog.

And the search continues for more foods that these two will eat. It's an adventure.

In other areas of our lives- On January 24th, Declan Simon, a good friend of my family died. He had battled cancer for a long time but was taken by a staph infection he got while in the hospital. It was a big loss for many including my mom who had known him for many, many years. Declan was a good hearted man, a devout Catholic, an amazing drummer, a great father and friend and most importantly an outstanding person. He was also a big advocate for Down syndrome, volunteering at many events hosted by the Up Side of Downs. He was very much looking forward to the Buddy Walk this year. He adored Casey and Connor and they adored him. Declan was laid to rest wearing his blue and yellow Buddy Walk/ Down syndrome awareness bracelet. He is greatly missed.

Finally, I want to take this opportunity to let you all know about a very special little girl who lives just one town over from my family. Her name is Quinn and she is 5 months old. Quinn has Junctional Epidermolysis Bullosa. I first learned of EB on the blog "EB"ing a Mommy- http://randycourtneytripproth.blogspot.com/ - Tripp Roth was an inspiration to many and his mother, a true hero in every sense of the word. I cannot fathom what Quinn and her family are going through with this awful disease but I want them to know that they are not alone and that there are people praying for them. Please keep them in your prayers. Locally, there will be a spaghetti dinner to benefit this little angel. If you would like to help and are not in the area to attend the dinner you can send a donation to:
Quinn R. Seymour Benefit
℅ Knights of Columbus
P.O. Box 2189
Hudson, OH 44236

Every. Single. Dollar. Helps. I realize that times are tough but having a child with extreme medical issues trumps most financial concerns the majority of us have. If you can help- please do. If you can't help financially share her story and hopefully someone you know can help. Thanks so much. If you would like to learn more about Quinn she has a Caring Bridge page that can be viewed here: http://www.caringbridge.org/visit/quinnseymour . You will have to create a Caring Bridge login to view but worth it to follow her story. She is stunningly beautiful.

Ok friends, thank you for reading. Thank you for sharing in our journey. Every view of our blog warms my heart. Emails and comments ALWAYS welcome to meghan_wilkinson10808@yahoo.com

xoxo.

Update on Team Amelia

The public outcry over the treatment of the beautiful little girl deemed unworthy of kidney transplant based on her mental development is staggering. Nearly 17,000 people have signed a petition demanding that Children's Hospital of Philadelphia reconsider their decision to deny young Amelia a kidney.

I just read a report on CBSPhilly.com that included a statement from the hospital. 'CHOP has issued a statement saying it cannot comment on individual cases due to medical privacy laws, but reaffirms that it does not discriminate “in any way.”' and further reports indicate that the hospital has contacted Amelia's family to arrange a meeting to discuss her daughter’s case further.

It just goes to show you what THOUSANDS of angry parents and friends can accomplish when they speak out for what is right. Allowing Mia to have this procedure is the ONLY right answer.

Denying a patient a medical procedure based on mental development or difficulties is in direct violation with the United Nations Convention on the Rights of Persons with Disabilities. In Article 25 it states that parties are to “recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability.”

Further, Article 10 is about the right to life and reaffirms that “every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.”

I will be interested to see if CHOP actually stands by their original decision or if Amelia is given the life saving transplant that would never be denied a typical child. It still disturbs and disgusts me that in 2012 we are still so in the dark ages when it comes to people with cognitive delays and disabilities. There are so many stereotypes to overcome- so much ignorance to combat and stories like this one show just how many people are willing to stand up and demand better- to demand a change.

The fact that strangers all over the world are fighting not only for this ONE child but for ALL children that may one day be denied gives me hope that we are moving in the right direction.

If you haven't signed the petition for Amelia yet you can do so here: http://www.change.org/petitions/executive-vice-president-and-chief-development-officer-allow-the-kidney-transplant-amelia-rivera-needs-to-survive

As always, I welcome all comments either to the blog or to my email address meghan_wilkinson10808@yahoo.com

RISE UP and FIGHT!

I settled down to relax for the evening next to my husband. The boys are in bed and we were going to watch the final episode of Extreme Makeover Home Edition. I got on my phone to check FaceBook on a commercial and was sickened and dumbfounded by a story I read about Amelia, a young girl who has Wolf-Hirschhorn Syndrome.

Amelia needs a life saving kidney transplant. She has a family donor. She was DENIED this operation because she has mental retardation.

Wait! What? Back up!!

Am I missing something? Is it not 2012??

Sadly, I am learning that this is not an unusual occurence in the world. If a patient's IQ is not high enough they can and routinely ARE denied transplants. HOW IS THIS LEGAL?

Just because a doctor does not understand the value of a child's life with a disability does not mean she doesn't have a HIGH QUALITY OF LIFE! Just because some arrogant jerk thinks her life is worth less because she is not as high on the IQ scale as another child he is willingly sentencing her to death.

The last I checked GOD is the only GOD. Just because you wear a white coat does not make you a GOD- not even close! This doctor who decided Amelia is not worthy is a MURDERER. He is WILLFULLY killing a beautiful child because HE is ignorant!

I am sick over this.

I sit here, thinking of my beautiful boys who are technically "retarded" based on a medical definition. I wonder what I would do if for some reason one of them needed a transplant to save their life and they were denied. I know what I would do. I would FIGHT. I would RISE UP and DEMAND better! I would take their story to every person I could think of and I would make sure that every media outlet, every politician, every parent and patient's rights group knew about their situation. Amelia may not be my daughter but as the mother of two children with disabilities this hits closer to home than I can express. I would rip the very heart from my chest and somehow give it to my child to ENSURE he would live. For Amelia- I will fight just as hard. I will fight and speak out for this sweet girl because SHE CAN'T speak for herself.

Who should be the one who determines who lives and who dies. Easy. God. Not a doctor. NOT a team of doctors. NOT SOME HOSPITAL.

Help save Amelia. Help her family. Help kids like Casey and Connor who may one day be in this same boat and will need THIS case as a precedent setter.

SPEAK OUT and RISE UP! Fight for Amelia. Fight for all the kids who can't do it themselves.

To read more about Amelia visit here: http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/

To learn more about Wolf-Hirschhorn Syndrome visit here: http://www.wolfhirschhorn.org/about-wolf-hirschhorn-syndrome


This is SAD. But more than sadness I feel anger- RAGE! This may be about a little girl I have never met. But next time it could be MY sons. It could be any one of the hundreds of children I have met in the Ds community. I WILL NOT allow myself to sit idly by while this happens.

Stand and fight with me. Children's Hospital of Philadelphia has a FaceBook page. If YOU are disgusted- write them there. Share your outrage! https://www.facebook.com/ChildrensHospitalofPhiladelphia

Typical....

Life with two 2 year old's is pretty amazing. These two crazy boys go non-stop from the time they get up (usually way too early for my taste) until I finally corral them into cribs for naps (which are usually just quick pit stops to recharge their little batteries) so they can play until bed. Everything they do is fantastic!

I know, I know, someone out there is dying to say , 'Just you wait! The terrible two's are coming' or the 'Trying 3's are just around the corner'.... I can not believe how many times I have heard those things when I proudly proclaim my boys are wonderful and they are well behaved. They are. Truly.

Now, don't get me wrong- we have our moments. The boys are going through a particularly bad biting phase right now. It's not uncommon for one or both of them to have at least 3 bruises at any given time from his brother's teeth. I am trying time out right now. It's somewhat effective.

Also, like typical 2 year old's they don't like to share. Ever. They subscribe to the Toddler Property Laws.

Casey especially believes that ALL the toys in the house are his and his alone. If Connor is across the room playing by himself Casey will quickly crawl over and take whatever it is he is playing with away from him. If Connor resists- Casey bites. On the bright side, they are starting to combine skills- stealing toys AND biting.

They fight sleep, they throw food and cups on the floor at meal times, they pull the dog's tail and ears and occasionally his tongue, too! They have selective hearing, they scream when they are frustrated. They are busy and curious and INTO EVERYTHING! They pull paper out of drawers, dump my purse out, and fight me tooth and nail over diaper changes. But guess what? They. Are. Two. It's all normal boundary testing.

I accept this.

I relish it.

I LOVE that they are so....

TYPICAL!

People assume my life is hard because I have 2 boys with a disability. That's THEIR perception. In my eyes, Casey and Connor are the perfect ones. And, my life is not hard. It's wonderful. My boys are just like any other 2 year old's you may meet.

They love Sesame Street- especially Elmo.
They get excited when they see big trucks outside our house.
They love to read books.
They enjoy soaking the entire bathroom(and mommy and daddy)during bath time while seeing who can splash higher, faster, or more.
They like wrestling with Daddy.
They love toy trucks and making truck noises.
They build awesome towers with their blocks.
They enjoy finger painting and coloring.

Totally typical. COMPLETELY wonderful.

People will always have their ideas about Down syndrome. It is my job to make sure that I inform as many as I can that life with a bonus 21st chromosome is awesome. Yes, we go to speech therapy 4 times a month and physical therapy twice a month and we have an awesome Help Me Grow and Early Intervention team but I don't see these things as a burden or as anything abnormal. Lots of kids and adults use physical therapists and speech therapists- we see them all the time at our appointments. I view our extra things as a bonus- we have an entire support team to answer questions, help us to understand how the body works, how the brain processes sounds, how hard the hands work to grip a pencil. I look at all the extras as BLESSINGS!

We have a great life. I think everyone should be as happy and fulfilled as we are. I never look at my life at the end of the day and wish I were someone else. However, EVERY NIGHT I thank GOD for giving me such a rewarding and love centered life.

They won't eat REAL food...

My boys are EXTREMELY picky eaters. Or, "non-eaters" to be more accurate! They live on dry Cheerios, plain waffles, dry toast, applesauce, yogurt, milk, Goldfish, graham crackers, egg yolks- no whites- and occasionally pizza or chicken nuggets. That's it. They have been this way for over a year now and everyone keeps telling me they will grow out of it.

I am beginning to question that.

My husband is also really picky. He does eat a better variety of food than the boys and is far more willing to try new things but he is still pretty limited in his diet.

It must be genetic.

Anyway, my boys won't eat real food. That said, my nickname for Connor is "the goat"- he will eat paper, pool noodles (you know, the Styrofoam ones?)and he can regularly be seen LICKING the carpet. Thanks to our dog for teaching him *that* delightful trick! Casey also enjoys paper- important papers seem to be his favorite- and they both LOVE to chew on socks.

The other night we took the boys up for bath and while I was undressing Connor, Casey quickly crawled away and went to see what our cats were up to. We have 4 cats. Little Lady is the momma to Michael, Junior and Goliath. All the males are pretty large cats. They also all seem to shed wads of fur all over the house. All. The. Time.

So, Casey is on his adventure and I peek around the corner to look for him just in time to see him pick up a gigantic fur ball from the floor and SHOVE it in his mouth without a hesitation. I immediately scrambled over trying to pull the kitten-sized ball of fur out of my toddler's mouth. He attempted to bite my fingers off and I jumped back, shaking my hand and wincing at the teeth imprints he left. I refocused on getting the hair out of his mouth only to find he swallowed it. Oh. My. Gosh! My kid just ate a hairball. Fail.

Not only did he eat the hairball- he also seemed to enjoy it. Immensely. To make that point more clear he smacked his lips a few times and then smiled at me. He looked content and I felt nauseous.

Pasta? No way!
Fruit? Nope!!
Vegetables? Not a chance!

But a rogue hairball on the carpet- DELICACY!

I'm still waiting to find that one in a diaper.

Ahh, the joys of motherhood.

New Year. New Resolution.

Happy 2012!!!! Looking back on 2011 I can honestly say we had a wonderful year. I would rate my overall happiness with 2011 around 98%. We somehow managed to keep our two boys super healthy last year. They each had an ear infection and a couple of cases of pink eye- though I debate the diagnosis. Connor had his little broken leg but he was a great sport about being casted for 4 weeks. We had a great turnout for the Buddy Walk. We got to meet some really fantastic new friends and spent some serious quality time with family. I am so thankful and grateful for every blessing we had last year and I am very optimistic for 2012!

NEW RESOLUTIONS!

I am guilty of making New Year's Resolutions and fizzling out on them within the first few months of the year. I would like to break that cycle this year. I am making a few, simple resolutions for 2012:

*Update this blog once a week. (Hopefully that will be possible after baby #3 comes in June!)
*Continue to spread the word that DS is not scary- that my life doesn't suck, and that my kids are MORE THAN WORTHY OF LIFE!
*Begin potty training Casey and Connor.

That's it. I hope that our friends and readers continue on our journey with us. I hope that we can get the blog up to over 100 followers- we are at 77! I also hope that 2012 is the year I can make a bigger impact, and a bigger difference in the world. It is an honor and a privilege to be on this road and to speak for my sons until they can speak for themselves. Thanks for being here in 2011 and staying in 2012.

Love, Meghan

A Guest Post from 3 WONDERFUL young women

I was asked if I would post a "guest post" on the blog. The following is a post from another blog- and I think it shares an important message. Please take the time to read what these ladies have written and visit their blog. Share their words and know that you can make a difference! Thanks, Meghan

"Orphans are easier to ignore before you know their names. They are easier to ignore before you see their faces. It is easier to pretend they're not real before you hold them in your arms. But once you do, everything changes.”

Have you ever felt the desire to do something that is going to effect a whole lot of people? The thought of your life making a difference to so many more....

But then you realize you are just one. You can not make a difference.

We have all had those feelings. It is how you choose to take those feelings and act, that shapes who you are, and your purpose in this world.



We are just three teenage girls.

We have a passion.

We have a love.

We have a hope.

We have a vision.

And, we have chosen to act.


Sunny is 20. She has a 19 year old brother who has Down syndrome. She lives in London.

Savana is 20. She has a 3 year old sister who has Down syndrome. She lives in America.

I, Taylah, am 16. I have a 3 year old cousin who has Down syndrome. I live in Australia.

Each of us have an intense love for someone with Down syndrome. We see them in a way most of the world chooses not too.

Did you know that 90% of babies with Down syndrome are aborted before they get to enter this world? 9 out of 10! Their lives are taken because they have a disablility. It just doesn't seem right, does it?

Did you know that in Eastern Europe, children with disabilities, such as Down syndrome, are left orphaned at birth.

They live in an orphanage untill they are 5 years old.

Once they turn 5 they are placed in an adult mental institution where conditions are so horrible most don't survive a year.

With adoption costing over $30,000 it is likely that most of these children won't ever see outside the walls of a crib.

When we were given the facts we decided that it was too devastating to just sit back. We decided to ACT!

'To love the unloved' was founded in December, 2010.

Since then, we have helped fund the adoption of 13 precious children!

Each month we host giveaways for a child or family from Reece's Rainbow (an adoption ministry that helps find homes for orphans with Down syndrome) on our blog!

There are so many ways that you can help 'To love the unloved' out!
Firstly, you can give a donation and enter the give away!

Secondly, you can drop by and leave a message of encouragement and support!

Finally, please keep us, and these precious babies in your thoughts and prayers!

Christmas is an incredibly important time of year for us and many of you! It is the time of year that many of us celebrate the birth our Saviour Jesus Christ. It's a time of Love, Kindness and Giving, a holiday where we appreciate all that we are lucky enough to have. We hope you will join our cause this Christmas and enjoy the time you spend with us, as we 'change the world one orphan at a time'

Visit our website:

Our blog:

Our facebook page:

Or emails us: tolovetheunloved@gmail.com

Thank you so much!

Love,

Tay, Savana and Sunny!

Christmas Blessings.

I feel blessed every day. I thank God every night for all the incredible gifts He has given to me and my family. There are so many things to be thankful for in my life. I have a wonderful husband, a strong marriage, 2 perfect and amazing little boys, an incredible family- in laws definitely included, a home, a strong faith, a church I adore, great friends, a voice I use to advocate for my sons and all those with disabilities, a crazy dog, great neighbors, 2 cars that are reliable, the chance to be a SAHM, food on the table, clothes on my back, a healthy baby growing in my womb, clean water, a safe neighborhood- and SO MUCH MORE.

Despite the fact I feel like I can't possibly be given any MORE to be thankful for blessings continue to come into my life. This Christmas we were blessed with an anonymous gift from a generous "Santa" and we are beyond blown away.

We were also blessed with seeing both our boys begin walking. They are now taking tentative steps throughout the house and are getting stronger everyday. Nothing could have made me smile more than seeing the looks on their faces when they gained one more step toward independence. Beautiful!

Finally, when my boys were about 5 weeks old my cousin came to our home to take some newborn photos of Casey and Connor. Unfortunately, the files were corrupted and we feared we would never see them. We decided not to get any other newborn pictures taken and I just figured they were forever lost. On Christmas Eve, my cousin- unbeknownst to me- slid a disc of 54 pictures in our diaper bag. They were some of the lost photos. She sent them around the world to a friend who is a computer genius and he was able to help recover them. We found them today.

I am going to share some of her work here because these are such beautiful photos of my miracle men when they were brand new to the world and all I saw in them was beauty and love. I still see those things but now they have fabulous personalities to go along with that and I see a much more round picture of who they are.

Enjoy these. I know I do.

God Bless.

Happy Birthday Casey and Connor

My dear sons,

Two years ago I was at my doctor's office for a 36 week ultrasound. Before I knew it we were heading to the hospital to have you guys by C-Section. I was not prepared. My mom was on a plane heading for Las Vegas to run a half marathon, my hospital bag sat partially packed in a closet, my camera remained on the table at home. None of that really mattered- you were coming.

The day you were born I was also born. I discovered a new road laid out before me. I was as unprepared for this road as I was to go to the hospital. Again, my level of preparation didn't matter. I was no longer in control- you two were.

I have grown so much since then- just as you have. I look at you everyday and I can't help but feel awed that you are mine. You are beautiful and smart and funny. You are sweet and loving but you both have stubborn sides and when you throw the occasional toddler fit I can't help but smile- you are incredible.

I love watching you discover new things. Your world is ever expanding. You have opened my eyes to the beauty of everyday objects, the simple joy of scraps of paper, the profound wonder of all that surrounds us. Your eyes have taught mine to see. Before you, I was blind. You have taught me to see with my heart.

I am proud to be your mother. I am honored to be your voice. I am humbled by the love others feel for you, for our family. I will stand by you and for you for the rest of my life. I will protect you and prepare you and adore you. It's the perfect job for me.

This year I am confident you will begin walking and will utter a sweet word or two so we can hear your sweet little voices. I vow to explore with you and play with you and read to you. We will have such adventures this year.

Happy Birthday, miracle men. I may be your mother but you are the ones who gave ME life. I love you.

With all my heart,
Forever.
For always,
Mommy