New hope, New Friends

There are so many days where the thought that my sons have Down syndrome never crosses my mind. Honestly. Those are the days when we are so busy living life, playing, reading and loving that I spare zero thoughts on their extra 21sts.

There was a time when the boys were first born that I would never have believed I wouldn't think of their diagnosis. I would have never believed someone telling me that eventually all I would see would be my sons. I was wrong. Again. My, my how often that happens.

Those days when I forget that my sons are slightly different than all my neighbors' kids are fun. I just enjoy every moment with the boys and soak up all the hugs, kisses and hair pulls they so love to share. That's NOT to say I don't enjoy EVERY SINGLE DAY with my boys- I do. Some are just more challenging than others and more importantly some are more fulfilling than others.

Which is why I am writing today...

Sometimes it seems that ALL that I think about is Down syndrome. And truthfully, the majority of it is super positive. I really don't have days where I am down about the future or present. I am so blessed by my children it would be ridiculous to be saddened by anything about them or the amazing community I find myself a part of.

The last two or three days have been FULL of thoughts of DS. First, I read a BEAUTIFUL story about Austin and Christi- a wonderfully inspiring couple with DS that are married and thriving. Their story gave me so much hope and joy.

Next, was a video done by the National Down Syndrome Congress and featuring adult self-advocates talking about their lives. These adults made me look forward to the future and KNOW that Casey and Connor are living in a time when they have more opportunities for success than ever before. And it also made me realize that my role in this journey is to keep spreading the word that people with DS can do ANYTHING. There was one young man on this video who was proud of being on the Dean's list in college- something I could never claim for myself. Incredible.

And today- I was looking through the stats on my blog wondering where the most traffic for it is coming from. I found a link to BabyCenter.com where there were some women discussing my blog. I must say- they made me cry. These women made me feel like I am doing something right- I felt loved by people I don't know, have never met or spoken to and they touched me deeply. To these ladies I say "thank you" and I ask that you keep spreading the word about my little blog.

There are big plans always brewing in my head. I am always trying to figure out how to make the biggest impact in the lives of my children and in the lives of others. It is something I think I feel led to do and consequently I am always thinking of things that might work. I feel like there are some big things coming. I have talked before about the Casey and Connor project and how I want to bring people together to make change happen in the lives of people with DS or in the lives of those of us who love someone with DS. I still want that. I am going to spend the next few weeks really working hard to get something together for this. I have a lot of research to do but I feel like the ideas are coming quickly and if I don't move forward with something I may lose my mind. If only there were more hours in the day.

Before I go I want to leave you with this thought- "I am only one, but I am one. I cannot do everything, but I can do something. And I will not let what I cannot do interfere with what I can do." ~Edward Everett Hale. What can YOU do to make this world a little better??

Have a beautiful and blessed day!

Meghan

It's been too long

Life has been really busy and I have been really bad at updating this blog. I need to make it a point to get here at least once a week.

Casey and Connor are doing great. Casey finally got a new tooth which gives him 5 and Connor still just has 4 but I know they are both getting more soon.

The guys have also discovered the joys of climbing stairs. They can't stand or walk yet but they can get upstairs for bath time in about 2 minutes. This was an exciting milestone as my back is really starting to feel the strain of having 17 month old boys that don't walk. I will be looking for a good chiropractor soon I think. I know that when they are finally walking I will miss these days where I get to hold them so often and I will wonder why I ever wanted them to get a little more independent but I guess that is just part of this journey.

We have also started a new session of swimming lessons. They meet on Mondays and Wednesdays just for this month but it is a great time for all 4 of us. Matt and I laughed so much the other day watching Casey splash and kick his legs and watching Connor go after his floating block that I know MY face hurt afterward. I love these swimming lessons because the boys get the freedom to move so much without gravity weighing them down making it harder. Casey kicked his legs for about 15 minutes straight and I know this would have been a huge challenge for him on dry land. They both continue to get stronger everyday.

Casey has also mastered the art of peek-a-boo. When we say "Where's Casey?" he throws his hands up and over his eyes. It makes me laugh every time. He does it too fast sometimes and covers his ears or his cheeks but that just adds to the charm of the game. Connor is starting to play as well though more often than not he covers his mouth. So adorable.

Both the guys are giving high five now and they blow kisses. Occasionally Casey will wave though he waves with his fingers in towards himself. Funny little men.

It has been a busy few month with all their new skills, tricks and games and we are enjoying every moment of life with our Miracle Men.

If you are on Facebook Casey and Connor have a fan page now. I am using it to share facts about DS and to help raise a little more awareness about the amazing community we are proud to a part of. Just search for Casey and Connor!

Have a blessed day and thanks for joining us on the journey!

God knows... even when I don't.

If there is one thing I have learned in my life it is that God has a plan. He does not clue me in to said plan and I just get to bump along and enjoy the ride. And enjoy it I do. Mostly.

The boys are teething right now.

My heart hurts for them because they are miserable and there is nothing I can do to take away the ache in their mouths. They smile and play like usual but they are a little more sensitive and there has been more crying than is typical around here. Poor little men.

I got off-track. I call C&C my little miracle men and I do so because they have brought me so much joy and they have really changed everything about me. They did the work of God in my life. I went back to church and I work on my faith every day. I pray with renewed hope and belief. I am more thankful and I constantly find myself in awe of the way that God works in my life. Enter Lindsey Scholz.

On March 23, 2011, I received a sweet, heart warming message on FaceBook from Lindsey, a gifted photographer, offering my family a portrait session. See, Lindsey realized all on her own what I have been preaching for almost 16 months- babies with Down syndrome are just plain GORGEOUS! That and she has a calling to spread the word and raise awareness that Ds is beautiful. Right she is!

I was blessed again this evening when I actually got to speak to her on the phone about coming to Columbus and doing this photo shoot and I am more excited about this than I can properly convey. Lindsey has this incredible spirit about her. I am really looking forward to meeting her and watching her work. You can view her photos on Facebook if you search for Lindsey Scholz Photography and you will see what I did when I first looked at her work- TALENT!

God had a plan when he gave Matthew and me Casey and Connor. He had a plan when they each got their bonus chromosomes and He has a plan every time I meet someone new. My mission in life is to make sure my sons get every opportunity they can and should. Meeting someone like Lindsey who is a stranger to me but who also wishes to raise awareness is a dream come true. Every time I think of the kindness and acceptance she has already shown my sons I get misty in the eyes. I know already she is an incredible person. God knew it before I did. Today is just another day when I am all too willing to enjoy the ride He has me on.

Life is sweet when you have

Double the love...

Goodnight.

Take that DOC!

This article is amazing! I wrote my own commentary at the bottom and it sums up very well how I feel about this. PLEASE- if this touches you in any way share it- including what I wrote at the bottom.-Meghan




I'm Sorry, Your Baby is Normal

by Bob Lincoln
Thursday, 6 February 2003



Warning: this article is intended to make a serious point in an interesting way. It is not meant to offend anyone, except possibly doctors.

--------------------------------------------------
I'm very sorry, I have the results of the genetic tests and they have confirmed our suspicions that your fetus is what we call... Normal. Some people prefer the terms "Ordinarily Challenged" or "Normal Syndrome". The syndrome can be easily identified by a complete lack of any interesting genetic characteristics. I know this will come as a shock to you, but you should be aware of what this is likely to mean.


If your fetus manages to survive the rest of the pregnancy and the birth, which is becoming more common these days, he or she will face some daunting challenges. Children who suffer from normalcy are prone to health and psychological problems. It is almost certain that the growing child will suffer a seemingly endless stream of viruses. They will frequently damage themselves, and sometimes others, from their excessive energy.


Their relentless demands will put a strain on your existing family and, of course, your relationship with your partner will suffer, and possibly end in a painful and acrimonious separation. Any children you already have, even if they also suffer from normalcy, will be jealous of the newcomer and all their extra attention. Many siblings are liable to be psychologically scarred by the new arrival.


I need hardly mention the financial consequences, although disastrous, they will be nothing compared to the emotional turmoil your life will suffer.


After a while, you may be lucky and find they can be kind and loving young children. They may find some temporary happiness in things such as music, dancing, food or playing with toys.


But if they survive early childhood, a Normal child is almost certain to grow into a Normal adolescent. Your years of sacrifice will be thrown back in your face as they become disobedient, wild and reckless. Unable to find happiness and contentment, they will treat you with contempt until they manage to leave home. Even then the suffering will continue as they will often return to try and extract money. They will blame you for their own faults and leave you bitter and twisted.


They may well become criminals, over a quarter of Normals will have trouble with the law, many will spend time in jail. Many will have problems with alcohol or drug abuse. Normal marriages are often unhappy and short and over half end in divorce.


Even if they become successful this is likely to be because of the often observed tendency of Normals towards excessive greed. The chances of them sharing their success with you are remote and they will tend to see you as an embarrassment.


Finally, Normal people are likely to die before their time. 23% will die of cancer, 33% of heart disease. Hundreds every year in this country alone are so distressed by their condition that they take their own life. I'm sorry to say that many will have had a lonely, painful and pointless existence.


I am afraid that Normal Syndrome is a genetic condition that affects every cell of the body, and so is impossible to cure.


Termination is an option.


Shall I book an appointment?


...from a parent who received a diagnosis rather like this.





Note from Meghan Wilkinson: Imagine if you were told all these things about YOUR baby. These are the things parents of children with DS are told all the time. Especially the part about termination. Think about this. REALLY take a moment to process that and THINK about what it would mean to you to hear these words. AWFUL right? WHY is it OK for doctors to frighten the parents of children with DS but they would never dream of saying these things to a parent pf a typical child? How many of the people serving life sentences in prison have Down syndrome? How many rapists, murderers, child molesters, crooked politicians, dictators, terrorists, drug addicts, wife beaters, alcoholics, drunk drivers, serial killers, kidnappers, perverts, slackers have an extra 21st chromosome? WHY is it considered a burden by so many to have a child with DS when the only thing that is GUARANTEED with a "typical" child is that they have potential. Look at it like this. I was a typical child and look what I am now. I am a stay at home mom who failed out of college because I chose to drink mass quantities of alcohol and not go to class. I then became a job hopping, debt accruing slack ass. I continued to drink and smoke and never lived up to ANY of my POTENTIAL. That was all true until I gave birth to MY MIRACLES and now I am trying to live up to the potential I had when I was born. Do you think that if the doctors knew what I would have done in my life to this point they would have suggested termination? My point is- no one's future is set in stone. I don't care how many chromosomes you have. You can have 46 like science says is perfect and DO NOTHING WITH YOUR LIFE. WAKE UP DOCTORS- PERFECTION is in the eye of the beholder and THIS mother is NOT going to stand for your insensitivity and biases any more. I'M FIGHTING BACK. The 90%+ abortion rate for babies with DS disgusts me and IT IS MOSTLY YOUR FAULT! QUIT SCARING women into thinking their lives will be forever ruined if their baby has DS. QUIT TAKING AWAY HOPE! God doesn't make mistakes- he does seem to make a whole lot of jerks that wear white coats, though.

Big News.... ok not really...

I know I have been slacking with the Blog but I am going to blame the fact that I have twins! I have decided I to try my hand at writing a book about my experiences with having two beautiful boys with DS.

And we march on...

This whole sad situation with Baby Doe has had me thinking more than usual which is saying a lot considering I am always trying to figure out how best to navigate the road of life. I am still sickened by this case but really I wonder how many of these things happen every year? There are stats that around 90% of babies diagnosed prenatally with Ds are aborted in the US and it is higher in many other countries. That's much the same that happened with Baby Doe. These babies are deemed not worthy of life. How is this acceptable to anyone? It's not acceptable to me and I want to fight back.

I am beginning to realize that a HUGE part of the problem is just plain ignorance. People just have no idea what life with a special needs child is like. I feel like it is my responsibility (and my HONOR) to educate them. I am an advocate not only for my sons but for all those out there with ANY disability. I want people to join in the fight with me. It's happening- the proof is in the response to Baby Doe but there is so much work to be done.

The public perception of those of us with kids with Ds is that we are special. "They" could never do what "we" do. God has chosen "us" for His special work. "They" think "we" are inspirational for loving our children. Does anyone else see the problem with this? "Us" vs. "them" is never a great thing but in this instance it is so offensive to me. I am offended because there is an implication that loving my sons MUST be hard work and that I am some kind of hero for not just chucking the boys out with the recycling. My sons are my greatest accomplishment. If I never do another thing in my life I will have made the world a better and more beautiful place simply by giving life to my little miracle men. It wasn't a choice- it was a privilege. I am HONORED to be their mother- not burdened.

So, what do we do? I think there are a few MAJOR things we can do to fight the tsunami of ignorance.
First- be PROUD of your family. Show the "them" that you have been blessed with such an amazing gift that there are not adequate words to express your gratitude.

Second- BELIEVE in your child. Never just accept the status quo- always EXPECT that they will and CAN achieve anything that you expect of them. Don't let other people dictate your child's ability.

Third- SPEAK UP- if someone uses the word "retard" or "retarded" or any other offensive terms in front of you- use your voice. You don't have to yell- just say something as simple as "I find that word to be very offensive." If they question you as to why- tell them! If it happens on a tv show or on the radio- write letters, tell your friends to write letters- speak up and EDUCATE.

There are so many more things we can do but I feel like things need to start changing. Once the public perception changes maybe there will be fewer aborted babies and fewer DNRs issued for helpless little babies.

I hope this didn't sound preachy- I just feel like the tides are ready to change. Let's push them in the right direction. There are over 400,000 people in the US with Ds- there are a lot of voices to be heard.

Together We Stand as One

Tonight I am full of love and pride and HOPE! Yesterday I heard the beginning of a story about a set of twins who were to be adopted into the same family. One of the babies was diagnosed with Down syndrome and he found himself left in the NICU of Arkansas Children's hospital with no one to take him home, without his twin and with the added bonus of a Do Not Resuscitate order in effect. Talk about a lucky streak- not so much.

When I first read about this little man my heart broke. I mean that quite literally- it was suddenly painful to breathe and all that I could do was try to fathom the cruelty and callousness of people.

Before Casey and Connor were born I didn't know if I could handle a child with special needs. After they were born and diagnosed I learned that it is not that difficult and the rewards FAR outweigh the hardships. In fact, other than the occasional ignorance of people there have been no hardships. My sons have changed who I am to the very core of my being. Because of this it is my new wish to change the world.

Back to Baby Doe- I posted the story to my FaceBook wall and it began spreading as others in the Ds community caught wind of the story and posted it on their walls and emailed the story as well. Baby Doe appeared in blog posts, letters to the Governor, appeals to the press, the hospital B.O.D., and prayers throughout the world. This tiny little person went from not having a family to having THOUSANDS of people praying for him and lining up to be his advocate. WE became his family. Together we became ONE for Baby Doe.

We called, emailed, blogged, prayed, cried, hoped, prayed, strategized and repeated until we finally received word that the DNR was lifted.

Praise be to God! We fought and we took a stand and now, this little man who is more loved than he knows has what we all wanted for him- a chance.

Let this be a lesson- You can make a difference if you care and if you make your voice heard. You CAN change the world.

"So when you feel like hope is gone,
Look inside you and be strong,
And you'll finally see the truth that a hero lies in you."

Keep praying for Baby Doe- he is still a sick little man.

New Directions

I have been neglecting this blog! I have good reason- actually two of them! Casey and Connor are coming up on the 9 month anniversary of their arrivals into the world! I can not believe my tiny little boys are now so big! It seems like 10 minutes ago they were born and were small enough that I could comfortably (though nervously) hold them both with room to spare. Now, my little men have mastered holding their own bottles, rolling all over the place and sleeping through the night. They are progressing faster and better than I had hoped. Both boys are able to drink- though sometimes rather messily- from cups without lids. They use both their little hands and bring their glasses to their lips, take what they want, swallow and repeat. It's awesome! They are starting to get the hang of spoons though they both like to chew on them more than to use them as a means to transport food to their mouths.

As far as gross motor skills are concerned- they are making awesome progress toward sitting up. Actually, Casey made an attempt- his first- to sit up from a laying position. He managed to get his shoulders up. Really impressive! I couldn't be more proud of them if I tried!

Overall, life is fun and great and I live for each new thing they learn. Both of my miracle men are chattering away and I love to hear their little voices. It's amazing!

Well, that's really all I have time for now. I just wanted to post a really upbeat and positive post because I am learning more and more that life with these guys is all about happiness. They bring more joy into my life than I would have thought possible. Life is sweet.

Thanks to all my followers for reading. I am up to a whopping 30 now! That's kinda cool!

Love,
Meghan

There's this word...

Retard.

6 letters.

Of all the words in the English language why should that one be the one that hurts the most? There are other words that are hurtful. Fag. Nigger. Dyke. Towel head. I detest all of these words. I don't use them- well, other than in this post. They are all words that make those that say them sound ignorant and cruel and yet they don't inspire the same reaction in me as the word retard.

And I can say very honestly- though not proudly that of ALL the aforementioned words COMBINED it is the one I have used the most often. I used it as an insult. I used it as an adjective and I used it as just a casual reference to something that was a little off. I felt okay using that word since I would NEVER have used it to describe someone who actually had mental retardation. For "those people" I used more sensitive phrases like "mentally challenged" or "slow". I was an asshole.

I also feel like a GIANT hypocrite!

Ever since Casey and Connor were born people have told me that I am such an amazing mom- I'm not bragging at all just stating what people have told me. If you've read my blog before you know I disagree. I am a proud mother. I am a loving mother. I am the best mother I know how to be.

I feel confident in my mothering skills so far.

I am still learning to be an advocate for my sons.

I have stated that I have used the word retard many times in my life. I have NO WAY to state how much guilt I have because of this. Like the heart in Edgar Allen Poe's story I hear this over and over again in my head. It's like a dripping faucet. I hear it all the time no matter what I do to try and stop it- it repeats. Retard. Retard. Retard. I KNOW I am punishing myself.

I deserve to be punished.

What gave me the right to use such a disgusting word? And what's worse I used it with ZERO regard to how it would or could make someone feel. I have always prided myself on being the best person I can be- and sometimes I fall rather short. I was so ignorant. I was not aware that one word of only 6 letters could cut someone all the way to their very core. And yet, just because I was ignorant doesn't change the fact that words DO hurt.

There are some people whom I feel VERY close to that STILL use this word and then try to justify it by saying they were only joking and that they didn't use it toward anyone. It kills me a little when they do this and then try to explain it away. I have been told "The babies aren't retarded." (Doesn't make it better.) It was made to be a big joke when we were on a recent family outing to Cedar Point. I was hurt so much by this that I have been thinking about it since June 24th.

I want so badly to find the right way to explain to them WHY this word is hurtful but I don't know how to do it. I have thought of posing the question to them like this- "When Casey and Connor are old enough to know what that means will you just tell them it's a joke when someone means it as an insult?" "Will you tell them to shrug it off when they are crying because some ignorant jerk called them a retard?"

Even as I write about some hypothetical situation where someone insults my sons I am crying. It causes me so much pain to think of anyone calling them this ugly word. But it happens. Hell, it HAS happened. And it killed me then and it still destroys me now.

I wish that everyone knew how bad that word is- it's not funny. It's not a joke. I hate that we live in a society that finds it acceptable and amusing to use hateful speech. I HATE that I was among those that threw that word around like it was nothing at all.

I am sorry.

I am sorry to Casey. I am sorry to Connor. I am sorry to all the people who ever heard me use that word. I am sorry that there are so many that STILL think it is acceptable. Until people KNOW that the word retard is not acceptable for a laugh it will STILL be considered acceptable. I need to do my part to make the change necessary to make it UNacceptable. Starting now if someone uses this word in front of me I will correct them. I ask each of the people who read this to do the same. Quit laughing at the jokes and they won't be as funny anymore to those that tell them.

I am sorry that it took me having my perfect, amazing, beautiful, angelic children to learn such a big lesson. I will do my best to teach others what I have learned.

Someday I hope to be the best advocate I know how to be.

I will spend the remainder of my life atoning and raising awareness that this is NOT okay.

If I am successful maybe when I die the word will quit repeating in my head over and over.

And over

and over agin...

Faith and Motherhood

I recently became a member of the church my grandparents and my mother belong to. I used to go there on occasion when I was younger but got away from it for several reasons after I went away to college. After I had the boys my Granny and my mom requested prayers for me and my little men every Sunday and the congregation would ask for regular updates on our guys and their progress. They truly seemed to care about the well-being of our little miracle babies. Knowing people who you don't even know are rooting for you does something good for your soul.

I took the babies to church on Easter Sunday and there was such a HUGE welcoming to all of us that I HAD to become a member of the church because I always want my boys to have the Christian upbringing I had and have that same moral compass that has led me in my life. The other important thing for me is that they always know that God loves them and made them perfect and that God doesn't make mistakes!

Recently, some members of our congregation participated in a mission trip out of state at a group home for people with developmental disabilities and brain injuries. They spoke of the residents that they met with nothing but love in their voices as they stood before the church reporting on their trip. One woman's story in particular had both my mom and me in tears. She told of how she used to feel uncomfortable around people who are different and that after this trip she realized that we are all the same! What an incredible revelation in her life! She reminded everyone that all people are the same regardless of ability and I don't have the words to express how much that meant to me. I want everyone to know this!

As I was crying while listening to her story I began to think that God knows just what we need even when we don't. It's amazing. Being a mother has done nothing but increase my faith in God.

When we first married I was aware of the fact that my husband didn't want to have children. I knew and accepted that because I love this man more than I can tell you. He is the wind in my sails! Anyway, I knew that Matt didn't want kids but I was not totally convinced I didn't want them- I would have been fine without children but my heart wasn't totally convinced we'd be okay. So I left it to God. When I would say my daily prayers I would thank God for my amazing husband, my wonderful family, my health and my job and I would always finish with this statement- if you feel we should have a baby let us have one. I leave it to you.

I never told Matt about that part of my prayers because it was a private thing. I think now that I KNEW I longed for motherhood but felt so completely blessed with my Matthew that I was willing to do without. God knew what was in my heart and blessed me with the sons I was meant to have. And I am so thrilled that He did. I never knew you could love someone like I love those boys.

Faith is a powerful thing. And faith is the reason why I am not afraid to have another baby despite the strong suggestion of the doctor at the Down Syndrome clinic that we meet with the genetic counselor first. Initially, I felt like I would be irresponsible if I didn't follow her directive. Now, I feel like I would be betraying myself if I did follow it! God will give us the baby we are meant to have. More importantly what can a genetic counselor do other than tell me the odds that we have another baby with DS? I have heard that the Chance of dying from a car accident is 1 in 18,585 but I still get in a car nearly everyday! If it's my time to go it will happen. The point is- no one can predict the future and I have decided to live by one of my favorite and most treasured mottos- Let go and Let God!

As a mother I have to have faith all the time. I have to have faith in the cribs we bought for our sons and have faith that my husband assembled them correctly. I have to have faith that the formulas we buy for the babies are nutritionally sound. I have to have faith that the car seats that we put those little ones in will save them if we got into an accident. I have to have faith that I know what I am doing and that I have the best partner in the world to help me raise these guys. I have faith coming out of my ears! It's a damn good thing, too, because life without faith would be scary and lonely. My life is anything BUT scary and lonely. I have more love in my life than most 10 people combined.

Faith is good. Motherhood without faith would be like night without moon and stars- dark and difficult to navigate.

Goodnight.