Unfounded worries

I am writing tonight to get something outta my head and hopefully to put the thought to rest- though I am certain that will never actually happen. Tomorrow I am taking C&C to the airfield where my family has been skydiving since I was a mere child myself. I have known the majority of the people there for more than half of my life and I am eager to introduce my sons to them. For all intents and purposes they are an extension of my biological family. So why- knowing that these people love me and my family am I SO nervous to take my sons there?

I think I am really scared that someone will say something stupid or thoughtless and I am gonna have to hate them for it! I find that I judge people now based on how they react to the news of the boys' diagnosis. I also have found it's really important that I tell people that they have DS because I NEED them to know. I need to see how they will treat them. I guess I feel like if I put it out there I am showing that we are proud regardless of their chromosomally enhanced status. There are the people I have met that couldn't care less about it and love them as much as I do. Those people mean the world to me.

There are those that pretend there is nothing wrong at all. While I appreciate those that know and actually BELIEVE there is nothing wrong it's the people who know but feel sorry for us or C&C and act like there is nothing wrong and that bothers me. If you are upset for us it's as if you expect that we are upset for ourselves and nothing could be further from the truth.

And now, I am well aware of a third group of people who I had the unfortunate luck to encounter- though never in person- those that blatantly hate people with disabilities and treat them as a subclass of people or as my high school algebra teacher would say- A second class citizen. Those are the people that terrify me because I have seen the vile things they spew. I would hate to encounter any of these types of people in the real world because I think I would be forced to kill them- plain and simple.

Because of my new measuring stick of people's place in my life I am afraid that the people I have known for a huge part of my life won't measure up. Simply- once again I prove how weak I really am. I hate that particular character flaw in myself.

The only thing that gives me comfort is that we have some wonderful friends who have an absolutely amazing son named Toby. Toby also has DS and he skydives at the same airfield. I see the kindness that is extended to him and it makes me think that maybe my boys will be just fine in the world. Toby is a heck of a guy and I love him for being the bright spot in my life that he is without even realizing it! When I was carrying the boys and was as big as a truck Toby patted my stomach and said "You're cute." No Toby- it's you that's cute. He may never know how much that meant to me that day but I will never forget it because he said it so sweetly and not at all in the annoying way people would say it because they were all too aware of my massive size. Toby reminds me what is good in the world and he is a big reason why I was not upset about our boys for too long. Whoa! Really started rambling there. Back on track- Toby is treated well and I know for a fact that he is adored by all the same people I am nervous to introduce to my new family.

I have to learn to "Let go and let God" because He will make sure I am surrounded by the right people. He gave me boys and I am thankful to Him for such a wonderful gift. I should trust the He also gave me more sense than to fear the world for my boys. Fearing people's reactions does not make me a good advocate for them and I need to just knock it off. Writing it out helps. I am still new at all this mom stuff. I'd imagine all moms worry about their kids. I certainly don't have the monopoly on THAT whole song and dance, right?

Ok, so... I am going to go in the morning and I am going to be the proud and doting mother that I am and I will have FAITH that God is the one who is always looking out for us and I can just enjoy the day with my beautiful baby boys.

And they are really beautiful.

As a P.S. of sorts- We are SO blessed to have such amazing neighbors. They already love our boys and there was never a question about it- they make me really proud to live where we live and I am so happy that I know them.

Patience

It's been a few days since I've written and I find that I have really missed this. I can't believe that my babies are 12 weeks old already! They are getting so strong and every single day they become more aware of their surroundings. They smile on a regular basis now and I am fairly sure there is NOTHING better in this world than the sweet smiles of my angel faced baby boys. Watching them smile does something good for my soul.

I find myself uttering the phrase "I can't wait for them to..." a lot these days. I can't wait until the first time they laugh. I dream about that sound. I can't wait until they are interested in playing with their toys. I can't wait until they reach for me. I can't wait for them to sit up. I think part of that is a new mother's worry that my babies are behind but part of it is that I just can't wait until they are a more active part of our family.

I shouldn't want things to go faster though. Time is already flying by and I know that sooner than I am ready for it they will be off to pre-school. I dread the day that I have to drop them off at school for the first time. Right now I can protect them and nurture them and spoil them. I am great at doing all of the above! I know that no one loves my children more than I do and I can't even think of just letting go- even if it's for just a few hours per day.

As I type this I can hear my little Connor humming. He serenades us through the night and I pray that I will always remember that sound. Like his smiles it does something good for me. I can also hear Casey's rhythmic breathing and I wonder if he loves his brother's song as much as I do. I'll bet he does. It must be the song people hear all day in Heaven.

My sons are my world. There is nothing in this world I wouldn't do for them. I am honored to be their Mother and even though there are times I am impatient for the next developmental milestone so I know they are OK I really do enjoy the way things are now. I know that when they wake in the night to eat there will be a moment when their little tummies are full and they'll snuggle up under my chin and sleep there peacefully until I lay them down again.

And every once in a while they smile in their sleep.

And it does something good for me.

Even when I don't see it- I feel it.

It's those smiles that make me realize that being a mother is what I was born to do and that despite the fact I feel impatient occasionally- I'm happy with right now.

However...

I can't wait...

until they wake up to eat so I can cuddle with them.

An Afterthough

I have had a lot of time to reflect on the previous post I made about the idiots who were so abusive to me about my boys on FaceBook and there a few things I have come to realize.

#1 People who degrade others in such a way have to be very sad and pathetic. It goes without saying that anyone who can degrade INFANTS is lacking something very important- a heart.

#2 Reacting as I did is totally normal and understandable but hardly productive. I have every right to hurt as I did for my sons that night but it solves nothing and it lets those who are cruel win. Instead of feeling sorry for my boys (and let's be honest- myself as well) I will use the ignorance of those people to fuel the fire within me to do great things for my sons.

#3 Unfortunately closed minds do NOT come with closed mouths and the only way to combat these idiots is by educating people and raising awareness about Down Syndrome. It is still my mission in life to ensure my sons are always given a fair shot in life and I REFUSE to let people such as those on FaceBook deter me in any way. I owe more than that to my babies.

#4 There is a reason why God has decided to create chromosomally enhanced people- to bring goodness and innocence into the world to even out the evil and hate that seems to abound.

I thanks those of you that were so supportive and wonderful. You have shown me that people are caring and compassionate- even to total strangers. I am more determined than ever to get the Casey and Connor project up and running!

#8

There are days that I absolutely HATE people. I recently posted something on a DS support group about my babies. I had one guy respond over and over with comments like "kill them" "you are selfish for keeping them" and that "the world is full of these retards." I am heartbroken and sick that there are people like this in the world. I SO want to make a difference but how can you make a difference when there are people like this out there who have nothing better to do than tell a new mother that her children should be killed? I ache for my children. How will they feel when and if they hear something like this? Tonight I am going to just go to bed and cry.

How do you fix these people?

#7

Lucky number 7!

What's the best way to get a mother fired up? Make fun of her offspring. I guarantee it will get a response. I. Am. Fired. Up!!!

I have a purpose in my life now and you will be the first to know about this. I have decided that I will no longer sit idly by while people with disabilities are mocked, made fun of, and written off! I refuse to sit and twiddle my thumbs while people make crude jokes about those with DS. It is not enough to talk to my family and friends and readers of my blog about how great Casey and Connor are- I'm taking this to the top. I am going to spend every free moment I have educating people about how wrong it is to treat people with DS and other disabilities like second class citizens. Friends, I am beginning the Casey and Connor project!

I am going to begin a non-profit organization that gives families like mine a voice. It may take me years to make a tiny dent but I vow to try to make a difference. I want my sons and the sons and daughters of all in the DS community to grow up without ridicule.

My mission statement: My mission with the Casey and Connor project is to give voice to families that deal with disability a way to fight back. I want people who feel weak or helpless to do something about the lack of sensitivity and awareness in regards to disabilities a group to fight back with! I want to empower people to stand up and say "It is NOT OK to make a mockery of our children, family, friends and community members who have a disability." I want to hit these TV shows and Radio shows where it hurts- right in their bottom line. I want to organize families to write letters and boycott the companies that advertise during these shows. There are enough of us out there to make a REAL difference. We need to stand up and tell politicians that using the "R" word or claiming to "Bowl like I am in the Special Olympics" is not acceptable and we need to prove it by voting them out. It is my mission to make a change and to raise awareness. I will do this in the name of Casey and Connor.

If you would like to get involved please send an email to me at meghan_wilkinson10808@yahoo.com. I am in the research phase but I will do this and I need the help of all my friends out there who are as outraged as I am by senseless attacks and rude jokes. They are not funny and they should not be tolerated!

#6

"I'd rather hurt than feel nothing at all..." -from Lady Antebellum- Need you now

I am having a rough time tonight with some things concerning the boys. I am hoping writing them down will help. I want to be the very best mother I am able to be for my sons. It is so important to me that they always know how much they are loved and how much they are capable of doing in their lives. I want to be their biggest fan (and I am!) but I also want to be their strongest advocate as well. Therein lies the problem for me tonight.

I was changing Casey's diaper tonight and getting him ready for his last bottle before I laid him down to HOPEFULLY sleep through the night. I had the TV on in the background when something caught my attention. The new episode of Family Guy was on and Stewie was singing about a girl with Down Syndrome. Immediately I felt myself tense. Should I be pissed? Why are they making a mockery of DS? What is wrong with these people? I am still angry and I want to write an angry letter and boycott the show. I know that won't really change anything but I feel like it's my duty to my children to defend them from these kinds of attacks.

Am I being overly sensitive? The truth of the matter is- as well as I do with the fact that my beautiful babies have DS- it still KILLS me to think of people making fun of them in any way. I KNOW all kids get teased. I got teased, my brothers got teased- it's a part of life. I get that. But I would give anything in this world to make sure that those precious babies of mine never know the pain of an insult. I want to shield them from all harm in life. I want to change the way the world thinks of Down Syndrome because if I do that then maybe my boys will never be seen as anything but the perfect boys I see.

I am so angry about this. But more than being angry I am sad for my sons and for all the other sons and daughters out there that have Down Syndrome. I am literally sobbing right now as I write this. This is one of the times I don't feel strong at all. I feel so weak and small and helpless to make a difference. I am really hurting for my sons and they have no idea what is even going on. The only thing they worry about is if they get fed on time and that they are held at least 20 hours a day.

What do I do? I have so many emotions tonight. I hate when I feel like this though when it comes to my sons I feel like this less and less often. The part that really bugs me is that I can't decide if I feel sorry for them or for myself.

As a parent, you never want to think of your child suffering. I KNOW there are things they will struggle with. I KNOW there are people who will be jerks or write them off. I know all this and I am so DAMNED angry that there is not a frigging thing I can do about it! I hate that I can't protect my babies from the insensitive people in the world. They bring me such joy that I feel that they deserve nothing less in return. I can't keep them from feeling pain and it is killing me.

I have decided that the best way I can advocate for my sons is to treat them the same way I would any other child and to do my best to educate everyone I meet about DS. But how do I do both? If I am determined to treat them as I would any other child then the DS shouldn't be an issue but how do I educate people if I ignore it entirely? I also hate when I don't have all the answers.

The best thing I can do is to pray to God for answers and maybe a little bit of strength to do what I need to do- to teach people that Casey and Connor deserve every opportunity any other child deserves- that ALL people with DS deserve a fair shake in life. I have to be strong for my sons. I am weak and sad tonight and I am going to allow myself to feel this way for a little while longer and then I will move on- I can't dwell on this forever. Sometimes running away from the ugly feelings is too hard and I have to just feel them.

I just never want to fail them.

They stole my heart and I will fight for them until I die.

I am going to stop crying now.

There is work to be done.

#5

I was reading the other day that the national divorce rate is somewhere right around 50%. I read also that that number jumps up to about 80% when there is a child with a disability. It saddens me to think there are so many couples out there that start with excellent intentions and then find they just don't work for whatever reason. It also makes me feel even more blessed that Matthew is my husband.

Matt and I met the summer of 2008 playing volleyball with a mutual friend. I didn't really like him all that much when I first met him but after we spent some time together with the other team members at a street festival, I really began to see some possibility in him! We went to lunch a few days after the festival and I knew right then that I was going to marry him. In fact, I called my mom that day and told her I was going to marry him!

We had been dating for about 2 and a half months when I confessed that I was madly in love with him and would have married him right from the start. He asked me when I could "Get a day off (in my mind the next words were going to be so we can move in together but he actually finished with) so we can get married?" I said let's go now! We went upstairs to his office and researched what we needed to do to get a marriage license and found there is no waiting period in Ohio. Matt went to work that night and I went home.

Throughout the night I texted him and asked if he was serious! He told me he'd pick me up the next morning so we could get our marriage license. He showed up the next morning and it was a dreary, rainy day. As he held the door to the truck open I told him never REALLY proposed and with that he got down (almost) on one knee on the gravel drive in the rain and asked me if I'd marry him. I said yes and got in the truck happy that I finally had a proper proposal.

We got our marriage license and I called off work. I told my boss that we had decided to get married and I'd be in the next day. Well, technically, I told her I'd be in later that morning but it didn't happen.

We went back to Matt's house and found a minister that would come to the house to marry us. Originally, we had planned on not telling anyone but I really needed my mom there so we invited our parents. It was not until later when I realized we didn't have rings for the ceremony. We were short on time and we went to WalMart to get some $40 wedding bands!

Our parents showed up at 5pm and we let them talk and get to know each other for a few minutes (they'd never met!) and then we sprung the news! We told them we had decided to get married. We let that sit for a minute when Matt's mom asked us if we had set a date. We told them that we had and it was in about 40 minutes when the minister was to arrive.

The ceremony was short and beautiful and it is one of the best things I have done in my life- tied with the birth of my children! We have been happily married now for 1 year, 4 months and 4 days. I have never looked back or had a moment where I wasn't absolutely thrilled to be Matt's wife.

He is everything I have ever wanted in a partner. He is kind and generous, soft spoken and really funny! He makes me smile and there is not a day that I don't thank God for him. I am blessed with such a wonderful husband.

My mom will tell you that Matt's true character showed when he called her after Casey & Connor were born. My mom was on her way to Las Vegas to run a half marathon when we found out we were delivering early! She will tell you he said,"HI mom. The boys are here. They are beautiful and perfect. And they think they may have Down Syndrome." He amazed her when the first words out of his mouth about our sons was that they were beautiful and perfect and oh yeah- there's this other thing that doesn't matter.

When we got the confirmation on the Fish test and the Karotype I sobbed uncontrollably. I cried so hard that I thought my head would explode. I had been praying over and over that the early suspicions were wrong. As I sobbed and hurt Matt put his arms around me and said, "Hun, they are perfect."

When I needed him the most- he was there with the life raft that I so needed. He made me realize in that moment what I knew but had temporarily forgotten- that our sons were amazing. They were healthy and perfect! He reminded me that I was their mother and that if I was going to feel sorry for myself then I was doing them a great disservice. He never said more than Hun, they're perfect but there were volumes more spoken when his arms embraced me and lifted me to a safer place. He will always be my hero for that moment and I don't think I have ever told him how much he saved me that day.

I write all of that to express this one little thought- I wish that every mother in that moment of despair when they find out there is something wrong with her child- regardless of what- had a Matthew.

I am crabby a lot these days because I don't sleep enough and because a part of me misses the "us" before we became a family. I miss curling up with him for a long nap or staying up late and not changing diapers. I guess that's probably normal for all new parents. There is a huge shift in your relationship and I suppose it takes time to adjust. I can also understand why couples who were not all that solid in the beginning would fall apart after the birth of a child. When you add in the stress of diagnosis of Down Syndrome or ANY OTHER disability or sickness it's understandable how some couples are ruined. God however, has blessed me with my Matt. He is the most wonderful husband I could ever ask for.

Matt's a funny guy. He has no idea how absolutely wonderful he is and he will disagree with me on this. However, I know how he saved me that day. I also know how much he loves our sons. I watch him with them and I am so glad that they have such a strong father in their lives. They will always feel loved by him. I know how loved I feel when those arms wrap around my shoulders. There is nothing in the world that is better than finding your place of safety.

Mine is in my husbands arms.

I am the luckiest woman alive.

I am confident in the bond that our $40 wedding bands signifies.

That we are strong-We won't be in the 80%.

Take that you awful statistic- you won't get us! Not on my watch!

#4

Today was the first time I have ventured out with both boys by myself. I went to my friend Beth's house to see her and her gorgeous girls. Beth and I met years ago when we were both serving at Joe's Crab Shack. Beth was my trainer. She is an awesome woman and I am proud to be her friend.

Everyone has been writing such amazing things to me about my blogs both on Facebook and also on my page on the Family network on the Upside of Downs website. I always post the blogs I write here on there as well because who better to relate to what I am feeling than families that are experiencing the same things I do.

I am flattered by the kindness and compliments I have gotten. People have been so nice and have told me things like I'm going to change lives with my writing and that I am an inspiration. Those things mean a lot to me but I truly believe that the people who are writing them are a little misguided.

I am just a simple 29 year old mother. I am nobody special- well I hope that's not entirely true where my family is concerned. The point is- if ya'll only knew how wrong you are. I didn't graduate from college. I don't have a job that makes a difference in the world. Before I delivered my guys I was serving at a 16 table Mexican restaurant and doing Merchandising for Kohl's. I make minimum wage and can't afford to donate much to charity. I think of attending church but rarely make it that far. I am opinionated and lately I have been pretty crabby. I keep my house fairly neat but it's never spotless. I am lucky to shower everyday. I read for fun- authors like Nicholas Sparks and Stephen King. I can't remember a word of any true "classic" literature I have read. I have big dreams but lack much ambition for the most part. I hate that I am carrying around WAAAYY too much baby weight and I watch too much TV. My point is- I am NOBODY special.

I have been told that the way I am with my boys is amazing. While we were in the hospital and I was visiting the boys in the special care nursery late one night, one of the nurses told me that I make her so happy that she cries when she thinks of how great I am with the boys. She asked if I'd be willing to share my story with other parents. I said yes but inside my head I couldn't help but think that I was the wrong person for the job.

I love my sons. Unconditionally. But as you know from the letter I wrote to them I had doubts and pain and fear. I am no better than anyone else. In fact, I feel weak sometimes when I think of the fact that it is unlikely that my boys will ever father children and I cry. I cry for the life that I wanted for them and the hopes I had while I was imagining my sons as star quarterbacks or awesome pitchers. I dreamed of them marrying and having children for me to spoil one day. Even before they were born I had their lives planned out. And now, in the wee hours of the morning while I am holding each of my boys in turn- filling their bellies with warm formula (formula!?!see I don't even breast feed!!!) I look at their sweet angel faces and rather than feeling inspirational or special I simply feel- small. I feel like THEY are the special ones. The miracle babies. MY angels.

I read that the odds of having twins who both have DS is 1 in a million births. That doesn't make me feel special. It makes me think why are WE the family that got the 1's in the million? Matthew and I are normal, everyday people. We have nothing over the next guy. Now, don't misunderstand- I am not bemoaning our fate. Not at all. On the contrary- every moment I am near my sons is a moment when I feel truly and profoundly blessed. There are so many things that are SO much worse! I was reading about Duchenne Muscular Dystrophy.This is a form of MD where the boys- who are most often affected- lose the ability to walk in adolescence. They typically die in their teens or in early adulthood. My GOD! Every fiber of my being aches for those parents. I am ill equipped to deal with such tragedy. I couldn't bear to see my sons suffer and eventually die. I hurt for those families. My sons have Down Syndrome. Big. Deal.

I mentioned my friend Beth in the beginning of this long winded mess. She is a hero to me. Her daughter Casey died of cancer when she was very young. I looked at Beth today while we were sitting on the couch at her house and I told her I don't know how she did it. She survived a tragedy I cannot fathom. She remains strong in her faith. She loves her two other children in such a BIG way.

She is the special one.

She inspires me.

She changes lives. She changed me in a way.

And I'd be willing to bet she'd feel the same way I do about those statements- like she is just a normal mother.

#3

I think I am addicted to blogging now! I have been thinking all day what I would write about tonight. Originally I had thought "If I start a blog, I will ONLY write about milestones the boys reach. Big moments." I have learned however, perspective is a funny thing. With Casey and Connor EVERY day is a big moment. Every minute is special and every breath they take is a milestone. I might be biased but I am fairly certain that my children are the actual center of the universe- that all those scientists have been wrong all along. I could spend hours recounting everything that they do- how adorable it is when Casey instinctively reaches out for Connor when they are lying beside each other. I could tell of Connor clinging to my shirt when I go to set him in the bath tub but then looks so thrilled to be in there. My sons are amazing.

I am well aware that there will be delays in their development. I have accepted this and am so ready to help them in any and every way that I can. We will begin working with Occupational Therapists and Physical Therapists fairly soon. Every time I give one of the boys a bottle I am saying "milk" and then doing the sign for it because I want them to be familiar with what I am doing even though they are far from mimicking me or really understanding. Most of the time they just look up at me and stare. I think they think I am weird. They are right.

I hope that C and C will always know how very proud of them I am. I also hope that as they develop and grow and start hitting "real" milestones that I will still think fondly of these early weeks where every thing they do amazes me. I think that I will.

I also think they will always look at me like I am weird. They will always be right.

#2

I spent a long time on the phone with Social Security today. If you've ever called a government office you're probably already nodding your head knowingly. After a few minutes fighting with the automated system I was finally transferred to the extension where I could speak with a live human being. Great! While on hold for the live person the voice recording told me I could have someone call me back and I would not lose my place in the line. Even better! After hanging up, I picked Connor up to give him a bottle and went around doing some one handed straightening in the living room.
About ten minutes later the phone rings and it's Social Security calling me back. I get on the line with a nice sounding woman. I explain to her that I am calling to request an appointment to apply for SSI disability for my sons.
"Sons?" she asks.(emphasis on the plural)
"Yes. I had identical twins and they both have Down Syndrome." I state this matter-of-factly and the words don't sting when I say them. What a difference 9 weeks makes.
"So they both have it?" (at this point the over tired, not so Christian sometimes person comes out and in my mind I think, 'And they say my sons are going to be delayed mentally?')
"That's right. They both have Down Syndrome and I need an appointment to apply for SSI." I'm smiling, hoping she can hear in my voice that I don't completely hate her for her confusion.
"Oh! That's so great! They are so happy! I used to work with kids. Those ones are always so happy!"
I hold my breath. I count to five. She doesn't know any better. I wish she had been here all morning seeing my "always happy" babies as they whined and fussed and just generally hated life. Nothing I did seemed to make them happy. They wanted something but neither they nor I was lucky enough to know what that something might have been.
"So about that appointment..."

The thing that I have learned being a parent to my sons is that generalizations, even seemingly positive ones, can irk a person. I know I was at fault for this before as well. Yes, nearly every person I have ever been blessed enough to encounter with DS was happy at the time of our interactions. But I know now that even though my sons may have an extra chromosome it is not the one that precludes them from having a bad day or a crabby morning. I'm sure one day they will both show me what an actual full blown temper tantrum looks like. Oh, the anticipation. The point is, I wish people realized that just as claiming something general like all Jews are cheap is the same as saying all people with DS are perpetually happy. Admittedly the later is probably more socially acceptable if only because it sounds so positive and upbeat and not racist.

Maybe I am alone in this. Perhaps I shouldn't be annoyed that people want to be thrilled at our luck to have *two* babies with DS. (Wow! God Blessed you!) (He did but for so many reasons and in so many ways) I adore my sons. I cherish them even when I am exhausted and bleary eyed and getting peed on (again)at 3 AM. I know that there is a reason why I was chosen to be their mother but I am not privy to that information as yet. I wonder if other parents of kids with DS get annoyed by such generalizations. Maybe it is less annoying the further out from diagnosis. I'm new at this still, I don't know what to think.

The bottom line is this- I want people to look at Casey and Connor and see them for who they are. Gorgeous boys who will steal your heart just as fast as they will pull your hair! They are babies first and foremost. They are blessings just because they are alive and well. I want people to look past the diagnosis. The only generalization I want in regard to my boys are that the twos are terrible. They are, after all, just little boys.

On a final note, I did finally get an appointment booked and it only took 45 minutes! Well that and 2 500 page worksheets! I love the government! They are always so efficient. (Are lies as bad as generalizations?)