Like Clapton said, "If I could change the world..."

So, here's a story you won't hear on the 6 o'clock news: I took Cooper to the grocery store the other day. That's all. Pretty anticlimactic, huh? Well, apparently some random lady is really proud of me for taking him "out in public" as she said. Let me start at the beginning.

I'm used to people coming up and saying hello to Cooper while we shop. Babies get attention, and I don't mean to brag (okay, yes, I do), but my kid is pretty darn cute! We had made it around to the meat department, and I was in deep thought wondering why pork chops seem to always come in an odd number. I mean, really, why 7 pork chops? 8 makes so much more sense! Anyway, a lady interrupted my pork contemplation by exclaiming, "Oh, he's so sweet!"

I turned and smiled and thanked her. She kept saying, "He's such a blessing, you know." I thanked her again, and told her that he definitely was. She kept acting like there was more she wanted to say, and finally said, "I have a special boy. They told me I'd never bring him home from the hospital, but he's 15 now."

"That's wonderful!" I replied. She still kept looking at Cooper as he waved and played patty cake. She told me about her son and how he had been oxygen deprived as an infant, which led to the issues. Finally she walked away. I moved on to the chicken. A few seconds later, she was back.

"Don't take this the wrong way," she said, "but does he have Down syndrome?" I nonchalantly told her yes, as it really doesn't bother me when people ask. There's only been one other time someone noticed and asked in a store, and they happened to have a child with Ds as well. "Well, he's definitely a blessing." She repeated, adding that old staple of, "Those kids have the biggest hearts." By this time I was ready to finish my grocery shopping, but I was still trying to be polite. When she told me I had a hard road ahead of me, and not to blame myself, I was beginning to lose my patience, but still maintained my polite composure as I knew she wasn't trying to be mean. The real kicker, though? The reason for this blog post? It was this little gem:

"I'm so proud of you for bringing him out like this!" she said with a patronizing smile.

It took some work to keep my jaw from dropping. I stammered and tried to think of how to respond. "Um, no...I show him off every chance I get. I'm very proud of him. He's the light of my life." I replied. With that she teared up, mumbled something about crying, and left me standing in the middle of the aisle, bewildered. It took me a moment to get my bearings about me and continue shopping. To borrow a line from my best friend, I was thinking, "Is this real life? Did that really just happen?"

A little boy!

Proud of me for bringing him out? As opposed to what, leaving him in his cellar at home? Are we in the early 20th century, when institutionalizing kids with Ds was the norm?Cooper was sitting up in the shopping cart, waving to people and playing patty cake. How is that any more difficult than taking a "typical" child shopping?
You know, that hardest part of being a special needs mom (gah, I hate titles), is not being Cooper's mom. It's not therapy appointments or doctor visits or developmental delays. Loving my child is the easiest thing I've ever done. The hard part is other people. The attitudes and stereotypes and comments, both well meaning and otherwise. I wish for a different world for my boy. I wish I could make other people see him how I see him. He is smart and funny. Inquisitive and nosy. Stubborn and a little mean at times. He has been walking for about two months or so now, and definitely knows the sign for "eat" and uses it often! He is a little boy. Not a syndrome, not just sweet...a little boy, with so many different aspects in that big personality. Down syndrome is what he has; not what he is.

In other, more positive news, we went on our first family vacation this month. It was a lot of fun! Coop did really well. =) Here are some pics from vacation:

Beautiful scenery

Not too impressed!

On our way there!

Trying to eat sand.

Shark!

Debbie Downer...

We're all basically good people, right? I look at my baby,  and I think, "God, I hope so." I get so scared when I think of the future. When I think of how others might view him, or worse, how they might treat him. He's a baby right now, and who doesn't like babies? But, what about when he's an adolescent, or a young man, or even an old man? Will people see him for the person he is, or will he be "that guy with Down syndrome/the Down's guy/etc.? Just insert worn platitude about how people with "Down's" are so sweet, special, cute, ______, fill in the blank. I always say that there are two things regarding Down syndrome that truly bother me. They both involve the future. Number one is the thought that people will not accept Cooper for the person he is, that they will not take the time to actually know him. That one, while it hurts from the viewpoint of a momma who wants her child to be accepted, doesn't pain my heart like number two. My biggest, worst fear is a double edged sword. I am afraid that Cooper will die before me. Life expectancy for persons with Down syndrome currently averages about 60 years old. This means that it is a possibility. The other side to that coin is that I'm afraid I'll die first and he will be left alone. What a miserable conundrum. I can't think of it too often. It is simply more than I can bear.
I can't really do much at present time to find a solution for that, but I can try to address issue number one. Can I ask for you help? Will you attempt to look past the differences of those around you and see the person? Will you look beyond stereotypes and outdated thought trajectories to gain a broader perspective? To help get you started, here are some current things about Cooper and his ever expanding personality:
-He despises having his nose or face wiped and fights vehemently against either.
-He terrorizes our dogs and his reign of terror only grows as he becomes more and more mobile.
-He doesn't care about the word "No." In fact, he smiles when you tell him no and proceeds!
-He loves to pat. He will put his little arms around your neck and pat you on the back. Cutest thing!
-He is quickly becoming more of a toddler and getting into everything.
-At present time, he is very much a momma's boy (which of course I love!).
-He must have whatever is on our plates. Not one tooth yet at 14 months, but brother can put the food away!
-He is brave, strong, stubborn, and growing more independent all the time.

So, please know that he is not a "Down's baby" or just "sweet." He's a multi-faceted human being, just like any other person. He has likes and dislikes, gets his feelings hurt, and has the capacity to learn and grow and be fulfilled. Did you know that there was a time when people like Cooper weren't allowed to go to public school. They were institutionalized in what were often deplorable conditions. It was preferred that they were not seen or heard in many cases. The strides that have been made are encouraging, but there's still a ways to go. A wise person once said, "Be the change you wish to see in the world."

Some random pics (just because he's so darn cute):

Time flies when...

I'm having a hard time, people. I didn't have a hard time when my baby was placed in his crib in his own room as opposed to ours. I didn't have a hard time planning his first birthday party or on the actual day of.

The kid is one!

I've sort of bumbled along, enjoying him and not thinking too much about the passage of time. It's this thing where you look at your child and you see a baby, because they're your baby. And then one day you see someone with a younger child and you say, "Oh my gosh! When did my baby get so big?" And all of a sudden your baby doesn't seem like as much of a baby anymore and a dull ache sets in with this startling realization. 

Where did it go? How did this happen?

That's where I'm at. Last night I was looking through some older pictures on my phone and I came across one (or 50, but who's counting?) from when Cooper was about 6 months old. As it hit me that he is now over 13 months old, sadness also hit. He is beginning to look more like a little boy every day. He's growing taller and observing more, and getting into anything and everything he isn't supposed to by way of his funny little inchworm crawl.

Big boy haircut and big boy toys!

A year, gone just like that. His  babyhood is slipping through my fingers like fine, dry sand and I'm clinging tightly, but to no avail. My heart aches and I want to cry. I want to wallow in self pity and bemoan the unfairness of it, but that would be silly. This is life and this is what happens. Children grow up, time passes swiftly and all we can do is try to be present each and every day.

I realized how quickly life was passing even before Cooper was born. I used to have days when I'd feel this suffocating anxiety thinking about not having enough time with B. But this? This is time moving at warp speed. I feel like I'm going to turn around and be dropping him off at school. It's almost too much to bear. It really does make me feel the most incredible sense of sorrow. To love someone the way I love these two guys of mine...its madness. It is to be vulnerable and it is painful. But it is also rich and rewarding, and is the very essence that makes life worth living. With that said, right now will have to be enough. I will try to remember the details. To remember what chubby little arms feel like around my neck, the rhythmic sound of his sleepy breathing, the way he reaches for me when he sees me no matter who is holding him, and the sweet sound of his giggle when daddy is tickling him. Yes, I promise myself I'll remember these things. After all,  I've waited my whole life for them.

The elusive date night

You know, it's funny the things you remember. For instance, at my baby shower we did advice cards where some of the experienced parents (I won't dare say older!) offered their sage advice to us greenhorns. One of the ones that stuck out the most was, "Remember you have a husband as well as a baby, don't neglect him." Well, that and the one that my best friend's mom wrote said something like, "Don't hold Cooper all of the time or he will grow up to be spoiled rotten just like TLJ (aforementioned best friend)." Anyway, I remember chuckling when I read the husband advice. I mean, how could I forget I had a husband? Who else was going to help with dirty diapers? I kid, but really, how could I forget the love of my life? Well friends, one year in and I get it. I've been so incredibly busy being a momma that I've very often forgotten to be a wife over the last year.

Wise words, indeed

This funny thing happens when you meet your baby. This intense, overwhelming love rushes in and all of a sudden you couldn't care less if there were bombs going off all around you. You just can't get enough of this amazing little person. It is a love like you've never known, and everything you've felt up to that point sort of pales in comparison. Of course, this is all augmented by postpartum hormones, and in my case by the pain of leaving the hospital without your baby in your arms. I didn't understand before and in fairness, you really can't until it happens. Anyway, in the time since, that crazy, consuming love has only grown. I often feel so guilty about leaving Cooper for 13-14 hours a day when I work (only 3 days per week, but still!), that I don't want to leave him when I don't absolutely have to. The thing is, it is crucial that you spend time with your other half! I'm the queen of excuses as to why not to leave my baby and last night was no different. B suggested a short impromptu road trip to exchange a gift we'd bought for someone.
"I don't know...he had a bit of a fever yesterday, and I think his tummy is still bothering him from the switch to whole milk..."
"He's been fine today, let's go," said husband. He's so matter of fact about it. Mommy guilt really is limited to mommies.
So, we dropped Cooper off with a relative and headed up the interstate. On the way up we talked, mostly about  Coop, but still. We talked about things we were scared of, about the future, about having more kids...we just talked, and it felt so good. We did some shopping and walked hand in hand. We went to Olive Garden and ate. I tried some free wine samples. On the way home we listened to music that we used to listen to when we first started dating 8 years ago. We sang along (in some instances, rapped along) and laughed at stuff that no one else would find funny. And on that drive home, I felt light and peaceful and in contrast to the usual, I felt younger than my 27 years. I felt like a wife, and a happy one at that. It was so nice that I thought about really making a date of it and giving him a goodnight kiss in the car and saying, "We should do this again sometime!" Because we really should. Even the best of relationships need to be nurtured.

Early Christmas present

The cherry on top was picking up our little guy on the way home and getting to snuggle him as I put him to bed. I feel so blessed to be a mommy and a wife, and I feel so in love with the wonderful man that I'm spending this life with. As Aerosmith once said, "We're partners in crime, yeah, you've got that certain something."

The most perfect ending to a most perfect evening

Reflections and thoughts...what a difference a year makes!

In two weeks my baby boy will be one year old. This shocks me, makes me happy, makes me sad...it is safe to say that it brings forth a myriad of emotions. I think back on the past year and a half (my pregnancy and Cooper's life thus far), and I am amazed at what a testament to God's plan it is. People often say that Cooper is blessed to have Brandon and I as his parents, but I feel like we are much more blessed to have him. I am saddened that a large part of my pregnancy was shadowed by worry and fear. Fear of what I thought was Cooper and Down syndrome, but fear of the unknown primarily. I am ashamed that I was scared of him, of what having a child like him meant for my life. I look at him now, easily the greatest blessing I could ever hope to know, and I want to weep at the thought that for a split second (when I first received our diagnosis) I wasn't sure I wanted 'that' child. Of course that feeling was fleeting and it was fear talking, but I still feel disheartened by it. My life now is more than I could have hoped for. He is a beautiful child, a sweet child, and my love for him grows exponentially on a daily basis. I hate it though, that my pregnancy with him may be the only pregnancy I ever experience and that some of the joy of that momentous time was stolen. Alas though, the pregnancy is just a part of the journey...really a means to an end. The important thing is he is here now.

I worry everyday that I'm not enough. It's amazing the number of people, even people who barely know me who say, "God gives special children to special people!" I don't feel special. I feel ordinary. I watch too much TV, don't work out enough (or often at all), and as much as I hate to admit it we don't practice the things we learn in therapy nearly enough. Real talk. We haven't really worked much on signing, which is supposed to be great for both typical and special needs children. We play, we watch TV, we eat, we hang out. For the most part, I treat Cooper like a typical child, because he is my typical child...my only child. But in doing this I sometimes wonder, am I failing him? If I worked tirelessly at increasing his muscle tone, signing and educational pursuits, would he have an easier time in the world? If I could afford to be a stay at home mom and devote all of my time to his progress? I guess my point is that although I wholeheartedly love Cooper and I try to show him everyday how much I adore him and am glad to have him in my life, is that enough? When it comes down to it, I think so...I love him unconditionally. Whether he walks at 1&1/2 or 5, whether he is verbal or not, no matter his abilities or the timeline on which he achieves them, I love him and am both proud and grateful that he is my son. This doesn't make me special, or a better parent than anyone else. I can almost guarantee that if I asked any of you if you love your children unconditionally, the answer would be a resounding, "Yes!" That's part of being a parent and in that way, my journey is no different than anyone else's. It doesn't make me special that I accept and love Cooper the way he is. It just makes me his mother. As the saying goes, "There is no way to be a perfect mother, but a million ways to be a good one!"

You know, it's so funny, I thought I would be so much more bothered by Cooper's delays. I thought I'd be sensitive to people asking, "Is he walking yet?" and other such questions. But you know what? I'm not. He's taught me that the world's timeframe doesn't matter and taught me that happiness doesn't come from fulfilling what the world expects of you. Over the last year I've learned that he'll do things when he's good and ready. We can try to help him along, but when he's ready he'll do it. And we celebrate the milestones that much more. He's been sitting up for about 2 months now and I still delight in it. He has great posture and sits so proudly with that little back as straight as an arrow! Not crawling yet, but that boy sure can move when he wants something badly enough (i.e. the dog, or anything he isn't supposed to have!). I can practically see the wheels turning in his little head when he's planning and plotting. He rolls away from his daddy when he's trying to change his diaper and smirks at him when he tells him to stop. He loves splashing in the bathtub and loves eating anything that's on our plates. He's very healthy and although he's small for his age, he's doing great for starting life at 3lbs 10oz. We are delighted to have spent the last year learning from this little person and can't wait for the rest of our lives with him!

What a difference a year makes!

Post originally started back in July! (I know...slacker (when it comes to writing, not mommying ;)!)

So Coop is doing wonderfully! Growing like crazy, and getting cuter by the minute somehow. He had a minor outpatient surgery on his boy parts a few weeks ago, but has healed and is totally back to himself now. Today we had a First Steps meeting. First Steps is Kentucky's early intervention program. They provide services such as Occupational, Physical, and Speech Therapy for children aged birth through 3 years who qualify (Ds is an automatic qualifier). Cooper has been receiving Occupational Therapy twice per month since he was around 3 months old, and has had a couple of consultations with  a Speech Therapist to work on his eating. It sounds very involved, but really it isn't. The therapists come to our home and play with Cooper and show us things we can do to work with him while we play.
The meeting today was somewhat of a 6 month evaluation to see where he was with his progress and to set some new goals for the next 6 months. The goals we set last time were for him to be holding his head up, to be tracking objects with his eyes, and turning toward familiar sounds. The good news? He met all of the goals we set last time. So, we set new goals. Within the next 6 months we want him to be sitting independently, crawling, work toward feeding himself (being able to grab puffs, etc. and put them in his mouth), and hold his own bottle. I have no doubt that in 6 more months he will have met all of these goals too. The not as good news? My almost 8 month old (in 5 short days!) has the motor skill level of a 2-3 months old. I'm not gonna lie...it stings a bit. It's kinda like you made something, and you worked super hard on it. In fact, you're certain it is the best thing you have ever made! Then an expert comes and looks at it and they say, "Well, it's decent...improved from when I last saw it, but it still needs a lot of work." Ouch. Now, don't get me wrong, I understand that the truth is the truth and that it is the job of those involved to honestly evaluate Coop. I'm not angry and I know our therapist loves Cooper and that her evaluation is no reflection on how she feels about him. But, he is the best thing I've ever made. I am certain of that...he's my masterpiece, my perfection, and it is sometimes hard to take to know that in the world's eyes he has a defect, that something is wrong (in the view of society, certainly not this momma). It's a funny thing this 'Special Needs Mom' title. I feel so blessed to be Cooper's mother and I accept him just as he is, with Down syndrome and the delays/challenges it entails, and also with the fantastic and typical things about him. I wouldn't change a chromosome of his DNA or a hair on his adorable little head. I won't lie though...sometimes it smarts a bit when I see a child with typical chromosomes walking and talking and doing so many things that children his age do. And it's confusing...I'm not disappointed in Coop...I'm sad because I want the world for him and it hurts to admit that there are things he may not have or do. But, then I look at that beautiful little face with his bright sunshiny smile and I'm grateful that already he has taught me to slow down and appreciate just being here each day. He'll do things in his own time, not mine or B's, and certainly not the world's. And that's okay...

Don't you cry...[for me, that is]

You talk to me softly, there's something in your eyes...
Don't hang your head in sorrow, and please don't cry.


I've sat and wondered what I should write...when I was thinking about the story of Cooper's diagnosis and birth, it was so easy. It was all pent up inside and I wanted people to know, and so it just spilled forth. Now that its all out, I'm sort of at a loss. My life is blissfully normal. Aside from Occupational Therapy visits every other week, nothing is terribly exciting. Don't get me wrong; I'm glad! Anyway, it has left me with a wicked case of writer's block. But, I'm going to do what I did on this blog in the beginning and write from my heart and let my thoughts flow.

I can't help but think of who I was last year. That girl...she seems like she was from a different lifetime. She was so sad, so despondent...lost and hurting. I think of her often; I feel sorry for her, but at the same time I find her almost comical. "Oh the sorrow! I'm going to have an adorable kid who is insanely well behaved and has slept through the night almost since birth! Woe! Sadness!" Okay, I kid, but I wish I could go back and hug that girl, tell her it would be okay. I'm not sure she would believe me in her state of mind, and besides, she doesn't know what I know. I wish I could explain it better, but it is borderline ridiculous, almost laughable in fact now,  to think that this beautiful little creature, the one who has my whole heart, who I can't imagine trying to live life without, was associated with such sorrow and hurt. My precious source of joy, a source of pain?


This face + sadness? Not so much!

 Okay, be serious ;)

I don't mean to make light of that difficult time, because it was so hard and it was real. It's easy when you're not there to imagine how you'd handle it, and let me tell ya...your imagination always paints a prettier picture than reality produces. You'd be sad too...you'd mourn for that baby you thought was on its way and if you say you wouldn't, then you're aspiring to be Cleopatra sister, 'cause you're the queen of denial!  Of course I know it wasn't really Cooper who brought all that pain. It was a diagnosis, it was fear, it was the unknown. It was finding out that most of what you had thought and pictured was wrong. It was thinking that what society deemed normal and acceptable wasn't part of your equation. I still see it in people's eyes you know. Pity, I mean. They look at Cooper and remark about how cute he is (and dang, is that kid ever cute!), but when they look at me, they feel sorry for me. That poor girl, her baby is sick (except, not really!) and has that syndrome. They feel sorry for me, but at the same time they are relieved it's me and not them. And you know what? That's okay. The difference in me now and that girl from last year is that I've crossed over. I'm on the other side of the diagnosis. I feel like I have a secret that they don't know about. I get to be Cooper's mother. I get to enjoy this magical little being everyday of my life. I get to feel his little snuggly body melt against me when I pick him up out of his bed. I get to inhale his sweet baby scent, and I get to watch his little brow furrow in concentration while he notices or tries something new. I'm not sorrowful, I'm not regretful, I'm not morose or despondent, or any other adjective you can think of that means sad. I'm not bogged down by endless therapy sessions or caring for my ailing child. In fact, he is healthy (Praise God!) and pretty happy to boot. You might be wondering by now: the point to this rambling? Don't feel sorry for me! I am so happy, and no it isn't because I'm in denial. I have this beautiful boy and like I would've told the me from a year ago, "It really is okay..." 


Okay, had to get that out. Next post, I am going to talk more about those [not so] good ol' NICU days ;)