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 ;)

Yo' Momma...

Blah...I'm doing terribly with this whole blogging thing, aren't I? I'm sorry. I have these marvelous intentions, but between work, baby, and trying to keep some semblance of order in our house, those intentions tend to fall by the wayside. I'm sure you understand ;) Anyway...

Mother's Day...some might call it a hallmark holiday. Most know better than to question a day celebrating those who have brought forth new life though, and so they obligingly buy a $3 card and some lilies. I wondered what my first Mother's Day would be like. Would B make me dinner and send me a gorgeous flower arrangement? Would I graciously bask in the glow of that glorious title, Mother? Well, turns out I'm not much of a basker apparently. A continuous torrential downpour plagued the day and B ended up having to work. I woke up grumpy and with a sinus headache. I picked up my sleeping boy that morning, cradled his warm body, kissed his soft forehead, and told myself to just be grateful that I was spending the day with him. The brat inside me? She wanted to pout  and wallow in the pity of B being at work and no flowers, dinner, or gloriousness in sight. I tried to shake my sour mood, but it wasn't going anywhere. I made Coop a bottle, turned on some HGTV, and settled in on the couch to feed little baby, as I often call him. Not long after that, my grandmother called and in that "grandmother" way of hers, talked me right into loading up Cooper and coming to church and then having dinner with the family after. However, by the time I finished the feeding, got myself ready, Cooper ready, the diaper bag ready, and put the car seat base back in my car (of course I had taken it out earlier in the week), there was no hope of making it to church on time. Boy, did I ever miss the extra help B provides! So, I decided that I'd just meet everyone for dinner after they got out of church. Just so you can picture it in your mind, I was drenched from the everlasting monsoon and my curly hair was somehow both wilted and fuzzy at the same time. I drove to Cracker Barrel as it was nearly time for church to be over and waited, only to get a message from my cousin that the dinner had been changed to 3:30pm. So, I took my wilted self back home, feeling even sorrier for myself. As little baby and I made our way back into the house I looked beside the back door and saw these sitting there:

Oh! That darling man! He came through...how foolish of me to think he would let the occasion pass without something to mark it. I found myself smiling in spite of it all. With a little more spring in my step I went on in the house and got ready to feed baby again (man, that kid eats often!). As I was talking to him and he was cooing and gooing at me, he told me "Happy Mother's Day!"...I mean, not in so many words, but more like this:

I imagine that I'll never get tired of that beautiful, precious smile. How could anyone be sad with such pure joy in front of them?! Suddenly, I didn't feel sorry for myself anymore. Later, after a dinner with my loud and boisterous family and then a cozy evening at home with my boys, you know what I did? I found myself basking in the joy that radiated from my family and home. I'm one blessed momma, and years from now when I reflect on my first Mother's Day, I know I will do so happily and without regret. The fact that I have these two guys in my life...wow, now that's something to celebrate<3

Fright[ening] Night!

The weeks leading up to that last fateful doctor's appointment had been filled with happy anticipation but had certainly not been without worry. Cooper's movements, once boisterous and frequent had slowed to soft occasional flutters. My frequent ultrasounds had shown a baby whose growth had dropped off dramatically and with just 6 weeks left in my pregnancy he was barely measuring 3 pounds. On top of these things, my amniotic fluid was measuring low which resulted in me constantly toting around a 1 liter plastic container of ice water in an attempt to hydrate and hopefully replenish my fluid. All of this culminated with that last doctor's appointment on November 30th in which I was sent to the hospital for monitoring and to eventually be scheduled for a cesarian section the next day.
That last night was surreal. When family and friends had left and it was just B and I left in my hospital room, we tried to comprehend the reality of it all. That it was the last time it would be just the two of us. We watched a little TV and made idle conversation that belied our anxiety. In a few short hours, we would be parents! I wanted to take a shower, and B was exhausted from having been up since 5am when his alarm had went off for the workday so he laid down in the reclining chair by my bed and was soon dozing off. I took my shower which was made quite difficult from trying to protect the IV in my left hand. When I was done, I put a clean hospital gown on and put some mousse in my hair and dried it and then rang for the nurse to hook my monitors back up.

A few hours before Cooper was born

At that point, I too was exhausted and in spite of my excitement and anxiousness, I managed to dose off. It was around 2am. It seemed like mere minutes later I was awakened by a nurse moving the monitor around on my stomach. Drowsy and unconcerned I asked, "Oh, did I move and mess up the position of it (the monitor)?"
"I don't know, did you?" she asked in a short, uneasy tone.
"Oh, I'm not sure...I had just fallen asleep, I think..." I replied slowly.
As she applied some more of the cold gel and moved the monitor around on my belly her movements and facial expression became more and more fretful. Finally, she pushed the call button and in a desperate tone said, "Can someone help me get her on the monitor?!"
Within seconds, the overhead lights flipped on and the room filled with people. There must have been 10-12 of them...nurses, doctors, anesthesia, etc. The commotion had woke B up by then and he was sitting straight up in his chair by my bed. His eyes were large and confused. The seconds that passed as they moved the monitor around to no avail felt never ending. And all the while there was no comforting swoosh-swoosh of a heartbeat, of my baby's heartbeat, to be found. Just my own breathing which was growing increasingly louder and the static sound of the monitor being moved around on my abdomen. Someone grabbed an oxygen mask and I put it on with shaking hands. "Roll over on your side, roll over!  Quick! Hurry!" They shouted. My own heart was beating wildly in my chest like it was instead a frightened bird trapped in there. Panic filled my body and clogged my throat and made it difficult to get my breath. Thoughts crowded my mind and I wondered if this was it...the end. If my baby was already gone and I'd never get to hear his cry or cuddle his warm body. I thought of all of the things we had made it through with this pregnancy; the diagnosis, the low fluid, decreased movement, and growth restriction, only to have it all end here. It felt like hours had passed...like time had slowed to a crawl, but finally, finally a heartbeat was detected and that reassuring rhythm once again filled the room. As quickly as all of those people had appeared they were gone, and B and I were left staring at one another in a jumbled mixture of confusion, fear, and relief. I was lying on my right side, still as a statue. The only sounds in the room were Cooper's (beautiful!) heartbeat and the 'ssshhhh' sound of the oxygen mask which I still wore and which was still turned up high. I stayed like that on my side for about 45 minutes until my bladder betrayed me and I called my nurse to help me to the bathroom. I went, and then laid back down minus the oxygen mask. I couldn't fall asleep again. I laid there and listened intently to that heart beat. About an hour or so later the swooshing slowed again. I looked at the screen and saw that Cooper's heart rate had fallen from a steady 118-120 beats per minute to 97, then to 90. The nurses were once again in my room and I was once again turning to my side. Thankfully, his heart quickly returned to normal rate. A doctor came in soon after. She said that even though my c-section was scheduled for 7am, she didn't feel comfortable waiting that long as Cooper's heart rate decelerations were indicating that he needed to be gotten out. It was around 3:45am. She said she had already called anesthesia and as soon as they could get there I would be taken back to be prepped for my c-section. This was more than alright with me as I wasn't sure I could handle anymore frightening episodes like what had occurred.

B preparing for the surgery

Soon after, I was taken to the operating room. An epidural and a spinal were placed and then I was lying on my back looking up at the bright overhead lights. A blue drape was put in place that blocked the view of most of my body and B was brought back in. A nasal cannula was placed in my nose for supplemental oxygen and then the procedure began. After some intense tugging and pressure (but no pain, thankfully!), he was out. At 4:51 am that morning Cooper Benjamin entered the world with a loud angry wail. It was then (and still is) the most beautiful sound I had ever heard in all of my time on this earth. Oh, how he cried! And upon hearing him, a multitude of emotions rained down on me. My heart swelled and relief washed over me and without hardly realizing it I was crying too. He was here, and he was okay! I couldn't stop crying. I'll never forget the sound of that first cry as long as I live. After several minutes, Cooper was cleaned up and B was allowed to hold him and bring him over for me to see. He carefully held him up near my face and with an incredulous tone said, "He's so little!" And then I saw him...his angry little face. His eyes were swollen from the delivery and were tightly shut. His mouth was drawn into a bit of a frown and he was without a doubt the most amazing thing I'd ever seen. He looked so mad!

Minutes after he was born

After I was allowed to see him, he was whisked away to the NICU (due to his prematurity and low birth weight), and I was taken to recovery. I was more tired than I had ever been in my life. I drifted in and out of consciousness as exhaustion overtook me. I slept for a little while and then was taken to my room. Brandon went to the NICU to allow our families to see Cooper. After I woke up I concentrated on trying to move my legs which were still heavy and leaden from the epidural. I had to be able to stand on my own before I was allowed to go see my baby who was on another floor of the hospital. That afternoon I had regained feeling and was able to be taken in a wheelchair to see him.

A few hours after he was born

The first time I ever held my precious boy

That day, I wasn't thinking about a Down syndrome diagnosis. I was thinking about how relieved and blessed I was. I was thinking about how after all of the time I had spent dreaming of this day, dreaming of this little person, he was finally here and he was okay. Four months later, I would be lying if I said I never think of Ds...of course I do. But, when I do, it is in a very matter of fact way because it is a little part of our lives. The fear and pain of our initial diagnosis are just a memory. Every day as he develops his personality, Cooper amazes me more, and every day I continue to be blown away by the fact that just when I think I couldn't possibly love him any more, I do. In spite of the mystery that is the future, I don't worry about the unknown very often. My hopes are simple...I hope that Cooper will always know that he is loved tremendously, that he brings immeasurable joy to me and his daddy, and that no matter what life holds for us, he is my greatest achievement and my greatest dream made reality. I will spend my entire life trying to be deserving of the honor of being his mother<3

What really matters...

So sorry for being away for so long...seems like I have been busy lately! This pretty weather has also made it difficult to sit inside behind a computer. Anyway, I know I still have the story of Cooper's birthday to tell, and I promise I will but I have something else on my mind right now. Those of you who are friends with me on Facebook have seen me post about this multiple times and the truth is, I can't stop thinking about it.
One of the ladies who works at the hospital in my department had a little granddaughter who was born 3 days after Cooper. He was born on a Thursday and little Chloe arrived the following Sunday, also premature and also weighing a little over 3lbs if I remember correctly. She was transferred to the NICU after being born at another hospital because of her prematurity, as well as something that was going on with her skin and a stomach blockage. After many doctors and tests it was determined that this little girl had a rare condition called Epidermolysis Bullosa. It is a genetic condition where among other things, the individual's skin is extremely fragile and even gentle friction can cause painful blisters. Because of this fragility, children with this condition are often referred to as 'butterfly children.' This past Saturday, March 24th, less than 2 weeks before her 4 month birthday Chloe passed away from complications from this illness. I saw photos from her funeral service and graveside service and the sorrow has still not let go of this momma's heart. She looked like a beautiful little porcelain doll. What has stayed with me the most though are the photos from the graveside. Her mother's hand resting on her tiny casket before it was placed in the ground...the grief in her face was tangible. Although I could never begin to know exactly how she feels, my heart ached. I sat on my couch last night and I sobbed just thinking about it all. I looked over at my precious boy sleeping in peacefully on his Boppy pillow, nearly the exact same age as little Chloe and I thought about how stupid I was. When we received Cooper's diagnosis early in my pregnancy I thought the world was crashing down around me. My world ceased to turn for a time, its rotation coming to a screeching halt. I mourned and cried and tried to make sense of it all and I felt like I didn't know the baby I was carrying anymore. They say hindsight is 20/20 and boy is that ever true. I know now that there was no cause for mourning. My baby is here and he is healthy and that is what matters. The past few weeks I have been stressing because Cooper is quickly nearing 4 months and still wasn't tracking objects with his eyes, won't hardly work to hold his head up, and try as I might I couldn't get him to smile for anything. Seeing the pictures of that mother burying her baby was like cold water being dumped over my head; like a big flashing neon sign screaming at me to forget about milestones and Ds and to just love and cherish my baby. Last night, I picked up my sweet boy and I hugged him. I nuzzled his soft downy head and listened to his sleepy rhythmic breathing, and I thanked God for him, and I came to a greater level of awareness and gratitude for him. Please friends, don't take life for granted. Hold not just your babies, but all loved ones close. We are not promised our next breath. To the Jones family who released their baby girl into the waiting arms of heaven--Thank you so much for sharing your beautiful girl with the world. God bless, and peace be with you all<3

PS---> Just when I thought it might never happen, as I was getting ready to feed Cooper yesterday morning and he was staring at my face intently and cooing, "I goo!" this is what I saw:

Not the best picture but I was scrambling for my phone!

And one more just because. He has recently decided he is a side sleeper:

Okay, that's all for now. I pinky promise friends, the birthday post will be the next one!

3/21--A day of celebration

*We interrupt the story in progress for a special occasion. Hope you don't mind ;)*
Today 3/21/12 is World Down Syndrome Day and I can say with complete honesty I am more than proud to celebrate it. If I think back to exactly one year ago today...wow! So much has happened since then. We were gearing up for our first IVF cycle, meeting with a contractor to start a room addition, and didn't have a thought in the world about Down syndrome. This year we have a baby as a result of that cycle (!), the room is done (thank God!), and Ds has rocked our world (but not so much in a bad way). In case you hadn't figured it out, the date 3/21 is significant because Ds most commonly occurs when there are 3 of the 21st chromosome. Anyway, if you had asked me a year ago what my feelings were on the subject, it would have been a short conversation. The truth is, I hadn't thought about it...like, not at all. Never dreamed it would become apart of my daily life, never dreamed I'd be the mother of a child with special needs. Heck, at that point, I wasn't even sure if I'd ever become the mother of any child. But a year later, here he is. When I look at Cooper, I see beauty and innocence. I see soft baby cheeks, big blue eyes, and perfect little lips. When I listen to Cooper, I hear soft regular breathing, the occasional, "I goo!", and often contented sighs while he takes his bottle. When I think about Cooper, I think about how he makes me grin like an idiot with just a look, how he manages to fill my heart so full it just might burst, but mostly how he is everything I could have ever wanted and everything I never even knew I wanted. I think about how already, in a matter of months, he has begun work to make me a better person. A more patient person, a more tolerant person, and a more appreciative person. I look at the world with a new appreciation and overall, a new view. When I see people with disabilities, I no longer pity them; I want to cheer them on! When things seem to be taking just a bit too long, I find patience I didn't have before. And when things aren't going my way, I'm starting to stand back and look at the big picture a little more. Today, I celebrate my beautiful boy and all the other gorgeous kids all over the world who have made me apart of the best club I never knew I wanted to be apart of. Another momma said it best, "I never knew I wanted a child with Ds until I got one!" I hope you will all celebrate with us! Let's work together to blow the lid off of this, to banish the stigma, and crush stereotypes. I certainly can't do it alone...will you help? Will you take the knowledge you gain from 'knowing' my Cooper and pass it along to others? Let them know that there is no room for pity or intolerance. Let them know that it is not just okay...that, in fact, it is beautiful!

Cooper is counting on us!

From Cooper, B, and I --have a wonderful day everyone, and CELEBRATE!!

A routine appointment...

Our diagnosis was confirmed via final results when I was about 15 weeks pregnant. Time began to pass quickly after that point and we soon found ourselves working to prepare Cooper's room and discussing a baby shower venue. Choosing furniture, crib bedding, and paint colors happily took the place of worry about our boy's diagnosis. In between the multitude of appointments to check his heart, bowels, and growth (thankfully no significant issues were found), I tried to immerse myself in the plans and just be happy. I admit though, I was still so scared. And you know what's funny...I wasn't scared so much about the Ds. I was just scared that after this very long journey that I still wouldn't get my baby. It was almost as if my mind couldn't fathom that this was really happening. Regardless, I threw my self into the planning (I am definitely a planner) and decorating. Two of my most favorite things. 

I was pretty much on a first name basis with the staff at the paint counter at Lowes =p

Those little sample jars of paint? Yeah, they pretty much rock!

Cooper's wonderful daddy, hard at work!

Finally done!!

That room was yet another turning point. I couldn't walk past it without stopping and staring. I'd stand in there for the longest time, sunlight streaming in the windows, hands cradling my ever expanding belly, and I would finally allow myself to believe it was real. Soon there would be a little boy in our home using all of those baby things. It turned out it was sooner than I had dreamed. At the time his room was coming together I thought I had nearly three months left until I was to meet my boy but little did I know that it would be less than 8 weeks until I would see the face that would change my entire being.

Shower day!

The guest favors

Maternity Pictures

On November 30th I went to my high risk doctor in Lexington for a routine growth ultrasound. As my pregnancy had progressed I had had several of them as there are often concerns with placenta issues and sometimes growth in Ds pregnancies. It had already been decided that if I made it to 39 weeks gestation, that was it. On this day I was exactly 35 weeks. The night before my appointment I had organized my hospital bag, shaved my legs, and with great difficulty due to my belly, even painted my toes a pretty shade of bright pink. I honestly don’t know exactly what made me do these things. I told myself nothing would come of the appointment and had big plans to do some Christmas shopping afterwards, but somewhere in my subconscious I must have known otherwise.
When I got to my appointment, the ultrasound tech was a new one but very friendly. I knew the drill at this point as I had already been having non-stress tests three times weekly and usually an ultrasound to follow.

One of many non-stress tests during my pregnancy. Oh how he hated the monitor (as evidenced by his kicking at around 14 seconds and again around 1 minute)!

Something was different this time though. The technician was very quiet as she moved the transducer around on my stomach. I wasn't overly alarmed as I had already heard the reassuring swoosh of Cooper's heartbeat but I began to get impatient as the exam table grew more and more uncomfortable! I shifted my weight as my back and hips began to protest, and tried to find relief as I stared at the black/gray/white images on the screen. The silence seemed to grow more pronounced with each rhythmic tic of the clock.  Finally, she gave me an artificial smile as she said, "Excuse me just a moment, I'm going to go get Dr. Hansen." I was left alone in the dimly lit room to ponder what was going on. Only moments later the door opened again and the doctor blithely made small talk as she placed the transducer on my belly. In a matter of seconds she was done and was looking at me very seriously and very intently. "I'm seeing that the blood flow to the baby from the umbilical cord is nearly absent. I'm concerned about his lack of movement as well, so I want you to go to the hospital to be placed on the monitor," she said in a very matter of fact tone.
My eyes widened and my throat suddenly felt very dry as I asked, "Am I having a baby today?"
"You very well may be if he doesn't look any better on the monitor...I want you to go straight to the hospital as soon as you leave here."
As had became my custom with this pregnancy I somehow managed to remain calm. I did my best to wipe the ultrasound gel from my pregnant belly and then adjusted my scarf. I thanked them both and said my goodbyes and heading out into the cold November wind. It was then that the enormity of what I had been told hit me and fear set in. I didn't think about the diagnosis or any of the events of the past several months. I just wanted my baby to be okay. A hard lump clogged my throat and hot tears filled my eyes as I lumbered to my car. I called B but got no answer since he was still at work. I left a message on his voicemail telling him not to worry but that I was heading to the hospital, all the while trying my hardest not to cry. Next I called my grandmother who had offered time and again to come with me to my appointment. In a show of trademark stubborn independence (and a desire for unfettered shopping) I had came alone. As the words spilled out explaining what had occurred I began to cry. By this time I was on my way and the traffic around me was blurred by my tears. Her voice breaking with emotion, she did her best to reassure me from 80 some odd miles away, but not without a good scolding for coming by myself. I was at the University of Kentucky Chandler Medical Center within minutes. I lugged my hospital bag out of the back seat and made my way to the shuttle bus that ran from the parking garage to the entrance. I sat and nervously toyed with the zipper on my bag as I tried again to call B. I was triaged, taken to a bed, and hooked up to the monitor. My dad’s brother worked in Lexington at the time and was by my side in no time as the unofficial family phone chain went to work. I’d honestly never considered myself exceptionally close with my extended family, but he sure was a sight for sore eyes, and from then on I’ve tried to make it a point to express my love and appreciation for my wonderful aunts and uncles a bit more. Jerry has always been funny, a joker, and his jovial nature was just what I needed when I had felt so scared and alone.

After what seemed an eternity, I was able to speak to Brandon and he left work and probably broke several traffic laws to make it to the hospital.

Another ultrasound, an IV, and several doctors later it was decided that considering the growth issues, cord flow issues, and decreased movement, it would be best for all involved to go ahead and take the baby. That’s such a strange phrase, isn’t it? Anyway, just like that, a cesarian section was scheduled for 7am the next morning, Thursday December 1st. I breathed somewhat of a sigh of relief and you would think that was the end of the fear and dramatics, but if you'll recall from my very first post ever, Cooper was born at 4:51am...not 7am like it had been scheduled. We had one very scary night to go.

It's a boy, but....

I have learned so many new terms and concepts since all of this began. For instance, a year ago if you had asked me about FISH results, I'd have assumed it was something  related to a tournament down at the local lake.  In reality, FISH results (FISH is an acronym for something real fancy) are the preliminary results you receive after an amniocentesis or chorionic villus sampling (what we had). They look for just a few chromosomal abnormalities, namely Down syndrome, and some of the other trisomies. The full results come a little later. It felt like we waited an eternity. It was over the 4th of July holiday, which made the wait even longer. My test was done on a Friday and we received 'the call' on the following Wednesday. That time of uncertainty...it was agony. I kept telling myself that 1 in 8 wasn't really that bad, that it was a 7 in 8 chance that my baby didn't have any issues. I’m not sure that’s how statistics actually work, but it made me feel like I was being positive. I reminded myself of these things often and tried, very unsuccessfully, not to think about it all. You know those things in your life where you'll always remember where you were and how you felt when they happened? Well, this pregnancy was chock full of those and this day was one of them for sure. I was sitting on our couch talking to B when my phone rang. I saw the area code and my heart sped up. With a shaky hand and probably a shaky voice, I answered. It was Natasha, the genetic counselor that we had previously met on the day my test was done. She had news. Oddly, I don't recall her exact words but of course I do remember that she said the preliminary results had shown that the baby did have trisomy 21/Down syndrome. Through some miracle I remained calm and agreed as she scheduled us for an appointment with a geneticist the next week. Before we hung up, voice shaking, I asked,

"Is it true that this test is able to tell the gender?"
Natasha: "It does, would you like to know?"
Me: "Yes please."
Natasha: "It is a boy."

At the time this felt so ironic...when B and I had discussed (who am I kidding, when we had dreamed, hoped, planned, imagined, etc.!) our baby...we had always hoped for a little boy. I pictured him looking a lot like B's baby pictures with chubby cheeks and white blonde hair but maybe with my blue eyes. I thought of how his eyes would crinkle up like B's when he smiled. How he would be a momma's boy and I'd teach him to love to read like I do. So how ironic that we were getting what we'd always wanted, a little boy, but unlike the little boy of my hopes and dreams, he had Down syndrome. I hung up the phone and looked at B's expectant face. My voice cracking and sounding high pitched and unnatural even to my own ears I said, "Well, it's a boy..." with my voice failing me and trailing off. Somehow I found it again and finished, "...and he has Down syndrome." And with that, once again for the second time in as many weeks we were in our living room sobbing. The sorrow that enveloped us was deep and consuming. We cried and we agonized and we talked about how unfair it was. How unfair that we had waited so long for this baby, that we had undergone treatments, that we tried to work hard and do things right, and this had happened to us. I hope you can find it in yourself not to judge us. I wish I could explain it better. Of course looking back now, it seems borderline silly...at the time it was incredibly real though. We were acting like someone had died...and in a way, they had. The dream, the idea of the baby we thought we were having had died and we weren't sure about this baby we had just found out about. That grief...it is very real. Of course hindsight is 20/20 and I realize now that it was Cooper all along. The only thing that died was our idea of him. At the time I couldn't see that though. For days I cried at the drop of a hat. When I went to work I tried to put on a brave face but I thought about it constantly. The only way I can describe it is darkness...it engulfed me and it was sucking the life out of me. I felt physical pain. I felt disconnected with my baby, like there was a stranger in my womb. I forgot to take my prenatal vitamins when prior to the diagnosis I had never missed one. I wondered if this was a punishment of sorts, although for what I didn’t know. Crazy, irrational thoughts flitted through my mind. It never stopped. This lasted for nearly a week and then one day...an epiphany! I had to go into 'Me' mode and start reading. That's what I do, what I've always done. When things go awry I try to learn as much as I can about anything and everything. It's like a survival mechanism. And so, I sat down on the couch with my laptop and I started digging. One of the first things I found was Kelle Hampton's blog which was filled with beautiful, ethereal pictures of her daughters (one of whom has Down syndrome). I found the 'Down syndrome' and 'Down syndrome pregnancy' boards on Babycenter.com and they were filled with stories and discussion from moms of kids with Ds as well as many adorable pictures. Seeing all of those gorgeous kids did something. It began to chip away at the darkness that had surrounded me. The smiling faces were like a salve on my wounded spirit. Prior to this, my notions about Ds were few and it certainly wasn't a club I wanted to be apart of. These brave mommas with their beautiful kids were doing all they could to change those types of opinions. It was the beginning of a turning point.

As I said previously, there are many things I will never forget. Another is the reaction of my closest friend. Her knowledge of Ds was pretty limited as well, but she accepted Cooper from day one. When I explained to her that Cooper would probably do some things later such as hold up his head, sit up, and walk, she said, "That's okay, so our baby will be a baby longer?" On our first outing after the diagnosis, she was the same enthusiastic person she had been before. No pity, no 'sorry'...in fact, she was the opposite entirely. She said, "We have to go shopping! I'm dying to buy some cute clothes for this baby!" That was one more step toward me being okay with everything. As we 'oohed and ahhhed' over adorable baby boy clothes I began to get excited about my pregnancy again.

The first outfits bought for Cooper courtesy of my BFF

 Indeed she does!

I'm pretty sure she had no idea that her 'non-reaction' to our news was exactly what I needed. I am and always will be forever grateful for that. So, the fog lifted and I started buying things; we window shopped for furniture for his room, and we picked out a middle name for our Cooper. We resolved to be positive from there on out. We shared the news with more friends and family saying, "We have news about the baby. First of all, it's a boy and his name is Cooper! He has Down syndrome, but we are fine and we are very excited to meet him." I've found in life that how people react to things you tell them is often colored by your tone and outlook on the subject. With this in mind, we set out to show people that it really was okay, we weren't sad anymore. And just like a storm that rolled in, tossed us about and roughed us up and then moved out of town...the darkness was gone and the sunshine that followed was beautiful. I basked in it. About 3 weeks later I felt the first flutters of movement in my tummy and I didn't look back. That's not to say that we weren't still scared. There were the prospects of heart problems, bowel problems, and a myriad of other health concerns associated with Ds but the fact that I was focused on: We were having a baby!!

This is what we were so afraid of?!?

Oooh, another ultrasound!!

Sorry, I've been slacking a bit with the whole blogging thing. I'm going to try to do better though. I feel compelled to tell our story. To tell Cooper's story. I remember how I felt all those months ago and if I can help one person going through the same thing, or help one person to be enlightened about t21 as a whole...it's worth it.

Anyway, on with the story! So, we finally got our big fat positive on a pregnancy test and even saw our little bean on ultrasound. Soon I was released from our fertility specialist and had my first appointment with a regular ol' obstetrician. We got another ultrasound since it was our first appointment. I couldn't believe how much the baby had grown! He looked like a real baby!

Cooper at 10 weeks 6 days pregnant (first OB appt.)

We were over the moon watching him move and seeing that gorgeous little life! Oh and the swoosh of the heartbeat- bliss! 

After our ultrasound, the doctor talked to us about everything and gave us our due date of January 4, 2012. He also mentioned that there was an area behind baby's neck called the Nuchal Fold that looked to be a bit increased which could signal a condition like Down syndrome. He said it was probably nothing but recommended that we undergo First Trimester Screening just to double check. It was a bit ironic as I’d recently attended a maternity fair at our local hospital and sat in on a class detailing that very screening. First Trimester Screening is an ultrasound to check that space behind the neck among other things and some simple blood work. Please let me say very loudly:

THIS TEST IS SIMPLY A SCREEN. IT CANNOT TELL YOU WHETHER OR NOT YOUR BABY HAS DOWN SYNDROME. IF YOUR SCREEN IS 'POSITIVE', IT SIMPLY MEANS YOU ARE AT INCREASED RISK FOR A CHROMOSOMAL ISSUE SUCH AS DOWN SYNDROME. IN ORDER TO FIND OUT WITH CERTAINTY IF YOUR BABY HAS DOWN SYNDROME (OR OTHER CHROMOSOMAL ABNORMALITY) YOU MUST HAVE A DIAGNOSTIC TEST (SUCH AS AN AMNIOCENTESIS OR CHORIONIC VILLUS SAMPLING). 

Okay, off my soapbox on that one. There is a ton of confusion surrounding that. No one should ever think that their child without a doubt has Down syndrome based on this screening. 

Back to the story-- all I heard out of that recommendation was another chance to see baby on ultrasound! I didn't even hesitate. My best friend went with me and I was super excited for her to see the baby. When we got to the exam room the doctor's tone (a specialist from Lexington) was very ominous. She kept asking me if I understood what this meant and even went so far to say that if things came back not so good that I'd have some decisions to make. I was shaken to say the least but still somewhat naively excited about seeing the baby. It turns out, the nuchal fold was increased. The average is around 1.7mm and my baby's was 2.5mm. I was still not overly concerned as I had read that 3mm or more is what is considered 'worrisome.' I next had the bloodwork. 

Fastforward one week and I had still not received the results of my screening. I called the doctor's office expecting reassurance that everything was fine. The OB coordinator at the office still didn't have my results but promised to contact the lab and call me right back. 

I'll never forget that day and that feeling. It was June and gorgeous outside. We had decided to build on to our tiny starter house to make room for baby, and construction was in full swing with workers hammering away outside. B had went out to speak with the workers and I was in the living room. My phone rang and it was the doctor's office. 

OB coordinator: Tara, I have your results. The screening came back positive.

Me: What does that mean?

OB coordinator: Well, it means you are at increased risk for a chromosomal disorder. The actual breakdown was a 1 in 8 chance for Down syndrome and 1 in 29 for Trisomy 18. Please don't freak out though. I know one mom who has had a positive screening with all 3 of her children and they are all fine! Dr. Frank wants you to come in this afternoon if possible to talk about all of this. 

Me: Okay...we will be there. 

I hung up the phone and felt as though the room was spinning around me. I looked helplessly out the window at the streaming sunshine and vivid green of the trees in our yard. I willed B to come back in the house. I felt like my heart was in my throat. After what seemed like an eternity he came through the front door. The minute he saw my face he stopped. I tried to get the words out but was having difficulty. I finally told him what the doctor's office had said between sobs. We both cried...stood there in our living room and held each other and just cried. There might be something wrong with this baby that we had waited so long for...it was almost more than either of us could bear. When standing outside of a situation, it is easy to say what you'd do, how you'd feel...but when faced with it, it is suddenly much harder. We met with my doctor that afternoon and decided that we had to know for sure. Not because we were going to take any particular action...just so that we would be prepared for whatever we were facing. One choice was a Chorionic Villus Sampling which is where they go in guided by ultrasound either through the belly with a needle or vaginally and take a sample of the placenta. They then look at the DNA makeup of the cells to see if there are any abnormalities. The other option was to wait until I was further along and have an amniocentesis where they stick a needle through the belly and get a sample of the fluid around the baby and look at the DNA that way. We wanted to find out sooner rather than later (we were so scared) and chose a CVS. The procedure was uncomfortable...a little worse than a PAP smear and then we waited for our results. 

Another disclaimer please: the choice the undergo diagnostic testing is a very personal one. There is a small chance of miscarriage (generally 1 in 200 or so). Many people with a positive screening feel like this is too much of a risk and choose to wait it out and just find out at birth. It was our choice to go ahead with the testing and I will talk more later about why this was the correct choice for us but everyone has to come to this decision on their own. 

Okay, baby is awake so I must go for now. The next post will detail our actual diagnosis and the period of time immediately after. Bear with me, please. It is a long story but I feel it is worth telling. 

Infertile Myrtle...

I suppose if I am telling the story of Cooper and how he came to be it would be prudent to start at the very beginning. B and I had tried for a baby for nearly two years and it was really taking its toll on me. It was so bad that I considered deactivating my Facebook multiple times in an time before that was a thing, because I couldn't stand to see the multitude of pregnancy announcements flooding my newsfeed almost daily. I'd have a good cry and then decide I didn't care and I was going to trade my sensible Altima in for a convertible. Then another announcement and another cry. To anyone who has never felt the ache of infertility this probably seems like madness. To those who have, you know exactly what I'm talking about. We tried two intrauterine inseminations with a local OB-GYN with no success and I was more than ready to bring out the big guns. We consulted a fertility specialist, and after reviewing our labs and history, he immediately recommended in Vitro Fertilization. The process was lengthy and more than a little stressful but not quite as bad as I had imagined. I was so scared though...what if this didn't work?! If it didn't, it felt like we might be facing the fact that we may never have a child of our own. 

The process began with me taking birth control (seems very counterproductive, huh!) so that my cycle would be on the schedule the doctor wanted. After what seemed like an eternity, next came the injections. Two per day into my stomach. Not fun obviously, but not the worst either. The medications were to stimulate my body to make more eggs than it typically would. During all of this I was driving an hour each way, three times per week for blood draws to check my hormone levels and ultrasounds to estimate how many eggs I might have. Finally it was time for egg retrieval. We made the hour long trip yet again.  I was put under sedation while the doctor used a syringe to aspirate the eggs from my ovaries. I woke up groggy from the medication but anxiously asking, "How many did we get?" I was so excited when B told me 12! The next day we found out that only 7 of the eggs were mature and then only 3 had fertilized. By in Vitro standards, that is not very many. All the same, we were hopeful. 3 little embryos and 3 chances at a baby. I received a phone call each morning the next two mornings to let me know how my little “embies” were growing. All 3 survived until day 3 when we were placing them into my uterus. We chose to put two back (we were totally okay with twins!) and save our last little guy (or gal, haha) for the future. The transfer was no worse than a pap smear and it was done. I was instructed to go to our local hospital for bloodwork in 11 days to determine if it worked. Of course I couldn't wait that long. I think I waited nearly a week and took a home pregnancy test one morning before work. Incredibly, there were two lines!


Can you see it?!?


After seeing one line for so long ( I should've bought stock in First Response), I couldn't believe it. I felt like a kid on Christmas morning. I hurried to our room to wake Brandon and show him. Considering it was 5am and you had to sorta tilt the test a certain way to really see the line, he didn't quite share my enthusiasm. Several tests and a few days later, we finally began to believe it but we were still incredibly scared.


Obviously, a little obsessed :)

After bloodwork confirmed it, we were headed to Lexington for our first ultrasound. I still marvel that B was able to put up with me for that hour drive. I was so anxious I was miserable! But when we got there and saw that little bean on ultrasound and that tiny little flutter that was the heartbeat...I can't describe that feeling. Pure bliss and magic...but still such fear that this couldn't be real. It was real though! Now going on one year later I look at my beautiful, sweet baby and I am still humbled that he was that tiny little blip on the ultrasound screen.
Around 8 weeks pregnant at our second visit

Yesterday @ just over 11 weeks old

Well...I have to start somewhere

I have toyed with the idea of starting a blog for some time now but I kept talking myself out of it. Would anyone even want to read it? Would I have time to write anything worth reading? But alas, here I am and those fears and worries did not win out. This blog will primarily be devoted to my super cute son, Cooper, and our journey as new parents and as parents of a child with Down syndrome. The title, Where It Begins, comes from a song lyric that says:
"If I ever write the story of my life, don't be surprised if you're where it begins..."
I'm sure many mothers and fathers would share my sentiments regarding my baby. He is beautiful, sweet, and precious and I just don't know what I did before him. Even though I had been on this earth for 26 years and a few days before his December 1, 2011 birth, it is easy to feel like my life truly began that morning at 4:51am. I won't get into everything just yet...I don't want to overwhelm, but soon I plan to write a post for Cooper's birth story, the story of our diagnosis, and of course some things involving the day-to-day. Those of you who know me know that I am never short on words so with that said--much more to come!