Happy 6th Birthday!

Happy birthday beautiful boy! Did you know you were born six years ago this morning? Six years! They say it goes fast, but perhaps it races along even faster than I could have anticipated. Your joy, your smile, your love have become part of my every day and I can't imagine the before very well at all any more! You just are, and you are my light and my sunshine, every, single, day!! I am so thankful and lucky to be your momma.


This year is filled with reflection, because you were born on a Saturday. I remember six years ago, going in on Friday - I was measuring a bit too small and the doctors were worried about you. There was no idea yet, that you had Trisomy 21 (or Down Syndrome as it's more common to call it). And when you surprised me with all of that, I never wavered - you were my son, my baby and I knew without a shadow of a doubt, we would get through everything together. You were my rock and I was determined to be yours!


At 9:32am on that beautiful , sunny (and HOT) Saturday morning, you were born, your tiny cries touching my heart. I will never forget that sound and I loved you so much before I had even seen you.


Nowadays, you run and run and jump and jump and I wonder how you can have so much energy!! You are quick, and intelligent! I watch how you remember so many things and work so hard to say even simple words. I love your determination and your feisty spirit. You love life and it shows in so many ways. You give a 110% whether you are swinging or running or jumping or trying to spit out the word "I-pah, pweeeeese" (Ipad, please). My heart is happy and my life is full with you part of it.


Did you notice the other day? We bought new shoes. Somehow you are already wearing a size 12 shoe!! You are growing so fast! I hope no matter what, you will always give me that million mega watt smile that makes my whole day bright. Thank you, Blake Alan, for being my baby, my son. I love you more than life.

5 Years Old!

Blakey turns five years old today. Five years. It's so much time and hardly any at all. The experiences that fill my heart bespeak of grand amounts of time far greater than five short years. And naturally, this morning, my heart travels back in time with images of that first morning with Blakey. I remember a tiny being, so small, only five pounds and two ounces. He was perfect and he was mine. I remember the shock of him being mine! It seemed so surreal.

Through all the experiences and all the learning times and a surprise diagnosis, this little boy has been there, this being of light and joy. He is the one I lean on and he is the one that guides me forward. I wrote in that very first blog, "a little child shall lead them." And those very words are what ring so true today. He has led me in ways I couldn't have imagined. And not only myself, but Blakey has guided others forward with giggles and smiles and the warmest of hugs.

He senses things, so deeply. I was told at his birth that he would have no range of emotion, no continuum of feeling. He would be narrow and feel mostly happiness and some sadness. He would be incapable of more intricate emotion and understanding. I have found that disproven time and again as he wanders through life. He finds a man at the grocery store, glumly stacking shelves, and Blakey knows that man needs a warm hello. He proceeds to say hello as many times as it takes for that man to turn around and find a smile that changes his day. He notices when the woman behind us seems lost in thought, sad and pensive. He reaches out for her, out of my arms to grab her in a hug and she clings to him for that brief moment burying her head in his tiny neck. 

He finds a statue in the park and signs teacher and stares in wonder at an old man teaching a small child. He notices faces and moods and people and places and his understanding is actually far beyond his age. At this point, we have gone through so many tests that prove Blakey has a low IQ, that Blakey functions below the average, but these stories ring in my heart like tiny silver bells of hope and truth. He is so beautiful and in the ways that true growth matters, he has surpassed those tests and finds ways of living that they can never measure.

 I call him my golden boy, the sunlight spilling onto his hair and creating a halo for his head. He runs on toddler feet still, his coordination still working to grow, but his heart and soul is that of a wise old man and I follow as he leads. His smile is infectious and his giggle contagious. He shows me the tiniest treasures and the innate wonder of our great world. I hope he knows he is my world and I love him more than life. Thank you for choosing me Blakey. And Mr. Blake? Happy birthday!

Blakey Musings...

I watch my Blakey playing with his little stuffies. Two dolls, a small frog and a blue cat with red and blue shoes. I smile softly feeling his innate sense of love and acceptance even in this child play.


Blakey - I haven't written in this blog for so long and so many months and even years have passed on by. But I felt the urge to share a bit of him with you this morning, wanting to give you this picture of a soul that has almost become closer to me than my own in these years that have raced away from his birth. I didn't dream of having a child like most young girls. If I did imagine being pregnant, I felt some fear and terror over it all. But Blakey's spirit must have called to me from across the divide of spirit and body because the summer I turned 33 I could not stop thinking about this little soul I knew I wanted to have. I didn't imagine baby things or nurseries or cribs. I didn't relish the thought of a baby the way perhaps others do. Rather, that hot summer in which I camped and traveled to Texas to see family, I knew that I wanted a child. I wanted a soul that would be close to my heart and perhaps even in those moments I sensed at this spirit that is so present even in these poignant moments of Blakey resting his little doll atop the couch cushion and having a deep conversation with it.

 

His spirit has never altered for me, from those first ultrasounds in which I saw a tiny being kicking and fighting with all his might to stay alive, to the bruises on my ribs from his constant kicking when I was so far pregnant, to these moments now when he looks back impishly on our long walks thru so many wild places. Adventures we call them - so many adventures and always me staring with gentle and loving heart at this blond haloed boy who trots so quickly ahead of me.


He is different then so many other children. He isn't typical. I didn't know until brief moments after his dramatic entry into this world that he was different, an extra chromosome laced thru every cell of his body. And yet, now I think of that chromosome as a filigree of sorts, a grace note or an ornament placed just so to accentuate the main notes and decorations. He is something extra even in his personality and in his carriage. His spirit senses at others in a way that far extends beyond his short years. He will know when someone needs a hug or a brief hi and wave. And I watch him work his magic on people at the grocery store or the library or the park. He is all soul and heart and enigma. He is a magnet personality and draws those that need his extra love in their lives.


Often I watch from what feels like an off stage position. I watch Blakey making his own magic and wielding his own persona with mastery and grace on this grand stage of glorious life. He seems to need so little guidance as he falls into this unique place in life where he reaches out and touches those around him. He is an old soul; of that I am sure. He has been here so many more times than I have and I learn from him in his easy way and generous heart. I watch in fascination and pride. But really it is a pride in being chosen to be his momma and nothing more. I did not shape this lovely spirit that I felt so long before I was pregnant. I did not mold this tiny being - I have created his body inside of mine, yes. And I have given him sustenance and shelter, but he is so much more than those things I could have imparted. And I know that and I am honored in it.


Blakey is kindness. Blakey is love. Blake lives in the present and inspires me to do the same. There is no future worry or past regret. He just is and as such I find myself yearning to model my life after his. He has taught me far more than I could have in reminders to eat his veggies or keep his clothes on (that should make you chuckle) or that he might try better to listen to momma. He is so much more than the tiny things of life and yet he somehow reminds me to value the smallest things. He pretends dandelion seeds are bubbles as he waves those tiny stems. He tells me that flowers are nice as he bends and tries to sniff and afterwards grandly sneezes. And trees are to be kissed and admired. He hugs a lamppost and marvels at its height and he notices a tiny artfully constructed leaf that I might have stepped right over and he picks it up and gracefully hands it to me. There is living magic in everything he tells me. There is wonder in dancing rainbows created by a spinning prism. There are tickles and tiny giggles in a small bug that runs over his hand. There is wonder in old wood fences that separate and shiny rocks that plunk in the deep water and Blakey can stare in curiosity for so long that I begin to wonder at these miraculous things too. 

I watch from these sidelines...Open your arms wide and he will run to them and give you the grandest hug all the while popping his foot behind him and air kissing your cheek. Then he will smile and light up all the space between you both and things will just feel brighter. This magic he spins and this aura he creates.

And so I follow after him always curious for our next adventure. I see short chubby strong legs bounding ahead of me. My most frequent view - the back of Blakey as I run to stay up with him. Head spun in shimmering sunlight, arms pumping at his sides and his entire being radiating strength; he looks back to scream to me in his joy and exuberance. I laugh and try to snap a picture at that moment. I have far fewer pictures of his face then I do of the back of him. It seems he is always moving forward. Sun dappled paths and green grassy carpets...sidewalks that are mysterious paths to the unknown and trees that obscure the possibilities to be discovered. Under and over and in and out...weaving his magic and I feel as tho a trail of shimmering stars follows his shoes and I reach to touch them and maybe capture one in my hand. Stardust and rainbows...this is my little boy with the heart of an old wise soul.

Blake....

I haven't written a blog in quite some time now...in fact I figured I was done with this blog. I didn't feel like I should continue writing about Blake after the first year. Someday he will read this and that worried me a bit. But so many of you have asked for an update and asked how he is doing and I feel I owe it to you all to keep you up on Blake's happenings. Going forward, I don't know how much I will share in this blog and what I will feel comfortable telling you all. But above all, it is important to me to love Blake first and keep his feelings in all oft his at the front of my heart and mind when I write.

On that note, I will let you know that Blake is doing very well. Life is not without its hurdles, but on the whole, Blake is an active, into everything, can't take my eyes off him for a minute toddler! And I am loving every minute of it.

Our initial goal was that Blake would crawl by December. Well, he has surprised his therapists and me by choosing to crawl just a short month after his first birthday. And it hasn't stopped there. He is now pulling up on things and crawling over everything in his path. I am fully convinced he will actually be walking by the time we have our next IFSP. It is exciting and challenging and I am so proud of him. Now on to protect our house and him from anything dangerous!

Blake had a visit at Children's hospital in August. Physically he is doing fantastic and has very little hypotonia or low muscle tone. I have always felt that. He was kicking in that first ultra sound and came out straining to move in every way he could! He is all boy and activity. Our struggles lie in the realm of eating as Blake refuses to make the transition to solid foods. It is hard sometimes, but the doctor says his growth chart is textbook and Blake is beating all the odds physically. So for now, to the chagrin of his therapists and me, he is bottle fed. Heaven help his teeth someday! But we are doing what we have to do to get the calories in that little guy. Actually, I should say "big" guy! He is almost 22 pounds now and in the 25th percentile on a typical growth chart! And still loves to be walked to sleep. I won't complain even when my arm is asleep - I love it and cherish every moment with him.

So here are some pictures and quick update on my little guy. Thanks to all of you who care and ask about us so often. And thanks for loving my sweet little boy. He now has a smile and a giggle that can just melt your heart.

Happy Birthday Mr. Blake!!!

I can't believe I am just getting to this post! But my baby is officially ONE! So hard to believe that first year is over. Blake is 18 and a half pounds now and 27 and a half inches long. He is a little squirming chunk and bundle of love. He lights up and laughs so easily. He laughs at things that he finds unusual and he laughs when other people are laughing. He is happy and constantly "talking" to us, the cat and anyone that will listen. I love his life and joy. I still vividly remember the doctor last year as Blake emitted his first cries, saying, "Happy Birthday, Mr. Blake!" I am so glad this little guy has graced our lives with his beautiful presence.

Blake is 11 months and now? The countdown to the big #ONE has begun!

Well, my little guy is almost a year old! How did that happen?? Time to plan the birthday party! Blake has had an amazing month - things just seemed to click for him. He can push up now and is so close to being able to crawl! I am thrilled and terrified at the same time - there go my showers or getting any house work done whatsoever! But I am happy - so happy. Blake has a couple of words to his credit - Dada and Mama and he is starting to wave bye-bye and clap! He smiles in response so readily. It is so cute to watch him interact with us. He knows when Daddy tells him "I am proud of you, Blake" - Blake's whole face just lights up! It is precious to watch.



Blake had several doctor's appointments over the past month and has been deemed very healthy - no Hirschsprung's disease and his heart seems to be doing well. He had his first visit to Children's hospital because Blake has taken on a new hobby - he likes to pop his knees in and out of joint just for fun! And to drive Momma crazy! O my heavens! What to do with that boy!? The doctor's best advice - IGNORE IT! Which I am trying to do, with difficulty. Dan and I look at each other and mutter "Rice Crispie Time" every time he sets to doing that. The doctor said it isn't harmful but that it probably means Blake will walk a bit later since his joints are some of the loosest on record.


Well, the next time Blake has a birthday, it will be the big one! So amazing how fast this year has been. Blake is such a joy! I hope these pictures give you a little smile. He sure brings me plenty of those.



My little sleeping angel...so sweet.

My little earth angel...

I feel reminiscent tonight - I meant to do more of a recap close to Blake's birthday, but tonight, so many thoughts are going thru my head. I am not always as honest on this blog as I first was 10 months ago. So tonight, I am feeling honest. Don't feel like you have to read all of this, but for me, I started this blog to be a chronicle of my journey with Blake and Down's syndrome. So here it all is in a nutshell. Life has been such an up and down struggle over the past year. All in all, I love Blake to pieces! He couldn't be more perfect to me and I couldn't be more in love with him. He is my world and my joy. But there is the darker side of all this too. The questions and the worries that have flooded my heart and head in the past year have overwhelmed me too many times to count and I have cried a fair share of tears over it all.





When I first knew of Blake's Trisomy diagnosis, I didn't even know what that meant! I looked at that nurse in utter confusion - what the goodness is Trisomy?! "Down's sydrome? me? My child?" I didn't even read those chapters in my pregnancy books. I was in no way prepared for this. I had met one little Down's child about 15 years ago in a church group my parents were a part of. But beyond that, I knew nothing! Nothing...I knew I loved my sweet baby - I was never in doubt of that, but I didn't know what it meant. Was he incapable of anything or everything? Would he need lots of help? What level would his brain function at? Would he ever play soccer, or drive a car? Would he work or get married at some point?




Those first few months and even now, when people tell me what a beautiful baby I have, I find my thoughts wondering, "can they see the Downs? Is it obvious? Are they just being nice?" I find Blake so cute and beautiful but he is mine. Maybe other people see it and are quickly judging. Maybe they are whispering their real thoughts in their minds where I can't hear. Sometimes I look thru his pictures and the almond shaped eyes just jump out at me. Or I am holding his little hand and feel that semi-crease that is a hallmark of the diagnosis. It crosses my mind in some way shape or form every single day.




The months have taught me that he is more typical than not - he laughs when he is tickled. He cracks up at the silly things I do to make him laugh. He cries when he is taken away from a toy he was having fun with. He gets so excited when he sees Daddy! He smiles at a favorite toy and gets the most curious interested look when he sees a new toy. He has the wide range of emotions that anyone typical would have. That was my greatest fear, being a musician, that he wouldn't feel things or experience the world the way I can. I feel so deeply and play my heart and soul into my music. But I was afraid I had been given a child that couldn't comprehend love and fear and caring and hope. But I have already been taught that Blake feels so much and as the months go by, his personality and his laughs and his little sighs complete my heart.




But there are the things that make my heart cringe and worry. Blake is behind in mobility - he isn't even interested in standing. He fights me through every physical therapy session. I get so weary sometimes and just want to give up and let him discover it himself. But I want the best for him and so we persevere - he with his stubborn attitude and me with mine! But his heart is all there! He loves completely and already cares about the people in his life.


I think the other things that have been hard that are difficult for me to share are how many things Blake has to deal with that a typical kid doesn't. I am at once thankful for the therapists we have been provided with free of charge and also angry that I have to make my baby go through physical therapy and work so hard every week. He cries and screams and sometimes I just want to make them all leave and tell him just to find his way at his own pace. I had a week where I cancelled my appointments and Blake and I just took walks, and played with toys and read books and tried to live a normal life! One in which there was no therapy and no talk of Downs. But I know I want what's best for him and so they keep coming. I hate seeing his pain thru the extra doctors appointments - he was at the doctor almost every week this past winter for check-ups, evaluations or shots that other babies don't have to endure. In one particular instance, he needed a blood draw - the nurse stuck his left arm several times trying to find a vein. When she was unsuccessful, she pricked the other arm. And Blake is screaming the entire time while I am starting to tear up and hate this whole process. She then told me we would have to try again in 5 minutes. At that point, I grabbed my baby off the table and told her we would have to try another day. It took me so long to console my Blake and he still remembers that nurse and cries when he sees her. He is smart and it breaks my heart that his life is full of things that he must endure that other babies don't!




I don't want to complain - so many people have it so much harder. Blake didn't need massive surgery this year or tubes put in his ears. He didn't have a horrible time of it when he was first born or have to be placed in the NICU. He was lucky. I know those things - but I can only speak from my own heart and what I feel. And what I feel is that I wish that there was no Down's syndrome for my baby. Not because of how I feel, but because of how I care about him! I dread the day I will tell him he has Down's syndrome! How will I tell him? I think about that a lot! I don't know how to even start that discussion and I fear he will hear it from other children. It breaks my heart that he will know he is different. Will he accept himself? That is what I worry most. I can handle it! I have accepted this struggle on my end - but I can't accept it for him. I don't want him to realize he is different and will always be different even if he wears the right clothes or says the right things.




Well, thank you if you have stuck thru reading this entire blog post tonight. I just wanted to put a more honest moment out there and share what is in my heart. Above it all, I know I have been given a precious gift. His beautiful unearthly blue eyes that seem to glow from inside make me think that the heaven's given me an angel to keep. Maybe he was sent here to help me. I have had some tough stuff to deal with in my life and Blake lifts me up and gives me the biggest heart smile I have every felt! I love him so much.


I just want to give credit to my sweet sister in law for these amazing pics! Thank you so much! http://thalytaswansonphotography.com/