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/