It has been a while since I’ve put some thoughts
into words lately.
Blogging was definitely my outlet… my way to
express my thoughts and feelings. And lately all of my feelings have been all bottled inside. And honestly I’ve been so
busy that I havent even had a chance to go over my own feelings in my head. I know I have been struggling with some things
lately, I just havent been able to reflect on them.
Also, life has become so **normal** that a lot of
things just don’t faze me or I’ve learned to deal with/overcome/change… honestly
having a child with Down syndrome just hasn’t been as scary as I thought. And
to be even more truthful, I wasn’t necessarily scared to begin with, I was just
brainwashed by society to be scared… because oh my gosh having a child that is
different is SOOO scary…
It hasn’t been a walk in the park… it does have its challenges but nothing that
cant be overcome. Or at least I like to think so.
Well everything is fine and dandy in the Saldana
household for the most part.
We did hit a very difficult time in our lives,
but we are overcoming it.
The girls are doing great and they are about to
become extremely busy with a (dance) drill team for a local park football team.
I am already kicking myself for signing them up. Besides being very costly, all
of the game times are on the weekends and I am very busy on the weekends! But I’ll
make it happen somehow.
Ethan, well he will be 3 late August.
My baby boy. It is all still so very surreal.
I still love him more and more each day. My heart
still skips a beat, every single morning when I see him. Through those dreamy
sleepy eyes that he tries so hard to keep open. And yes, most of these mornings
lately have been started off in my bed, because we have done the unthinkable,
the #1 NO-NO I said I would never do…. : to let him sleep with us.
It starts off with us letting him fall asleep in
our bed, me taking him to his bed once he is out and somewhere in the middle of
the night, Ethan either quietly finds his way back to our bed or he very loudly
calls out for his “dad”… and as if he was lost in the woods, there we go,
eagerly jumping out of the bed and running to his rescue.
He makes every morning especially hard to wake up
and get out of bed. I want nothing more than to just snuggle next to him and
take in his scent. I place my cheek against his soft warm cheek, I kiss his
tiny perfect nose, his pouty, even while he sleeps, lips.
I’ll admit it - I cant let him grow up. I love
every second with him, I struggle with the thought of him growing up. I want
him to be my baby, I want him to be small in my arms, small enough to cuddle in
between me and his daddy, small enough so I can carry him on my hip (which I do
a whole lot more than I ever did with the girls at this age)… I want him to
stay just as he is. Just small. I want to chase him around the living room and
hear his laughter, I want to laugh at him as he climbs on his toy trucks and
tries to ride them. Just the way he is.
I know I cant keep him small forever. I know he is
growing up and will continue. I know.
Aside from becoming rather manipulative, his speech
is still at stop. Not really going anywhere.
A few months back it really looked like it was
going to go somewhere. He was repeating back words, almost perfectly. From “pancakes”
to “I love you”. Then he got sick one weekend and he regressed. He is still
attempting the words but not with much enthusiasm or clarity.
He was wearing his Spongebob swim trunks yesterday
and he did say “bopbop”.
I really do not know what to think. A huge part
of me wants to say that it is his hearing. I don’t believe he is hearing
perfectly clear and nor can he hear himself. Many times it looks as if he has
the word, you can see it in his eyes, but he holds it in. Almost as if he is
scared to pronounce the word wrong so instead he stays quiet and just smiles at
me.
An ABR test has been suggested by many.
His eating has also not improved. He still has
the same food items: pancakes, eggs, ramen noodles. Snacks on crackers,
oranges, berries, cereal. Also tolerates donuts, yogurt, ice cream and peanut
butter.
His school referred us to a Feeding Therapy place
(with behavioral approach, because at
this point it seems to be more about his behavior and what he wants to do) but I
just cannot make it work in our schedule. And it is something that we need to
be consistent with …and well… I am just going to say, to be nice, that is just
not going to work.
And that is a whole other story on its own. A battle I fight
daily within myself…
And another big issue I am dealing with recently is
his behavior. That is another post on its own. I promise to write about that
soon. I really struggle with my feelings when it comes to his behavior.
Some of you might have seen some of these pics already,,... but for the rest of the world - this is my Ethan!
The beautiful Texas Hill Country.
-let's see if I can make blogging a habit again!
Erika
