Well, I had a bad day......

Usually I hesitate in writing a post like this, because I don't want anyone to think that I don't love my girl like crazy, because I do.  And I don't want anyone thinking that I walk around all day glum and gloomy, because Kamdyn has Down syndrome, because I don't.  Days like today actually make me realize that I worry little about Down syndrome anymore, because I hardly ever have days like this.  Sure, I think about Down syndrome. We are very involved in our local group.  I'm the activities coordinator.  I go on the Baby Center Down syndrome board.  I read here and there.  But it's all in a positive way. 

Last month, I had a dream that Kamdyn could talk.  It was almost-2-year-old talking, but it was talking.  Last week, I had a dream that she could walk.  Then I wake up, and I realize these things are not true.  But, at the time, they didn't make me sad.  I know that one day, Kamdyn will walk.  And I expect that one day, Kamdyn will hold a conversation with me.  And when I wake up from these types of dreams, and I go into Kamdyn's room and lift her from her bed, and she lays her head on my shoulder and pats her tiny hand on my back, that dream doesn't get a second thought. 

For whatever she can't do at this point, there are as many things that she can.  And at the end of the day, those are things that I remember.  Like the way she instinctively knows to be gentle with babies and carefully pats them on the head.  Or the way she knows to reach out to give someone a hug if they are crying.  She is empathetic.  And there's the way that when she hears everyone around her start to laugh, she busts out with this fake laugh that makes her sound like Woody Woodpecker.  At this young age, I can see that she has a kind heart, and she cares about people.  She is smart.  She is amazing.

This morning, Kamdyn had physical therapy.  Over the last several months, PT has definitely become her least favorite activity.  It's not just her therapist, because she resists any type of PT activity, no matter who attempts it.  She does better for me, but there are even time for me when she decides that she does not want to stand.  She resists standing when she cannot hold on to something right in front of her, and even then, she only wants to stand for every short periods before she cries, because she wants down.  She can cruise but doesn't do it much, because she's not standing for long periods.  And this morning during PT, she basically cried the whole time.  When I asked the therapist what we should do, she said, "Well, we can do whatever you want to do."  So do I push through with the PT, and possibly cause her to hate these activities more?  Or do I back off with PT all together, because she hates it and just wait until she does them on her own.  The fact that she's not nearly walking doesn't so much get to me for the fact that she can't do things other kids her age can do or that she needs to either be in a stroller or being carried for anything we do, which limits the interaction, stimulation, and experience she gets during any given event, or even the fact that I don't know anyone else who has a child who is her age that can't walk.  Writing those things down like this does bring a little pang, but what hurts even worse right now is that this is a reminder that there are certain things in life that will be harder for her.  It will take her longer, and she will have to work harder than anyone else.  That is the thought that causes my eyes to well and a hard pang in my heart.  And even though I know that 5 years down the road, when she is running all over the place, none of this matter, today it hurts.

We continued about our day today, and then at lunch time everyone came into the kitchen with me while I made lunch.  We were out of jelly, so I made peanut butter sandwiches, and I put some nutella on Kamdyn's.  A little calorie boost.  Across the counter was spread everything I needed:  plates, knife, bowls, spoons, a container of yogurt, bread, peanut butter, nutella, a container of peaches.  I made Kamdyn's sandwich first, because sister was ready to eat.  I handed her a bowl of yogurt and a spoon, and she smiled big as she fed herself.  But it didn't take long before she was screaming between every bite.  After a while, she threw the bowl on the floor.  We practiced handing the bowl to Mommy and not throwing, and then I gave her a couple of pieces of her sandwich.  She ate them, but the screaming continued.  I asked her what was the matter, but she can't tell me.  I told her to sign, and she rubbed her hand over her belly, signing "Please."  But "please" what?  I don't know.  I couldn't figure out what she wanted.  There are times when someone will say that it sounds like she said a word, but if I'm honest, I have to admit that I'm not convinced.  One day, Kamdyn was playing with a baby doll with one of her therapists, and the therapist said it sounded like she said "sit" to the baby.  I heard it too, and it did sound a little like it. But as I was writing the last paragraph, Kamdyn was crawling across the floor toward a toy and made the same sound.  Is she really saying "sit"?  Or is "si" just one of the sounds that she is saying right now.  And what does this all mean?  Does it mean anything that she's not really saying anything yet?  Does it mean there is something deeper that is preventing her from putting sounds together to form a word?  A fairly new skill that Kamdyn has figured out is how to shake her head no.  If I say, "Kamdyn, do want to go night-night?" She will shake her head back and forth, giving no doubts that the answer is "NO!"  But she cant' say the word "NO".  Do you know how badly I would love to hear my girl say the word "no"?   I don't care that most mothers hate it when their child learns the word, or that every toddler goes through a phase where all they do is say "no", even if they really mean yes.  Because the fact that they say "no" means that they can say the word "no", and I want that. 

For the most part, I can figure out what Kamdyn wants, and she is pretty good at communicating things, but I want to hear her speak.  And today, it hurts that she can't. 

So what do I do with all of this?  Well, I sit here and type it out and let some tears flow.  I pray for God to help me to have the grace to let go of the things that I cannot control.  Then, I get up from this old, hand-me-down, grey office chair, and I leave it behind.  Instead, I take with me the fact that I have way to much of an amazing life to be bogged down with negativity.  And there are far too many blessings to count to let anything steal away my joy.  Tomorrow is a new day.