Thursday, November 10, 2011

Hard days come and go

Hi friends,
Again, it's been too long.  I'm not a writer so sitting down to write here is something I often overlook.

Yesterday was a hard day.  They come every few months.  Early on, when they came, they hit like a tidal wave and stayed for a while.  Now, they come and go quickly.  But, they do come.

While these days are never about not loving Nate, they are about the extra time/attention/perseverance/money it takes to raise him.  We love Nate deeply, but sometimes it just feels so hard.

We are on the cusp of a new phase in Nate's early intervention.  From zero to three early intervention services come into the home for therapies.  In January, when Nate turns 3, we will move into a classroom setting.  Nate will be in a class with 3 teachers and 8 students with a variety of special needs.  So, what does this mean?  A LOT of hard work is happening right now to try to prepare him.  We generally have 4 appointments each week (right now, 2 in the home, 2 private) and that's both exhausting and expensive. 

Nate is much like Cody was in the major milestones....taking his own sweet time....and then some!  He is just now able to walk across a room unassisted (which is exciting for all of us) - Cody didn't walk until 18 months and if you double the timeline (which they say is an average for kids with DS), Nate's right on track for a Paskins boy.

Our biggest challenge continues to be feeding.  Nate still eats like a 5 month old.  The mainstay of his diet is smoothies (which I fill with all I can think of!) and he'll tolerate very smooth textured spoon feedings.  He does not touch any food.  Each time we seem to take a step forward, he gets sick and then we take a few steps back again.  We've barely made progress in feeding over the past year.  We have just begun working with a new therapist who has some great ideas, so we're hopeful, but it's a slow and stressful road.

I constantly feel like I'm inadequate....I am always wondering if I'm doing enough.  If I've found the right therapists....if I'm working closely enough with him at home....if having him be so far behind now is a predictor of his future independence....

Last night Bob and I sat down to work through all of our medical bills from this year and came to the realization that $10-$15K each year is what we should expect in expenses for Nate.  Our out-of-pocket for Cody this year?  $3.71....yes, three dollars and seventy-one cents!  That's hard too.

I'm not writing this to complain or get your "oh, Danielle, you're a great mom" comments.  I'm writing because every now and then I just need to vent.  Ninety-five percent of the time I'm fine.  I love Nate and am confident God placed him in our family for a very specific reason.  But every now and then I have a hard day.  And that's real too.