PT Eval..

Reading an evaluation report always makes me sit and think.  I know, really truly know, that Beatrice is behind, in almost all areas.  We've had enough testing to know that and it hasn't changed in 3 years.  Her vocabulary, sense of humor, quick whit and incredible intelligence often make me forget the other stuff.

And it's funny because her normal is now my normal. I forget how many things she can't do and how many things she does that are not appropriate for her age. Take her size...I am used to it and to me, I know she's 4yrs old and therefore, she normal for her age.  Then I see her with other kids her age or see her growth chart or realize she's wearing the same clothes for the 3rd year in a row and they are still big...and it hits me.  She's still right around 23.5lbs (well below the growth curve)...2 years now at the same weight.  She's taller and looks older so I forget how tiny she is.

Today we got her latest PT eval in the mail.  7 pages.  7 pages documenting her medical history from birth through current age and detailing what she does, doesn't do and where she in compared to her peers.  I know comparison is the thief of joy and it doesn't happen often, but seeing it in black and white makes it hard to ignore.  You see, in my mind she's made progress over the past year and going back to that normal I mentioned...shes typical and normal for 4yrs old.

Reality...she's not.  Not even close.  I know it doesn't define her, but it can't be ignored.  She is at least 2 standard deviations below average in all areas of development regarding Physical/Gross Motor.  Balance (moving and stationary), jumping, climbing, stairs, sitting, getting off the floor and sitting back down, standing on one foot, kicking a ball, endurance and simply how she moves.  So where do we go from here....forward.  Forward to where, I'm not sure, but we  have to move forward.  We do PT and we see how many of the written goals she reaches. Then we evaluate again, write new goals and again move forward.  I know the reality of life for her is...this is going to be her normal.  Therapy to help with delays, muscle weakness, coordination, preventing joint pain will be a constant in her life for year, if not forever.  She will likely always struggle and be delayed, but I am thankful she doesn't know and thankful that I only remember a couple times a year.  The rest of the time, we continue to go to therapy a couple times a week and I live in our normal, which doesn't mean I forget, because I can't it's in my face every time I see her working at PT, but I don't focus on how far behind she is.

You know, this is NOT at all the life I had envisioned for us or her and some days the new normal hits a little hard.  Some days I wish she didn't struggle.  I wish her gross motor skills were the only struggle.  I wish life was easier for her and not filled with therapy, doctors, feeding tubes, pumps, backpacks, formula. I wish we had more answers than questions.  I wish we had a clear direction to go in.  I wish the tunnel wasn't so long and twisty and the light at the end was brighter.  That is not the place we are right now though, so we will keep moving forward, doing what works, trying other things, looking for answers and praying for wisdom to know what to do next.

I'll re-read the eval a few more times, digest it and think about it.  It truly is good to have an honest picture and accept reality. It helps everyone...doctors, family, medical staff, even me.  Then I will move on and celebrate the small victories.  Like playing in the snow for the first time.