Trying to survive

I feel as though my life is in danger.  At the beach last week, Emma was held, not made to wear her glasses, skipped therapy, and wore herself out with all the busy beach and pool activity every day.  My mother is now paying the price.

Emma spent the beginning of the week being whiny about being on the floor at my parents' house, as opposed to being held, as she so often was at the beach.  Two short weeks ago, she reached for the floor at every opportunity because she wanted to crawl and explore.

Emma REFUSES to wear her glasses.  I don't mean waiting 10 seconds before she takes them off...I mean pushing them away as you're bringing them to her face and if you DO manage to make contact with her face, she rips them off on one side while you're still trying to get the other side hooked behind her ear.  It's awful.  And her eyes are starting to turn in more as a result.

Emma skipped 6 therapy sessions last week.  She was miserable at OT and PT on Monday.  She didn't want to do anything, and she wanted to be in my lap or on my shoulder the whole time.

Emma absolutely exhausted my mom and Aunt Eva on Wednesday.  Actually, Tuesday and Wednesday, Emma talked non-stop.  Non.  Stop.  She has had so much to say this week.  And after she got over her desire to be held at the beginning of the week, she's been getting into things even more than she used to while crawling around.

I haven't gotten off scot-free, though.  Emma had terrible nights with her sleep masks (both of them) Saturday through Monday nights.  Finally, we've had a couple of better nights.  Today I spent a moment reminiscing, remembering what it was like to not have to deal with glasses OR a sleep mask.  And having the whole bed to ourselves.  Rewind to November.  Ahhh, now that was nice.  So that reminscing caused me to fast-forward...to what would it be like to have a child WITHOUT special needs.  Now I know that all children are difficult in their own ways, but to simply lay a child down in a crib at night and not see them again until in the morning...wow.  And to not have to worry about how long a child has worn his or her AFO's...has she been in the stander today...how long has she been in the stander...having a week with less than 5 appointments.  One day.  One day I'll have one of those kids.  I do not regret having Emma in any way, nor do I hold any of this against her.  But you have to understand my perspective.  When your first child starts creeping towards 2 years old, you start to think about that second kid.  My experience with just one child makes me think I can't do it.  But I have to remind myself sometimes of how difficult Emma can be, just as reassurance in my capability to have another child one day.

My cousin, Lindsey, forwarded me the daily email devotional that she gets every day, and I want to share some of it with you, in light of what I just wrote about Emma.  The devotional begins talking about a lady who has 4 kids, 2 of whom are twins with cerebral palsy.  Here's what that lady has to say: "although God can heal them, I’ve had to learn to spend my whole life praising Him simply because He is God – whether He heals the girls or not. I decided very early on that God is still God no matter what He allows in my life. I can trust Him even when I can't understand Him."  The devotional also says this: "In every situation, I come to a crossroad and have a choice: I can pout or I can praise. I can turn away from God because I don’t understand or I can turn toward God in full assurance that His understanding is enough for the both of us – even if it hurts – even if anger lingers – even if doubt looms...We can and should choose to bless His name through the pain, which astonishingly can bring His joy into our hearts."

Some days are easier to praise God than others.  I like to think that having God in my heart is what keeps me looking forward to having a less needy child, yet not resenting Emma at all.  I think there are a lot of special needs moms out there who resent their children.  I believe that trusting God and praising Him is what is necessary to value simplicity in other areas of life yet still love your special needs child for everything that she has been, is, and will become.