Funny How Things Have A Way Of Turning Around

Saturday morning at 4:30AM I woke up to Alex having a seizure.  Her neurologist really wants me to try and capture one on video so I've been sleeping with my phone next to me so I'm 'prepared'.  By the time I got to her room, tried to put the code in to unlock my phone and actually get to the camera, she was kicking the sides of her bed so hard I just threw my phone down and tried to hold her.  She cried for a long time after that one.  I calmed her down and held her and eventually we both fell back to sleep...until 6AM when she had another one - a much shorter one, but one still the same...and she never went back to sleep.  By the time we got the day started, I was not in a good mood.  I was sad.  I had tickets to take Zach to a play that night but I just could not pull myself out of my funk to go. And that made me feel worse. He still got to go, but when he left I had a real good pity party for myself and just cried and cried.  I hate that they can't figure out what's going on, I hate that we're still having issues getting her into MCV for the monitoring, I hate seeing her like that, I hate everything about it.  And it's November.  Her birthday is in two weeks.  I always get sad around her birthday.  I obviously love her more than anything and I will DO anything to make her life better, but her birthday is a time to reflect on her life.  It's a time for me as her mom to reflect on her birth and the time I was pregnant with her.  And it's a grieving process I go through every year.  I watched the video of her birth on the day of her fifth birthday and it really made me sad and that's all I think of every year.  We had no clue when we brought her home and we were so excited and happy that the road we were going to go down wasn't going to be filled with ABC's and 123's but IEP's and labels.  It wasn't going to be ruled by dancing school lessons or gymnastics but by therapy and specialist appointments every week.  We were talking to her on the video when she was getting her first bath when she was screaming and we made comments like "when you're a teenager we're not going to be able to get you out of the shower", never imagining that she'll likely never shower by herself.  This year it's a big birthday - double digits - she's going to be TEN.  We should be surprising her with Justin Beiber tickets or something as equally cool - not buying the latest Elmo. 

On Tuesday she had physical therapy and she was having her annual evaluation.  I haven't taken her to a physical therapy session in a while because the time she has therapy and the time I need to get Zach from school conflict so Tabitha's been taking her.  This Tuesday happened to be election day and there was no school so I arranged to meet Tabitha at therapy and while I stayed with Alex she would that take Zach and her son out for a fun lunch date.

20 minutes into her evaluation Shannon put her in her walker and she started getting her prepared to walk out of the therapy room and down the hallway.  Not only did Alex walk out of the room but she went down the hallway, out the front door, UP HILL, around a loop, back DOWN the hill, back into the building and back into the room she started in.  We looked at clock when we got back and Alex had been walking in her walker for a full 40-45 minutes.  And I mean walking...no two step shuffle, no tap dancing her feet, no dragging her feet, no hanging on the walker and having to have her legs facilitated to walk - she took ACTUAL STEPS....THE ENTIRE TIME!!

I was so excited the next day we put her in her walker as soon as she got off the bus - and she walked just as good...she was much more hunched over - but I figure it's like barely walking for years and then in one day running a marathon - she was S-O-R-E...but you know what?  She DID it!

I went from being totally sad, to totally elated in 4 days.  I wasn't supposed to be at her therapy session, it just happened to be a school holiday that she decided to show me what she was made of and remind me that, yes, life definitely did not turn out as we expected but she has taught me to truly appreciate the little things we mostly take for granted.  She reminded me just how much joy she truly brings me in doing "the little things"....It made me think....God's funny like that.