Bullfrogs and Butterflies...we both been born again

I wasn't sure what to title this entry when I started writing, so if it has a title then it was an after-thought. I've felt like writing for a long time...so this might be a long one. I'll understand if you don't read the whole thing...no telling how long it's going to be.

Am I allowed to whine about my daughters condition when so many other people have it worse? I struggle with that a lot. As you might know I read a LOT of blogs every day. I just go through each of them every day checking in to see if there is anything new. A good number of my blogs are about a family struggling to cope with their current situation. Maybe this is one of those blogs to someone else. I have decided that since this is my space to vent I'm allowed to and if someone feels like they have it worse, well, they probably do. However, this is the situation that God gave ME to live with, and I feel like He allows me to complain when I'm not totally happy with His decision.

My daughter is such a light in this world. People stop me every day to tell me how beautiful she is and how happy she looks. She's both, beautiful and happy...that is something to be thankful for. Side note: I've notice that a lot of 2-year-olds tend to get very fussy or throw fits or just plain freak out sometimes (insert laughter from all of my friends who are moms)...my daughter doesn't. I mean I can tell when she's tired or hungry or overwhelmed, but she doesn't cause a spectacle or anything, she just has a pathetic cry that makes your heart break instead of get frustrated...a wonderful blessing if you ask me. My son exercises his lungs to their full extent when he's not happy, which isn't very often, but still.........okay, back to Ella. She makes me laugh most days as she talks to me in the car or sings along with the radio (I really just THINK she sings along, I have no idea what she's doing). That's one problem. People always claim what Ella can do "oh, she said mama today" or "she is really close to standing" or "she's gonna start crawling any day now" or "don't worry, she'll catch up"...did someone get a memo that I missed out on? I know that we have an amazing God who could make Ella a typical child or heal her of the reason her brain doesn't function correctly, I'm just not sure that He's planning on doing anything to change her situation. I'm okay with that, most days. Today wasn't one of those days.

On Mondays my Heaven-sent-in-laws take Ella to her therapies. This is a huge blessing because it's VERY hard to take both kids to the pool, get Ella dressed, to therapy, changed, then over for more therapy at another location. On Thursdays (and today) I have both kids...by myself. The hardest part is...do I unload her chair, or the double stroller, or just carry them both in...I go for the last one. Mainly because it's quicker and the other two options take up a lot of room. However, try carrying a child who can't sit on your hip very well (and I have PLENTY of hip for her to sit on) and an infant in a car seat. It makes me look a little disoriented. It makes me feel VERY disoriented.

So, today I took both kids in for Ella's speech therapy (long story, but this week and next she only has speech on Friday). So, I'm already a little overwhelmed by having to carry them both in an then get them back out to the car. Then we head to a wonderful birthday party for one of Ella's friends who is her exact same age. I love this family. They are wonderful people and have the most beautiful (and funny) little girls, one of whom loves my "baby Ella". This party was perfect...find the butterflies, play parachute games, run around eating suckers that were on the butterflies, play in a great bounce-house complete with slide, eat birthday cake and hot dogs...........notice I didn't list one thing that my poor sweet daughter who is the exact same age as these kiddos could do. (now the tears start to fall) My sweet little girl sat inside, she rolled around on the floor and she was perfectly happy...no idea that a party was happening around her and she couldn't participate, but I knew and I started to realize that parties like these are going to get more difficult. For two years it's been easy to hide behind her age to disguise the differences, but today they were painstakingly apparent. When people would ask how old she was I could watch their faces as I told them she was 2...same as the birthday girl and their little ones. I don't mind explaining Ella condition at all, I think I've gotten pretty good at doing it without a lot of medical wording, but I'm not sure people really want to know what is wrong with Ella, well, maybe not everyone. This was a great party. It was so creative and fun and all the kids left with sugar highs and sweaty from head to toe...and I'm sure they all slept wonderful right afterwards, but my heart was heavy as my kids slept. How am I going to continue to do these events?

Not just parties, but even play dates. My friend Shannon found a great play area at a mall that might work for Ella, but it's still so hard to find anywhere for her to play except at home. Honestly the only place she is safe is in her playroom. She drops so hard from sitting or kneeling that it's impossible to even have her just on carpet. There are times at my parents house when we cringe because of the sound her head makes has she lands and that's on carpet and usually a blanket or two. Luckily the kid has a hard head and the worlds highest pain tolerance. (funny story: Will pulled out a chunk of her hair yesterday and she didn't even flinch...he's gonna have to do a lot worse to bother her)

I feel trapped. Some people would probably just suggest that I don't try and take her places and to only have play dates at our house, but that's not really feasible. Plus my house would have to be clean all the time and I'll admit I have no desire to ALWAYS keep my house clean. Besides, what other kids are happy trapped in a playroom with a child who doesn't play with them anyway?? Will she feel like she's missing out if I didn't take her to parties at other peoples houses, or is it my fear of missing out and making her even more different.

I want her to have control of her body. To be able to sit, stand, crawl, walk, run, jump...and do them safely without falling over and while protecting herself if she did fall. I'm sure I'll always want more than we have at the moment. She couldn't sit and I wanted her to, now she can sit, however modified and fleeting. I wanted her to talk, now she does, however, she's invented her own language that only she and Will seem to understand.

Just for one day I wanted her to play and run and laugh and eat suckers and cry and get scrapped and be sweaty and walk herself into therapy and feed herself at least one meal and not need special attention at the gym...just for one day. Maybe tomorrow. But even if I had it for only one day would it be enough?