Story of my Life

I've noticed that sometimes when we're around other children people take extra precautions with Ella. They say things to their kids like "Be careful with her!" or "Don't get too rough around her." Most of the time I really do appreciate this. Ella does have a tendency to fall more easily or not be able to catch and protect herself when she does. Although sometimes I admit I just want her to be treated like 'one of the other kids'. Because.. really-she's not quite as delicate as some people think. I found a video that proves she can handle someone being a little rough with her. 

(Sorry for the terrible quality-the windows were too bright in the background! I think you can get the point though..) :)

P.S. Now that I've figured out this video this, I might just be unstoppable!!

GYMNASTICS RECITAL!!

Well, I did it you guys.. I spent 2 hours on the phone with tech support, downloaded a $40 program and figured out a way to upload and view my videos on my computer. Which left me with 257 random folders of videos that showed up on my computer in no particular order. Funny how most days I can't seem to find a few minutes to fold a basket or two of laundry, but this weekend I dedicated at least 10 hours to manually uploading, converting, and organizing every video from the past 5 1/2 years. That included staying up until 1am this morning, then Hudson conveniently waking up and screaming for another hour leaving me with about 4 hours of sleep. But that's totally ok.. you really don't need that much sleep in your 3rd trimester of pregnancy... (she says sobbing into her one cup of allotted coffee of the day)

But ANYWAYS.. before I go take a nap here is (finally!) the video of Ella's Gymnastics Recital. She did SO GOOD and I was so so so proud of her. Now, keep in mind when I say 'SO GOOD' I'm not talking about performing sequences of perfectly executed roundoffs and backbends with exquisite form. I'm talking about how far she has come this year. I'm talking about being out on the mat by herself without me there (something she barely even did in practice). I'm talking about following directions, waiting in line, not running off and doing her own thing. I'm talking about not completely freaking out at the crowd of people watching her. I'm talking about wearing a different than normal leotard (it's a big deal.. trust me). And mostly I'm talking about taking the absolute best Ella can do and totally rocking it. 

Here are a few pictures first and then the video, which of course my battery went dead during so I only got about half of it, but oh well. Better a little than nothing. And better late than never.. And uhhh.. better to always have low expectation for yourself apparently. ;)

Birthday Bash

I PROMISE I will get around to posting about Ella's gymnastics recital, but apparently my new computer isn't compatible with my video camera, sooooo... I might need someone tech smart to help me figure out what to do! In the meantime, we've had a pretty busy week around here. Two of my very favorite boys in the world had birthdays this week. NINE and SEVEN! How did that happen?

They got to have a friend sleepover, stayed up waaaaaaaay too late, ate a bunch of junk, played outside the entire evening/next day (I hardly even saw them), and got filthy dirty. So pretty much the perfect boys party! I seriously just love having little boys. Hand them a shovel, a sandpile, some boards and nails and they are good for HOURS, maybe even days if you throw a few sandwiches out the window every so often. 

Thank you to everyone who was able to come to their party and celebrate with them (especially the parents of their friends who probably had very tired, grubby children returned home to them)! I think we're finally starting to recover from it all. 

The morning of the birthday party (which was also Charlie's actual birthday as well) we were also excited to find out that one of our goats had her babies! Charlie is thrilled to share his birthday with such little cuties and thinks it's SO cool that one of them didn't know how to nurse so we got to milk the mama and bottle feed her. Uhhhhhh... yeah. Very cool. Until the 1am and 5am feedings!! (Thankfully she's got it figured out now!)

And the next day 2 more babies were born!

We also have been SUPER busy getting our home ready for an appraisal so we can (hopefully) get a construction loan to dig out a basement under our house. We worked way too long into the night way too many nights to get everything just perfect.. for a 10 minute walk through. *sigh. Now we wait and see what they say I guess.

It's been a crazy busy, but fun filled week with hopefully lots of good memories made. Charlie has been practicing his new scooter on the deck every day and I got to watch Nolan completely biff it on the lane this afternoon trying to figure out his new bike with hand brakes only. No broken bones yet, so all in all I consider it a success. :)

That's What She Said..

Sometimes I feel like I was jipped a little bit on the 'toddler stage' with Ella.

Since she crawled, walked, talked, everything so late, development was a little different with her. 

There's been a lot of things I missed and have been looking forward to experiencing with Hudson.

"I can't wait until Hudson is in that 'toddler stage'", she said

"It will be so nice when he can get around on his own."

"Ella was never much of an explorer. I hope Hudson is." 

"It's so cute when they start getting into things," she said 

"It will be so much fun to chase him around the house."

"I'm sure he'll be content with all the toys he has to play with."

"Won't it be great when he can get his own snacks??" 

"I'm so excited for when he's bigger and he and Ella play together better. They'll be best friends."

"That toddler stage I missed out on is just so much fun." 

 "I can't wait to do it again."

That's what she said...

The day someone called my daughter 'creepy looking'

"You are having SUCH a good day today Ella!" I exclaimed as I pulled her giggling squirmy body out of her carseat.

We had been to a mini-MOPS meeting, which she hadn't been to in a few months because of random illnesses and previously scheduled doctor appointments. It wasn't the same teachers or layout as normal, but she still loved seeing all her friends and being around other kids and did SO great, something that never ceases to amaze me even after all these months of me leaving her there.

We had been to therapy, which she was SO excited about since we missed last week (random illnesses again.. story of our winter). She went with her therapists all by herself (big girl!), imitated all her sounds in speech (I heard.. like I said I wouldn't know first hand because she was all by herself) and did great with her other therapies as well.

We picked up chicken nuggets and french fries (her favorite) and I tossed food at the kids over my shoulder drove to Open Gymnastics while the kids happily munched in the backseat.

We hadn't been to Open Gymnastics (basically an open gymnastics gym for kids to run crazy in for an hour and a half) for quite awhile. Since the little kids had both slept in that day and we were already in town for therapy I seized the opportunity and took them on a spontaneous trip there. Ella was SO excited and ran around on the mats, jumped on the trampoline and even jumped in the foam block pit, something she never would have considered doing a year ago. At one point she was clear across the gym from me, jumping with kids she didn't know, without a care in the world if I was by her side or not. So much progress!!

I had had a nice chat with the lady in charge, who is familiar with Ella's story, about how she is doing, and also another mom I had just met who had a son born very premature and had been taking him here weekly. She watched Ella and told me over and over how adorable she was (of course we were instant friends after that..) We swapped stories about doctors, our children's specialists, therapies, developmental milestones.. Maybe not a normal conversation for everyone, but for us it was.

We were all having a great time when it happened.

Ella was in the foam block pit and 2 little girls, probably 4 or 5 years old, were standing nearby. One of them looked at Ella and said to the other "That girl is creepy looking."

My heart jumped to my throat and my eyes widened.

"Yeah." The other looked at her and replied.

I swallowed hard and stared in shock not knowing what to say or what to do.

A few long seconds dragged by.

My beautiful girl looked at them and smiled. Then she started crawling toward them in an attempt to make new friends. She loves to do that.

The first girl looked at the other and said in an almost disgusted way, "She's coming closer to us."

That's when the mom, who was standing nearer to them than I, looked over at them and whispered to them for a few minutes. I have no way of knowing what she said but the girls didn't say another word.

I sat there, still staring, still in shock, still not entirely knowing what to do.

So, ignoring the very mature part of myself that wanted to inform those little girls that the two shades of pink they were wearing totally did not match and honestly I didn't think their pixie hair cut did anything flattering for their face shape, I did the only thing I could rightfully think of at that moment. When Ella crawled out of that foam pit I held her tight, kissed her head and told her she was the most beautiful little girl in the world. Then we went home, took naps, and made the chocolatiest, most peanut butteriest cookies I could think of and ate them together. Sometimes I guess that's all you can do.

I KNOW my daughter is beautiful. I know she has a beautiful heart. And a beautiful spirit. I don't need anyone else to validate that for me. She has so many people that think that and love and care for her unconditionally that it shouldn't matter in the least what a 4 year old girl I will probably never see again said in one single moment. But I would be lying if I said it didn't hurt. A lot. I've never thanked God so much before that Ella isn't even close to having the mental capacity to understand what they said.

I wish I could have done things a little differently. I wish I could have walked up to those girls after i heard their comment, smiled warmly at them and introduced Ella to them so they knew she had a name. I would have told them something about her, like that she loves to play with babies, so that they knew she was a little girl just like them. I would have answered any questions they had, like maybe why her eyes don't open all the way, in case that's what they thought made her look 'creepy.' The way it worked out I wasn't standing exactly near them. To avoid just yelling across the pit and into the busy gym full of screaming children I would have had to lean my pregnant belly over the edge of the foam pit, drag Hudson out of there, probably kicking and screaming, walk around the pit, past the mom, probably causing a panic attack in Ella if she thought I was walking away from her.. I really didn't want to cause a scene.

I don't think these girls were horrible, terrible, spoiled rotten bratty little no good kids. (Fine.. maybe I thought that just for a second. Or two..) And I don't think the mom was a snotty callous witch (Fine.. again. Maybe just for a second). I think what happened was just two little kids seeing someone who looked different than them and in their mind that was 'creepy' to them and a mom who was just as frozen in shock as I was.

If this ever happens to you, if your child ever says something like this to another-- first, please don't act like you didn't hear what your child just said while praying to Mary, Joseph, Baby Jesus and all the angels and saints that the mother of the child didn't just hear what your sweet little Suzy said. Chances are if you heard it, she heard it. I can't say for certain that this particular mom heard what they said.. but I'm pretty sure. I can understand the level of mortification you would be on at that moment, but do not ignore the comment. Even though you might want to just melt into a puddle right then and there (which is ironic considering, even though that mom may very well have been a wonderfully nice lady, in that instant I started to imagine her black hair growing down to her waist, her skin taking on a green tint and I'm pretty sure if I would have thrown a bucket of water on her she really would have melted.. but anyways) it is SO SO important to say something. We have opportunities for teachable moments every day with our kids--this is one you need to take. And by not saying anything, you are still teaching them something whether you intended to or not. I do appreciate that the mom eventually did say something, however the absolute BEST thing she could have done was help her girls form a relationship with mine, exactly what I could/should have done had I been standing a little closer and done so without causing hysteria in both of my children.

I'm so used to the overwhelming love and support our family, friends and community have shown us that I just really haven't had many (any? possibly..) situations like this arise before. It might be the first, but unfortunately it probably won't be the last. *insert heart breaking..* Please help me in educating our children, teaching them how to interact with others different from them. Don't take the easy way out--stand up and do what you know is right, even when it might be incredibly difficult and hard and oh so uncomfortable. Please.. do it for Ella.

Twas the Night Before Valentine's Day

Twas the night before V-Day when all through the house

There was a tiny critter stirring--it was the louse.

We envisioned the creatures crawling all over our skin

And we could feel every one like a prickly pin.

The children were nestled all snug in their beds 

while tiny little nits lay dead on their heads.

Their mother had combed and brushed every hair

For hours and hours with precision and care.

With nit comb in hand and foam spray in other

We started on one child and worked to another.

Three were infested while only one left was safe

but even he was treated while he lay there in wait.

They rested on bedding that had been washed twice that day

While their poor mother's hair turned more and more gray.

Their father, he wanted to shave every one,

But no one was willing, son of a gun! 

Plans to visit family that weekend had all been aborted

Cousins and birthday parties-our days were now thwarted.

No Valentine's flowers or candies were given

Not while a single lice was still livin'.

The only Fairy Tale here was the name on the box

Of the ol' lice treatment killer that we smeared on their locks.

No Romeo, no Juliet, no Cupid here either

All we really wanted was to sit and take a breather.

Fortunately we know true love doesn't come from a store

It's about the good and the bad days and much much much more.

So this Eve for our romance, we shall bleach the whole house

And we'll be damned to get rid of every last effing louse.

What would I change?

I posted a blog last week (I know, I know.. try not to act so surprised) but I deleted it before anyone had a chance to read it. It's been a hard month around here. Maybe it was overactive pregnancy hormones, perhaps it was too many sleepless nights, or quite possibly it was from the stress of having sick children for the past 43 days (but who's counting, really??). Hand Foot & Mouth Disease, Colds and Croup, Stomach bugs, Influenza, and Pneumonia, OH MY! but I know my post ended up coming off as pretty negative.

I got a lot of emotions off my chest. I talked about some of the hard things about being a parent of a child with special needs. I wrote about the mind numbing paperwork that I keep busy filling out every year right around Ella's birthday. A time when I'm trying to focus on the blessing of another year and all the accomplishments we've made, is also the time every single program/service/therapy she is eligible for requires updated and reverified with such pertinent information such as "How do I know the person" and "When did I first meet them?" (I hope conception was an appropriate answer..) And in addition the ridiculous busy work of writing down every single doctor Ella visits, their name, address and telephone number, every single appointment she's had in the last year, what the appointment was for, what tests were run, and what type of care was provided/medications prescribed. Every. single. one. Also, every single therapist she sees, how often, how long, and what specific things they are working on. (Oh, and also the names, phone numbers and addresses of those.) But the worst are the ones that require me to verify that she is still 'disabled', you know, that she hasn't been 'cured' of having CdLS or something.. those are really hard for me. I'm a pretty optimistic person and I try to look on the positive side of things more times than not. However, when filling out these forms it becomes painfully obvious that that one time we were all so excited about Ella scooping up one spoonful of peas, is very different than answering 'yes' or 'no' to "Does she independently feed herself?" Well.. no. Not really. And 'working on unzipping her pajamas zipper' is a far different cry from "Can she dress herself?" Not at all. Or that once she sat on the potty? Much much different from "Is she potty trained?" Not even close.. And knowing about 30 signs and having a handful of understandable words is great.. until you compare it to "Does she speak 2-3 word sentences?" Ummm... noooo. These forms just seemed to magnify all the things Ella is NOT doing instead of my usual mantra of "Focus of what she is doing." It just got to be depressing. Instead of celebrating her life and all the amazing things she's accomplished in the past 4 years I was forced to sit down and highlight her disabilities. Not cool..

I also wrote about the feelings of despair when your child is trying desperately to communicate something with you but can't find the words to express herself. And the heartache of watching anxiety creep back into her life in uncertain situations, just when I thought we had come so far to overcome it.  It doesn't really bother me too much when I see kids her age (or younger) doing things she can't. It's okay. She's happy. She's content. She enjoys her life. That's what's important. But to see her so hindered by this invisible force of anxiety that is very real to her, and to see her happiness compromised because of it, to watch her physically not be able to participate in something she loves because of it, to not be able to talk her through it or basically do anything at all.. is heartbreaking.

I don't have a problem writing about some of the hard things about being a parent to a child with special needs. I want this blog to be about real life and real struggles and they are for sure there. Having a child with a rare genetic syndrome can be very very hard and I don't want to sugarcoat it in an effort to advocate for my child. But after I hit the 'publish' button last week I remembered something. Something pretty important.

A few weeks ago I attended a training workshop at our ESU to help our therapists/service coordinators learn a new way of writing IFSPs. Basically you sat down with a team of interviewers and went through your day from the minute you woke up in the morning to the minute your head hit the pillow at night (or in our case 'the minute you passed out from exhaustion on the couch after the kids were all in bed'). It is supposed to help target key areas in your daily routine that can become part of your family's goals to improve your quality of life. After the interrogation process extensive interview was over I was asked one final question.

"If you could change anything about your life, what would it be?"

I thought for a few minutes. I contemplated. A few things popped into my head. But in the end do you know what my answer was?

Nothing. 

Nothing. I wouldn't change a thing about my life right now. It's crazy. It's messy. It's perfect. It's mine. 

Yes, having a child with special needs can be hard. Some days can be incredibly challenging-physically, mentally, emotionally. But when it really comes down to it, I wouldn't change a thing. And that's what was missing from that post I wrote and why I felt so uneasy about it that I deleted it. It's okay to struggle. It's okay to admit that it's hard. It's okay to feel like you're failing. Because at the end of the day I know in my heart that, hard as it can be, I wouldn't change a thing about any of it.