Normal yet Not

I had all but written this post in my head about feeling 'normal' lately. I had planned to apologize for being such a terrible blogger (again-I know) but the truth was I just hadn't been feeling like there was much to write about. The first few years of Ella's diagnosis of CdLS were so hard. Every day brought new questions and fears. I had so many emotions, so many questions, so many tears, so many what-if's, so many things to process. I had a lot to say and sort out. And say it I did. This blog and everyone who reads it has been an amazing outlet for me. It has helped me get through some really dark and difficult times and celebrate some incredibly exciting times. But over the past few years, something has begun to shift. Those fears about us never being a 'normal' family have all but diminished. Well.. kindof.

I haven't had much to say lately because things just feel normal. There isn't much to write home about.. or in my case to wring from home about. Ella is talking so much more, but it has been such a gradual process, it just feels normal. She is doing amazing in school, but has been since the beginning of the year so now I just expect it. She still loves gymnastics, but it's her 2nd year so I'm not so shocked by it. She is bright, funny, stubborn, silly, and lights up our life. Just like our other four kids. I don't look at her and see anything or anyone different than anybody else around here. Our days revolve around school and homework and family meals and playing and disciplining and teachable moments and bedtime routines and movie nights and sleepless nights and memories in the making and all that stuff that is just daily. For the first time since finding out about CdLS, I was finally able to say.. Life is really normal.

And then I woke up this morning and saw that Ella's sweet CdLS sister Annabelle passed away last night after a routine sedated procedure. That's the 2nd CdLS angel in our family to gain their wings this week. Winter is always so hard on our babies and this year has been no exception. My heart breaks on a weekly basis for families that I've never met in person but are connected to by heart. I've had a particularly special place in my heart for Annabelle ever since her mom reached out to me after reading the blog shortly after her diagnosis. I've loved watching her grow from a chubby little baby into beautiful little 2 year old girl whose smile was absolutely radiating.

Today has shook me as I am reminded again that although our life does feel so normal, it's still not. It's like we're stuck in the middle--hanging in limbo of living our daily routines yet still straddling the proverbial fence when it comes to our children's fragility. We have one foot in the 'typical' waters of life- going to work, parent/teacher conferences, kids basketball games.. and one foot in the murkier waters of the constant stream of friends with babies in ICU, life-threatening surgeries, and the constant unknown. I know no life is guaranteed, even a typical one. I do positively know this. However with CdLS or many other genetic syndromes, the chances are just so much higher. That's our reality. And we have to live with it and witness it every day. Ella's life has exposed me to so many rich things-so many wonderful people and experiences. But it's also exposed me to suffering and loss so much more than most typical parents would see.

So here I am. Feeling normal, yet not. Feeling thankful, yet heartbroken. Wishing CdLS didn't exist so these families wouldn't have to say goodbye to their babies so soon, yet feeling blessed by the amazing things it has brought into our lives. I feel stuck in the middle of this crazy beautiful life and a little unsure of which direction to turn.

My friend Christie said it perfectly. Our "normal" is really so far from normal. It's not normal to see a friend lose a child nearly every week & wonder if/when it's going to be your turn. While most days I love our "normal" because it's unique & it's ours & it's something we wondered if we would ever have, sometimes I wish we could have a different "normal".

Please keep all these families in your prayers.

Today you are Five

Today you are five. 

Five years old! 

We've come a long ways baby girl.

You were so tiny. So delicate. 

Such a mystery. Such a fighter. 

We had no idea what to expect from you. No idea how our lives would be changed. 

We were scared, unsure, uncertain of what the future held. 

You haven't disappointed.

If someone would have told me on this day 5 years ago that I would have a five year old who was still mostly non verbal, I would have been heart broken. If they would have told me you were still the size of most 2 year olds, I would have been crushed. If I would have known you would still be wearing diapers at this time, I would have felt despair. If I would have known of all the hospital stays, handfuls of specialists and endless therapies I would have been discouraged.

I'm glad I didn't know. 

Because that's not the whole story. That's not YOUR whole story.

I didn't know so much about the future. I didn't know how you can communicate more with your beautiful eyes than most people can with a thousand words. I didn't know how hard we would fight for you to eat orally and grow and get to where you are. I didn't know how very capable you would be. 

I didn't know how you would excel at school and learn your letters so readily. I didn't know how you would light up our lives and the lives of so many around you.

I didn't know how inspiring you would be.

I don't think about it a lot, but the truth is just like 5 years ago, sometimes the future still scares me. Just like 5 years ago I don't know exactly what to expect or what our lives will look like down the road. But I have learned one thing. That I only have to live for today.

So today we will play doll house. And trains. And paint our nails. Today we will chase your brothers and tackle them and giggle. Today we will play kitchen. And today we will lay your dolls down for a rest and rock them so delicately like you do. Today we will eat cake. And ice cream. And be thankful for every moment we've been given.

Because today.. You are five.

The Snow Day

I don't have much time to blog today (story of my life..) but I posted this on my personal Facebook page a week or two ago and wanted to document it here as well. 

Ella has never been a fan of snow. (I tried to find the picture I know I have somewhere of us trying to take her sledding but couldn't find it. Use your imagination.. then add a little more screaming and some big fat alligator tears. There you go..) She has refused to put her feet down in it, walk in it and generally doesn't want to be outside when the sun isn't shining and the temperature is below 65. I've come to accept that it's just the way it's going to be and I won't be planning any big family skiing trips in the near future. But that didn't stop me from trying to encourage her to put her snow pants and boots on when we had a snow day the other week. For two days straight while her brothers went out and played in the snow every chance they got she would watch them go, sometimes bringing me her snow pants and acting like she wanted them on, then running away saying "No no no!" when they actually came close to her body. Finally Sunday came and I was talking about how I probably wouldn't even pack snow pants for school the next day since I KNEW she wouldn't put them on. Then at lunch that day I was telling the boys how glad I actually was that Ella doesn't like the snow, because forever and always now I will have an excuse to stay in the warm cozy house and drink coffee and hot chocolate and bake cookies and watch Christmas movies with my girl. I suppose I could make that sacrifice.

Right after lunch the kids went out again to play in the snow and Ella and I watched them out the window scooping off the patio. 

Or something...

Eventually she ran off and I thought she went to play. Instead she came back to me, bringing her snow pants and boots (neither of which she had ever actually worn). I wasn't super surprised.. she had done this before. But never followed through. I held them out to her, imagining she would run away crying again, but much to my surprise she actually slid her legs in the pants and let me pull them on! Then she actually put on her boots (HUGE for the girl who only wears very specific shoes).

 I was completely shocked at this point, but thought.. she'll never let me put her coat and hat and gloves on over all this. I had to document even this accomplishment with a picture in case it all went sour soon after. 

And then she put the rest on.. 

I thought--Well.. maybe she put in all on, but she'll never actually go out and walk in that white stuff.

Okaaaaayyy... but she probably won't want to get on the sled. 

Humph.. 

Well how about that..

I think it was at this point that Nolan yelled out "What's your excuse now, MOM??" 

Needless to say this girl, who never stops surprising me and absolutely never ceases to amaze me, was rewarded with a warm cup of hot chocolate and all the cookies she could eat.

The kids are all home again for another snow day today.
It's gonna be a good winter.. :)

Happy Halloween!

Happy Halloween!!

From: The Wizard, Glinda, Tin Man, Scarecrow, Cowardly Lion, Dorothy and Toto.

In case you were wondering

if Levi looks like his brothers at all...

Yup.

School: Not What I Expected

Ella has been going to school for a month now and I can honestly say things really aren't going at all like I expected..

For example, I expected her to have a hard time leaving me in the mornings. I thought she would be upset and scared and unsure and take a long long time to transition to riding with a 'stranger.' 

Instead? I can't shut the door fast enough after I put her in the car in the mornings to go to school. If I even try to chit chat with her aide for a minute, Ella is pointing at the door saying 'shut.. door. shut.. door.' This girl has no issues whatsoever leaving me and cannot WAIT to get to school.

I expected her teachers and aides to have a hard time communicating with her and knowing what she wanted or needed. I was worried that I was the only one who knew her so well and no one else would be able to understand. 

I didn't expect that everyone would pick up on her signs so quickly and be able to know exactly what she is trying to tell them.

I expected to have to be diligent about pushing for what she needed and ready to advocate on her behalf at every turn.

I didn't expect every single person who works with her to go above and beyond their role to get her things I never even thought of her needing (pencil grippers for her silverware at school, a 'teething' necklace so she doesn't put the toys at school in her mouth..) and bringing things from their own homes, or buying her special things to help her.

I expected the kids in her class to have reservations about playing with her and including her when they couldn't communicate with her very well. 

I wasn't expecting the school to text me this picture of eleven little girls waiting their turn to be able to push her in her new swing at school.

I expected to be content with sending her only 2 mornings for a long time.

I certainly didn't expect to be the one setting up the meeting only a few weeks into school to discuss sending her more days because she is doing so well and wants so much to be there on days she's at home.

I expected her to be crabby and exhausted when she gets home.

I didn't expect one of my very favorite parts of the day to be when she comes home from school and seeing her eyes light up as we go through her folder and read the notes her teacher, aide and therapists have written and talk about the things she did that day. She is SO proud of herself and it just shines through her.

I expected her be the same little Ella she always has been.

I didn't expect two separate people to tell me last week, the minute she walked in the room that they could tell something was different. The librarian at story time said she immediately could see the difference school is making as Ella was just so much more confident and independent. And one of the gymnastics teachers asked what we did this summer because she was so different (after we'd been there about 2 minutes)

I expected her to maybe learn a few colors this year while she was at school, but my ultimate goal was mostly just get used to the idea of being in a classroom and listening to a teacher. 

I most definitely did not expect her to point at the correct letters on my t-shirt on the 2nd week of school and say, "EEEEE!" I did not expect her, after only a handful of half days of school, to know the letters E, O, C & L and be able to find them on her own, in books, on signs.. everywhere! I did not expect to hear that academically she's right on track with her peers. 

Ella pointing out the 'E' appropriately enough in "DREAM BIG"

Well, at least I was right about one thing.
I absolutely expected everyone to adore her.

Spot on. 

Ella Goes to School

Last week was the start of another official 'first day of school.' Now is the time of year I would typically write a post sobbing about how hard it is to let these kids go and grow up, how much I miss them and summer, and how quiet the days are now.

WAAAAHHHHH!!!! Okay.. got that over with.

But this year was a little different. This year I wasn't just letting my older boys go.

This year was Ella's first day of school too. 

For Ella's first day there was so much more to plan for. So much more to prepare for. I had a hard time letting the boys go to preschool when they were 4. (Let's face it.. I still have a hard time letting them go at 9 & 7) but this was much more than buying them a new backpack and pulling out my hair trying to locate the extra large 12 count triangle tip box of Crayolas on their back to school list while navigating the crammed-with-people-because-its-tax-free-weekend-way-too-narrow-Target aisle with 5 kids in tow. This was much more than a stereotypical emotional 'how did my babies grow up so fast' morning. This required months of planning. Therapy sessions, IEP meetings, conversations with other special needs parents, transportation negotiations, piles of paperwork, and sleepless nights worrying. How would she do at school? Would she be scared? Would she cry and wonder where I was? Would the other kids accept her? Would she make friends? Would her teacher be able to help her? Would it be too overwhelming? Would it be worth it?

My very top concern was who her aide would be. 

Fortunately we had a plan.

And this is where the story goes completely wrong.

We planned to have an aide hired last spring. She could attend her IEP meeting and learn all about CdLS. I made a sign language book to give her with all of the signs Ella knows so she would have time to learn her language. We scheduled dates for summer visits so Ella would be comfortable with her at school. We exchanged phone numbers and email addresses and I almost hugged her at our first meeting because I was just so relieved to know the person the school had hired was kind and calm and loving. That all started out smoothly enough. Until the aide backed out halfway through the summer. Mere weeks before school another aide was hired. We were able to meet with her a few times, but oh wait--she wouldn't be there the first day of school. That's okay--the preschool room aide who Ella was semi-comfortable with would fill in. Oh wait.. nope. Two days before school started I found out she resigned as well. So the very first day of school left us showing up having absolutely no clue who I was turning my child over to. My precious girl, who only last year started allowing other people to look in her general direction without screaming bloody murder, was now to be left in the hands of a complete stranger. 

Ella knew something was up from the very start of the day. Why is mom fussing with my hair? Why are we rushing through breakfast? Why is that crazy lady taking all these pictures? We've visited the school many times to get Ella comfortable there and every time she LOVES it. She knows her brothers and grandma are there, so I really wasn't all that worried that she would be scared. I mean.. we planned for this. Except when we got to the school Ella refused to get out of the car. And when I finally did pry her out she refused to walk, which motivated Hudson to also decide his legs wouldn't work either. *sigh... Once in the room it took awhile for Ella to warm up to her surroundings and her temporary aide who is now going to be the preschool aide who was filling in for Ella's real aide who was unable to be an aide that day. Understand why Ella might have been confused?

Anyways.. I ended up staying in the room with her for about an hour while Hudson played and Levi slept in his carseat in the corner. (Thank you God for a baby who is still content to sleep a lot!!) When their class went down to an assembly and I peeked in to see Ella sitting alongside her classmates with her aide by her side I snuck out. I worried about her all morning, but when I showed up to pick her up at noon she was walking down the hall, hand in hand with her aide. When she saw me her eyes lit up and she reached for my face and said "Mom!" in the sweetest little voice. She then proceeded to walk down the hall blowing kisses to everyone we passed. She was SO proud of herself and had the biggest smile. She was ready for this.

However, I couldn't breathe too big of a sigh of relief yet. I knew we still had a big hurdle ahead of us. Transportation. The first day of school I drove the kids the almost 15 miles to school and picked them up again. The rest of the days the older boys would get on the bus at 7:00 and Ella's aide would pick her up separately around 7:45. We had it all planned out. Until this morning rolled around bringing with it a giant thunderstorm. Because of course.. Rain was pounding down, lightning was flashing all around us.. I ended up driving the boys to the end of the lane right before 7:00 so they didn't have to dodge the lightning bolts on their walk down and we waited. And waited. And waited. And no bus showed up. Eventually we drove back to the house and sprinted back in the door, soaking wet, only to call the bus barn and find out they changed the bus route and the boys would now be getting picked up about a half hour later. Oh. Would have been nice to know.. By the time we got that all figured out it was almost 7:30 and I had only just started getting Ella ready. So we hurriedly got dressed and ate breakfast. You guys.. it's day 3 of school and already my plans of providing the kids with a healthy breakfast to fuel their day have been ruined. White bread with butter and cinnamon/sugar. Because you know.. breakfast of champions right there. Due to our little construction project going on here, we had to walk up the hill behind our house to meet her aide because every time it rains there is no place to drive remotely close to our house. Pretty much every direction 50 yards out from our house looks like this.

  and this

and this..

As we walked to the car Ella's aide stepped out to greet her. And I see she's wearing a dark rain jacket with her hood pulled up over her head. Uh oh.  Ella is terrified of that look. For all the planning we did, for all the scenarios we tried to envision, for all the possible situations we tried to foresee happening, we neglected to include this obviously important piece of information in her IEP: 

'Please don't come to our house Grimm Reaper style asking for our daughter.' 

Side note: Ella's aide was wonderful and went and sat back in the car and took her rain coat off after realizing it was scaring her. She also rode home with her when Ella was scared of her afternoon driver so she would feel safe. THANK YOU!

So for all our planning.. pretty much nothing went as planned. Did I mention we all started to come down with colds this weekend? Nothing says back to school like a bunch of crabby snot nosed germ kids. However, Ella had a great day at school again today and I think this is going to be a really really good thing for her. I already love reading the notes from the teacher about how well she does following her classmates and participating in all the activities. I love seeing her face light up when I ask her questions about her day or mention things they say she did at school. I can tell she is proud of herself and after our start to today, things can only get better, right??