Friday, April 20, 2018

Ella's Run in Review

It's that time of year again.. time for the FIFTH Annual Ella's Run!!! Can you believe it?? I can't. I can't believe it's been 5 years since we started organizing this event. I can't believe this summer will mark our FOURTH CdLS Conference we've been blessed to attend, which means the first one we attended was SIX YEARS ago and that flew by so incredibly fast and in another 6 years my oldest firstborn sweet baby boy will be a SENIOR IN HIGH SCHOOL and we'll be planning his graduation for the 2nd Saturday in May and I JUST DON'T WANT TO TALK ABOUT IT ANYMORE, OKAY????

Whew.. anyways... now that that's over. I wanted to do a review of Ella's Run. I think (hope.. pray) most everyone can see the benefits of what we're doing with the funds earned from Ella's Run. However, I get SUUUUUPER self conscious every year that maybe people think we're just being greedy or we don't deserve this (we don't actually) or we should stop fundraising or every single one of our sponsors and participants is secretly talking behind our backs and deciding not to support us anymore and every single person I'm going to ask is going to say no and I'm going to want to crawl in a hole for the entire rest of my days.. I know, I get dramatic. Thankfully every single year I am shocked and surprised and moved to tears when people say "Of COURSE! How else can we help? What else do you need donated?" There are some really good people out there..

Anyways, I know exactly what it takes to go to Conference, but it occurred to me that not everyone probably does. As an example, here is a basic estimate breakdown of our trips.

Conference fees: $2500
Airfare: $4000
Hotel: $1500
Extra food/parking/rental car/taxis: $1000

............................

For a grand total of $9000. 
And thats without any extra "fun" stuff. 

We are so so thankful for the generosity we've received to be able to bring our family to these Conferences - it's so important to us. It's absolutely true that every single donation and tshirt bought makes a difference and my all time favorite donation was from the old lady I didn't even know who mailed us a check for $5 because that's what she could give.. I will never forget her. However, the truth is, one Ella's Run barely raises enough money to cover just the Conference fees for one year. Which is why we hold the event every year even though Conference is every 2 years. We can save in the off year to help with the next one coming up. This year will be much less expensive for us since it's in Minnesota and we won't have the cost of airfare, but our hopes are that we can start saving again for the 2020 Conference, which is rumored on the East Coast (not a cheap place to visit I hear..)

I didn't necessarily want to include this as to not appear showy, but I think it's important to some people to see exactly where their money is going. Obviously like I said, this will be our 4th Conference that we've been able to attend due almost entirely to the generosity of our community. In addition as of this year, we will have donated over $2000 back to the CdLS Foundation. It would be easy for us to keep that money to help with more Conferences, but it's important to us to support the ones that have supported us. We have also been able to privately assist other families struggling to afford Conference, and we are paying it forward with my own photography business by donating over $1000 in sessions last year to local fundraisers in our own community. As my business grows I'm looking forward to giving back in even greater ways.

I mentioned earlier that in another 6 years my oldest will be graduating high school and heading off into the world which is just crazy because he's obviously 12 right now and still has trouble tying his shoes sometimes and there is just SO MUCH to teach him still so there's that.. and I know I said I didn't want to talk about it, but it made me think... It's so easy to say "right now isn't a good time" for doing things-such as going to these Conferences. It would have been so easy to look back 5 years ago and say "Nope. It's absolutely not possible for us to attend any of these conferences right now with our small children and growing family. And I remember doing that in Chicago when I heard the next Conference would be in California. I remember sitting there, staring at the screen when they announced the next location and wistfully thinking that it was too bad we wouldn't be able to go and bring all the kids. It would have been so easy to say "next time." Next time things will be different. Next time life won't be so hectic. Next time we won't have a new baby. Next time we'll have more money. If I would have said that though, we would still be waiting for next time. We would have never attended any of these Conferences, gotten any of the important medical advice we've gotten, never connected with dozens of other families. We wouldn't have the friends or connections we have now. We would be pining our life away, waiting for a better time. And guess what? Four years ago wasn't a good time. Two years ago wasn't a good time. This year isn't a great time. And I'm betting 2 more years down the road will be the same story. And there a strong possibility that that sweet baby boy I talked about would be graduating high school in 6 years while we still sat idly by, waiting for a "next time."

I understand there are times in your life that things just don't work out or it's not best for your family to do something and you obviously have to do what's best for you, but I know for us if I would have stayed in my little bubble none of these amazing trips would have happened. Organizing Ella's Run is a huge step out of my comfort zone. I have to, first of all, be organized, call people on the *gasp* telephone, ask for (gulp) money, speak in front of a group of people (ugghhh), plan ahead (not my strong point).. The list goes on and on why I am not qualified for this position. But I am determined to not waste my life waiting for "next time." One of the hardest yet most important lessons CdLS has taught me is that "next time" isn't guaranteed. I am faced with death and the loss of young children from this earth far more than anyone should be. Ella lost another sister this week, just a year younger than her. But the thing I've learned from the strong mothers who stand after their children have gone is they're so glad for the memories. They're so glad for the vacations, the trips, the ballet class, the boat ride, the time they spent together. Life is short. Life for people with CdLS can often be too short. So take the trip. Go for the experience. Make the memories. Get out of your comfort zone. It may not feel like it's the right time, but you never know when there won't be a next time.


Sunday, March 25, 2018

Magic in the Moments

Confession time: I've been struggling a little bit lately.

If you follow my instagram page at all you might be aware that I'm doing a 365 project where I post a picture every day of our lives. I'm loving being intentional about photographing my family and editing every day keeps me more on track than.. oh say.. the past 7 years or so where I've barely editing or printed ANY pictures of my children because I'll do it "someday".. *hangs head in shame* You may have also noticed that I tend to post a lot of photos that capture a snippet of our happy days together. Kids splashing in puddles, snowflakes on tongues, puppy snuggles.. basically the essence of the perfect childhood and family life.

Which would be in direct contrast to this blog I seem to remember writing at one point..

I feel like my entire social media existence up until this point has been about being real and raw and honest and not sugar coating or acting like life is perfect or my kids are perfect or my house is perfect and now here I am.. posting only pictures of us frolicking in puddles and and dancing in sunbeams and playing with newborn puppies and tra la la!! It's felt a bit traitor-ish to me because I know our lives do not look like that on a daily basis, yet I'm in this constant struggle of wanting to create beautiful images, while being true to myself and not creating a lie about what our lives look like.

And then I realized something.

Motherhood.. and parenthood... and heck, just lifehood (ok.. I made that up) is full of ups and downs and hard moments and tears and tantrums and messes and sleepless nights and muddy boots and exhaustion and arguments and sometimes it seems like those things will never end. But tucked in there.. (I think it's somewhere between the spilled milk and cracker crumbs) are magical moments. Magical everyday moments. Sometime they get buried under the every day stuff, but they're there. Tucked in to the folds of everyday life.

The moment your baby takes his first steps.
The moment you hear the words 'mama' for the first time.
The moment those sweet chubby arms wrap around your neck and squeeze a big hug.
The moment she leans her head against your chest and falls asleep.
The moment his little hand reaches up to hold yours.
The moment she colors you a picture or writes her name.
The moment he picks you a bouquet of wildflowers.
The everyday moments where laughter fills the walls and the pitter patter of footsteps echoes down the halls.

There is magic in these moments. I don't want to be too busy or overwhelmed or tired to look for them. I want to choose to see them for what they are, and remember these moments.

It's all about perspective and how you choose to look at things.

I could choose to look at this setting and see a messy toy room for what it is. A messy toy room. A room that desperately needs cleaned but will go back to looking like this in 5 minutes or less so what's the point? This is how I could choose to view most of my days. Looking down at my children, seeing the endless to-do lists and bills to pay and forms to sign and things to clean and pick up and put away and organize..



Or I could choose to look closer and find the magic.



These photos were taken only a few minutes apart. Yet isn't the difference dramatic?

This isn't simply a comparison of the difference between a "nice" camera and a cell phone shot, but instead the real difference is simply perspective. Perspective to look past the mess and see the beauty that was right in front of me all along. To stop for a moment. Get down on the ground. On my children's level. To get up close and see and hear and feel and touch and taste the things that truly matter. (Ok, I didn't taste the flowers, but you know what I mean..)

That's what motherhood feels like to me. Being surrounded by a series of untimely messy moments and all of a sudden, when you're least expecting it, perhaps when you're feeling the most exhausted of all, a moment so beautiful it takes your breath away. A moment that has potential to pass you by if you're not present to see it. You have to be looking for it. You have to be willing to slow down and get down and experience it.

Because the thing is.. the magical moments don't always FEEL magical. I've been a stay at home mom for nearly 12 years so sometimes when we're building with blocks and it's the actual 35,791 time I've built with these same blocks, well.. it's easy to feel bored with it. It's easy to overlook it as just "one more thing." But it's truly not. This is what I love about photography. The moment I pull out my camera and look through the viewfinder my entire perspective is transformed. I get to choose what I see. I get to choose how I want to tell my story. What I want to be in focus and what I want to blend into the background. The view through my lens can be narrowed and focused or wide open and bright. It depends on the type of lens I use or the setting I choose. But I get to choose. I get to choose what I see and how I feel and how I want to live and remember this moment. And all of a sudden the sunlight hitting the blocks truly IS magical and this day really is unique and full of potential.

Photography forces me to slow down and observe the details. The way my daughter's hair falls across her face in the evening light. The curled little toes of my youngest as he snuggles on the couch. The way he hugs his teddy bear tight or the way his blankie trails behind him as he climbs the stairs to bed.

Motherhood is full of beautiful moments. And I don't want to miss them.

So if you follow my photography at all and you're getting annoyed that I seem to be living a dream life with dream children in a dream home then you are obviously DREAMING!! But seriously.. please know that life is not all roses and puddles and sunsets and unicorns and fairy dust, all while holding hands and frolicking in gorgeous golden hour sunlight. Most days are hard and overwhelming and frustrating and I constantly feel like I'm not doing this motherhood thing right at all. But creating these images, capturing this fleeting moment in time that is so precious.. well it's just my way of discovering the magic in those moments.

Wednesday, January 10, 2018

Chasing Dreams

Hello!! (Hellloooo Hellllooooo Hellllooooo...)

If I'm not mistaken that's the very understandable sound of distant echoes reverberating back to my woefully abandoned blog in the cyber world. *Hides head in hands..* 

In case there's anyone still out there though......

I promise to try to explain this year of silence and you can bet I have big things to talk about and lots of thoughts in my brain to get out, but first - - - Ella.

She had an absolutely amazing year of Kindergarten. We were blessed with the best teacher we could have ever hoped for, another year with her amazing and dedicated aide, an entire school system that works with her to help her be her best, and friends who love and accept her for who she is. We couldn't ask for more!! She has become so much more independent.. She rides the bus in the mornings to school, she eats lunch without assistance, uses the bathroom mostly by herself (wish she would do that at home..). She writes her name (and other words), reads short stories, gives almost every kid in the hallway high fives on her way to breakfast, and talks up a storm.. I love when we have to tell her to be quiet!! She typically answers yes to almost every question you ask her "Did you ride a hippopotamus today?" "Uh huh.." but her last report card came home saying that lately she hasn't been wanting to read so when her teacher asks her to, she started replying "No thank you."Ha! At least she's polite...

That being said.. there are some things we struggle with. Of course. There are still occasional potty accidents, communication failures, discipline issues, etc. We do our best with all those, but one particular issue has had me stumped. Ella seems to have a really hard time with decisions. We've practiced a bit of "Love and Logic" parenting through the years which, if you don't know about it, involves giving your kid lots of choices so she feels in control of what's going on around her. It's always worked pretty well with our other kids, but for some reason it backfires dramatically with Ella. When we try to give her a simple choice such as "Would you like to wear the pink coat or the purple coat?", in theory it should help her feel more in control of her world by choosing something in it. Instead it sends her into a complete tailspin/meltdown. She will choose the pink coat, start to put in on, then say "No, no, no.. purple" to which we will switch to the purple, get it all the way on when she suddenly decides she actually does want pink so starts screaming and ripping her coat off to get to the pink one, only to throw herself on the purple coat, screaming and crying for what could be minutes to hours. I am not even exaggerating. This happens nearly every. time. I try to let her make a choice. It doesn't even matter if I don't let her change her choice and make her stick with the original one. So oftentimes I make the choices for her and move on with our day. It seems like she's afraid to make her own choices, to make a decision, to stand up for what she really wants.

This also happens when we try to encourage her to be independent. For example.. most days she is perfectly capable of dressing herself. But will she? Most days not. We're working on it. She is also technically able to walk to the car on her own. Often times we carry her. It is physically possible for her to put her coat on. But sometimes she refuses. And often it's because she seems scared. She doesn't want to try something new, or even something old, because she's afraid. Afraid to fail. Most kids go through a very determined, independent stage where they want to do everything themselves and try and try and try again. She's starting to do that. But she would often rather have us do it for her than try herself and not succeed.

It can be frustrating and aggravating and makes me feel so so helpless.

Like I said - it's like she's scared.. Maybe of making the wrong decision? Of not being perfect.?Of not making the "right" choice? Of not pleasing everyone? Of going against the grain? Of failing? Of being faced with regret?

Or maybe that's me.. (Upon further inspection my daughter and I might have a lot in common..)

Stay with me..

These situations have led me to give a lot of thought lately to fear. And regrets. What things do I regret doing in my life? Or more importantly.. what sort of things do I regret NOT doing in life? And what was holding me back? Was it fear?

As these years keep passing by it's becoming more and more obvious that our time here, our lives, are so very short. We have one shot at making this one life we have to live the best we can. I'm finding that my biggest regrets aren't things that I've done, but things I haven't done. Sure.. I mean there's that belly button ring that sounded like a really hot idea in high school that doesn't quite have the same look after 5 c-sections, but it's not like I'm planning on wearing a bikini anytime soon anyways.. No, actually the biggest regrets I have are things I've dreamed of doing, but then was too scared to take the plunge. Things I knew I wanted in my heart, but decided the risks were too risky. Things I wasn't strong enough to fight for.

Is that part of what Ella's feeling?

Is she scared of doing something she knows she wants? Too hesitant to make a choice that might be "wrong"?

I've started a new venture this year. Which now helps explain my absence from the blog..

Photography. It's something I've always loved - I practically minored in it in college. Over the years I've been passionate about taking photos of my own children, but I always said I never wanted to turn it into a business. I told people I didn't want to work all those nights and weekends. That I didn't want to run my own business. I told people I'd rather just take pictures of my own kids. But in reality? Was that really the whole reason I didn't want to pursue it? Or was I scared?

Of making the wrong decision. 
Of not being perfect. 
Of not making the "right" choice. 
Of not pleasing everyone.
Of going against the grain. 
Of failing. 
Of being faced with regret. 

One of my very earliest memories is of setting up an "art gallery" of my masterpiece drawings in my childhood living room and demanding sweetly asking my mom come buy them from me. I only charged 10 cents a piece and to this day I still can't believe she didn't buy the whole studio because that is obviously a steal..

Anyways.. my point is. Maybe I always have had this artistic dream. Simmering. Waiting. Yearning to get out. But constantly being pushed under the surface because of my fears. My fears of not being perfect. Of failure. Of disappointing someone. In fact, I know I have always had this dream. My answer every year as a child of 'What do you want to be when you grow up?' was always always "artist." Except when I thought that wasn't the "right" answer. There were years that I didn't think an 'artist' was an actual profession. So I would tell people I wanted to be a teacher even though there was not a single ounce of me that wanted to be a teacher. I just thought that was the "right" thing to say. I mean.. it was safe at least. My mom was a teacher, two of my sisters are teachers. Both my grandparents were teachers. I assumed that must be what I 'should' be too.

But I'm learning something.

I don't want to live by what other people think I "should" do. Or what I think other people think I should do. Does that make sense? I don't ever want to regret not chasing my dreams. I don't want to get to the end of my life and look back, wondering how things could have been. I don't want to wonder "what if?" I want to KNOW that I lived this life to the fullest. That I didn't hold back because of fear. That I took risks. That I succeeded. That I failed. That I learned. That I tried. That I took the time to find me.

This past year has been hard. I don't like making mistakes. read: perfectionist. I seem to think things that aren't 'right' are bad See: blogs from the past 6 years. I would love to jump into this photography business by taking only award-winning, Pinterest worthy photos on every frame of my camera and having the best equipment money (that I don't have) can buy. Unfortunately for me that's not the way things go. I have spent the last year making mistakes. Trying and failing. Dusting myself off. Getting back up and trying again. Learning and growing and stretching and soaring. I'm planning on looking back on this time as the "Years of Mistakes". Which will obviously be in direct contrast to the previous 30-something years of no mistakes.. (eye roll).

Thankfully though, I have a pretty good mentor. Someone who has to try extra hard at every single thing she does. Someone who gets up and faces the day with determination. Someone who we are encouraging to try and fail and try and try again. Someone who has taught me that sometimes the things you think are the biggest mistakes and are certainly going to ruin your life can actually become the most amazing pieces of art.



I have really big dreams. Lots of plans for my photography business. I can honestly say I've never stuck with a 'project' of mine with this much passion for this long. Example: the 'collect every door and window in the tri-state area so I can build things out of them and then... ehhhhh lets try something else.' Our barn is still full. And if you offer me an old palette to this day.. I'll still take it. The past few years have been filled with me starting projects, diving head in, then fizzling out when I can't do it perfect. Becoming a jack of all trades, yet not having the determination to become a master at any one. When things got tough, instead of digging deep, I just shrugged my shoulders and moved on. I thought maybe there was something wrong with me.. maybe I lacked the overall drive to really be good at anything. But I'm realizing something else.. All those "failed" business attempts weren't really failures at all. But learning experiences to taught me what I truly enjoy and what I truly don't. This photography journey has been drastically different. Every. Single. Day. I make mistakes. And instead of shrugging my shoulders and giving up, I find myself digging deeper. Learning. And growing. I find myself igniting that fire in my soul over and over. It is a daily, hourly, sometimes minute-ly battle in my head to fight the negative thoughts of "you're not good enough" and "you can't do this" or "you should just give up." It is honestly the hardest thing I've ever done. But I find myself not giving up. Not giving in. I walk a fine line of pushing myself to be better without listening to the negative voices that seem to surface in my head in the most inopportune times.

I truly believe that we are placed on this earth to use the gifts God has given us to the best of our abilities to bring glory to him. And that's what I plan to do. I don't want to give this up when things get hard. Because there is a purpose in it. I don't know exactly what that purpose is right now. Or where it will lead. There might be plans in the works I know nothing of at this point. But I never want to let fear win out where light should shine. And photography is all about light. This year is going to be full of a lot of things- -taking risks, going out of my comfort zone, trying new things, stretching limits, chasing dreams.

But it definitely won't include one thing: regret.

Sunday, June 18, 2017

Happy AnniFathersVersaryDay

I know I am SO SO overdue on posting a blog about Ella and her amazing year in Kindergarten, and I have another one started that might help explain why I'm SO SO overdue (NO I'm not pregnant..) and I promise I will get to it, but right now we have more pressing matters. 

It's Father's Day. AND our 12 year wedding anniversary.
Otherwise known as the rare AnniFathersVersary Day.
And that calls for a very special blog for a very special guy!

The past 12 years with you have been a wild ride.

Some days it feels like a battle.

 But others are like a ride through the park.


 Or across the lawn..

We've been in some tight spaces.

 But we never let our guard down.

I love that you still go along with my crazy ideas.

and come up with a few of your own as well.

And just when you think you know a guy..

I've had a busy year trying to start my photography business (spoiler alert for the 'started blog') 
and you're always ready and willing to help me test out backdrops,

 lighting,

and you put up with all of my late nights editing.


There is no one in this world who supports me, encourages me, or believes in me more than you. You've never once complained about working a full-time job, then coming home and staying up late to help me clean and set up for a photoshoot the next day.

Okay.. actually there was that one time I asked if you would rather finish the dishes or mop the floor and I heard you mutter under your breath "This isn't my photoshoot.." 

HOWEVER 
for the sake of avoiding counseling for another year I am going to choose to ignore that comment and not bring it up again except for here where it will live on for cyber eternity.. 

 I'm thankful for our adventures together. 

the passions we share,

the memories we've made,

but mostly I'm thankful.. 

for Snap Chat.


 And screenshots. 

 You make our lives so much more fun

We love you!


Happy Anniversary AND Father's Day!

Friday, October 21, 2016

This Week

5 years ago this week I woke up to hear that my 9 month old baby had salmonella poisoning.
This week I woke up to get her ready for Kindergarten.

5 years ago this week I was riding in a life flight helicopter while my daughter barely clung to life beside me.
This week I was braiding her hair.

5 years ago this week I was being told there was a possibility the salmonella had spread to her brain.
This week she read me a book.



















5 years ago this week I was told she needed surgery, yet she might not be strong enough to survive it.
This week I watched her leap off our couches and tackle her brothers.

5 years ago this week I kissed her for what I thought could possibly be the last time this side of Heaven.
This week her teacher told me she loved her bouncy pig tails because they matched her personality so well. 

5 years ago this week I sat in the surgery waiting room clutching her pink checkered blanket the hospital gave us tight to my stomach, fearing the worst.
This week I kissed her forehead and tucked her into her big girl bed with that same tattered pink blanket.

















5 years ago this week she was on a ventilator and I couldn't hold her for weeks.
This week she sneaked into my bed in the middle of the night and I snuggled her close.

5 years ago this week I was imagining what songs we would play at her funeral.
This week I was listening to her sing Ring-Around-The-Rosie and dance around with her dolls.

5 years ago this week a priest was performing the Last Rites on my little girl.
This week she couldn't wait to go to the front of church to sit with her Papa and cousin.

















5 years ago this week I wondered if it would be better if Ella didn't make it.
This week... I am so thankful.

Thankful I was wrong. That I was given the opportunity to swallow my pride and share CdLS with others.
Thankful for our doctors. Who made life saving decisions our entire stay.
Thankful for our nurses. They took such good care of us.
Thankful for our special nurse Maggie. I don't want to think about what would have been the outcome if she wasn't on duty that day to be able to get the IO in to save Ella's life.
Thankful for the support of our family and friends. We couldn't have gotten through without you all.
Thankful for life. We know it can change in the blink of an eye.
Thankful that this is this week and not 5 years ago.

As I write this I can't help but think of all of Ella's CdLS sisters and brothers who are no longer with us. They are always in my heart and never far from my thoughts. I don't know why we were so lucky 5 years ago, and I'm trying not to feel guilty about it. Yet I know that we are not immune and nothing in this life is guaranteed for long. So this week we're celebrating life. The life we have today. My 3 year old asked me the other day whose birthday it was, convinced it had to be someone in our family's. It's not even closes to anyone's, but it kindof does feel like a birthday this week. As my Facebook Timehop takes me down memory lane of everything we went through this week 5 years ago, and how close we came to losing our little girl, I am reminded to never take life for granted. So even though it's technically not anyone's birthday this week, we will celebrate the gift of life. I happen to know a certain spunky little pig-tailed girl who would probably love some ice cream for supper tonight.

Friday, July 29, 2016

Just a Girl

So we've been having some.. 'issues' with Ella lately. I don't even know exactly how to describe her behavior. Other than frustrating, exhausting, annoying, tiresome, irritating, ridiculous.. 

Okay I guess it turns out I do know how to describe it better than I thought.

There's a lot of different little things she does that have been wearing on us. For example, she gets SO upset when someone else falls down or gets hurt (which happens with frequency with 4 rambunctious brothers..) she herself will make herself fall down or get hurt and run to us wanting affection. Except then she won't accept it. When we try to give her a hug she'll just turn the other way and scream "NO!!" then just be unconsolable and work herself into a tizzy. Or maybe a brother wants a toy she's playing with. She feels obligated to share it with them, gives them the toy, then starts screaming that she doesn't have the toy. When she gets it back though, she just screeches more and throws it, again yelling "NO NO NO!". She is terrible at making decisions. If I ask her, "Do you want juice or milk?" she might ask for juice. Then when I show up with the juice she screams "NO! Water!" so I dump out the juice and put water in the cup and again, "NOOOOO! Juice!" Or if we're swinging she'll say "All done." so I'll get her off the swing, then she'll start crying, "NO! More, more!" So I'll buckle her back up, then it's the sobbing and flailing and yelling "NOOOO All done!!!!" This goes on and on. With everything. And with everything she just becomes hysterical, unconsolable, unable to reason with even a little bit. She has this thing where she always wants her feet rubbed. She's always liked them rubbed (who doesn't?!?) and I think it's definitely a comfort thing for her. But there have been times where she would not go to bed at night and would just grab her feet screaming bloody murder while we sat by her bed and held them tight, doing our best to console her. She's also been having a lot of potty accidents lately. I feel like she's getting anxious about going and all my efforts to bribe beg grovel at her feet reward her are only making it worse.

So here are the thoughts running through my brain during these times.. 

What is wrong with her feet? Does she have restless leg syndrome? I'll make a homemade sleep cream using essential oils to help soothe her. Or maybe she's magnesium deficient. I've heard that's what causes RLS. Let me order some magnesium lotion online and see if that helps. Or what if it's something else? Maybe it's that Raynaud's disease I've heard of some kids with CdLS having where your blood circulation is limited. That can cause numbness to the hands and feet. *makes mental note to mention this to doctor.* Or maybe that's not it at all either.. Is it some kind of neuropathy thing? What kind of doctor do I need to contact about that? Are her feet tinging? I have no idea. She's just screaming. Sometimes she does it after she's been in her car seat for awhile. Maybe her feet are falling asleep because she doesn't fit in her carseat right? She's not big enough to move to a booster, but what else is out there? Why is she freaking out so bad? Is she in pain? When was the last time she went to the bathroom? Could she have a bowel obstruction? Or what about malrotation? Should we rush to the ER and get an x-ray? Or maybe.. MAYBE it's a GI thing. Could she be silently refluxing? I bet she is. She's probably been refluxing for years and we just didn't know it. I knew I shouldn't have put off our last GI appointment. It's probably gotten so bad that she has esophagitis now, or maybe even Barrett's Esophagus. No wonder she's screaming.  Or wait.. no, maybe it's a communication thing. Does she need to tell me something but can't find the words and it's frustrating to her? I really need to do better at practicing with her new communication device and Proloquo2Go app. I know I don't have enough choices on there for her to tell me what she wants. Except for her to be able to tell me what she wants I would have to program it in there, which means I would of course need to know what she wants in the first place...

A few weeks ago we were talking with some friends about this and they were commiserating with me and saying how actually a lot of these things sound exactly like their daughters. 

Their very, quite typically developing daughters. 

..............................................................................................

Is it possible.. that all these behaviors and tantrums and fit throwing and llama llama red pajama mad at mama so much nonsense too much drama are not at all due to the fact that she has special needs and developmental delays and Cornelia de Lange Sndrome, but purely attributed to the fact that she is... Just a Girl??

I have no idea. 

But if it is.. hats off to you mamas of girls.
Seriously.
 All my noisy, wrestling, loud, obnoxious, farting, stinky, sweaty, mud throwing, paint splattering, fighting, belching, filthy dirty, wild and crazy boys are by far so much easier to handle than this one. 

Is it possible that sometimes I get caught up in the syndrome and making sure I don't miss some important detail of what could possibly happen that I fail to notice that she really is.. just a little girl? When she does things different from her brothers do I just think 'Oh.. it's because of CdLS?' But maybe it's not. I know absolutely zero about raising girls (except of course for that fact that I am one..) and this thought slightly brings me joy and slightly terrifies me. 

Is it possible that I am just now realizing that I do, in fact, have a little girl?

A girl who adores looking at herself in the mirror. Who LOVES having her hair put up. Who at least 20 times a day comes to me and points to her hair saying "Up, up!" (Girlfriend should have been born in the 80's.. She would have rocked the big bangs era. I cannot get her pigtails high enough to appease her, even when they are quite literally on the very tip top of her head.) She will smile and giggle and turn her head, adoring her own reflection. (It doesn't have to be a mirror either.. Could be the window, a stainless steel bowl on the counter, the rims of wheels on cars we're walking by..) I have a little girl who loves to dance and spin in circles and giggle. A girl who adores her 'babies' and rocking and feeding them. A girl who loves to crawl up into our bed, pull the covers up to her chin, and snuggle in with us all cozy and warm. A girl who has her mama's chocoholic sweet tooth and shares my love of iced coffee. I can't wait to go on coffee dates with her. A girl who chomps her gum and holds my hand and melts my heart. A girl who for the very first time the other day wore the most adorable strappy sandals and let me put her hair in french braids. I died. 

So is it possible that these 'behaviors' are due, at least in part, to her being a girl and all the drama and out of control emotions that sometimes goes along with it? 

Maybe?

The jury's still out on this one. 

For now what I do know is I have a little girl. A little girl who needs me to be the best mama I can be. Who needs me to be there for her to love and comfort and hug and hold, to be firm and strong, and to be her very best advocate. A little girl who needs my patience and guidance even on days I feel like I have nothing left to give. Because she's not just a girl..

She's my little girl.



Friday, July 1, 2016

Our Week in Orlando--CdLS Conference 2016

It's becoming obvious that I don't handle change well. 

Me 2 weeks ago: "I don't want to go to Florida. Why did I even plan this trip? It's too expensive. And stressful. And hot. Is seeing our CdLS family even worth it? Specialists Schmecialists.. There have been so many awful things happening in Orlando lately. I just want to stay home in the Midwest with my corn fields where it's safe and quiet. There's no alligators here. I like my home. And my animals. I like my life. Why would I even want to leave? Maybe we shouldn't go.."

And then me on Sunday: "I NEVER want to leave Florida. I'm going to become a millionaire and buy a house on the ocean. I love the ocean. All our CdLS family can come live with us. Let's stay on vacation for all the days. There are no bills to pay! No chores to do! No house projects waiting for us! We'll lay around by the pool all day and look at the palm trees. I'll deal with the alligators. Where is home? What does my house even look like? Do I have a house? Do I even know how to cook? I have no idea.. Who cares? Tra la la la.."

Is it just me or does everyone feel this way after going away for a few days?
I faintly remember going through the exact same thing 2 years ago during the California Conference..

Anyways, we spent last week in Orlando for the CdLS Conference and had such an amazing trip!  The kids did SO well on the plane.
I think Ella was sleeping on JJ's lap during this picture.
We left a few days early and were able to spend some time at the ocean on the Gulf. When we asked the kids what they wanted to do in Florida, spending time on the beach hands down ranked #1 far far above than anything small and insignificant like, say.. Disney World. (And FAR less expensive too! Win-Win)
Pure joy.
It did not disappoint.
You can see shell-obsessed Charlie in the background.. That kid wouldn't have left a single shell in Florida if he had his way.
Our bags were considerably heavier on the flight home..

Sand castle fun
The sunsets weren't too shabby either..

We were at Clearwater Beach so we also went to the Clearwater Marine Center where the movie Dolphin Tale was made and created after. The kids were pretty excited to see Hope and Winter, the dolphin who had lost her tail. And I love the inspiration and correlation between so many kiddos with CdLS who have limb deformities as well.

We were the very first people in the center and the sting rays were so playful right away in the morning! It was amazing to see them so interactive--splashing the sides of the glass and wanting attention.
 

Since our hotel for the Conference was on SeaWorld property we had the chance to do some fun SeaWorld stuff too. Ella LOVED the dolphin show. 

She was so fun to watch--her face was total amazement the entire show.
Giraffes had better step up their game or dolphins just might take over Ella's favorite animal spot!!
 And now on to the BEST part of the week. 
Yes, even after all the fun 'extra' stuff we got to do, the absolute best part was when the CdLS Conference started. It was nothing short of amazing! 
Ella & Addison
 It was so exciting to start seeing CdLS families showing up at the hotel and popping around every corner. 
Ella's BF Payson
We were able to reconnect with so many friends from past Conferences.
Sweet Eva
And make so many new ones as well!
Meeting Micah
This sweet girl has a brother with CdLS and loved on Ella all weekend.
She whispered in my ear at the Banquet on the last night
"I wish I could be Ella's sister.."

Levi made a few friends as well!

Oh, and some pretty cool people got some pretty cool awards too.. Just saying.. ;) 

The older boys loved reconnecting with friends they had made in California. I love watching them build relationships as well and I know I've said it before but I think it's so so important for them to have other siblings of CdLS-ers that they can talk to as they grow up and face different challenges. 
I am so excited to watch them grow and have opportunities at upcoming Conferences to volunteer and interact with other CdLS families even more!
  
We had some really great consults with doctors as well. The OT remembered seeing Ella in California and couldn't believe how well she was doing. She had her run down the hallway and kept exclaiming over and over "Oh my gosh! Look at her trunk rotation! I can't believe it! Did you see her trunk rotation??" Seriously. Over and over and over. Crazy OT's.. Apparently it is pretty rare for someone with CdLS to have the fluid movement Ella does when she walks or runs. And also not to have any restriction in her arms or wrists. She was able to give us some good tips for strengthening her hand muscles so she is better able to grip her pencil and push harder on her paper to write in school. We also met with a Special Education Coordinator who reviewed Ella's IEP and reaffirmed that we are working with a pretty great school and are getting her the services she needs and also gave us a lot of helpful information I will be reviewing over the next few weeks! It was crazy to look back at our Speech Session from 2 years ago and see that our therapist told us that she believed Ella would not only someday be able to say her name, but read it and write it as well. I remember being so excited to hear that.. I had no idea that day would already be here! I can't wait to see what she does in the next 2 years! There are quite a few different research opportunities at Conference (and some really exciting new breakthroughs we were able to learn about!). One of the booths we stopped at we were already signed up with the registry through our local hospital.. and then we realized that the guy was from our local hospital. Small world!

My heart was so full over the weekend seeing all the CdLS kiddos and their families. It's just an amazing experience being in a place where kids who are sometimes looked at or treated differently by the world are not only accepted, but treasured and cherished and loved beyond belief. There is no 'your kids' or 'my kids' but instead they're all our kids. We celebrate together when someone reaches a milestone, we laugh together, we cry together when we lose a baby too soon, we encourage each other when we're down and hold each other up when we think we just can't do it any longer. Even though CdLS means something different to every family, no matter where you're at in your journey, it's inspiring to know someone has been there before you and can help guide you through it. We are so very blessed to have the welcoming and supportive community at home that we do, but this Conference is truly the one time where families can get together and feel normal, where everyone instinctively 'gets it' and where your everyday conversations about therapies and specialists and medical devices and communication apps are everyone else's normal conversations as well. The doctors and specialists are wonderful and so so important to meet with, but sometimes it's the families who have been through it who can provide the most help.

I've sat down so many times to write this post this week, but it's been hard. We have been struggling a lot adjusting back to real life. Ella has been having some very difficult behaviors (one in particular resulting in a doctor's visit for Hudson..) :( Apparently the Behavior Specialist should have been part of our consults last week.. She has been acting out and regressing in areas and I'm hoping it's in part attributed to sleep deprivation and disruption in schedule. I've felt many times this week I've reached my breaking point. But then I remember. . .

I remember the brave mamas who shared their stories and their everyday struggles with me during our mom's small group session. I remember how every behavior we talked about there was someone who could say "My child used to do that too and here's what helped." I remember the inspiring couple we met who raised their own family, and has now adopted and is fostering 8 other children right now, 2 of who have CdLS and who drove 1500 miles to be there (with those 8 kids..). I remember the selfless couple who already has one child with CdLS and couldn't make it to this Conference because they were saving their money to adopt a little boy with CdLS from Ukraine, who sadly just passed away this week before they even had the chance to hold him. I remember the strong mama who unexpectedly lost her sweet girl only a month ago who was able to come to Florida and love on her CdLS brothers and sisters. I remember the man who passed away this week who was the oldest living person with CdLS in the US (unfortunately only in his 50's) and the adventures his mom would post about. I remember the panel of young adults with CdLS we heard at Conference and the inspiring ways they are living independent lives. I remember the stories and the pain. I remember the joy and the love. I remember that I have a community who has been through it, is going through it and is there for me when I need it.

I feel so thankful that I was able to be filled up with so much love and inspiration last week. It makes all the difference in the world. The only bad part about Conference is that it lasts only 4 days, every 2 years. I loved meeting and connecting with every single person and I only wish there would have been more time to connect with even more. For me this was the best Conference yet. I am finally at a point where I'm not worried about what Ella is going to be like. I'm not comparing her to others to see what she's doing and what others are doing. I'm not racing around to find every answer and stressing out over every test. I've settled into a groove-- it's about who Ella is, not who I want her to be. It's about treasuring the time we have, not worrying that it's not enough. It's about welcoming others into our community and supporting them in this journey. It's about loving on those babies and counting down the next 730 or so days until the next Conference.. :)

Thank you thank you for everyone who helped make this trip possible!

Goodbye Florida.. We miss everyone so much already.
We can't wait for Minneapolis 2018!!!!!

*Another HUGE shout out to Grandma and Papa for coming along with us again. Our trip would not have been nearly as fun or relaxing and I'm not convinced all 7 of us would have even made it back together if not for you being there!