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.

We have a FOUR Year Old!

If someone would have told me a few years ago that today I'd have a daughter 

who was turning FOUR years old, I would have been ecstatic. 

But what if they would have told me she was still the size of an 18 month old?

What if they would have told me she knows some sign language, but otherwise is practically non verbal?

What if they told me she can't do simple things like feed herself a bowl of cereal or even help dress herself?

What if they said she's still not potty trained?

What if they told me she still sleeps in a crib?

What if they would have described to me the amount of time we would spend at hospitals and doctors offices over the years?

Not to mention the hours and hours of therapy appointments?

What if they would have told me how upside our lives would be turned in the four years we've spent with this girl?

I probably would have been devastated, scared, wanted to run the other direction 

instead of blowing out the candles on her pink polka dot birthday cake. 

Good thing it's not actually like that. 

Don't get me wrong, all those things are true. Ella can't eat a bowl of cereal without assistance, dress herself, or talk much at all. And potty training seems so far out of reach right now. In a lot of ways it's hard to believe she's four years old today. But that's not what she's all about. That's not what I see when I look at her. I see a little girl who has fought to overcome the odds just to be here today. A little girl whose smile lights up the room. A girl who, no, can't speak much with her tongue, but can speak volumes with her eyes. A girl who snuggles in so sweetly when I pull a blanket up onto the couch in the evening. A girl who wrestles and tackles her brothers. A girl who sits in timeouts when she's naughty (up to 4 minutes today Love Bug! Happy Birthday!!) A girl who loves ice cream and M&M's and tic tic tacs. A girl who loves to love and be loved and does it better than anyone I know. 

A FOUR YEAR OLD girl who has turned our lives upside down and placed it back in a better place than it was before. We love you so much Ella Bean and are so glad you came into our lives 4 years ago. 

Here is Ella's Year in Review. Note: This song was made for Ella when she was in the hospital with RSV by a nonprofit organization called Songs of Love. The thought of complete strangers writing, singing and recording a song about my daughter is so touching to me. However, please excuse the cheesiness of the song.. We had to fill out a questionnaire about her likes and hobbies and favorite things to do.. and she was 2 weeks old. So what else to choose but butterflies and daisies, kittens and puppies!

Happy Birthday Ella Girl! We love you so much!!!

A Very Merry Christmas

We want to wish everyone a very Merry Christmas from our family!

Love:

Nolan

Charlie

Ella

Hudson

& Baby

We hope you are able to find the joy in this wonderful season and celebrate with those you love.

- The Watkins -

p.s. and maybe when I'm in my 2nd trimester soon I will have a bit more energy to blog again!! :)

It's the Little Things

In addition to all the 'big' things Ella has been doing lately (putting herself to sleep, walking outside, generally being such a BIG girl) she has been doing so many small things too that sometimes I forget to notice if I don't take a minute to stop and look around. 

First of all, she's gotten much better at feeding herself. As with most things for Ella, it's not like she couldn't feed herself, just moreso that she wouldn't always. And she is SUCH a SLoooOOOOOWWW eater that most the time it's just easier to spoon feed her like a baby than let her take the time to take a bite every 10 minutes on her own. When you have a failure to thrive diagnosis and multiple doctors monitoring her every ounce gained or lost, just getting your child to eat suddenly becomes way more important than how they eat. 

She's a pro at putting the forkful of food in her mouth if we stab something on there for her, but lately she's also gotten better at getting it on herself and even scooping up peas by herself. (Our 6 and 8 year old still struggle with this soooo.. I think she's doing pretty good). She's also gotten a little better at staying in her own chair at meal times instead of sitting on our laps or wandering around the house while getting walk-by spoonfuls of food.

Yes, we're wearing a nightgown. And rain boots.  At lunch time. Big deal.

She's also started holding her own cup and taking her own drinks instead of us holding it for her. This might not sound like a big deal to some of you that my almost 4 year old can hold her own cup, but it really is to us. And again, she's had the ability to do this for awhile, but just like with other things (*ahem.. walking, anyone?) she wouldn't do it until she was sure she could do it without making a mistake or spilling a drop. She's confident enough now that she does it all the time on her own. And all this has led to... her drinking way more on her own.. which has led to 

NO MORE MIRALAX!!! 

*Warning: Poop Talk Ahead*

Ever since Ella was so so sick 3 years ago (3 years?? really???) when she came off the NG tube she got instantly very constipated. I think it had something to do with her getting too many calories through the tube, then cutting back so much it really just messed her up. Through the past 3 years we've managed to cut her dose in half, but every time I would try to cut it down more, she would immediately get backed up again. Then about a month or two ago our whole family got a little stomach bug which wasn't a big deal at all, but since Ella had diarrhea I wasn't giving her MiraLAX (obviously). Every day I would wait on pins and needles to see if she was going to get backed up, MiraLAX in hand, ready to administer at a moment's notice, and every day she would continue going, even after the stomach bug had passed. It's probably been 2 months now that she's been LAX-free. I have no idea why that stomach bug forced her gut back in order, but whoever we got those germs from, THANK YOU! :)

Before I could plan my much anticipated Miralax Burning Party where all us former Miralax moms would gather around a roaring bonfire deep in the woods and dump our unused portions of Polyethylene glycol 3350 into the flames while dancing around chanting, (too much?) another child of mine had to have an xray done for some leg pains he'd been having and the only thing that showed up.. was that he looked backed up. So what did the doctor prescribe? MiraLAX. Because of course...

Anyways, Ella has also been working on being able to help put her clothes on and take them off herself.

 She's not real great at it yet, but she is sure cute trying!

She loves to color and is great at drawing circles. 

(SOOOOO exciting for me since my boys absolutely HATED to color)

And for the girl who formerly refused to wear any kind of accessory on her head, have anything touch her face, or really wear anything that didn't absolutely need to be there.. I'd say she's doing pretty good.

She's really getting the hang of this dress up thing!

check out the heels!

Another thing I mentioned on Facebook, but haven't on here is that Ella has been going to the daycare at MOPS for a few hours every other week and.. LOVING IT! If you don't know how big of a deal this is, consider that Ella has never ever ever in her entire life been left with anyone other than a very close family member. Heck, just a year or so ago the number of people she would allow to touch her could be counted on one hand. When the first MOPS meeting came up and Papa wasn't able to watch her like he did all last year I wasn't even going to go. At the suggestion of a friend though who reassured me I could just keep Ella with me throughout the meeting, I decided at the last minute to go. As I dropped Hudson off in his room, Ella got up and started playing right along with him. She was having so much fun that even though I had never considered leaving her I decided to try it. She cried for a few minutes the first meeting, not at all the second, and by the third after I took her coat off she looked at me and pointed to the door, telling me to get out of there! HA! Now she walks down the hall on her own, turns at the right door, and goes right in to play. I would have NEVER expected her to transition so well to being left with complete strangers and a noisy room full of random children. Every other week I am completely shocked all over again. (Does this mean she might be getting ready to leave me for.. *gasp* school??)

A few other small things are that she figured out how to spit, so we can now brush her teeth with flouride toothpaste more often since she can rinse it out better. And her speech is really improving. Last night I dropped the boys off at CCD and called to ask JJ a question. Ella grabbed the phone and plain as day said "Hi Mom." Melted my heart.. Just before the weather turned so cold and winter-like Ella and Hudson got the gator out and even managed to take it for a little spin. In the past, Ella would have completely freaked out if something like this started to move with her in it, but she really enjoyed trying to make this go and even managed to do it a few times all on her own. She was still a little hesitant, but I'm pretty sure by next summer these two are going to be tearing it up!!

Sleeping Beauty

Since the day Ella was born she's basically always been rocked to sleep. 

Every nap time. Every bed time. Every day.

I'm guilty of this with all my kiddos. I have a hard time just laying them down when they're awake, even though I know you're 'supposed' to. I listen to the experts, hear that babies should learn to soothe themselves to sleep and you should lay them in their cribs before they even act sleepy, then I immediately go and either nurse or rock them to sleep. I can't help it. I'm always astounded when I'm at a friend's house and they just lay their baby down. In their crib. Just like that. Lay them down and leave. It's shocking. (Consequently this loving need to rock my babies to sleep usually ends at around the 9 month age when I'm so sleep deprived and in full blown crazy mom mode from them not being able to put themselves back to sleep in the middle of the night.) But I digress..

So we've always rocked Ella to sleep. It isn't usually that big of a deal. We wait until she's acting super sleepy, rock with her a few minutes (or more), wait a few more minutes until that magic moment when she's good and sleeping heavy, but not too long where she's had enough of a 5 minutes nap and wakes up good to go, then lay her down and all is well. Easy Peasy. At least it used to be that way. This summer Ella started being a real pain (for lack of better description) to put to sleep. She started staying up until 10:00 or 10:30 (past our own bed times!) not falling asleep easily, then when she finally did, would wake up and scream when we tried to lay her in her crib which would result in either more rocking or just giving up and bringing her to our bed. That meant that JJ and I had virtually no time to spend together after the kids went to bed. Neither of us could just relax in the evening and there was no time to get anything extra done without kids around. It got to be frustrating and stressful and one day last August while I was talking to a friend about it she casually asked "What would happen if you just laid her down?" 

What would happen?

WHAT WOULD HAPPEN???

What would happen is... I... I... I don't know. We'd never been able to just let Ella cry it out because of her reflux. She would get SUCH a gassy tummy and it sounded so painful and awful that it would have just been cruel to let her cry for any reason. But she'd mostly grown out of that now. So what would happen? There had been a few instances when I was rocking Ella at nap time and Hudson would start to cry downstairs so I would lay her down prematurely and she did actually put herself to sleep, but only a few times. I always meant to do it more often. Just lay her down. But I always had a reason not to. 'I think she's getting a cold so I'll just rock her to sleep one more time today.' 'We have plans tonight so I really want her to take a good nap.' 'Hudson's sleeping and I don't want her to cry and wake him up.' 'I just don't have the energy to listen to her cry today. Maybe tomorrow.' And on and on. Day after day after day. 

But that afternoon at nap time after my friend left, I decided to take her advice. I read Ella some books, sang her a few songs, rocked a few minutes, and laid her down. And what happened? She fell asleep! But she had done that before. The real test would be at bed time. I dreaded it. I knew it would be awful. But that night we did the same thing. We read, we sang, we rocked, we laid her down. And she was not happy. She screamed and cried. We checked on her. She taught herself to soil her diaper on command. We brought her back down stairs to change her. And back up again. We sang her a few more songs and laid her down. She screamed some more. But I think it actually only went on for about 20 minutes. The next night it was 10. And the next night? We didn't hear a peep after we laid her down.

ARE YOU KIDDING ME??? 

It took three nights to overcome something we had struggled with for three years?

She got to the point where she actually LOVED going to bed. Sometimes she would ask to go to bed as early as 7:00. The extra 3 hours we had in the evening were so refreshing and we were able to get so much accomplished! You would think my house would be spotless, my garden weeded, and my blog less neglected, but I'm sure I've been doing something useful with my time.. I think. 

This is how good Ella got at putting herself to sleep. 

She slept about 30 minutes standing up on a metal folding chair like this.

It also possibly could have been something to do with the fact we found out she had strep throat the next day..

I wish I could say she's kept this whole 'awesome sleeper thing' up over the last few months, but the truth is we've let it slip a little. In fact, as I write this it is 9:30 at night and she is laying on the couch watching babies on her tablet. But in my defense we had an exhaustingly long day and nap time was completely torturous for Ella and Hudson (and mom) today and I'm pretty sure I have PTSD from it all, so we're just gonna let it slide for tonight. We might have to have another sleep-training session soon. And maybe one in the middle of the night too so she would actually stay in her own bed all night? But her bedroom is so close to the boys' I don't want her to wake them up.... ;)