Where I Rant and Rave

We were in line at Fred Meyer when the lady in front of us turned around and said, "She is just so cute!  What a darling little girl!  Oh my, she is just the cutest thing!"

I take praise about my children's cuteness with a grain or two of salt because some people seem to lose it around small children.  I think my kids are the cutest ever, but I figure no one's really going to tell us our kids are ugly even if they think it's true. 

A minute later she turned around again.  "What are her disabilities?"

I'm not what you would call quick with the comebacks.  When someone catches me off guard by asking an intensely personal question I pretty much start turning red and stare stupidly before I can catch my bearings.  Finally I responded, "Well, she has dwarfism, but we don't really consider that a disability."

"Oh."  She said. "Well, she is such a cute girl."

At home I relayed this story to David.  He glanced at Daph, who happened to be performing some acrobatic stunts off the side of Christian's high chair at that moment and said, "I don't think anyone can take a look at that girl and think she's disabled."

And that pretty much ended our conversation.  

This encounter got me thinking about what I want people saying to us or asking us in public.  It's a question I hate thinking about because (and you may think I'm crazy here) when I look at Daphne I don't see anything wrong with her.  I think part of the reason I get so flummoxed when people ask about her is because it takes me a second to understand what they're asking.  I forget that others might notice anything different about her.

My heart aches when I realize they do. 

A year or so ago, a lady stopped me in Costco and asked a question about Daphne.  She was raising her grandchild who had some pretty severe health issues, and she said to me, "We're a part of a pretty close-knit group, aren't we?"  I think she sensed my confusion, because she clarified by saying, "the group of us raising handicapped children.  We stick together."

Then I was ultra confused.  I feel as though my peers and I are just raising children.  That's all.  We talk about discipline issues and eating issues and sleep issues.  We talk about our plans for schooling and whether or not our kids should be in sports.  I like to talk about the great deals on name brand clothing I find on half price day at the Salvation Army (best day of the week).  But am I supposed to be in a different group?  A group with the 'handicapped' kids?   Is that where people picture us and expect us to be?

Maybe we're doing it wrong, but we raise Daphne just like we would raise any other kid.  Maybe she is 'handicapped,' I don't know, but we certainly don't think of her that way.  She's just our kid, who, quite frankly, can do anything any other 4 year old can do.

I don't mind when someone asks us about her shoes.  Asking why she wears her braces is a lot better question than "what's wrong with her feet?"  I can easily answer why she wears her shoes; I can't tell you what's 'wrong' with her feet.  Nothing is wrong with my kid, people.  Nothing.

So when you come in contact with someone you decide is uniquely different (because you're so perfectly normal?), don't ask any questions unless you have a genuine interest in his or her life.  Don't be selfishly curious.  Treat them like a person, because that's all they are.  First and foremost, and to the people who love them most, they are just a person.  That's how you should think of them as well.

Ask only the questions you would want someone asking your own child (or asking you).  Remember the child you're asking about can hear you.  And for goodness sakes, realize that sometimes, some things are just none of your business.

As he went along, he saw a man blind from birth.  His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”

 “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him."    ~John 9:1-3

Daphne is a rock star, folks.  She's got great things ahead of her.  Maybe just ask me about that. 

Look, She Can Build a Tower!

We went to Shriners again this week to pick up Daphne's new shoes and to have a screening done by an occupational therapist.












I guess her doctor wanted to check her fine motor skills and make sure she has proper hand dexterity. Daph scored higher than her age, so apparently she's fine.

We already knew that, but it's always nice to hear it from a professional. Her x-rays showed she has some bones fused together in her wrists and ankles. Fortunately that's not slowing her down at all.

Shriners Does it Again

We went back to Shriners last week for the skeletal dysplasia clinic. After having 20 (I'm not kidding) doctors looking over Daphne's x-rays from the last time we went and having basically 20 different opinions on Daphne's unique skeleton, they took a bunch more x-rays and we're going to be scheduling another MRI soon.


















Daphne isn't the only one who likes the waiting room entertainment at Shriners.

The MRI will be at Doernbecher's where there is an anesthesiologist to give her the happy sleeping drugs. She's too little to be able to hold still long enough to get good pictures taken so she has to be sleeping for the procedure. Then maybe another surgery for her feet soon? We'll see what the new x-rays and MRI say.


















Posing with her bro. They were accidentally matching with their blue/pink animal print, but I think it turned out pretty cute. I need to make them match more often.

I tell ya, I didn't like going through her surgeries/MRI back before her first birthday because it was so sad to see her uncomfortable but not understanding what was going on. Now she'll be old enough to be aware and I am just not looking forward to it. Plus now that we have Christian, David and I won't be able to just camp out that the hospital the whole time and one of us (me) will have to leave Daph and sleep at home with him.












One of the best parts about the doctor...they give good treats. She got 'praying bear' as she calls him, and a little Hello Kitty Mega Blocks set. We got her some Hello Kitty Mega Blocks as her Christmas gift, so she loves the addition to the ones she already has.

But I'm trying not to borrow trouble. Daph will probably love her hospital time, as she usually soaks up any experience where she is the center of attention. And who knows, maybe she'll get some more treats.












Cheese snacks while waiting in our room.

Sometimes it Takes a Shriner

For 3 years now we've known that we could take Daphne up to Shriners for a visit. They have a skeletal dysplasia clinic that is apparently very good, plus it doesn't hurt that all their work is free.

When Daph was first born we were so overwhelmed by going to the doctor all the time that fitting in another hospital just didn't seem appealing. At her 3 year well child visit, though, her doctor brought it up again and we felt like now was as good a time as any to make our first visit.












Hello, Shriners, where have you been all our lives?! They are amazing up there. I don't want to complain about our current insurance and health care plan, because in light of everything we've done with Daphne we know we're quite blessed to have the coverage we have, but our insurance group is not very easy to work with. It's not uncommon when we're working with a doctor outside of our coverage for him or her to comment on how difficult our insurance is to work with. Even our doctors talk about it. So I'll just admit, I don't love our insurance. I don't really even like it.

We went up to Shriners on Thursday and couldn't believe how quickly and efficiently they work. The doctor saw her and wanted x-rays, so they sent us to get x-rays. We're needing some new shoes for Daphne, so after x-rays they sent us to get new shoes (no more spending 100s of dollars on her shoes). Then they scheduled our next two visits, both of them happening in the next month. I had to call them yesterday and confirm an appointment and I was on the phone for all of about 5 minutes. In comparison, I spent Monday and Tuesday trying to call our insurance to get Daphne's latest x-rays and never was able to get someone to help me, even though I talked to approximately 13 people. Did I mention that Shriners is efficient? And quick? And amazing?

As we were driving home David said, "they kind of make me want to be a Shriner."

(If you need to step away from the computer because you're nervous about a lightening bolt from Heaven in response to that comment, I understand.)

Our new family motto is 'Sometimes it Takes a Shriner.' (Another lightening bolt? Maybe.) Because when you need to get the job done, you just go to Shriners Hospital.

I'm sad they only work with sick children. I want to go there, too. (Probably another lightening bolt there because of making light of sick children. I am on a roll.)

















Shriners has the best waiting room toys. If you ever have to go there, go early just to hang out in the waiting room for awhile.

We were told we probably won't get to go to the skeletal dysplasia clinic until May, but as we have established that Shriners is amazing, we'll actually be going in two weeks.

We probably should have done all this years ago. I think it would have saved us a lot of time and energy.

We Have a Well Baby

We learned at Daphne 18 month appointment today that she finally weighs 20lbs! It is now officially legal that she can face forward her in car seat. We're not in any hurry to switch her around, especially since it's encouraged that kids face backwards until they are two. Plus it's kind of nice in a way that she can't see me when we're driving. When she sees me she tends to whine a lot and want me to get things for her.

Daphne is in the 3rd percentile for height (20.3 lbs), 0 percentile for height (26.5 in) and her head continues to amaze us by being in the 90th percentile. But here is an interesting tidbit for anyone who cares...her doctor plugged her into his brand new percentile chart for children with achondroplasia where she is 50th percentile for height and and 0 percentile for head size. What do you know, in some circles she may actually be considered tall.

And just because, here is Daphne one year ago at her 6 month visit. She had shorter hair back then.

On Being 18 Months Old

I am lovin' being mama to an 18 month old. Especially one who likes to do ballet.


















I love this stage she's in of learning to talk. Daphne says pretty much everything now, so if I wanted to make a list it would be better to make it of what she doesn't say. Like I don't think she's ever said 'scuba diver.' Or 'crematorium.' My favorite of her words, though, are 'robot,' 'avocado,' and 'shower.' I don't know why; I think the way she says them are just so funny. I also love that she says 'hello' every time the phone rings.

My favorite thing is how her sleeping is about 1 million times better than it used to be. When I think back to a year ago and how stressful last summer was with all the screaming and crying and waking up all night long...oh my, I cringe a little inside. But now she consistently sleeps at least 12 hours straight each night, and takes a 1-2 hour nap every afternoon. We take her to her room, snuggle for a minute, lay her in her bed, leave, and she goes to sleep. So, so, so, so wonderful. The agonizing months of sleep training were worth it.

Daphne seems to be a bit happier with life, too. I don't know what it was, but I feel like she smiled maybe 3 times her first 6 months of life. She actually smiles every day now, and even laughs every day, which is good for me. There's nothing like a constantly grouchy baby to make you feel like the worst mom ever.

She's not grouchy here, just amazed at how loud Brynner can be while barking at absolutely nothing.


















I would say my biggest struggle is the fact that she is still not great at entertaining herself. She's better, definitely, as her attention span lengthens and especially now that she can get herself anywhere she wants to go, but she would much rather have someone's full attention on her at all times. It's not an independence issue, more that she is very social and likes to have someone play with her. I've found that if I keep myself busy moving around a lot, she is better at following me around and kind of entertaining herself as she finds items around the house to distract her. But as soon as I sit down, she is right at my feet, whining for me to pick her up. I've decided that this is OK because it keeps me busy getting work done, as opposed to sitting and reading a magazine or something while she plays. I would love to read a magazine, but it's probably better to work. Of course it also means that any work I do must be something that keeps me moving, like dusting the furniture, as opposed to something that keeps me in one spot, like folding laundry or doing the dishes. Let's just say I dust the furniture a lot.

The only developmental delay Daphne has is in walking. We can all understand why: she's wearing 1-inch platform heals that keep her from being able to move her ankles. I probably wouldn't be able to walk, either. She doing well with balancing; she walks easily along the furniture or pushing her little push-cart, and she lets go to stand alone or even stands herself up in the middle of the floor. She's just not quite balanced enough to take a step.

Several people have asked lately if Daphne will ever be able to walk on her own. I'll be honest when I say it had never even crossed my mind that she wouldn't. I was completely surprised to have even been asked that. I don't know if this is a good or bad thing, but I tend to forget that there is anything 'wrong' with Daphne. She is so terribly normal that I forget to even think that she's any different from the other children we hang out with. I guess I forget that others don't see her in that same light.

Not to mention, does anyone ever have a child and then raise them to think about what they can't and won't be able to do? I hope not, and we are no different. It's one of the reasons I am glad that there has been no diagnosis made for the type of skeletal dysplasia she has and why we haven't actively pursued finding one. Can you imagine being told the box you were going to live in? To be told what you should expect from life? We expect Daphne to live and be and do. We do not actively look for limitations.

Whoa, that was a tiny little soap box I just jumped on to (stop judging my kid!) so I'll just finish by saying, we've made it 18 months, and we're pretty happy with it. We're going to keep her for sure.