Tonight right before getting Chloe ready for bed, I decided to snap a picture of her. She just looked so cute in her little gingerbread shirt, her curls were just right with her hair done over to the side.
In the past few months, she has turned into quite the little ham for a camera. However, tonight she decided to switch things up a bit.
She would be hammin' it up for the camera, then I would say "1,2,3," and on 3, she would close her eyes and/or turn away. She would giggle and giggle knowing full well what she was doing, then she would act serious again, like, 'okay, now for real this time,' and she'd get all posed and cute for the picture, then turn away when I would snap! I even stopped counting to 3, but she's no dummy and knew when I was pushing my finger down that it was time for action. At first I thought it was hilarious, but after 34 attempts and no successful pictures, it wasn't as funny anymore and I decided to give up!
She better watch it.... Santa's on his way and he might think she's being naughty!
She gets her naughtiness from her dad, you know (and I secretly love it!)....
Oby had not one, but two turkey bowls today. He is thankful for football....
Oby, Chloe and I had not one, but two family gatherings with not one, but two feasts. We are thankful for our incredible families and the love we share, not to mention our mom's delicious food. Yum!.....
Will is espeically thankful for the yams....
Izzy is thankful for the toy bin....
Chloe is thankful for being the center of attention pretty much everywhere she goes....
And of course we're ALL thankful for leftovers!....
Mostly we are thankful for the simplest things..... life, love, laughter, each other, our freedoms, the endless possibilities of all our tomorrows, and even our trials for they indeed make us stronger.
Ever since one of my heroes from the special needs mommy blogger community, Ellen, did a post about how having a special needs child affects your marriage, I've had my mind on the subject. And with this week being a week of gratitude and giving thanks, I've been thinking even more about my marriage, my relationship with Oby, and how grateful I am to have him by my side.
This has been a hard year. We're still getting used to having a single income since I quit my job to take care of Chloe. We made huge financial decisions.Oby's been in school. We remodeled a house. I've thought about going back to school. I've thought about getting a job. Chloe didn't sleep until a few weeks ago. We've had to fight insurance on equipment we've needed and therapy we've wanted. We've had disappointments with Chloe, lots of tests studies done, and few answers given. We've seen her make vast improvements, only to realize we cannot afford to continue the therapy that is helping her.
But every morning when Oby heads to work, he gives me a kiss and tells me how much he loves me. And every time he does this, it gives me butterflies. And even in the midst of most disagreements, Oby makes me laugh, and that laughter takes me back to the beginning of our relationship when all we did was laugh, and makes me realize that I feel the same way about him now as I did then. And every night when it's time for bed, we laugh and talk, then he kisses me and tells me how much he loves me, and I get butterflies because I love him too.
Let me borrow a snippit of Ellen's post (used with her permission), because I feel as though I could have written it, but she did a better job than I could have done:
I can honestly say that there have been times when the stress and fatigue have been so great I have snapped at Dave for no reason at all. I can honestly say there have been times when Dave's oh-I'll-let-her-handle-it attitude has gotten to me so much I could have cheerfully clonked him. I can honestly say that there have been times when the worries about Max have been so overwhelming that I have not felt like having sex. I can honestly say there have been times when I've looked at our wedding pictures and wondered what happened to that glowingly happy couple.
I can also honestly say that our marriage still rests on a base of mutual adoration; we hold hands when we walk down the street, kiss just because, plan date nights, find other places to do things when the kids take over our bed. We respect each other's strengths: I am the researcher, the booker of appointments, the scheduler, and Dave is Silly Doting Daddy who can get Max giggling with his crazy noises and funny games and fart talents. We compensate for each other's weaknesses... We can make each other laugh, even when things get totally insane. And we have together experienced moments of amazing euphoria with Max, bursts of bliss only parents of a child with special needs could experience. Like when Max... does anything for the first time....
I do not think our marriage is stronger from raising a child with special needs. Nor do I think its roots are decaying and, like some big old oak tree, it's at risk of someday toppling over and crashing. What I know is that our marriage is solid. It's been through the worst of storms, it's survived, and while it may not be perfect it is good. We are happier together. We are tougher together. We are better for Max together. And there is love, there is always love.
I believe ALL marriages have peaks and valleys. I believe special needs marriages have steeper mountains and deeper pit falls. I believe when a special needs couple was blessed with their child, they were also blessed with a life that was out of the ordinary. I believe having a special needs child forces us as a couple to dig to a deeper place within ourselves - remember who we are as individuals and as a couple. We have been forced to strengthen ourselves just to make it up the next steep hill. It is hard, it is fun, it is a bit of an extreme sport really. But just as I wouldn't trade Chloe for anything in the world, I also wouldn't trade the opportunity to grow within myself and grow as a couple with my amazing companion through this crazy ride. Our marriage has special needs, and making sure those needs are met is our call. We can't change it or wish it away. We have to get creative, be more patient, be more kind, remember why we fell in love, and enjoy those beautiful peaks when they come our way!
Since I began my journey in the special needs blogging world, I have made many friends who are living just to fight SMA. I have learned that:
SMA is the #1 genetic killer of children. Many people are unknowingly carriers of the gene that causes SMA. Dramatic breakthroughs have recently been made in understanding how to cure SMA. They are getting close to the cure. They need support and funding to pass legislation to bring the cure about. They need your support. They need everyone's support.
I have learned these things about SMA, so when our close friends let us know a few days ago that their precious daughter, Kenzi, had been diagnosed with SMA, my heart instantly broke.
This video was created by Gwendolyn's mom to help all of us learn what we can do to help those fighting SMA.
I have a very real testimony of angels. I feel them often and am grateful for the peace they bring. I wanted to share this art piece that I recently came across. Its message touched me and reminded me of a quote that is on my brother and sister-in-law's blog.
"In the gospel of Jesus Christ you have help from both sides of the veil and you must never forget that. When disappointment and discouragement strike--and they will--you remember and never forget that if our eyes could be opened we would see horses and chariots of fire as far as the eye can see riding at reckless speed to come to our protection. They will always be there, these armies of Heaven, in defense of Abraham's seed." ~Jeffrey R. Holland
I was discussing Chloe's condition with a medical professional a few days ago. He was so sad when I told him about it, and I told him he wouldn't be sad if he met her, that she is perfect in my eyes. He said, "So you're saying you wouldn't change it if you could?"
I felt uncomfortable and didn't respond.
How could I respond to that?
I can't change it.
God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.
Tonight we found out that our dear friend's 3-month-old daughter has been diagnosed with SMA. Well, they are 99% sure it is SMA.
When I was driving home and thinking about them and the pain they must be feeling, I was wishing to take that pain away if I could.
If only I could.
For my thoughts are not your thoughts, neither are your ways my ways, saith the Lord. ~Isaiah 55:8
It's been awhile, but I think it's time we start flashin' back again. I loooove going down memory lane!
Today's flashback has nothing to do with me. Unless you count the fact that I like Dancing With the Stars. (Notice I said I like it, don't love it, just like it.)
This flashback is a photo of Oby's Grandpa Phil with Donny Osmond.
That's right, I'm droppin' names. Donny. Osmond.
And not the has-been Donny of today, but the 70's star Donny Osmond of yesteryear....
Apparently Grandpa was working on a construction site for the Osmond Center (I think) in 1979. Donny would come to the site most days to check it out. Grandpa called Donny, "Don." Donny would correct him and say, "Actually, I go by Donny." This gave Grandpa ALL the more reason to call him Don. So Don called him "Philly."
This photo is also bittersweet for anyone who knows much about Grandpa Phil. He has a condition called Ataxia that causes his body to deteriorate. It's good to remember him standing and healthy, but it's sad to know the freedom that has been robbed from him. But if you ask Grandpa Phil how he's doing, he'll say, "Never better!" every single time.
Today was Chloe's first trip to the dentist. Wow, did she do great!
First she was impressed with the bright light, the television on the ceiling, and the fact that about four people's undivided attention was on her.
They started by showing her how the toothbrush worked on her finger. This made her giggle. I guess it tickled :)
She was very cooperative when they asked her to "eeeeeeee".....
And even when she was "aaaaaahhhhh"-ing, she would send me smiles....
They took an xray of her mouth....
The x-ray confirmed that her adult tooth was not damaged in "the incident" and it didn't appear that any other teeth had any nerve damage either. {{Raisin' the roof!}}
Mom says I have been a good girl and I'm hoping you agree with her! I've come up with a list of things that you and the elves might consider....
Normal shoes just do not stay on my feet. My feet are special like me and fall forward. So even though Mom & Dad buy shoes and boots for me, Mom always ends up carrying them because they fall off my feet so easily. I'm thinking these posh slipper socks from Nordstrom will help keep my feet warm this winter....
Santa, would you talk to the elves and see if they could whip up some of these teachable touchable texture squares? Just because I don't walk and play and hold toys doesn't mean I don't need sensory input. In fact, it means I need it even more. Mom and I think these textured square 'bean bag' things would be fab!....
Santa, I want and need these P's & Q's chewy tubes. All my other special friends have them and rave about them. Mom tells me they will help me with oral motor skills and sensory integration. I don't even know what that means, Santa, but please bring me some P's and Q's. Pretty please!...
Santa, I really could care less about plain white onesies underneath all my posh outfits, but Mom really likes them. She tells me they help me keep warm, and since I'm always lying down or in a chair, my shirts frequently ride up, and I guess Mom likes to keep me looking modest, so some new onesies are in order. I'm not a little baby like I used to be, and the stores don't carry my size, so you'll have to either have the elves sew some, or you could order them from essentialwhites.com. It's up to you, S-Man!....
And since reading books is my favorite thing in the world, it only makes sense that I'd like a book or two. Here are a few Mom thinks I might like.
Some classics:
Fancy Nancy's new holiday book. I just love Fancy Nancy!....
And some special books that seem to have been written JUST for ME!....
Five little girls with cerebral palsy and other physical disabilities share the dream of becoming ballerinas. With their powerful determination and the help of several committed teachers, these little girls get the chance to realize their dreams. A true story illustrated with beautiful photographs taken by James Estrin, the book follows five real little girls named Abbey, Monica, Nicole, Shekinah, and Veronica from ballet class to recital, where they show that working hard has helped them to become ballerinas in spite of their physical disabilities. The technical ballet terms and detailed descriptions of what the girls do in practice and performance are sure to please any child who loves ballet, while remaining appropriate for young readers. The plentiful photographs capture the personalities of the girls, making it possible for even a very young child to follow. This touching story would be a useful resource in an early childhood educational setting as an example of individuals with different abilities or disabilities, and its message of determination in the face of adversity is one that parents and educators of children of all ages would find useful.
Told in rhyme, this story follows Susan through a series of familiar activities. She swims with her father, works hard in school, plays with her friends -- and even rides a horse. Lively, thoughtfully drawn illustrations reveal a portrait of a busy, happy little girl with whom younger readers will identify. Not until the end of the story is it revealed that Susan uses a wheelchair.Told with insight, and without sentimentality, here is an inspiring look at one spunky little girl whose physical disability is never seen as a handicap.
Well I think that should give plenty for you and the elves to think about. I hope you have plenty of hot chocolate in the North Pole to keep you warm! We'll be seeing you on Christmas Eve, and there will be cookies -- of course!
Lots o' loves & kisses,
Chlo-Chlo :)
p.s. Santa, this is now Chloe's mom. I just wanted to let you know that we already got all these items for Chloe, er uh if you'll check your Santa bag, I'm sure you'll see that all the items are already in there, except for the books. So if Chloe's Grammy or Nana, oh I mean you and the elves, want any more suggestions for what to get this little angel of mine, you might want to think about those books. :)
Chloe has pretty much lived in Mary Jane socks since she was born. Since she doesn't walk, and kicks off regular shoes with great ease, the socks worked perfectly for us! But now she has grown out of their largest size, and I am sad. I've been searching for some that are bigger than 24 months, and came across these, made by the same company as the mary jane socks, Trumpette. They only come in infant/toddler sizes as well, but I still had too oooh and aaah over them, and share them with you all.
These are baby mocs....
These are Andy Tracks:
Holy crap, are they not the cutest things ever!?!?! If you have a girl newborn-24 months, you have to get those for her so I can live vicariously through you.
I've had several requests from family, friends and followers wanting to know how our "cry it out" method of sleeping has been working.
I've been waiting to post about it until I could find the words to properly express my feelings, but I can't find a way to fully get my emotions into words, so I'm just gonna go for it and hope you get my point.
"Ferberizing" Chloe, or making her "cry it out" at night has changed my life. In a good way.
Don't get me wrong, it was hard. Very hard. The first night she cried pretty much the entire time. I was physically ill, it just felt so unnatural as a mother not to see to my crying child.
But surprisingly I did sleep better than I had in a long time. I think it was because so many doctors had to explained to me all the things that were NOT wrong with Chloe. The only logical explanation left (aside from reflux, which she is being treated for) is that she has behavioral issues associated with sleep. So because I want Chloe to have confidence and an ability to know that she is capable of taking care of some things on her own, I was somehow able to block out the cries and get some zzzz's.
The morning after the first night, Chloe was MAD at me. I think it was the first time she had ever been so completely angry at anyone. She wouldn't even look at me. But we went to visit my mom, and she was able to vent. It really was so funny. She just went on and on in her own little Chloe language, telling my mom all about how she cried and cried and I didn't come to her rescue. But my mom explained to her that she was okay and she needs to sleep alone in her own bed at night, and everyone needs to get sleep so we can take care of each other and have fun during the day. After her little heart-to-heart with my mom, she seemed to quickly forgive (isn't that so Chloe *sigh*), and we all moved on.
Almost every night since then, she has awoken only once or twice, cried for anywhere from 5-30 minutes, with infrequent check-ins from me, then soothed herself back to sleep.
We have been getting 6-8 hours of good sleep every night.
Just typing that brings a lump to my throat because I am so grateful. Thankful beyond words. Until these past couple of years without sleep, I never appreciated it enough. It is crucial to a healthy life that you get good nights of sleep.
Every once in awhile, if she cries, it gets to me. It just tugs at my heart and I want to run and rescue her. I have had a few moments when I have to just curl up in the fetal position and will myself to keep away from her, my logical self assuring my emotional self that this is for the best. Those moments of heartache usually pass quickly because I'm able to remember how much this has changed my life.
"Changed my life." Seems a bit dramatic, but let me tell you what. I mean it 100%.
We have a better routine. I feel like the sky is the limit with every single day. I still don't get everything done that I usually want to get done, but I am much more productive than I have been in over two years.
Do you know what that feels like?
AMAZING!
It has been a bit of an awakening for me. Funny that getting sleep would cause an awakening? But seriously, I just feel like all limits and restrictions that I put on Chloe and I before have been removed. It has been very good for my physical and emotional health.
This has been so good for Chloe, as well. I do feel that she is maturing because of this. She is less likely to cry if I'm not holding her every second. I think her ability to self-soothe has translated into a greater ability to also self-entertain. She is much more apt to watch television. Hey, three minutes of attention on the TV is a lot more than zero seconds.
I am so grateful that we decided to implement the Ferber/cry-it-out method. For anyone considering it, go for it. My only regret is that we didn't do it sooner.
Here are a couple videos I've come across recently that I just love.
First let me say: I LOVE Bright Eyes. Aren't they just the best? *sigh* Yes, yes they are (the best). Their sound is whimsical. This song and video are kind of different, which can be good and bad. In this case, different is good. No incredible. Also please pay attention to the lyrics because they are simply lovely. Truly, some of my favorite lyrics EVER (and that's really saying something).
PLEASE, do it for yourself, take a second to read the lyrics.
The rain, it started tapping on the window near my bed. There was a loophole in my dreaming, so I got out of it. And to my surprise my eyes were wide and already open. Just my nightstand and my dresser where those nightmares had just been. So I dressed myself and left then, out into the gray streets. But everything seemed different and completely new to me. The sky, the trees, houses, buildings, even my own body. And each person I encountered, I couldn't wait to meet. I came upon a doctor who appeared in quite poor health. I said "{I am terribly sorry but} there is nothing I can do for you {that} you can't do for yourself." He said "Oh yes you can. Just hold my hand. I think that would help." So I sat with him a while and then I asked him how he felt. He said, "I think I'm cured. No, in fact, I'm sure. Thank you Stranger, for your therapeutic smile." So that is how I learned the lesson that everyone is alone. And your eyes must do some raining if you are ever going to grow. But when crying don't help and you can't compose yourself. It is best to compose a poem, an honest verse of longing or simple song of hope. That is why I'm singing... Baby don't worry cause now I got your back. And every time you feel like crying, I'm gonna try and make you laugh. And if I can't, if it just hurts too bad, then we will wait for it to pass and I will keep you company through those days so long and black. And we'll keep working on the problem we know we'll never solve Of Love's uneven remainders, our lives are fractions of a whole. But if the world could remain within a frame like a painting on a wall. Then I think we would see the beauty. Then we would stand staring in awe at our still lives posed like a bowl of oranges, like a story told by the fault lines and the soil.
I know, right? Some of the most beautiful words ever written.
Next up, I'm Alive by Kenny & Dave (we're on a first-name basis).... C'mon if you don't like this song and these artists, then I am sad for you. Dave's voice makes me melt like butta! Jus' sayin'.
This next video requires no commentary. It's just plain good. The instruments and singing rock, plus if world peace is on your Christmas list, this video might give you some warm fuzzies. :)
Since we moved, family functions and bad nights/lazy mornings have caused us to miss church most weeks, so we're still very "new" to everyone. Except Oby who is best friends with all the guys because he never misses out on church sports. And it's funny that I don't know hardly anyone considering this is the very ward I grew up in, but this darn city has grown so much in the past decade, it's hard to keep track of the next door neighbors!....
Whoops, getting off the subject. I do that a lot.
So anyway, this morning we made it to church, and a guy came up to meet us. He was asking where we lived, and we described the location, the recent remodel, but what he identified was,
"Oh, you're the goat people!"
I'm not sure there is a lower class of people than that. The goat people. Hmph!
Then later in the afternoon, we were going next door to see my parents. Oby was in his "lazy clothes" aka workout shorts and a t-shirt, which is fine. But then I realized that he didn't have shoes on! Yes, it snowed yesterday and is very cold. But he wasn't wearing shoes! And, hello, have you seen his feet? Talk about snaggle toes!
And do I really need to bring up the fact that Chloe has snaggle teeth?
Then what do we do with our night? You guessed it. Played poker (I was the proud winner, by the way), watched Nascar and hunting shows while Oby flipped through a Cabella's catalog.
Okay, I made up the Nascar, hunting shows & Cabella's aspects for dramatic effect, but just because we didn't do that today doesn't mean we don't do that stuff. We do!
Don't try to deny it, you know it's true. We're white trash all the way.
p.s. I didn't lie about beating everyone in poker. I rock like that.
I was getting Chloe in her car seat to take her to therapy.
She does this thing where she puts her arm in my way so I can't do what I'm trying to do and she giggles. She thinks she is sooooo funny.
She is very much like her daddy in that way.
I said to her, "Chloe, you have to let me get you buckled up. We need to get to therapy. I'm gonna get you fixed!"
When I said that, we had a moment. We've had these moments before. Now, please don't think I'm crazy, but.... I have the gift of tongues, in a sense, with Chloe. Even though she's non-verbal, sometimes she speaks to me.
It's probable that only other parents of non-verbal children will completely understand how real this is or believe it is even possible. It's like her soul speaks to my soul. It is not English, it is not body language, it is not another unstudied language, it is real soul-to-soul communication.
She spoke to me in that moment. First she laughed, a deep laugh from her gut. Then she said, "YOU think you're going to fix ME? That is funny!"
And I realized and remembered what I've learned before. She is perfect as she is. I am the one who needs to be repaired. Deep within my soul I need to remember what truly matters. Chloe's earthly mission is to help others. Sometimes I get full of myself and think I'm helping her, but in every single way she is helping me. Fixing me. Refining my soul.
Today after a doctor's appointment, Chloe and I stopped by to visit Nana and the Norseth's. Henry and Chloe started having a wrestling match. Have you ever seen such chivalry in a wrestling match....
They were having so much fun, and Nana never wants to miss out on any fun, so she joined in....
Poor Chloe is hardly loved at all (yeah right!)....
Last night Oby came home from work with a pink, all-terrain special needs stroller, that was given to us by his co-worker. It is in PERFECT shape. It was used for their special needs daughter from age 10-24. I can see why. It is huge. Look how tiny (and cute!) Chloe looks in it!....
(For anyone interested, it's from The Baby Jogger Co. and is the Special Needs III-16).
The update on Chloe's tooth is that it is growing on me. No, it's more than that, actually. I love it. I know that sounds strange. It's not a perfect smile like it used to be, and it's my fault, and it should be a constant reminder to me of my imperfections as a mother. BUT when she smiles so big and her tooth is missing, it actually just makes me feel SO lucky to be her mother. She is so forgiving and happy and loves me, even though I'm imperfect.
It's actually her imperfections that make me realize how truly perfect she is in the eyes of the Lord..... All the attributes that really matter -- she's got 'em.
"And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me." (2nd Corinthians 12:9)
