Addyson Grace: An Angel Going Home

I met little Addyson Grace at my brother's wedding in 2010. She was 3 months old at the time. A beautiful baby with her soft little red curls and perfect rose bud lips. Sweet, kissable, darling Baby Addy.

It was a short time later that her parents learned that she had a rare neurological condition known as Lissencephaly. The prognosis was not good. From what I understand, in the absolute best case scenario, they can live into their teens. But the longer these sweet children live, the more pain they suffer. Deformity, seizures, breathing problems, aspiration... A parent's worst nightmare.

But Addyson is one of those types of babies that just crawls right into your heart. She is a picture of angelic beauty. You fall in love with her... You ache for her to be okay... You pray for a miracle.


She could not have been born into a more loving family. Her mommy, Ashlee, pours herself into caring for this precious child. Loving her, nurturing her, and selflessly rejoicing for her sweet baby girl to know a perfect, pain-free body when she goes Home. Ashlee is probably the strongest woman I know.

Last week Addyson began struggling with her feedings and a bad cough. The doctors determined that her little body was beginning to shut down. Her loving parents had to make the tough decision that in order to insure her utmost comfort, it was time to disconnect all the wires and tubes and accept the inevitable. They were told they could expect about a week with her... A week to hold, cuddle, love and cherish her.

I get teary thinking about what Jesse and Ashlee are facing. How does a parent plan their own child's funeral? It feels so wrong.... Yet for Addy, it is so perfect.

I am going to forever be grateful for the chance I had to go visit them in the hospital yesterday. She was awake... and beautiful... and serene... I got to hold her and feel her soft breath on my face. I won't ever forget that... Because who would forget being in the presence of an angel? I am so blessed to have known this beautiful little girl.

While we mortals get to celebrate the birth of Christ, Baby Addyson gets her own wings to go join the heavenly choir and sing "Glory to God in the Highest!" And for her I rejoice.

  

"A couple days ago, I still hadn't gotten Addyson anything for Christmas because I still wasn't sure what to get for her. Now she will be going home with our Lord Jesus. She is going to the most perfect place. She is going to have the most perfect body where she can sing to the music she loved to listen to while here on earth, walk, run, jump, talk, will be seizure free, and will be able to see Jesus face to face. Now THAT is what I call a Christmas gift, not only for Addy but for mommy too! Thinking of her bouncing curly piggy tails running and jumping only brings happy tears to my eyes :) So some say why now with Christmas just around the corner? But I say, why NOT Christmas? Its the best gift Addyson could ever receive!! Mommy and Daddy Love you baby girl!" --Ashlee on Facebook when she announced that little Addy was going Home.

If you could keep little Addyson and her family in your prayers, I know they would appreciate it! Specifically, that Addyson remains comfortable and does not have any more seizures. For peace and strength and comfort and understanding to surround Jesse and Ashlee and their three year-old twins.

More photos from yesterday on Facebook -- Addyson Grace
Addyson's family last summer--Jesse & Ashlee and Kids

Snow Day!

Winter has officially come to our corner of the world. Though beautiful, I always have very mixed feelings about that first real snow fall. It gets me in the warm mood for Christmas and coziness and hot cocoa and fuzzy socks and snuggly blankets.... but it also means that January first will come and go and after that,

  .............Winter.............lasts.............for.............ever.............  

My husband just laughs at me when I stand out in the cold for all of thirty seconds, already shivering, tucking my chin as deeply into my scarf as possible, and wishing my shoulders could keep my ears warm while my eyes water and form ice droplets on my face. "Babe, I can't believe you were born and raised in Wisconsin. You act like you're from Florida!" He's right... And every year it gets worse. I try not to feel so strongly that it is utterly unfortunate to have my life, my love, my family, my friends... all of it centered in Wisconsin. (Don't get me wrong! Other than for the seeming unending Winters, I find Wisconsin to be one of the most beautiful places on God's green earth...... In fact, when it is green, it is just how I picture Heaven. When it is white however........ sighs... I digress.)

But this year..... This year.... I suddenly have a really weird new appreciation for this deplorable, dreaded, freezing, freezing cold white stuff. This year I got to see it through the blue eyes of my sweet little one year-old...... And would you believe me if I told you, 

It became MAGICAL.

With a child in my house, I really could not sit on the warm side of my window pane glaring out at the snow for ever. It was time to venture out of this cocoon and experience the real world... the white world... with this child of mine. Besides, his daddy was eager to take him for a sled ride.

...So away they went, up and down and around the drive way with me following closely in hot pursuit of a good picture.... or two, or three, or fifty.

 

The poor boy was bundled so tightly he could barely move. His sense of balanced was completely oppressed in layers of clothing and snow pants and overstuffed vest crammed inside his leather bombadeer jacket.

His determined little self still made a great effort at beating the odds and trying his own two boot-clad feet out in the snow. But it did not work so well. "Walking in a Winter Wonderland" is definitely not his song this year.

But as he acquainted himself with this delightful new climate, I found that I was almost enjoying it too.

Capturing his first-ever taste of snow was pretty cool (Ha! Pun!). Can you say Kodak moment??! It would definitely not be his last taste........

Unlike his mother, my little boy was quite fascinated with this new white world of his.

I watched him and wondered, What is he thinking? What is it like to wake up to this having never ever known of such a thing? What is it like to see it for the first time? To sit in it, touch it, experience it... so real, so cold, and so wet when it melts?

I'm thinking he didn't really know what his feelings on the matter were, except for that he has always been one to enjoy expanding his menu options.

Seeing Winter through the eyes of my child changes it so much for me. Some days I think my little boy teaches and shows me more than I'll ever be able to teach and show him. That's what I love about being a parent.... Well, one of the many things.

Let's Talk Baby Talk!

We all know that babies aren't born knowing how to talk. The only language skills they possess are crying and cooing. How often do we wish that they could just tell us what they are trying to say? While I do not claim to be an expert at all I do believe that being a good parent involves a lot of interaction, talking, listening and communicating from the moment they are born.

Last Christmas I was given Sara Bingham's book, "The Baby Signing Book". I was excited because I always wanted to try baby sign language and now I had it right at my finger tips. If I have to be real and honest with you, I will have to admit to not reading the book cover to cover. Nor was I as consistent as I could have and should have been with signing to my baby, but when he was ten months old and signed "eat" very deliberately to tell me he was hungry, I realized a whole new world of communication had just opened up for us, and it included a lot less tears to be shed on his soft kissable cheeks.

No classes are necessary to teach your child this language skill. The afore-mentioned book has more than 350 illustrated signs in it, which more than suffices for a baby vocabulary. I keep it handy to look up new words now that Jimmy is eager to expand his communication abilities. Another great resource is the internet, ASLpro.com being a good place to start.

Recently I was visiting with a mom of an extremely expressive 9 month-old. The topic of sign language came up and she regrettably stated that she just did not have the time to work with him on that. But this is what is so cool with babies and sign language.... It does not take extra time. It's so easy! It only requires remembering and being attentive. 

Remember to sign things like "eat" when you feed him, or "all done" when it is gone, and so on and so forth. Make it a habit as you go about your day to sign words you want him to learn and understand when you talk to him. But no need to stress if you feel you are not being consistent. Nobody worries about teaching their infant to clap, yet they usually know how to clap long before they ever know how to vocalize words.

Be Attentive to his motions. For example, "eat" is tapping the lips with your finger tips. If you notice his hand is by his mouth--even if he is not necessarily trying to sign--praise him and sign "eat" and then give him some food. And there will be times when he is purposefully signing something for the first time, and it looks nothing like it--the first time Jimmy signed "please" (a circular motion on the chest with the hand), I pulled his shirt off thinking he had an irritating rash or bug bite on his tummy.

Babies adore being talked to, and even more so when there's animation involved. They also love to imitate, and you have no idea how exciting it is when it "clicks" for them. The look of sweet baby pride on their face when you squeal and clap and do jumping jacks over their accomplishment is seriously priceless.

You can sign every word you say to him, or you can just stick with certain, select words. I just kept it simple for me... Jimmy's main reason for crying is to tell me he is hungry so most of his signs revolve around food. The words he knows how to vocalize ("mom", "dad", "puppy", "baby", "hi", etc.) he has no interest in signing, and that is fine. I just want to know what he wants to tell me.


I love that Jimmy has this avenue to tell us what he wants. One night, after he had finished a small bottle of milk, he kept signing "more" and "milk". I, being pre-occupied and thinking he had had enough, did not pay attention (yeah, really not a good idea when you're trying to promote communication and sign language). He didn't even whine. He went and found his empty bottle, brought it to me, deliberately pressed it into my hand, wrapped my fingers around it and looked me in the eye and slowly signed "milk". Of course I couldn't help but giggle and feel properly admonished. I kissed his cute little sober face and fulfilled his wish.

Here's some of the words Jimmy knows... (try not to let the adorableness kill you.)

"eat"

"all done" --technically supposed to use two hands, but he likes to cheat

"more"

"please"

"milk" (only one hand is necessary, but he always uses two!)

 His latest thing is putting signs together--"more please" or "milk all done". It is SO cute. 

And now I believe I shall have to go get him up from his nap because all this writing about him makes me want to go revel in his cute, smart little self some more.

Cousins, December 2011

Kailyn Rose, 3 Months

Meet Kailyn. Beautiful, sweet, 3-month old Kailyn. 

Soft fluffy hair, sky blue eyes, winning smile and darling personality.... Ahh! I love this child! I don't think I have ever had more fun taking infant photographs. She was just perfect, as you are about to see.

James Teagon, 1 Year

Dear Adorable Little Boy Whom I Get to Call My Son,

How is it that you are one year old already? How is it that you can make our lives so rich with love, laughter and adorable peek-a-boo's? How is it that we ever thought life was great before you entered it? How could you be so cute? How could you be ours? How could you be loved more?

My Dear Jimmy, Thank you for entering our world and filling it with the delights of your smart little self. Thanks for a great year of being your parents. We are so lucky. Mommy and Daddy love you, my sweet!

Jimmy's birthday was October 29th... I'm just late in getting this post up.... Terribly late. :)

McKeen Family

This is a beautiful family. Sweet, sweet kids with a mom and a dad who still think they're honeymooners. I want to be like them in ten years! It was my privilege to shoot their photos at their beautiful home. 

Meet the McKeen family....

"As heirs together of the grace of life..." (I Peter 3:7)