Video of SK

I took this video recently of Sophie Kate with her little Christmas kitty that plays "Jesus loves me." Chad and I were in the kitchen cooking and SK was holding her little kitty and kept squeezing it over and over making it play it's song. She was in such a sweet little mood, but I guess once I got the video going she was totally over making it play music. Little stinker only did for me one time on camera and y'all she had been making it play over and over just before the camera was turned on...isn't that always the way it goes. Anyway, here it is in all it's unedited glory...

SK and her kitty from Amye McManic on Vimeo.

I have no idea why my voice went supersonic. For heaven's sake it's like at that high pitch that can only be heard by dogs and cats. I don't know what came over me, but for the love someone please tell me that's not what I really sound like.

For the Love of Reading

I took these pictures of Jacob reading a book last week.



Isn't it awesome to see that kind of enthusiasm for reading...



So encouraging to see his excitement for the written word...



Ah yes, I knew it...it had to be something about bathroom humor, making certain unmentionable noises or pulling down someone else's pants...bingo!



They are boys after all, they just can't help themselves!

Predictable-it's not a bad word

Guess who's getting a haircut this week? Oops, was that last week or is it me? Oh yes it's me. I know you are all giddy with excitement, maybe I should take before and after pictures like I did with SK last week, ha ha. Nah, there's no way I could ever measure up to that.

Nothing of news to report going on around here this week. In fact, lately we have been able to string together lots of "not much to report" weeks and I love it. Chad actually said to me over the weekend that "the next time I went in to see Dr. Barron (our pediatrician) that I needed to talk to him about..." I said, "how about I just call him b/c I am not planning on seeing him anytime soon," and believe me as much as we love him, that's a good thing.

You know, when you spend everyday with someone (i.e. SK), you don't notice the changes that are taking place until someone who hasn't seen SK in a while points it out. Here's the thing that someone asked me recently..."isn't SK more manageable and her days, for lack of a better word, more "predictable" than they were the first year of her life?" I have to answer with a resounding YES!!" While I was hoping for her development to be further along I do have to admit that she is on a pretty good schedule that is manageable for our family and that is a wonderful place to be when I think about the trials we faced in Sophie Kate's first year.

There are so many things that I long for and ache to experience with my only daughter, those who know Sophie know what those things are. I have also wanted to be able to go out to eat as a family with her and we are able to do that now in the evenings if we so choose, there was a period of time where that wasn't an option. We spent many Sundays going to church as our "divided family" as I used to call it, now it's rare that our family misses worshipping together on a Sunday morning...definitely something to be thankful for.

Even though we haven't heard her sweet voice yet, her smiles tell us she is happy, content and comfortable. She was so good during all of the boys flag football games last fall and has been equally good so far through this season's basketball games. I am so thankful for that...it would break my heart not to be able to go see my boys do their "thang."

So, I know in my head that she has definitely come a long way from that very difficult first year. Now I need to get my heart on bored with that...it is still so very broken. I am praying that God will perform a work in my heart and that I will be open and obedient to it. She deserves 100% from me, she is so precious and holds my heart in such a tender way. Her darling little happy self deserves everything I have to give in a whole and healing kind of way.

"Those who sow in tears will reap with songs of joy. He who goes out weeping, carrying seed to sow, will return with songs of joy, carrying sheaves with him." Psalm 126:5&6

It's been one of my favorites for quite some time...thanks for checking in on us.

The Debut of the new "Do"

My girl's morning at the salon.

Still long, getting the wet hair ready to be cut...








It's short Sophie...







Still being fussed over...



Still curly...



She looks like such a big girl...



Once we came home from therapy, I gave SK a bath and this is what her hair did afterwards...





Sweet and Sassy...



There was lots of excitement and fun surrounding SK's first haircut, there was really no time to be sad. My eyes did well up with tears once I saw the finished product not b/c I was really sad. It was just emotional to see her with her new haircut, she just looked older. She is older, it was time and this new "do" suits her toddler self perfectly.

Thanks for checking in on us.

Guess Who?

Guess whose getting their first haircut tomorrow?!? That's right, it's another milestone for our girl...her very first haircut.

Let's reminisce over the many styles that have been so "SK."

There was "the fuzz"



Oh baby girl, 6 months later and still not much more than fuzz...



One year old and finally enough hair to put a little bow in, it's even starting to curl up a little in the back. It's funny to look back and see what little hair I would put a bow in, it makes me laugh. I was so excited for her to wear that first bow.



SK's first pigtails...



The whale spout, look at all the curls she was starting to get...



Those sweet baby curls...



Bedhead...



and lastly the "I'm a two year old now" french braids.



Now don't be sad, I'm not. In fact I am very much looking forward to doing this with her and also it doesn't hurt that she is on a major mega vitamin and her hair grows like a dang weed. So whatever happens tomorrow will grow out pretty quickly but I can't imagine that it will be anything but perfect on her.

So here's one last look at her two year old uncut baby hair...



oh yes I really am...



and SK is super excited about it...



Check back later, the new "do" will be making it's debut in lots of places around town tomorrow and on the blog asap.

It's sooo fun sharing the fun stuff!

Welcome to Holland

I read this little story for the first time not long after Sophie Kate was born. It is beautifully written and I am now at a place where I would love to share this with all my family and friends who do not have a child like Sophie Kate.


WELCOME TO HOLLAND

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability, to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans...the Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books and you must learn a whole new language. You will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Normal

It definitely feels like we are back in school now. I know the kids went back last Wed. but with the snow and then school letting out early one day and then school starting late the next day, it didn't really feel like we were back in school. I'm sure the teachers didn't get much accomplished with the snow crazed kids they had on their hands. This week really feels like we are back in the swing of things especially since SK is back to her regular therapy schedule.

I miss those boys so much. We had a wonderful break and I am so sad to see things go back to "normal." There certainly isn't room for boredom when they are around and although I am tired and weary by the end of the day, they don't allow for my thoughts to wander into dark places. There is no question that they lift my spirits. I don't cry around them and I try my hardest not to let them see me sad, there is no time to dwell and worry about the future. We usually just go from one activity to another with a few stops along the way for food and for me to take care of their little sister. It almost hurts, I miss them so much.

We had a visit with Sophie Kate's vision therapist this week, we only see her about once every 2-3 months so it certainly isn't a regular thing, but it is always an interesting appointment. There is nothing "normal" about what we do with SK, yet everything we do is "normal." I know y'all think I have lost it, but let me explain.

There is nothing "normal" about feeding your baby through a gtube, there is nothing "normal" about constantly combating muscle stiffness and seizures. There is nothing "normal" about giving your baby 5+ different meds multiple times a day every day, but then there is a flip side to that. Everything we do with SK is "normal" to us, it's just a part of every day life. I guarantee you little Grey doesn't know anything different. It's all been a part of our life for over two years now.

This week with the vision therapist, SK did something very "normal baby-like," if I can put it that way and it tore me up, kind of in a good way and in a bad way all at the same time. We were trying to get her to reach for her new little stuffed kitty. She was trying so hard with the limited movement that she has in her shoulders and arms but in her own way she managed to reach out a little and touch the kitty. When she did her chubby little hand opened up and she grasped and held the kitty to her. Those of you who are around SK know that she keeps her hands pretty much in fists, but when she felt the softness of the kitty she opened up her hand to touch it that way. It was so sweet.

I am sure that some of you who have talked to Sophie Kate in the past 4 months or so have noticed that she is focusing more on people when they are talking to her. She really enjoys the social contact and is recognizing more when someone is calling her name. The vision therapist wants us work on someone else asking SK "Where's mama?" and then seeing if she will look for/find me.

I think all these months upon months upon months of dealing with/learning about all the medical things that I have to do with her have put some of these "normal" baby things in stark contrast. Nothing about SK is typical and maybe just to protect myself, I don't look at her or anything she does as typical or normal. The thought of her looking at me when someone asks where her mama is brings no words to me at all...only tears.

When you have been told so many times that your child won't be able to do anything, letting in tender moments and thoughts about what I so desperately desire, tears at scabs and reopens old wounds. I think it is a self-protective wall that I have put up and I am not giving her credit for what she is doing or what she may be capable of...sometimes it just hurts too much. Thinking that one day she could make a purposeful realization that I am her mother, well...sometimes it is just easier to buy in to what all the doctors are saying, as strange as that may sound.

For me it all goes back to a very real and conscious minute by minute decision to rely on and trust God. It is not easy and it is exhausting but I cannot allow myself to be swayed by whichever way the wind is blowing. I cannot place my hope in anything here on this earth. All of SK's medical team have an opinion about her and a lot of them have made up their minds about what she is and is not capable of. The only safe place for us is in the shelter of the Almighty. At His feet is the only place that I can unload all my feelings and emotions and in exchange receive healing, joy and hope. The kind of hope that will lead to an eternity filled with the sound and song of my baby girl's voice.

"Blessed be the God and Father of our Lord Jesus Christ, who according to His great mercy has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead, to obtain an inheritance which is imperishable and undefiled and will not fade away, reserved in heaven for you" 1Peter 1:3-5.

What does she have?

"What does she have?" It's a question that I have been asked concerning my little girl. I know I am too close to the situation, but at first/quick glance I don't think SK stands out too much in a crowd, besides the fact that she is darling, of course. Now, I would say that in the past six months I have been asked this question more often. So it seems like people are starting to notice something, so I get a variation on the question, "What does she have?"

I guess it seems like a simple enough question and in retrospect I guess there is a simple answer, but not to me. To me it's quite the complex question and I still find myself at a loss when trying to answer it. It's not that I am upset by the question (well, not anymore), it's just that it still catches me off guard. I know, I know you're thinking the answer is cerebral palsy, right? Well, that doesn't let anyone know what my girl has.

She has a Mama and Daddy that love her to pieces, she has 3 brothers that adore her. She has 4 grandparents whose faces light up when they see her and talk to her. She has cerebral palsy. She has an extended family that are crazy about her. She has a church and community that love and support her. She has a gtube. She has friends that will do just about anything for her. She has a Savior who loves her more than we can comprehend. She has seizures. She has a smile that makes the world a better place. She has an unbelievable wardrobe. She has kidney stones. She has the most beautiful brown eyes. She has the inability to walk or talk. She has an understanding of things that we may never fully know. She has a love inside her that is WAY bigger than her little 30 pound body can contain.

So you see that answer is hard for me...she doesn't just have cerebral palsy, that doesn't begin to describe my girl.



Thank you all for understanding and knowing that she is so much more than the diagnoses that the medical community/society uses to define her, sooo much more.



Romans 8:24-25 "For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what he already has? But if we hope for what we do not yet have, we wait for it patiently."

The Zip Line

The boys had a fun adventure at PawPaw and MiMi's house while we were there after Christmas. My brother-in-law had built a tree house complete with a zip line out behind by parent's house. Tree house + zip line + 4 boys and 1 girl = enough said.

First Cooper...



Then Jacob...



and then, you guessed it, the g-man...



Y'all, I was totally shocked that he actually went through with it. I wish y'all could understand just how high up he was...



Does this help? Ha, Ha!



He was so proud of himself, as he pulled the rope back to the next cousin waiting...





I was able to get Cooper and Grey on video, but by the time I decided to do that, Jacob had gone inside, it was very cold that day. He's the middle son and here I go contributing to even more of his "middle child" troubles, I'm just awful, but here goes anyway. It's a bit shaky but I did it on my camera for crying out loud.



Now for the g-man, I would tell the grandparents to look away right around this time, but since two of them were in attendance...well then I guess they are as much to blame as we are, huh?



What fun, they had an absolute ball. Can't you just hear them now..."Daddy, we want one of those in our backyard." There's never a dull moment with those 3 boys and that 1 little girl.

It's a New Year

Ahhh, the fresh start of a New Year. The Christmas decorations have been put away and the house has had a good cleaning as everything has been put back in it's place. I have plans for this to be the year of "reorganization." The storage area in our garage is about to stage a revolt and start spilling over into the house, it must be conquered. Closets must be tamed, the kitchen cabinets need to be addressed and I don't even want to think about the stuff in the attic. You know it's funny, when Chad and I moved into this house 10 1/2 years ago we didn't think we would ever need to use the attic b/c the house had so much storage. Now the garage and the attic are both full, I guess that's what 10 years and 4 children will do to a house, huh?

I feel as though a look back is in order just to see where we have come from and where we have been this year. The year started off a bit rough for our girl, she continued to deal with the never exiting kidney stone, seriously I think we are going on a year and a half now. We also found out in Feb. that SK's fundoplication had come undone and on Feb. 26 she had her second fundo surgery done. It was an extremely rough recovery the second time around and I pray that this one holds and stays intact. If you are confused by this big long word, there is an explanation of what it is on the right hand sidebar of the blog under Sophie Kate's Diagnoses.

March brought a much needed Spring Break as well as Grey's 3rd birthday. We also went to our first CP (cerebral palsy) clinic with SK, that was a tough one but we did get to see one of our doctors along with lots of therapists and a nutritionist all at one visit, it was another first on this journey with our girl.

April and May were just one huge baseball blur and that was with only 2 boys playing. Spring 2010 there will be 3 boys playing baseball, SK get ready for lots of time spent at the ballpark. April 13 was Sophie Kate Day at Chick-Fil-A. I can't say enough about our God, our friends, our family, our church and our community that made that day so sweet and memorable for our family. Your outpouring of love will never be forgotten.

Our summer was spent making sweet memories...SK's first VBS in our church's first ever Special Needs VBS class, compassionate teachers who loved and cared for her and gave her some new experiences. There were baseball camps, swimming at Grandma and Grandpa's house, a week long trip to Smith Lake and a certain 6 year old that turned 7. Chad and I celebrated 12 years of marriage this past summer too. I don't want to brush by that or take that lightly. Our marriage has never been under such strain, stress and neglect as it has been over the past two years. There is no one I would rather be on this journey with...this man, this husband...you know, my baby daddy.

Sadly August came and brought with it...school. I sent off a 3rd grader, a 1st grader and a 3 year old preschooler, sniff sniff. The fall wasn't entirely easy, but our Father uplifted us, strengthened us and brought us through. SK's seizures came on strong and right before Thanksgiving we had to put her on seizure medication. Oh, I remember the day I found out she was having seizures it was heartbreaking. As if enough wasn't enough, Jacob had his ear surgery in which a huge cyst and all of his hearing bones were removed from his right ear. That was a rough 4 1/2 hour surgery, but he did fantastic. Jacob's a tough one. Bless him, he's still facing another surgery in 2010.

It wasn't all bad, we had lots of bright spots. SK was happy and smiley all summer long and has been on an upswing now for about two months I'd say. We also celebrated Cooper's 9th birthday and Sophie Kate's 2nd. Also, we took a much needed family trip to Chattanooga for Fall Break and I am sure we would all agree that it was a super fun time. It was refreshing and fun and not that far away, the kids have been begging to go back.

Thanksgiving and Christmas were so special this year. We spent them with family, family and more family and it was delightful. All the while, our girl has been an absolute doll. I feel like I can really say that she is enjoying life and we are enjoying her, what a blessing!

I feel like we finally have our heads above water, we aren't just surviving we are living and thriving. God has helped us take another step through this grief process that I had no clue how to move through on my own. He has loved us, held us and taught us in such an amazing, tender way. Our hearts are healing in spite of me. We have encountered Him through this situation and as with any encounter with the Creator and Savior of the world...we will never be the same again.

I would like to leave y'all with the verse that God has used over and over again to speak to me this year..."I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn the darkness into light before them and make the rough places smooth. These are the things I will do; I will not forsake them." Isaiah 42:16.

For the first time I can actually say that we are excited, not fearful, about what the new year holds. Thank you for loving us and continuing to pray for our family.

The Christmas Wrap Up

I am still trying to catch the blog up to real time, hopefully one more Christmas post and a New Year's post will get the job done. This one's going to be heavy on the pictures, hope y'all can handle it.

We celebrated with Chad's family before Christmas on the 23rd and kicked off the present opening with a bang.



Grey got a Star Wars plate, bowl and cup just for him, he was so proud.



The Christmas kiddie table...



Sophie Kate with some of her stocking stuffers, her grip on that lollipop is cracking me up.



Christmas Eve...



SK and Grey enjoying one of SK's Santa presents on Christmas morning. I was video taping a lot of this so I didn't get as many pictures as I would have liked of Christmas morning.



The G-man at about 3 o'clock on Christmas day. I can't even remember when I used to sleep like that, I am so jealous.



We left the day after Christmas to celebrate with my family. This is SK with her cousin Emma Claire, Sophie Kate adores her. Although SK doesn't see EC very often, I know that she knows her. EC just jumps right in with Sophie and as y'all can see SK's eyes light up. For that matter, all of the cousins are crazy about Sophie Kate, yes they ask questions but they have an unconditional love that is just precious none of them can keep their hands off of her, it means the world to me.



More presents at MiMi and PawPaw's house...







Sophie Kate couldn't take anymore...



Once again SK has been an absolute doll, happy, healthy and thriving. This was a very special Christmas for our family with joy, smiles and laughter dominating the sadness of the past two. Thank you Jesus for the joy and the hope you have placed in our hearts.