Down the Road

I do not think that I can adequately express what it feels like.

To breathe.

To just enjoy.

To not have a cloud draped delicately over our heads.

Four years ago today we sat in a room at the children's hospital with a team of doctors, our parents and a Carousel nurse.

We were told of the "couldn't"s, we were told of the "wouldn't"s.

We were told that it was ok if we chose to do some things that we gratefully have never had to seriously consider.

It was Bryan's birthday. We left our hospital "home" to "celebrate" with pizza that night returning to a world of unknowns that evening.

We still have many unknowns, but also many healed scars.

Today is Bryan's birthday again.

But tonight I will go home from my first day of work back from maternity leave and hug my four year old and her brand new 6 week old brother.

And I will really celebrate.

(Over)Due

Obviously this blog has been terribly neglected over the last several months. You all are long overdue for an update.

There has however been a reason...(which those of you in real life know)

Kelsey is set to be a big sister any day now.
My due date has come and gone.

She is super excited about being a "helper" and laughs when we talk about baby brother crying "wa wa wa."

I think this will be great for her, though an adjustment for all of us.

Here is a video of her "playing" with Baby Brother the other day.



Any prayers for a positive, "normal" labor and delivery experience would be much appreciated.

Bridging two worlds

I have made the intentional decision since Kelsey was a baby to give her as normal of an experience as possible. I am sure that initially it was my intention to somehow defy all odds and "cure" her of all of her challenges by putting enough effort in.

It has slowly evolved into a philosophy of acceptance of Kelsey's limitations, but desire that she be challenged, and challenge herself, to not stay at the level of low expectation that some might have for others in her position, but instead grow into a independent, productive girl (and someday, lady).

These goals have brought me to situations that I might otherwise like to avoid.

Honestly, it hurts to see your child struggle to do things that should come easily to them, but it is an entirely other level to put your child in with her typical peers and to see first hand everything she should be doing, saying, being.

But ultimately it does no one any good to pretend that the "typically developing" world does not exist and choose to bury your head in the "look at how good she is doing compared to how she could be" special needs world.

We take Kelsey everywhere with us. We do not not go places because of her special needs. In fact, we probably seek out more sensory and fun activities than we might otherwise do.

In November, Kelsey took the biggest step thus far in pushing into the world of the "typicals."

Kelsey attends a community preschool at a local church with the support of school district staff and an incredibly loving teacher, director, and staff there.

It has been the most heartwarming and, at times, heartbreaking thing we have done for Kelsey.

It was not the easy path. It was not the "normal" placement for someone with the physical disabilities Kelsey has.

Yet it is the only path that I felt right for my girl.

(we are blessed to be able to continue services at her private special needs school so we did not have to sacrifice therapy for placement here)

Kelsey loves to go to preschool. The kids are absolutely wonderful together. They were quick to accept Kelsey and call her their friend.

Kelsey has blossomed there. She is so talkative about it. That is the place that she most often makes her walker "go" all on her own. She is attentive and excited about going and being there.

She has been to a birthday party of a classmae. She has been called "my best friend Kelsey that God sent to me." Her classmates help her motor through the actions to songs. They get right up close to her to talk to her and engage her. They help her "catch" the ball and wait for her to drop it ("throw") it back to them.

Kelsey has done all of this on her own. It is amazing to me. After facilitating all of her interactions (mostly adults) for the first three years of her life, here is my spunky, opinionated, nonverbal daughter developing relationships with "typical" peers with help from no one.

Last night I went to a girls night out event at this church and spoke briefly to the mom of a boy in Kelsey's class. She was so nice to me. She commented on how well Kelsey was doing in her walker. She said it was so good for the kids to have Kelsey there because of the compassion for others and kindness it helps them to learn.

I know this is true.

I know that if I was in this mom's place with my son, I would feel the same. I know that diversity does make us all better for having experienced it. I guess I just wish it wasn't my little girl that was the carrier of the message.

I also know, in some ways, it is an honor for Kelsey to be the carrier of that message.

Kelsey is so close to being just another kid and yet in some ways so far.

I yearn for the time that Kelsey will be able to fully verbally (or with a communication device) be able to express all that she is.

The fun parts, the sassy parts, how smart she is...

That she will be seen for who she is and not the equipment she uses.

That she will be seen for everything she brings to the table in spite of her disability and not because of it.

Checking Out

Sometimes it is so frustrating to be Kelsey's parent.

I absolutely love her dearly.

I could do without some of the baggage that comes with her.

Kelsey continues to cognitively progress.

I have not, however, seen much progress in other areas.

The questions, then, that come as a result are:

*Is what we have been/are doing still effective?

*Do we need to change course and try a different technique/environment?

*Is it valuable to continue to pursue everything we are pursuing or would Kelsey be happier just being a three year old without a vigorous individual therapy schedule?

*Are we spinning our wheels, the wheels of Kelsey's therapists and Kelsey's own by continuing to follow these pursuits?

*Would Kelsey develop the same skills on relatively the same timetable regardless of our action or inaction?

*Would scaling back our schedule cause her harm?

The problem in all of this is that there are no easy answers.

I do know that this is a marathon that I have too often treated as a sprint.

And yet the fact remains that Kelsey has far exceeded medical professional expectations of her at birth.

Is that a result of action, therapy, and dedication? Or is it simply the result of love?

Get More: Reality, Kenny Chesney, Kenny Chesney Videos

A Repeat Visit

When Kelsey was very, very tiny, a jolly man in a red suit came to our house. (You can read about that visit here.)

Last night we were so very fortunate to get the privilege of a repeat visit.


Actually, we got a small preview of what last night would be like when we ran into Santa John at the Alexandra's House party. We saw Santa across the room, but thought we might not bother him since we knew we would see him at Kelsey's house on Monday.

But Santa saw Kelsey too!

From across the room he exclaimed, "Kelsey" in his big deep voice.

She popped up to attention and she began taking steps over to see him. All the way over Santa was so kind to encourage Kelsey in her walking, throwing in a "Ho, Ho, Ho" here and there.

He was amazing. He told Kelsey he had been watching her website, knew ways she had been being a good girl, and he even commented on her latest squeaky shoe video. Mind you, Santa didn't know we were going to be at the party. Santa just KNOWS.

Kelsey visited briefly with him there and he asked her if it would be ok if he came to her house on Monday. She got a very large grin on her face. This girl is very into Santa this year! He also told her that he would be bringing a very special present for her.

(waiting for Santa)

Last night, Santa arrived much like he did three years ago. You could hear the jingle bells coming up the sidewalk...

Only this time, Kelsey was awake and watching for him. (she was sleeping on his arrival when she was a baby)

Santa held her in his arms. He told her about the jingle bells he carried and showed her how one came from each of the reindeer. We also all learned that Fred is the elf in charge of the reindeer and that Mrs. Claus requests that we only leave Santa two cookies on Christmas eve!

He told her to "Always remember that Santa loves you," just as he had when she was a tiny baby.

He gave Kelsey to Mommy and pulled Kelsey's present out of the big sack he carried.
It was a very special gift!

Santa has to cover up when he is on his sleigh delivering presents and Santa decided to share the blanket from his sleigh with Kelsey! (Santa said that whenever he gives away his blanket a nice family makes him a new one.)

Santa's blanket even has jingle bells on the corners of it!!!

Kelsey snuggled with Mommy as Santa took out his big brown book of good boys and girls. Guess who's name was on the first page?


He went over all the ways she has been a good girl, talked about her teachers and friends at school, and how well she was walking in her Kidwalk and talking with her communication device. Santa even knew that her favorite color was purple!

Santa must be taking good notes!

Kelsey was just delighted with all of this information that Santa knew.
Kelsey got back on Santa's lap for a story about how his sleigh came to be and how reindeer came to be the animals chosen to pull it. (He tried elephants first, but that didn't work out so well.) Kelsey responded verbally to Santa as he told her this story.



Then Mommy and Daddy came over for a picture with Santa and all of us.

Kelsey gave Santa kisses on the cheek and I think Santa really liked them.
It was time for Santa to go tend to his reindeer so I told Kelsey to tell Santa "Merry Christmas" with her Ipad. She did. And then she proceeded unprompted on to the "Santa" folder that I had made for her to talk to Santa with.

She asked Santa "How are Mrs. Claus and Rudolph?"

Santa told us that Mrs. Claus was doing well and that Rudolph was busy working out to prepare for the big night coming up!

She told Santa "Thank you"

Santa said that it isn't often that he gets to make happy repeat visits like ours. It reminded us how very fortunate we are with Kelsey's continued health and progress.

Thanks Santa for everything! and Merry Christmas!

Good Advice

A good friend told me:

Your job is to teach Kelsey about Kelsey and what she is capable of. It is not your job to fight the world to understand who Kelsey is.

You cannot carry that weight.

Teach Kelsey who she is and what she can do and she will continue to astound them.

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Too many times I worry about how people perceive Kelsey. Do they see how smart she is? Do they see past everything to see her gifts?

Can they see what I see in her?

Focusing on just Kelsey and what she believes about herself is freeing.

And that is a big enough job in itself.

Counting Our Blessings

This little girl of mine never ceases to amaze me.

Tonight was the first time we got these puzzle pieces out. It was the first time I asked her to do anything like this with numbers.

Where does she pick this stuff up?

I am so proud.

Perspective

Being Kelsey's mom means that I get to ride a rollercoaster everyday. The problem is, rollercoasters are fun as an occasional treat, but not exactly a desirable everyday fare.

Yesterday Kelsey, Daddy and I went to breakfast. Our waitress asked us when we were almost done what Kelsey's diagnosis was. I told her Kelsey had cerebral palsy. She said her granddaughter was born with an inoperable brain tumor and wasn't supposed to live past 6. She is 10.

I said, "that's great." thinking it is always great to outdo a doctor's prediction.

She said "no" that her granddaughter could do nothing for herself, was blind and had 135+ seizures per day.

I did not know what to say.

She said she had been watching us with Kelsey. That she "took her hat off to us" b/c Kelsey was such a happy little girl. That she wished her "Haley" could experience that.

Someone always has it more difficult than you do.

Get a Job!

Thinking it was time Kelsey started earning her keep, we went to the velvet creme popcorn company. Doesn't the name alone sound appetizing?

Kelsey attended a build-a-ball event. And she made quite the creation. Luckily for us, we went to the latest shift of the day and there was only Kelsey and another little boy. So she had plenty of room and plenty of time to complete her ball.

She thought she was quite the fashion model the minute we put her hair sanitary cap on her.


We had fun and it was definitely a texture (sticky and crunchy) that we don't get to experience everyday.

Funny Girl

I asked Kelsey "Can you show Amy the "play" button?"

She said (pushed) "Yes"

I said "Kelsey push the "play" button"

And she pushed it.

I love her sense of humor.

(I should mention that "play" is up and to the left on her GoTalk which means crossing midline and reaching up high to push the button. So if she would have "got away" with saying "yes" to my question that would have been less work for her. :) )

Adaptive Easter Egg Coloring

Last night we met Fletcher and his family for supper and then for Easter Egg coloring.


We had so much fun!

My goal is to have Kelsey experience as many age appropriate things as she can. I try to find ways to work around the physical limitations so she can still have the cognitive stimulation and experiences that typical kids her age are having.

We started with the traditional Easter egg dye and then some awesome kits that Fletcher's mom, Erin, found at Target.


We also used Ziploc plastic bags and a plastic storage container to put the dye in. We were able to seal the bags with the egg and the dye in them and have the kids squish the egg back and forth to color it. We tried the same thing with the storage container (rolling it back and forth), but for us the bags worked better.

Kelsey thought it was really funny to squish the bag back and forth.

The rollers in the kit above were great to place in the kids' hands and help them/let them roll the dye onto the egg. (The rollers are a spongy material with a plastic handle.)

The stamp kit was also fun to place in Kelsey's hand and help her stamp.

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• I think the combination of the activities made it pretty successful and we sure had more fun than using an old, boring wire handle to fetch eggs out of a cup!
  
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The Harm of Low Expectations - aka "The File"

Kelsey went to a doctor recently. One who last time we saw them said essentially (not in overt words) "See you in 8 mo. I have no hope for your daughter's improvement in this particular area."

Kelsey and I are well-versed in ignoring poor "professional" opinions.

In this instance, I was fortunate enough to have one of Kelsey's therapists accompany us to the appointment. (She was kind enough to offer after I indicated how I felt about what happened last time.)

As it turns out, she was needed. The doctor did not believe what I had to say until it was confirmed by the therapist.

I understand the "professional skepticism" idea; however, I feel that I have educated myself and do not come across as a naive parent just believing what she wants to believe about my daughter.

I know from my own research the odds, percentages, etc of all kinds of things that three years ago I wasn't aware existed. I am fortunate that I have the intelligence that I do and have been able to find the answers, the research, treatments, and equipment that Kelsey has thus far needed.

But what of those parents that sit in a "care conference" with their newborn in the NICU across the hall and believe 100% what the doctors say when they say their baby will essentially be a vegetable? That she has a good brain stem and "will live for awhile"?

What of the parents that accept what a therapist has to say as 100% fact? The parents that believe that their child is not capable or smart because they are nonverbal? The parents that give up hope so as to not be accused of being in denial?

If I would have listened and believed everything I heard, Kelsey would not be who she is today.

Do you know how we know Kelsey can do the things she can?

Because I tried. I offered her the opportunity. I pushed for the opportunity. I researched what might work.

As a parent with a child with "special needs", you can not wait for the doctors or therapists to suggest to you what your child needs or is capable of.

You must determine that for yourself.

I am the one who got the Fisher Price piggy bank and tried to get her to take the coins from me. I am the one who got the knob puzzle, showed it to her and let her try to do it. I am the one that tries to give her a verbal "play by play" of what I am doing so she doesn't miss out...

I wanted to get a communication device to try with her b/c she knew left/right and was using it to make choices. We got "yes" "no" cards and guess what? She answered questions.

Then they brought a three button device (of which we use two) which we programmed to say "yes" and "no" and she accurately answers all kinds of age appropriate knowledge questions --even things I didn't teach her on purpose and gets a "kick" out of having a voice. (She also thinks it's funny to say "no" 99% of the time when asked if Mama is a good girl.)

Finally I sought out a "Go Talk 4" with 4 choices b/c I thought she could do it. and guess what? She can. (can't always get the button to activate the voice, but gets her hand there.) and I am confident she could do more choices at a time if not for her motor skills.

I am so tired of constantly having to prove to everyone that Kelsey is cognitively capable. It seems no one wants to give her the benefit of the doubt and wants to put her in a box until she proves otherwise.

But more than that, it makes me sad because I know that there are other Kelsey's out there whose parents did believe all the bad news....and because they believed, they never tried.

There are Kelsey's out there trapped in themselves, never getting the opportunity to live to their potential.

Kids can't do anything if not given the opportunity. Will there be things that Kelsey won't do? Sure. (just like with any kid (maybe just different things))

But do I know that she 100% won't do the things that I never let her try?

Absolutely.

Does she sometimes surprise me?

Absolutely. (like when she chooses to play with the baby doll when I am sure she wants to put on her beads or when she says "i" on cue to my "hello" or "un" on cue in the Mr. Sun song as if she always can get her words out that easily.)

I knew holding newborn Kelsey in my arms in her room that she was in there. I remember sitting in my grandma's wooden rocking chair, holding her in my arms crying, and telling her I loved her and knew she was there. That we would make it through this. That she fought to get here and I would fight for her now that she was here.

Maybe that has been part of the difference. When we lost Kaitlyn (Kelsey's identical twin), all I could think of was getting Kelsey here "safe". If she just made it to birth, everything would be ok. That she wanted so badly to be here and was meant to be here.

When she did make it, I knew she was a fighter. I knew she had a future.

These are all things I still know and now she can start telling us.

She can start telling her own story.

I hope that some new parent reads this and it provides encouragement. I hope it provides "permission" to believe.

After all, what do you have to lose?

I will leave you with something I wrote last year in response to a similar situation with a professional.

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I must steal "the File".

It is the enemy.

It is what professional review before meeting Kelsey which explains why they expect a certain level of ability. It is the paperwork which gives people misconceptions about Kelsey before she is ever carried through their door.

Yes Kelsey has microcephaly, porencephaly, optic nerve hypoplasia, possible cortical visual impairment, and dystonic quadriplegia cerebral palsy, but she is also a bright and beautiful toddler with unlimited mental potential.

Kelsey is not as scary as her file looks.

Kelsey really does not present (as the medical people would say) as you would expect someone with all her labels to.

She is much better.

Does she have a brain injury?

Yes.

Has she worked a way around it, improving every day?

Absolutely.

Fun with Kelsey

We have been having a good time around here. In fact, as noted by the lack of blog postings, too busy of a time.

Thought I would share some cute videos of Kelsey.

Only watch if you have not exceeded your daily recommended allowance of cuteness!



She really likes the "toes" part right now. I think the stretch feels good for her. She also really likes it when we label all her body parts as we help her touch them.



The Apple Tree rhyme that we learned at school a very long time ago!



Not sure that either one of these takes the place of beloved "Mr. Sun" but we sure did have fun!

Yes, No, Maybe So

Look at my girl go!

She has been doing yes/no cards on a black binder for about a week now. She is really really accurate.

Yesterday her home OT brought out this voice output device. When she was in her corner chair she couldn't quite get her arms to move enough to activate both "yes" and "no" as accurately.

Last night I sat her on my lap, so she had the ability to lean back and then forward. We asked her all kinds of things.

Later I recorded this.

Communication

It is amazing how much Kelsey has been communicating.

Ever since we learned that she could choice make using "left" and "right" reaching, it has really opened things up. She also is way more vocal lately. It could be that her head congestion is finally better or maybe that she sees we really are listening.

We have a cute video that I will have to try to convert of her telling us "ya" to things she likes and "ooH" (no) to if she likes bedtime. In that video, I ask her if she likes dad and instead of her usual "ya" she says "offfv ad" (love dad) It is really sweet.

Yesterday with Kristen, she was ready to be finished with a peg board, but Kristen and I were asking her to do one more thing. She sat there and didn't try. Then she signed "all done" with BOTH hands going high and up. (usually just the right hand does the "all done" sign) and then she verbally said "un" (done)

She is laughing more and more spontaneously and it is absolutely precious.

Can't wait to hear "offv ahma" all the time. :)

Remembering A Very Special Visit

Two years ago, Kelsey was just two months old. We had been given a poor diagnosis at birth based on her MRI on her brain. When we took her home from the hospital at birth, we had Carousel coming to see us weekly to make sure that she was growing, etc.

There was a very special man who volunteers his time to come out to the houses of kids who can't or shouldn't be out and in line to see him in the malls, etc.

He was the real Santa Claus.
I can't explain to you what he gave to us that Christmas. Everything was still so new and so scary. I held my precious baby and knew that she was "in" there and that I would find her. I knew that she would "make it" and that she would be ok, despite what we may have been told.

When Santa came to our house, he knew it too. He held Kelsey in his arms like I am sure he has held a thousand before. He was so comfortable with her and with us. He had jingle bells you could hear coming down our sidewalk before he rang the doorbell. He had a key around his waist for those without chimneys. He was the real Santa.

He told the sleeping baby Kelsey to "Always remember that Santa loves you." and we felt loved too.
I got his address thinking I would get a thank you off to him. Somehow in those early, overwhelming days there was never enough time to do that. But I have thought of that visit often.Today, I found this website via some other site, clicked Kansas and sure enough Santa John is there spreading more love and hope than I can explain.



Merry Christmas Santa!

This Week's Thankfulness

* I am thankful that Kelsey was able to hit the button of a toy while sitting without help and only being supported at the wrist of the opposite hand. (And I am thankful that Mo (her PT in class at school)suggested trying this!)

(Related to this I am so very glad at how much stronger Kelsey's trunk muscles are getting)

* I am thankful for how much Kelsey loves all of her teachers.

It was such a joy to see Kelsey with Debbie at the Christmas program and how excited she was after 3-4 weeks without seeing her.

She just has so many special people in her life and I love that she loves them and works so hard for them.

* I am thankful for how much more she is "talking" this week and how much more opininated she is these days. (I *think* I am thankful for that ;) )

* I am thankful for the progress she has been making in the last six months, that she now has some pretty good ways to communicate her wants and feelings, and that she continues to grow and learn.

* I am thankful for the Christmas program for her school, how cute she was as a little Christmas elf, the opportunity she had to be on stage, and the visit with Santa Claus!

* I am thankful for the children that are older than Kelsey that I get to watch grow and achieve. It gives me so much hope for Kelsey's future.

Daddy's Unedited Notes for your Reading Pleasure

Daddy’s Raw, Unedited, reports on Kelsey… for your reading pleasure, since it’s 3 months of misc. items:

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Kelseycan. She walked from the office to our bedroom with Kelly holding her under her arms, right leg, left leg. I massaged her right leg and behind her knee, and it would coax her on, relieving the excess tone. She had been laying on the floor, on my stacks of sorted papers, but she was having fun with them, so I couldn't see moving her. She was just moving all over, messing them up, wrinkling, etc, lol. She played with her Penguin, and would punch it move it, talk to it, and laugh loudly when she made it talk. First time I have seen her play by herself that way and be happy, totally entertaining herself, and enjoying it all. She would look at me for encouragement, and same, had done that at school yesterday, paying as much attention as if to say, Daddy, are you seeing me? Tonight also, after prompting her just twice, she said Boo, very distinctly, with the Ba sound! We both screamed Yeaaah, Kelsey, woo hoo, which led to a 3 minute pout and near tears. She just is not sure about over excitement, and we think she thinks we are yelling at her, and doesn't seem to matter how much calming her, that even seems to make the lip stick out further. 11/12/09 10:59p

Kelsey watched me play a video game, the historic games of pacman, galaxia, and a couple others. She was just watching, and talking, and when i got done, or the ghosts were chasing, and about to get me, she would say, OHHHH, OR GO! Laughed at music between levels, or the sounds / movements of me turning around and eating the ghosts. In Galaxia, she would talk when the bugs would come down to chase me. She is very smart, sees well, and shows anticipation, and reaction. 11/5/09 2:02a

Kelsey ate a 4 oz food jar in 12 minutes! yay Kelsey. She has just ate and ate today!10/29/09 12:00a

Kelsey 10/19/09, was hungry, just waited to feed her when she asked rather than wasting time trying to force it to her. She had been good all day hanging out, and i had a bottle sitting by her, and she laying on the floor, kept looking over her head at it and kept moving that way, got to the point she was at it and was sucking on the outside of the bottle, knowing that was her food and she was hungry. So neat to see acknowledgement and desire, and doing what she could , problem solving as best she could, on her own, to fill the need.

Kelly was kissing on Kelsey, and she spontaneously said ama, i uv ooo. 10/15/09 7:34p

Kelsey tried out the completed crawler i made, and loved it, moved all around the entryway. The night before, we were in the hottub at the hotel chuck stayed at, and for about a1.5 hours, she just kicked, and talked and walked, and moved her arms and legs. I was feeding her a bottle after her crawler time, and after asking her all done or more bottle, she said done bottle. 9/30/09

Kelly, Kelsey, and I went to the park with the fishing lake in Olathe. We found a dock that was vacant, and after introducing Kelsey to the lake view, having her be pretty mellow, I finally laid back on the deck and let Kelsey lay on me. Holding her, I relaxed completely, got into a trance zone, and prayed about Kelsey, "I am grateful for her making all her nerve connections, growing, learning, and achieving new things daily. I am grateful for her quickly learning how to walk, talk, crawl, do all her motor skills and having all her muscles be fully functional, and being able to feed herself." Some kids came to fish, and took a bit away from the trance/zone I was in, so I sat up and held Kelsey on the dock. She was sitting with her knees bent, laying against me, with her arms pulled up high on her chest. I considered the possibility of the kids casting poorly as I used to, so after a few minutes, decided it best to leave. We had her touch her face, she was licking at her hand. I moved her hand around and told her to wipe wipe wipe the mouth off. Kelly looked at Kelsey sitting there and said, "you know, with her arms up like that and her hands now working better, she could feed herself a cookie". Hmmmmmmmm. So we got home, and finding a way to keep her elbows up, she was holding a cookie close, and she just kept pecking at it, moving her arms a little, and moving her head toward it, to bite it. 9/7/09 5:02p

kelseycan Concerts Kelsey Attended, brooks and Dunn, Gary Allen aug 09, Mark Wills-Santacaligon 9-5-09 8/23/09 2:13p , Lonestar 7-08, Eddie money 8-09, Jo Dee Messina 8-09, 6-09 country in the woods Corporate Woods, Emerson Drive

George strait has a song, I Saw God Today" Every day looking at Kelsey, I see God's Miracles. I have never been religious. I believed, and I know right from wrong, and mostly, follow the right path, and endeavor to do so. It can cost you in the short run, but in the long run, all you have is your word. You may make mistakes, and you need to forgive yourself for those you have made, and move on. Some struggle with, including me, with times such as having Kelsey, actually, first it was the loss of her twin sister, we named Kaitlyn. Not having kids, not really caring if I did or not, as it had been difficult for my wife to conceive. I was fine with whatever happened. And then, we found in the clinic that day, that it had. And I knew the moment I looked at the screen. (actually, I thought it was triplets, but the third item was the placenta) Can you say shaky knees? All the emotions; wow, how, now, and holy cow! what a miracle! And then, it was cut short, just about 15 weeks later. And so one. I was sad, disbelieving, and really, just numb. Really, seeming, no emotion, just empty. The most amazing miracle, just got cut short. Was it something we did. We did everything for those babies. All the foods, reading, talking to them, I was at every doctor's appointment but one. The one right before the one where we found out the bad news, that we had lost one. From the time we heard the news, and they said CP. I had the worst feeling, with stereotypes in my head of what that meant. sitting in the car at the parking garage of the children's hospital. I thought, not my child. How? Why? This little angel that slept on my chest at the delivery hospital her first night, seemed so normal, so perfect. This smart little girl who we played with in utero, counting, calling her baby bonk bonk because she would kick and count, One time I poked at her 80 times, and each time, she would kick or poke back, and we counted. However, that was pretty much the only time, in that garage, that I really feared, because at that time, I began faith path, that my little girl would be fine. Thankfully, for two friends, one with an autistic child, and one that works with developmentally challenged children. I think just holding her that first night, making a connection, told me she would help me, and I would help her. All the subsequent doctor's meetings just seemed like a waste of time. Oh sure, she has had challenges, we have had fears, as many parents do, yet we get through them all, and always will, because we, and she, are blessed, and watched over. It is not our choice, we were chosen. Many times, Kelly says why us, after all that we have done right, and you see so many people, drug abusers, etc, that you would think would have children with problems, yet they seem just fine. Then we decide we were chosen for a reason, for a higher reason. We are strong enough to deal with this, and this little girl needs us as much as we need her. Those other people we see would never be able to handle the diagnoses, the time out of a job, etc. It is very difficult for us, and financially, we have struggled recently unlike anytime. Our decisions sometimes seem flawed, yet are very correct, in that this is most important. This is my new passion, because I feel this message is to go out, and I am strong enough and talented enough to get it out. This little girl is a miracle, and I am a witness to God's miracles daily, and that is something I don't know how long it would have taken me to understand outside of this situation. We are to spread the word, and help those less fortunate in belief, knowledge, etc. I have many inventions, business ideas, and passions on my plate. But I feel as of today 8/31/09 4:44a , that this is my purpose, that God wants me to fulfill. I am grateful for anyone's help with this adventure, and we get alot, from some of the most amazing places. God is providing, through sources that really kill those prejudices, or sacred cows from my past. I am a true believer now. Believe and see in the good in any and all people. I am not trying to in any way be preachy to you. I know how some may feel, I felt the same way. I just endeavor to assist you to find the miracles in your life, that may be right in front of your face. I am just a witness for daily blessings entering my life. A catalyst for my talents and abilities. A path for my random creative thoughts. To show people what is possible. Being another source of helpful and hopeful information. Helping you see the answer is within you. In your heart, in your mind, in your connection to your surroundings, the universe, God. You just need a path to find it. 8/31/09

Tuesday Night we ate at Jose Pepper's, and Kelsey sat up well, by herself, looked as if she was falling forward, then caught herself, set herself back, and smiled. Doing it several more times, she would laugh. "That is my new trick...Balance!" Many bites of refried beans, some rice, although didn't quite know what to do with that. Most of everything stayed in. Really seems to like the cornbread! Eating like a big girl. Mommy says "Soon, we will have to buy her own kids meals." [1/2 hour to write these posts! not complaining, just...wow. 1/2 hour to review all that Kelsey did this weekend. all the smiles, all the joy, and accomplishment, pride, excitement. relief. all reviewed, in 30 minutes, really, writing all about the fair would take an hour.] IT is so nice, and refreshing, to see her. I have always been a quiet champion of Kelsey, and knew she would be able to do whatever she wanted. I have always believed. It is so nice to just see what seems like all these switches coming on. She will be walking, crawling, etc, just soon after 2 years. Just seems like such a little person now. Just so connected to her now. It could be difficult for someone to do anything other than work with her, while seeing these great results! I think that is the best thing for her. IT is a blessing that we don't have someone to watch her, and just include her in everying. Looking back, I told her the other day, asked if she knew how lucky she is. I asked her if she knew any kids her age who had gone to Disney, on a cruise, to a different county, to concerts....heck, I think I just figured out she has been to more concerts than I did prior to 21! Likely more in 23 months that I did in 23 years! I think she just gets to see and do so much, it is helping her grow and see all she could be doing, where most kids in a similar situation would see minimal, and "normal" kids would just be home with a sitter often. I think this is paying off for all of us. I think we have more fun including her and showing her things than just doing it. Sure, away time can be nice, but I get alot out of having my little buddy just constantly looking around, and looking up at me and smiling, talking, having a great time. I am blessed. 8/26/09 7:45a

~Daddy

For AJ

Kelsey didn't feel like doing this for AJ and me in the pool today...

But boy did she later...

What I Decided to Do Today (Wordless Wednesday as some blogs like to call it)

(ok if you know me you know I can't leave it without words...Kelsey did independent "side sitting" for at LEAST one to two minutes before repositioning and probably a total of 5-7 minutes!)