God Sent to Me an Angel

I just found this poem and wanted to share.  Just a little reminder for us all...

God Sent to Me an Angel

by: Paul Dammann

God sent to me an angel,
it had a broken wing.
I bent my head and wondered
“How could God do such a thing?”

When I asked the Father
why He sent this child to me,
the answer was forthcoming,
He said “Listen and you’ll see.”

“My children are all precious,
and none is like the rest.
Each one to me is special,
and the least is as the best.

I send each one from Heaven
and I place it in the care
of those who know my mercy,
those with love to spare.

Sometimes I take them back again.
Sometimes I let them stay.
No matter what may happen
I am never far away.

So if you find an angel
and you don’t know what to do,
remember, I am with you,
love is all I ask of you.”

And seven months later....

...Kennedy got her iPad yesterday from school!!  While she doesn't yet have all the apps on it, she does have a few lite versions of apps to use over Christmas break.  Let me just tell you that my girl has not put the thing down for the last 24 hours!  She is reading books on it, playing math games on it, and spelling words---and she is having fun!! She has no idea she is also learning which is just amazing.  She's also been working on getting familiar with the keyboard and is getting pretty quick at typing her name.

When the week started, I had no idea she would be able to bring it home with her over the break, but I was hoping she would be able to work on learning how to maneuver her way around on it.  The technology assessment happened a month ago and I had to track down the report from Spalding University because it apparently never made it to the school a week after the assessment.... But I emailed Spalding (who did the assessment) and two days later the school had the report. Not sure why it was so easy for me to get it taken care of, but not so easy for the school.  (I have my thoughts and those close to me know my thoughts, but no need to post it here) :)  I have definitely learned that if I don't advocate for my child, no one at her school will.  Who would have thought when the iPad was suggested for her in MAY, it would finally be in her hands by the end of DECEMBER??  Now 1/2 a school year has been wasted on people dragging their feet.....but the good news is she has it and we are very, very thankful for that!

In other news, it should be just a matter of a couple months before Kennedy can begin receiving MPW services.  We have sent in her budget and we have some fantastic people who are willing to work with her so I'm very excited about it!  Also, Kennedy informed me recently that she wanted to change her last name.  I was pretty excited thinking that she wanted to take Jeremy's last name too, but she quickly informed me that she wanted the last name of one of her best buddies.  She already thinks she's part of their family anyway... lol

Lately, I've really been feeling God putting something on my heart-- the need to start a group for Special Needs Parenting.  I hate to call it a support group, but I feel that it would be great to be able to share stories, setbacks, and successes with other parents who understand.  I am not really sure where to start with all of this so it's definitely a work in progress. 

So that's a quick update and I will try my best to update more often now that my computer is fixed.  Hopefully Kennedy will be making lots of progress worth sharing over the next several months.  Merry Christmas to everyone!!

Exciting news!

I realize that I have really slacked with blogging, but we have been so incredibly busy lately.  Jeremy is working CRAZY hours (6 days a week, 12-14 hour days) so Kennedy and I have been spending lots of time together in the evening.  I also started a new job with hours that are a little longer than my last job so our evenings fill up with homework, bath time, dinner, and story time.  Basically, not much free time for Mommy! :)

About two weeks ago, I received a call from school regarding Kennedy's technology assessment.  During our meeting September 8th, I had been told that the assessment should happen within 30 days. When I received the call from school, I was told that the assessment hadn't been done and, in fact, Spalding University was being requested to do the assessment.  An ARC meeting was scheduled and I was so livid.  How had a month-and-a-half gone by and NOTHING had been done?? How had the first semester nearly moved right along while my child struggled every single day with writing, homework, etc? And NOW they wanted Spalding University to do the assessment.  Needless to say, I was not looking forward to the meeting--especially when I was told that the meeting was necessary for me to give permission for the technology assessment.  Did I not do that the first week of September?? 

The meeting went surprisingly well and despite the fact that Spalding is going to be doing a technology assessment for Kennedy, an iPad was ordered that day for Kennedy!  One of the team members said that "if any child needed assisted technology, Kennedy certainly does."  FINALLY!!!  I'm not sure how long it will take to come in, but I am so excited because Kennedy's teacher will be able to send homework to the iPad and she can complete it and submit it back to him--all without struggling through writing!  For those who aren't as familiar with Kennedy's trouble, she struggles with anything involving fine motor skills.  For homework, we have to go through it once for her to give me the answers, then I will write her answers with a highlighter, then she traces over the highlighted words.  (Let's just say it takes at least three times as long as it should with your "average" kid)  She gets tired very easily when she's writing, her letters get larger and less legible the more she writes, and even when she gives it her all, it's still looks like a toddler beginning to use a pencil.  So an iPad will hopefully engage her and motivate her, without all the frustration.  Now, she can be frustrated with the work that gets more challenging rather than having the added struggle with writing.  Of course, we'll continue to work on writing the old-fashion way, but with her fine motor trouble, who knows if writing ever be a strong skill of hers? 

On another note, Kennedy was approved for the Michelle P Waiver.  Thank you, Jesus!!!  We are waiting for things to get started, but I'm beginning to line up a couple people who will be able to work with her and I can't wait.  They are people that Kennedy loves and they love her so I know they will do everything they can to help her progress and succeed.  I'll try to keep everyone in the loop as things get started for her, but I am so excited about things to come.  God is so good!!

Success!

I realize that I am slacking at blogging about this school year and while I've laid in bed several nights in the last month with the urge to get up and blog about something that's happened, I'm honestly exhausted by the end of the day.  It's been a rough few weeks as I've tried to get some issues straightened out at school.  I'll sum up the issue to catch you guys up......

First, we had a meeting May 6th to talk about Kennedy's progress last year and the suggestion was brought to her ARC meeting that Kennedy could possibly benefit from an iPad as she has the most trouble with writing--either legibly or without getting tired after just a few words.  I was told to work with Kennedy this summer about learning letters on the keyboard and just getting her more comfortable with typing.  Well we did that.  And despite multiple emails---many even un-returned-- I tried to figure out what was going on with the iPad since the first day of school.  While I understand teachers are busy, I can't just sit by and watch my child have such difficulty with school when a piece of technology could be so beneficial for her.  I even offered to purchase an iPad if they would help us with the Apps (some of the apps they suggested for Kennedy were big bucks--like $200 bucks-- yikes!)  I was told specifically not to buy one and to let the school do it---but no at the school would give me any information on anything.  Then, I receive an email stating that Kennedy is going to have to go through an assessment to see what technology would be beneficial for her.  Ok, no one said anything about that in MAY. And we had an entire month of May, a summer, and all of August to get any assessments done, but here it is, nearly September, and no progress has been made.  So I emailed the new principal about it, and what do you know, the next morning I was receiving phone calls to set up meetings and plans were being made for Kennedy to try out an iPad in another classroom, and so on.  We have her team meeting on Thursday so hopefully good things will come from the meeting. I just want Kennedy to be a school that is looking out for her best interests and if it's not her current school, then perhaps it's just not the place she needs to be.  While I would hate to pull her from a school that she's been at for 3 years now and away from her friends, I need to do what's best for her in the long run.  I'll just have to make some decisions after the meeting on Thursday.

On a happier note, I sent a referral for the Michelle P Waiver for Kennedy last week.  Before I had my current job, I had no idea about this program, but I think that it would be FABULOUS for Kennedy.  Basically, it's somewhat like the program that my work participates in (and we work with this waiver program also), except the clients can live with their parents/guardians.  It would help Kennedy get the services she needed, such as speech, OT, and PT and also as she got older, the program would help her with supported employment and other things to become more independent.  She should be getting an assessment scheduled within the next week or two and the approval process takes a LONG time, but it will definitely be worth it if I can get her approved.  This is definitely NOT something that is just passed along freely to families of special needs people so if you know someone with special needs people (kids or adults-- mental or developmental disabilities), I'd LOVE to talk to them about this AWESOME program or make sure that they go to the Medicaid website for the Michelle P Waiver. 

And here's the best news I've heard in a LONG time........After a long, stressful week of attempted to study spelling words last week and after an exhausting and eye-opening day today at work, Kennedy and I got home and I was going through her backpack and what do I find.......

....a PERFECT spelling test.  Not only were all 6 words SPELLED right---they were written by Kennedy without any scribe needed!!!!!  So of course, we called all those near and dear to us to spread the news and headed out to Dairy Queen with my mom to celebrate with an ice cream celebration.  Kennedy already knows 3 of her words for this week since we got our list on Friday so I'm hoping that after all the celebration tonight, she realizes that spelling tests can be very rewarding. 

So needless to say, the last month has had its ups and downs, but it looks like things are starting to work out in Kennedy's favor and all our hard work is beginning to show results!  Hopefully I'll have more fabulous news to blog about soon.  Stay tuned.... :)

1st grade kick-off

Today was the 3rd day of school and Kennedy is already less than excited about the school year.  This morning, she ate very little for breakfast despite our begging, pleading, and threatening.  On the way to school she looked at me and said "My belly really hurts."  I could tell from her face that it wasn't that she was hungry, but that she really didn't feel good.  I told her I would walk her in and take her to the bathroom and stay with her until I knew she was ok.  Then she said, "Will you stay with me for writing too?"  I told her I didn't think the teacher would let me stay because parents were supposed to drop the kids off and then leave.  She was really upset by this.  She hates writing because she tires so easily and she has tremors in her hands so penmanship is not her strong point and she gets frustrated. 

We got to school and she slowly walked across the parking lot, clingy to my hand and just whimpering.  I quickly took her to the bathroom and she didn't really have to go.  I walked her to the gym then she begged me to stay with her until her class came out and headed to her room.  I think her little tummy was just upset from her nerves and I just hate that for her.  In turn, I was feeling sick all day myself because I was worried about her.

Fortunately, I already had a meeting scheduled with her teacher for this afternoon so I talked with him for about 45 minutes about Kennedy.  He was very interested in learning about Kennedy and told my mom and I some things he had observed thus far--which were actually good things.  She has been raising her hand and answering questions correctly so far.  She has been chatty with her friends sitting next to her.  He also gave me a couple leads on teachers who tutor kids after school, however I'm not sure that one would be a very good personality fit for Kennedy.  The teacher also told me that the kids will have math homework every night, spelling words to learn every week, and some other reading homework throughout the week.  I could have just cried right there at his desk.  Math is one of the most frustrating subjects for her.  Which means homework time will be less than fun in our house.  Also, the thought of her learning spelling words AND having to learn to write them when she already has such a hard time writing just makes me sad.  I hope to goodness they can get Kennedy's iPad soon so that she can type her homework.  Honestly, I don't know how we're going to make it through the school year without some super-powered tutoring....and any other help we can get.  Please keep Kennedy in your prayers that we can assemble the right team of mentors/tutors to help her succeed this year.

In other news, we had a rough weekend with the Depakote Sprinkles again.  Kennedy gags on whatever food I put them in and makes herself throw up.  It's not fun and definitely frustrating because administering it takes FOREVER. Yesterday before church, Kennedy learned that she could just clamp her mouth shut and refuse it all together.  I had to hold her head up against the wall and literally force her to take it.  I felt awful afterwards, but I knew that we had no choice and not taking it was NOT an option.  So last night and this morning I gave her some of the Depakote liquid medicine that I had left over from before all the medication changes and it was much more pleasant.  So this morning, I called Vanderbilt and told them that for the sanity of my entire family, they have to put us back on the liquid medicine again. So.......we're back to the original two medicines that we were on before our checkup in early July.  Basically we had a month of medication changes for nothing and returned to the medicine that worked the best in the first place.  Talk about a waste of time.  But Kennedy was MUCH happier with taking two medications tonight since it was in liquid form.  When Kennedy is happy---everyone is happy! 

So today had some ups and some downs.  Hopefully we can get through this school thing.  I see MANY sleepless nights ahead......

Accomplishments of the summer

As summer comes to an end this week, I thought I would look back at all the things Kennedy accomplished.  While there were lots of things that I was hoping for----like extra work on the stuff she learned in Kindergarten---she did make some big(to us) accomplishments.

1.  She learned to climb up on the kitchen counters (with and without a stool)--something that I wasn't sure she'd be able to do with her balance troubles.....

2.  She learned how to jump off the counters once she climbed up on them (which is entertainment in itself)

3.  She can now open and close the blinds-- which is awesome give the fine motor skills that requires and her struggles with her hands!

4.  Kennedy also had blood work done this summer---sitting in the chair by herself!  Then had it done two more times with only minimal crying/screaming :)

5.  She learned to open her new medicine and pour the sprinkles into her food without losing too many of them

6.  She's learned to crack eggs open for breakfast

7.  Now, she can get her own ice and water from the refrigerator door

8.  At restaurants, she now orders her own food/drink

9.  Her manners are improving--significantly

10.  She's beginning to test the limits when it comes to things I ask of her-- she's quite the negotiator!  (I'm not sure that's really an accomplishment, but at least she doesn't just let people tell her what to do--she stands up for herself!)

11.  She has enhanced her comedian skills-- that girl can make anyone laugh!

12.  Kennedy can not only open, but also put on her own band aids now (We can now go through a box a day instead of a box in a week..... lol)

13.  She has FINALLY got the "w" sound down-pat without having to be reminded to correct herself! (that's a BIGGIE)

14.  She's made new friends and GREATLY improved on her social skills

15.  She's learning and remembering Bible stories that she's learned in church or that we've read about in our books

16.  Kennedy learned to jump off a diving board AND go down the big slides at the water park this summer--by herself!

17. And today, she went up 3 flights of stairs while I went up in the elevator and she beat me to my office!! Yay for those super strong leg muscles!! :)


I'm sure there are probably more accomplishments she's made this summer, but these are what I can think about on the spot.  I'm sure to most people these are things that their younger children have done or things that don't really seem like accomplishments.  But every single one of these things are tasks that I honestly wasn't sure if she would ever master--at least not for a long time.  While we still have work to do and things to learn, we're getting there slowly and that encourages me every single day.

Growing up.....

In the last week or two, I've realized that my child has definitely developed such a sense of humor.  She may struggle with writing and talking, but she has MASTERED the art of making people laugh.  Just this week, she has came up with some of the wittiest things that makes it impossible to hold back laughter!  I had been told in the past that when she is at school she tries to make the other kids laugh.  Maybe she's just trying to fit in and find her niche.  I may be partial, but my kid is just down right FUNNY!

Kennedy is also getting very curious about Jesus and has been asking lots of questions.  I was never very involved in church aside from my real dad taking me to a super scary church so I'm not always sure of the answers she is looking for when she starts talking about God.  I'm often stumped on how simple she needs things broken down so that her little mind can understand religion.  Even adults have trouble understanding it, how can a 7 year old grasp it at all?  Especially with her black-or-white thinking.  For instance, we were listening to a song the other day on the Christian radio station and she looked at me and said "We sing this at Living Hope!!!"  She was so excited that she recognized it, but then there was a part that said "I will stand upon the truth."  Kennedy looked at me and said "I'll stand on the roof??? That is silly!"  I tried to explain to her what the Truth was, but I couldn't put it into 7 year old terms apparently.  The next song came on the radio.....Hero by Abandoned.  The song starts out talking about Jesus walking the dirty streets.  Again, she looked over at me and said, "Well that's just silly!  Jesus doesn't have feet!"  So I tried to explain to her that Jesus did have feet and he once walked on Earth.  (Trying to break it down super simple)  Then she asked me, "Well why did he walk everywhere?"  And I told her that they didn't have cars when Jesus was on Earth.  She seemed ok with that answer for a little bit, then said "Well does he have a car NOW??"  Hmmm....the questions never end.  This drives me to learn more about the Word so that I can teach her what she wants to know.  All I can say is that in the last 6 months, I have attained a greater acceptance for our situation with Kennedy and I don't find myself up so late at night worrying about her.  Some may say that religion is a crutch for the week.  Honestly, my faith has been a firm foundation since I've switched my focus from the temporary struggles of life on earth to more important, eternal things.  Don't get me wrong, I still have days where I question "Why?" but I certainly don't feel so alone knowing God is on our side with this.

The Broken Diamond

(I am always amazed when stories like this just fall into my lap. It's like a little message from God....)

The Broken Diamond

by Cynthia Gurin



These are the diamonds I inherited, said the customer. I want them combined into a magnificent piece of jewelry. All except this diamond. It's broken. I don't even know why it was kept with the good jewelry in the first place. If it were perfect, I'd keep it, of course. But it's not. It's broken. So I don't want it. Do whatever you want with it.

And with that, the broken diamond was carelessly tossed on the jewelers counter. The jeweler glanced at the broken diamond, then gently set it aside. 

At the end of the day the jeweler picked up the broken stone and looked at it more closely.

The diamond was indeed damaged.

But there was a certain something about that broken stone that still held the jewelers eye.

Perhaps that's why the original owner kept it safely in her jewelry box for all those years. How could anyone not appreciate the luminous beauty that still burned so brightly within that diamond, the jeweler wondered?

It's the same with people, the jeweler mused. Children can arrive broken too. In this world there are children who are born with Autism, with Down's Syndrome, with Cerebral Palsy. There are so very many things that can suddenly go wrong, and for no apparent reason. Worse, there are so many people who can't begin to see the worth in these children. Families who would just as soon toss their less than perfect children away, without ever really understanding the life and the joy that continues to glow within them.

And then the jeweler thought....But if those children are treated gently and surrounded by love, their true worth, the beauty of their very souls can shine, for all the world to see.

The jeweler picked up the broken diamond again. To me you are very beautiful my little friend. I will surround you with light and I will give you the care you deserve. And then, perhaps we'll see who among us is able to recognize your true worth.

The jeweler worked long into the night and by the time the sun came up the broken stone had become the centerpiece of a what was earlier a beautifully engraved, but otherwise plain antique gold locket. The broken diamond had been set in the center, and was now surrounded by many smaller diamonds.

The jeweler smiled and spoke aloud to the broken diamond. Alright my little friend. You now have a stable home and you can consider yourself surrounded by a circle of love.

The sparkling locket was placed in a luxurious suede box, which joined the other pieces of jewelry in the wonderfully glittering showcase.

Day after day, customer after customer admired the locket and commented on how amazingly beautiful it was, but when the jeweler handed them a magnifying glass and told them to look at it more closely and showed them that the center diamond was broken, most said they only wanted something perfect.

Never mind little one, the jeweler said to the locket, as each box was being packed away in the big safe every night at closing time. The right person will recognize how special you are.

One day a lovely young woman who was wheeling a child's stroller came into the jewelers store. She looked at the shimmering pieces in each of the showcases but nothing seemed to capture her attention.
All at once her eyes lit up.

Is that a locket? she asked, pointing. The jeweler nodded.

That's the most beautiful locket I've ever seen!, she whispered to herself.
May I see it please?, she asked.

The jeweler took the box containing the locket out of the showcase and handed it to the young mother, while explaining about the broken diamond.

But it's so incredibly beautiful, the young woman sighed, as she admired the locket, I look at this and I don't see any damage, I see only the beauty. And look!, she exclaimed with delight, as she opened the locket, There are two frames! I could put pictures of both my husband and my children inside it!.

Suddenly, the handsome little boy in the stroller made a sound. Not a word exactly, but a sound that obviously conveyed meaning to his mother. The woman immediately knelt down and gave him her full attention. After calming him, she gently and lovingly stroked his face.

The jeweler looked at the little boy. What's his name?, the jeweler inquired.
As she told the jeweler the little boy's name, she smiled happily at her son.
It wasn't as though anything was immediatedly apparent, it was more intuition than anything else that led the jeweler to look more closely at the little boy. After a moment the jeweler understood that this was a special child, who had been been blessed with a mother who recognized the beauty of his soul.

The child's mother stood and turned back to the jeweler. I already know I can't afford this, but please tell me how much it is anyway.

The jeweler checked the tag and told her the price. Ouch!, she sighed, as she reluctantly handed the box back. I'm afraid it's way out of my price range, she smiled ruefully, but thank you so very much for showing it to me. There's just something...something about that locket that reaches right into my heart and calls to me.

The jeweler smiled and replied, You have a good eye for beauty.

Thank you, she laughed.

As the woman turned to go, the jeweler thought for a moment. Leave us your name and address and we'll drop you a note if this piece happens to go on sale. Perhaps your husband will stop by one day and tell us he's decided it would make the perfect gift.

I can always dream, the young woman laughed, as she wrote the requested information on a little card.

There had been so much interest in the beautiful locket that the jeweler knew it would sell very soon. Nevertheless, it was now carefully set aside in a corner of the big safe and never returned to the showcase for sale.

One day a man came into the store and told the jeweler he was looking for something very special for his wife, because he thought his wife was very special herself.

The jeweler smiled and invited the young man to share his thoughts.

Tell me why she's special.

The man spoke with pride and love about his wife, and his little girl, and about their very special little boy. She must be very special indeed, the jeweler said.
And what are your children's names? , the jeweler inquired, and the man told him.

The jeweler asked the man to wait a moment, telling him that perhaps the perfect gift might just be sitting in the big safe.

A moment later the locket was placed on the counter as the jeweler dutifully explained about the broken diamond.

The man picked up the box to get a better look.

I don't see any damage, the man said softly, as he examined the locket, I see only beauty.

It was very clear to the jeweler that this family would forever appreciate the beauty and the sparkling life that shone so brightly in the little broken diamond.
The jeweler had already seen first hand how much the pretty young woman and her husband loved and appreciated their special little boy.

This is wonderful locket, the man sighed. It would make my wife so very happy. How much is it?, he asked.

And the jeweler told him.

That price simply can't be right!, said the man in surprise. Don't get me wrong, he said, with a winsome smile and a twinkle in his eye, I'd be thrilled if that really was the price, but I know it can't be. You'd be giving it away at that price, and I don't want to cheat you.

The jeweler just smiled. No, you won't be cheating me. It's just so happens that your timing was perfect. This locket just went on sale.

Wow!, the man said in amazement. He marveled at his good fortune while the jeweler finished gift wrapping his purchase.

Thank you so much! My wife will absolutely fall in love with this locket!, he called to the jeweler as he cheerfully headed out the door.

The jeweler smiled and silently thought, She already has, son.

It's Been A While

It's been a busy summer in our house so needless to say, I've not had much time to blog.  Last month, we took Kennedy on her first vacation and went to Gulf Shores.  It was definitely a fun time and we enjoyed seeing Kennedy's face the first time she saw the beach!  She was overwhelmed and SO VERY excited! We returned to celebrate Kennedy's 7th birthday on June 13th.  Where does the time go??  We had a small cookout at our house with some friends and she had a great time celebrating her big day.  She even made her own birthday cupcakes at her request!  Talk about an independent little girl! :)

After returning from the beach, it was a difficult time for me as I began to think about Kennedy going to 1st grade.  Everyone has told me it's such a big jump from Kindergarten to 1st grade and I'm just worried about Kennedy.  You'd think over time I could get used to the fact that things don't come as easily for Kennedy as they do for other kids and yet, I constantly go through the vicious grief cycle over and over and over and over...... it never stops.  I could go into specifics on this, but I'm just not quite ready to throw it all out there into cyber space.  Let's just say, I found a fabulous friend who has let me cry, vent, and complain to her and I am so very thankful for her. 

Last week, Kennedy went for a check up at Vanderbilt and had a great visit.  She had been taking two different seizure medicines, Keppra and Depakote, three times a day, but because her seizures were starting to slow down (1 year since a complex partial seizure!), they decided to switch her to the Depakote Sprinkles (which are given twice a day) and stop the Keppra completely--- all depending on her blood work they drew that day.  So we go to the lab and Kennedy hopped up in the char,  refusing my mom or myself to sit down first so she can sit in our lap.  She's 7 now, so apparently she doesn't need to sit in anyone's lap for comfort.  However, she did scream a bit when she was poked, but quickly calmed herself down once she saw the purple butterfly band aid they offered her. lol 

On Monday, I called for the results and was told that her Depakote levels were great so they wanted to switch her to the Depakote Sprinkles so that she only has to take medication twice a day.  The nurse also told me to stop the Keppra completely the same day.  Okay, now we've had lots of medication changes in our 6 1/2 years of seizures, but never have we stopped a medicine cold-turkey.  But I figure the doctor knows what he's doing, although he wanted to take her off the Keppra which was the only medication that had controlled her complex-partial seizures for the last year.  The Depakote had only been added to her list of medication because of her absence seizures (which basically means she spaces out for a few seconds and then is back to good).  So Monday night, we began the new medication regimen. 

This morning around 10:30, I received a call from the sitter on the church phone.  I knew Kennedy was going to jump in the bouncy house at church this morning, but I knew that something was wrong-- I just felt it.  The sitter told me that Kennedy had apparently had a seizure and needed to know what to do.  Because Kennedy's seizures change so often, I immediately went to the church to find Kennedy laying in the floor, still having a seizure.  Grand total of about 7 minutes.  I decided to take her to the emergency room at Greenview to have her checked out because even in the past, she's never had a seizure to last that long.  And I find it very hard to believe that she just HAPPENED to have a seizure two days after we stopped taking the Keppra--which was the medicine that actually worked!

So....we go straight through to an exam room in the ER and they immediately wanted to do blood work so that they could check the Depakote level in her system.  Kennedy was so out of it, she cried a little, but for the most part didn't really care what the nurses were doing to her.  Fortunately, Kennedy's wonderful nurse used a tub that could be left in her arm in case they needed more blood or needed to give her medication.  That came in handy when Kennedy began vomitting and filled up 3 or 4 pans of vomit in a matter of seconds.  Poor little thing kept saying she felt she needed to throw up and kept covering her little mouth to catch the vomit.  Gross?--yes, pitiful?--definitely!  The doctor immediately ordered some phenegran for her belly and they hooked it up through the IV in her arm.  Not long after they started the medicine, she was sound alseep.  The doctor attempted to get in touch with Vanderbilt for 2 hours without a call back so they released us to go home and told me that Vanderbilt would be calling me regarding the medicine.

When they began to remove Kennedy's IV, she looked up at the nurse and said in the tiniest voice, "Don't hurt me!"  I felt so bad for Kennedy.  By this point, she had life coming back to her eyes and asked me where she was.  Apparently she didn't remember anything except being in the bouncy house this morning.  We left the hospital and Jeremy went to pick up some lunch because we were starving and Kennedy and I driving home when she looked at me and said "I think a Happy Meal would make my belly feel better."  I know she had been sick, but I just could not turn it down.  She could have asked for anything at that point and I would have given it to her.  So Jeremy also picked her up a Happy Meal.  She ate two nuggets, drank some sprite then layed down in my bedroom for a while.  About an hour ago, she came into the living room and started to become very chatty. 

I finally got a call back from Vanderbilt and was told to increase the Depakote sprinkles from 2 pills to 3 pills twice a day.  I argued with the lady that I'd prefer to have her back on Keppra because that was the only medicine that has controlled these types of seizures.  She said she could send the doctor a note, but that this was what he wanted to do.  I don't think those people understand that I can deal with giving medicine 3 times a day (they are the ones that are convinced giving meds twice a day will be easier) if it means she won't have these seizures.  She can have absent seizures and we'll deal with it because she bounces back in a few minutes.  Complex partial seizures take her at least one day to recover if not two days.  We cannot be having these when school is back in session.  But the nurse from Vanderbilt told me to call in a week with a report and to give it about a week for her to be seizure-free.  Seriously??  That's not good enough for me.  I am so utterly irritated with them right now, but I am thankful that Kennedy is starting to perk back up.  Guess we'll just have to wait and see what happens--and send up LOTS of prayers that Vanderbilt will get these seizures under control ASAP!

As promised.....

Tonight I finally found the pictures of my Kindergarten gradutation in the same dress!

Hmmmm....wonder why everyone thinks she looks like me?? I just can't see it!  hahaha

School's (almost) Out!

This last week has been a big one for my Kennedy Grace.  Not only did she lose her first TOP tooth, she didn't swallow it! Which meant we finally had a tooth to leave for the tooth fairy.  The same day, she graduated from Kindergarten!!  Now that was a good day!

So all week long, we had really worked on this loose tooth of hers and it would just not come out.  By Thursday, it was barely hanging on to her gum and I just knew it was going to fall out at school.  I even sent a little baggie and a warning email to her teacher that the tooth was on the verge of falling out at any moment.  I told Kennedy to make sure to give her tooth to an adult if it fell out.  (Let me note that I normally would not be so super excited about losing a tooth, but she swallowed the first two.  The tooth fairy won't always take letters, she needs some proof!)  So Kennedy excitedly told me that she was going to give her tooth to Mrs Mattingly, her teacher.  Kennedy acted as though it would be the ultimate gift to give her teacher this tooth. lol   But I picked her up from school and I was disappointed that it was still hanging on.  We went home to start getting ready for graduation and of course, we had to brush our teeth.  I'll admit that I brushed pretty vigorously and Kennedy told me I was "so mean" but I reached into her mouth and came out with a tooth!  This was the first one she had ever seen after losing it and she was so happy.  But she broke my heart as she looked in the mirror and her new smile and said that everyone was going to laugh at her at graduation.  I assured her that would be the case, but she was still pretty upset about the whole thing.

So after we got the bleeding stopped, it was time to get dressed.  Kennedy wore the same dress I wore to my own Kindergarten graduation in 1987.  I'll be the first to say, she looked WAY cuter than I did in it.  I've asked my mom to find a picture of me in the dress, but here are a couple pictures of the new smile and her adorable dress before heading to graduation.



She always gives the better smiles with Nana & Papa

 We all head to graduation and Kennedy's teacher was SO excited that she had lost her tooth and told me that she had tried to pull it several times throughout the day.  I did find out that Kennedy's teacher had told her the tooth fairy brought more money if she lost a tooth on graduation---let's just say I'm glad I found that out! ;)  The graduation ceremony was ADORABLE. Some of the graduates got to go up on stage and say a Kindergarten poem.  Kennedy and I had been working on her line for about a week and she had it down perfectly.  My heart fluttered as each child said their line and passed the microphone to the next student.  Then, it was Kennedy's turn.  She began her line....and froze!   I could see from her face that she was overwhelmed with the crowd.  All her friends next to her were looking at her with hopes that she would be able to say her line.

Her best friend Kaia is in the blue dress and you can tell her friends were rooting for her!

 And then....she finished it!!!!  "T is for treats every Friday we earned" and you could hear a sigh of relief from the crowd.  Kaia even clapped for her when she said it.  It just melted my heart!  Then it was time for diplomas.  As each child was called up, their teacher would tell the audience what the child wanted to be when he or she grew up.  When Kennedy's name was called, I learned that she wanted to be a princess when she grows up. lol  It's so sweet how her little mind works.  She already is a princess, of course, so I guess she'll have to find a new career in the next 12 years!  lol 

I can't tell you how proud I was of Kennedy!  The difference between her at this graduation and last year's graduation is just not even comparable.  Last year she was this super shy child who just seemed overwhelmed with the whole concept of school.  This year, she was confident and proud of herself.  I would not change our decision to let her repeat Kindergarten at all.  It was the best choice I have ever made for her.  Just look at this confidence.....

After the ceremony, we went to dinner to celebrate then headed home.  Kennedy couldn't wait to put her tooth in her little tooth fairy pillow (which was also mine as a child).  She told me that she was definitely going to sleep in her own bed all night long so the tooth fairy would know where she was and where to find the tooth.  On Friday morning, Kennedy woke up and was excited to find money in her pillow--extra for a lost tooth on graduation day!  But suddenly, she was so upset and in tears.  She didn't understand where her tooth was.  I tried to explain to her that the tooth fairy takes it and leaves money--kind of like a trade, but Kennedy was heartbroken.  She wanted that tooth and she told me that she was not leaving any more teeth for the tooth fairy--even if that meant she didn't get money.  So needless to say, I couldn't send her to school so upset so I happened to "find" her tooth under my pillow.  Apparently, the tooth fairy thought that Mommy may want to keep it for her.  So now she has the tooth (which is put up in safe place) and the money.  She has wanted to look at it every day since losing it!  Whatever makes her happy, we'll do.  Even if that means making our own rules with the tooth fairy!

The Kentucky Derby & Adventures at Jellystone

So I realize it's been more than a month since I last posted anything, but since the warmer weather has moved in, we've spent TONS of time outside and blogging has not really been at the top of my to-do list.  :)

On the Thursday before Derby Day, I attended another Kentucky Derby at TC Cherry.  Kennedy was the best looking jocky I've ever seen and even had a derby hat on that she made herself.  When I asked her what her horse's name was, she said it was "Fire Pants" which I later got clarification that the correct name was "Pants on Fire." lol  Same difference, right?

With her horse in her hand, the class headed down to the playground for the derby and Kennedy got second place in her race!! I was so proud of her!!

After her race, all the winners got to compete for the winning title and Kennedy cheered on her best friend, Kaia, who won.  Kennedy was so proud of her friend that she even stopped her for a quick hug during Kaia's victory lap.....

Kennedy enjoyed some kid-friendly Mint Juleps after the race and overall had a GREAT day.  It was by far the BEST Kentucky Derby I have ever watched!  The following day, Jeremy and I went with Kennedy on her class field trip to Jellystone in Cave City.  The kids had a blast and Kennedy enjoyed having a day of fun, but was somewhat bummed that her parents showed up apparently.  She was not in the best mood, but we tried not to be helicopter parents and I just took pictures from the sidelines. lol  I did find that she apparently gets her golfing skills from me and NOT her Papa who is a regular golfer.....

By the end of the field trip, she was in a much better mood and actually took picture with (gasp!) her PARENTS!! How embarrassing!!  But this picture was by far my favorite of the day....



Now THAT is a good Daddy!



Everything happens for a reason, for sure

So over the last few weeks, I realize I have slacked on the blogging, but I've actually come to a greater acceptance of our situation.  Let me ramble through my story and just know that I do have a point to make..... :)

Recently, you may have heard about the lottery winners in New York that worked together and won $319 million dollars with the winning ticket.  If you haven't heard this story, you can read it here, but let me just give a run down.  So one of the coworkers goes to the store to purchase the lottery tickets and reaches over to pick up a candy bar that was calling his attention.  As he reached over, a man jumped in front of him and purchased a lottery ticket.  The lottery winner said that at first, he was somewhat irritated by the line-cutter and thought about saying something to him, but decided just to let it go.  And now he has $319 million dollars to share with his coworkers.  That money could have belonged to the line-cutter if he would have just waited his turn.

I was watching this super cool story on Good Morning America a couple weeks ago and I had a complete "ah-ha" moment.  If I hadn't gotten pregnant, unexpectedly, at the age of 22, I would not have been blessed with this beautiful baby girl that I have today.  God planned for me to have her and things happened for a reason. I then began thinking of the night I was in labor.  Earlier that day, a big storm had blown through the area and caused lots of pregnant women's water to break and lead to a baby boom that evening at the hospital (12 girls born that night I believe- not a single boy).  I remember wishing I was the lady in one of the rooms down the hall because her labor had gone so much faster than mine and I was just tired of waiting around for this baby to get out of me! :)  Who knows if I was the only person who became a mother to a special needs child that night, but God gave me a child with just enough special needs that He knew I could handle.  What if I had given birth to a baby that was deaf, or blind, or even both?  What if I had a child that had been Autistic?  I honestly know in my heart of hearts that I would not have been strong enough for a child with these types of needs.  So the fact that I got Kennedy, despite her special needs, is such a blessing because I know it could be so much harder.  But what if I had given birth just a few minutes earlier and God had given me one of the other babies born that night? Would I have had a "normal" child? Maybe.  Would I have had a child with every more special needs that I wouldn't be able to handle? It could have happened.  But the beauty of God is that He knows exactly what He is doing and He gave me a child with special needs because I have always had a soft spot for people with disabilities, but not so many special needs that I wouldn't be able to handle it as a single mother.  I don't know if that makes sense to anyone else, but it does to me.  I got just the baby that God intended for me to have.  Just like the lottery winners got just the right place in line to get the ticket that was meant for them.  In a sense, I hit the lottery myself with Kennedy Grace.

Very early in my pregnancy, I think I knew that my child would have some struggles.  I remember being at a mall in Nashville with my mom and we were sitting in the food court when a group of children from a special education class came through the mall.  I remember breaking down into tears and telling my mom that I didn't want a child with disabilities.  My mom asked me if there would be any reason that I would have a child with special needs and of course I couldn't think of a reason, but I just felt that this could be a possibility.  I don't know why I felt this so long before we ever knew Kennedy had some delays, but perhaps it's just a mother's intuition. 

Just a couple weeks ago, I was talking with a friend and she was telling me about her struggles of her child that has ADHD and is Autistic.  As she was talking about how her child likes to wander without her, I thought to myself, if I had a child that was ADHD and wouldn't sit still, I would have lost the kid by now!  I'm not good at keeping up with things and at least with Kennedy, she'll sit in a cart or stroller and I know she isn't going anywhere.  If I had a child who was hyperactive, I would indeed be in big, big trouble!  And I'd also be in a tough spot if I had a child with Autism.  While I'm still trying to learn things about autism, I struggle to have patience with kids with autism only because I don't understand the way their brains work.  I honestly feel like having an autistic child would have put me in over my head.  Of course, I know I would have learned to adapt with any type of special needs that Kennedy had, but I feel that God gave me what he knew I could handle.  Granted, in the beginning when I was told Kennedy would never walk or talk, I wasn't sure how I was going to get through it.  But I did and now I feel like we can get through anything together. 

When I was given that grim news that Kennedy would never walk, talk, and would "probably be in special classes," I remember crying in the exam room and thinking to myself-- WHY??  Here I had stepped up to the plate to raise this child completely on my own when her "father" walked away the day he found out a child was on the way---and THIS is what I get for trying to do the right thing??? I remember feeling so angry with God.  But now I see that I got just what I needed.  In this master plan, God gave me a wonderful  man who has stepped up to the parenting role and been the BEST father to Kennedy that I could ever ask for and  I also got a child who has shown me that nothing in life is guaranteed and that anything is possible, no matter what the "professional experts" say.  I got just the child God intended for me to have.  A child that may not be physically perfect, but that is perfect for me!

Progress Reports

This past Friday, I was at work when I received a text from Kennedy's FABULOUS teacher telling me that she was sending home a progress report for me to see.  In fact, she said it would be perfect blog material. :)  So I picked Kennedy up and before I even got her in the car, I was searching through her backpack for the progress report that I had anticipated seeing all afternoon.  The report listed the class average and also listed Kennedy's individual score.  And........wait for it.........she was AT or ABOVE the class average on all but one score!!!!  I almost couldn't believe it!!  She scored "at exceptation" on nearly every score except one in which she scored "approaching expectation." 


We recently got Kennedy's report card as well and again, it was progress across the board.  She has consistently made improvements throughout the school year.  Of course, we still have things to work on, I love seeing the progress every quarter. 


How's that for a child that I was told would "probably always be in special classes" and may never be as smart as other kids??  That just goes to show that doctors are not always right.  Unfortunately, I think too many times, when doctors give their "professional opinions," we have a tendency to believe nothing more (or less) is possible.  Sure, I could have given up on Kennedy, and at times I was probably closer to giving up than I care to admit.  But where would Kennedy be today if I hadn't pushed her to do her very best?  I would have only held her back and not seen her potential!  And who knows what that child is capable of accomplishing in her lifetime.  I could have just heard her diagnosis, came home, and not expected much from her while we watched our lives waste away.  But instead, I've pushed her and encouraged her to become independent.  I'm not always going to be on this earth and it's my job to prepare Kennedy to be self-sufficient.  I don't baby her---at least not too much any more.  And now, I have a bright little girl who is holding her own in a regular Kindergarten classroom!  A little girl, by the way, that tells me every morning that she wants to "go to Western" she she grows up.  I think that's a pretty realistic dream if I say so myself!

Emily Perl Kingsley's "Welcome to Holland"

I came across this BEAUTIFUL story this past weekend when I was feeling down and out with our situation.  It has helped me tremendously and really puts into perspective how it feels to grieve the loss of a "normal" child.  Enjoy this beautiful story by Emily Perl Kingsley (1987).

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. And 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.

How God chooses parents for special needs kids

(I found this story yesterday and it has really stuck with me throughout the day today. I just wanted to share.....)

Most people become parents by accident, some by choice, a few by social pressures and a couple by habit. This year, nearly 100,000 couples will become parents of handicapped children. Did you ever wonder how parents of handicapped children are chosen?

Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth, son, patron saint, Matthew. Forrest, Michael, daughter, patron saint, Cecilia. "Rudledge, Carrie and Adam, twins, patron saint, give her Gerard. He's used to profanity."

Finally, he passes two names to an angel and smiles, "Give them a special needs child."

The angel is curious. "Why this one, God? They're so happy."

"Exactly," says God. "Could I give a special needs child to parents who do not know laughter? That would be cruel."

"But have they patience?" asks the angel.

"I don't want them to have too much patience or they will drown in a sea of self-pity and despair. Once the shock and resentment wear off, they'll handle it.

"I watched them today. They  have that feeling of self and dependence that is so rare and so necessary in a mother and father. You see, the child I'm going to give them has his own world. They have to make it living in that world, and that's not going to be easy."

"But, Lord, I don't think they even believe in you."

God smiles. "No matter. I can fix that. These two are perfect. They have just enough selfishness. "

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If they can't separate themselves from the child occasionally, they'll never survive. Yes, here is a woman and a man whom I will bless with a child less than perfect. They doesn't realize it yet, but they are going to be envied. They will never take for granted a 'spoken word.' They will never consider a 'step' ordinary. When their child says 'Momma' for the first
time, they will be present at a miracle and know it! When they describea tree or a sunset to their blind child, they will see it as few people ever see my creations.

"I will permit them to see clearly the things I see . . . ignorance, cruelty, prejudice . . . and allow them to rise above them. They will never be alone. I will be at their side every minute of every day of their life, because they are doing my work as surely as they are here by my side."

"And what about their patron saint?" asks the angel, pen poised midair.

God smiles. "A mirror will suffice."

Here Goes

I'm guessing that the first post of any blog should include a slight explaination of the purpose of it's existence.  So here goes....

For the last week or so, I feel that God has been calling me to start a blog for several reasons.  First, I need an outlet.  As the parent of a special needs chld, life can be somewhat isolating.  And it's not that friends and other people I know aren't supportive of our situation, I fully realize that I am completely capable of isolating myself from others.  But I admit it's a flaw and I'm working on that.  Unfortunately, while I try on a daily basis not to compare my child with other children, it's nearly impossible not to.  And while I greatly enjoy meeting other moms that understand the sacrifices one must make for their children, very rarely do I come across a mother that understands raising a child that has special needs.  This weekend, for instance, has been very difficult for me.  I was at a gathering with several other moms and they are all talking about their 6-year-olds learning foreign languages and playing musical instruments.  That's definitely something to brag about.  But the self-pity came out in me and I was broken.  What in the world could I contibute to a conversation like that?  Especially as she was coming up to me because she couldn't get her shoes on by herself.  Should I chime in and say "Hey, my child learned how to say (insert basic English word) correctly this week!"  I can only imagine that I would appear sarcastic toward other moms, despite the fact that this was a major accomplishment for my child.  I can't imagine Kennedy being at a point where she could speak another language or play an instrument.  Right now, I just want her to figure out how to hold a pencil or to be able to correctly pronounce certain sounds (and there are SO many that need to be correcting).  It's a mother's nature, I know, to brag about the things that a child can accomplish, but when the "small" things are "big" things with my child, I feel that my stories just would never stack up against the rest.  And I highly doubt other moms would even come close to understanding how proud I was of Kennedy acheiving something their 2-year-old is doing flawlessly.  I also feel that I always have to justify things for Kennedy.  I have to explain that we can participate in certain group outings because Kennedy has to get in bed by 7:30 or she's more prone to seizures.  Or I have to explain that Kennedy is so messy when she eats because she has tremors in her limbs that my it difficult not to spill things on her. I feel like every moment I am awake, I'm constantly explaining why my child doesn't quite measure up to society's definition of "normal." (I hate that word)

So this leads me to the second reason I feel called to start this blog.  If I look back over the last few months and even years, I can see so much that Kennedy has accomplished!  But it's the day-to-day life that can seem so daunting.  Often, it's hard to take it "one day at a time" when little or no progress can be seen in one day.  This "chronicle" so to speak can be a testimony of God's work in my child.  So that when times get tough and it seems that she is making no progress at all, I can go back and look at the things she has accomplished over time.  For instance, I was told Kennedy would never walk or talk.

(Let me insert at this point that my entire computer had just shut down and I thought I had lost this entire post.  I think someone is trying to work against me here, if you know what I mean)

Back to my thought......I was told that Kennedy would never walk or talk.  And while I am so incredibly thankful for God's blessings, sometimes it's very hard to lose sight of what she has accomplished because I'm constantly being reminded of the things she can't do.  By sharing the accomplishments here, I'll be able to go back during those stormy times and look at all that she was able to do despite being told she "couldn't" do it.  I feel that God wants me to do this so that when I'm struggling to get myself out of bed and I'm asking "Where are you, God?"  I can see that he's been here all along, even when I couldn't see Him.  In the past, I have been so angry with God because I know He has the power to take this away, but He hasn't.  And I keep reminding myself of Jeremiah 29:11 (my favorite) and that God has a plan for us. 

As I said earlier, I had a self-pity moment this weekend after the gathering I attended yesterday and I've struggled with every minute this entire weekend with sadness and pessimism.  Our family got up this morning to get ready for church and I told my husband, Jeremy, that I just couldn't go.  I was just so down and out and while my head was telling me that church was where I needed to be, my heart was begging me to go back to bed and sleep the day away.  But I gathered myself and we went to church and I heard the exact message that I needed to hear.  The sermon was on seeing past your problems to God and how important it is to look to God when you are going through the good AND the bad times in life.  It's something I struggle with, but I'm starting today.  While I know this won't be an easy journey, I am making a choice to strengthen my relationship with God and not to stray when times get rough down this road.  Thanks for joining me in this process and I look forward to sharing Kennedy's successes with you along the way.