Tuesday, March 25, 2014

When Michele met Haley

Wow.....almost two years since my last update. Life moves at a breakneck speed, you turn around and a huge chunk of time has passed by.

So what's been going on with us.......in reference to my last blog, we decided not to put Haley in pre-K. She finished out her time at Special Kare (her preschool since she was a baby). It was definitely the best decision for her. She needed more time to develop some of her skills in a comfortable environment before moving on to kindergarten.
However, the transition to kindergarten was a rough one. Really rough....way rougher than the typical new kindergartener. The combination of a new environment, new people, new therapists, and being jerked away from her safety net at Special Kare...all she has ever known, proved to be more than she could handle at one time. She spent the first several days crying...practically screaming, to the point that she had to be pulled out of class because she was too disruptive to the other students. We were terrified that she would get kicked out of school. We were incredibly lucky to get into our local charter school, and to lose that would mean going to regular public school. There is nothing wrong with public school, actually the school in our district is a wonderful school. But the larger atmosphere would have been even harder for her to process.

Thankfully, she is in the hands of the most wonderful staff, teachers, and therapist who are very proactive and more than accomodating to Haley's special needs. First we went with a VERY abbreviated school day where she went from 8 to 11:30. We also had to make very specific adjustments for her. She started wearing her noise blockers pretty much the entire day, they made sure there was someone waiting for her at the drop off line to take her into school, they put a nightlight in the bathroom for her because they couldn't disable the loud fan (she would hold it all day long because she was scared of the bathroom), she had to sit at a separate table directly beside the teacher's aide to help keep her calm, the teacher or aide had to walk with her everywhere the class went. They basically structured their whole day around Haley. Absolutely amazing people! Slowly but surely, we were able to lengthen her school day. It took nearly 6 months, but she is now able to go the entire day. However, I still have to arrive 15 minutes early to pick her up to avoid the chaos of the car-rider line. They still think that is too much for her to handle.

Her therapists and special ed staff are incredible. She still gets all the therapies she has always gotten, speech, physical, occupational, vision, and special education. Her speech has made a tremendous improvement. Her balance and coordination, although still a little "off", has also improved. She LOVES P.E. and recess. She is attending dance class for the second year now. We were afraid that she would get frustrated and want to quit dance, but she is excelling in her own little way. How silly of us to think she would actually quit something. She is a fighter and she never quits!

I discovered today that she has completely ditched her noise blockers. I found them in her bedroom buried underneath some clothes. Once upon a time, she would have an epic meltdown if she did not know their exactl location, and always had to be in close proximity!
She has made a ton of friends. In fact, everyone LOVES her. The kids practically fight for her attention. I was honestly very worried that she would have trouble making friends at a new school. The kids at Special Kare had been with her since she was a baby. They understood her struggles, had learned to understand her not so normal speech, knew that she needed extra help....would the kids at her new school understand/comprehend/accept her? As usual, I underestimate children at this age. They accept her, and seem to love her even more because she is "special".
So why am I feeling the need to catch up? Well, last weekend we hosted the 2nd annual Race for R.A.R.E. I had envisioned this race for 5 years, and finally made it a reality last year. R4R is a project I created that operates under my other brainchild, Jog for Joubert Syndrome. R4R benefits the Joubert Syndrome and Related Disorders Foundation, as well as raising awareness for all rare diseases. This year was a huge success! Haley loved it and has declared that she wants to be a runner. She became very upset after the start of the race. I ran with her for the first 100 yards or so and she started to cry as the pack pulled away from us. She wanted to run the race too. But she quickly got over it and made her own little race, running through the finish line a million times with another little girl also affected by JS. In time my dear, you will be running this race too....in it's entirety!

I have an extraordinary group of friends that I met through my own running adventures. A very special gal named Michele happened to be at my race this year and instantly fell in love with Haley. Thinking about their connection now, I see a similarity. You could judge a book by it's cover with these two. At first glance one might see Haley's differences and assume she is weak, however on the inside she is a tenacious fighter, stubborn to the core, and refuses to give up. Michele is much the same way. She is a tiny little petite thing, with a bubbly personality, and as sweet as can be. You may assume this chick isn't very tough, but she is tough as nails, tougher than almost anyone I know. She runs ultra marathons (beyond 26.2 miles), and she has completed some really really REALLY tough races. And she is about to do something even more amazing. Michele, and her partner in crime Drew, will be embarking on a 200 mile run over the span of 4 days on the Foothills Trail. A feat that has never been accomplished. And she is doing so in honor of Haley. She is graciously raising money for her and the JSRDF. Her journey begins April 25th, 2014.
I've set up a donation page for Michele's journey. For those new here, feel free to browse through Haley's blog. This blog, literally, documents her entire life....up until I became a total slacker graduate student.  Start with the "About Us" tab for a brief synopsis of Haley's journey. Thank you for stopping by if you ended up here because you are interested in Michele's endeavors. And thank you in advance if you decide to donate to her cause. I will try to keep everyone updated!

Wednesday, June 27, 2012

To Pre-K or not to Pre-K...That is the Question

Today has been a day that I have been putting off for two weeks.....pretty much until the last minute.  Today I took Haley to "big girl school" as she calls it, for pre-k screening.  For those not familiar with NC's pre-k program....qualification is either a financial need or some deficit.  They do let "normal" kids without financial need or deficit in, but the ones that are affected get first choice.  We've been told that Haley is pretty much a shoe-in because she has an IEP (her yearly therapy plan and goals). But I'm so torn.

Like most parents, it will be hard to see their "baby" go to real school.  And to do it a year early is particually hard to consider.  I'm not mentally or emotionally prepared to see this happen so soon.  But its reality, I have to let go eventually.....unless I home school....yeah right!!!!  One one hand it will give her a head start into the transition from preschool, she will already be acclimated to real school once kindergarten starts, whereas most kids are crying for mommy all day for the first two weeks.  Right now, that is the only pro to pre-k that I can identify.  But I know that's wrong, I'm just being irrational right now. 

I love her preschool....LOVE, LOVE, LOVE it!!!  She has been there pretty much from the beginning of her Joubert Journey.  She has been through every classroom. From the baby room to the three year old room and if she stays, the four year old room.  Every single one of her teachers have been so good.  Heck, everyone is, they all love her!!!  They all say they will be so sad when she leaves and will be heart broken if she leaves early.  So there is that sentimental attachment for me.

But what bothers me most is that she will be thrown into a classroom with 17 other children.  Her class size now is 8, sometimes less.  I feel like she is going to be thrown into a pack of wolves when she still has so much I want her to develop before that happening.  I really worry about her speech.  That is her main source of frustration.  If she is not understood, which is often, she gets very upset.  I suppose that is ok for her....she's been misunderstood most of her life, she's sick of it!  I only imagine that the teacher will not have enough time to stop and interpret what she is saying.  I fear that if this happens, she will regress and not say anything at all at school.  I want her to have this one last year of special treatment where people know and understand her and hopefully improve her speech to where she is understood.

On a slightly less important self-centered note, I will hate the dreaded car-rider line.  Sitting with car idling 1 hour before dismissal in order to be near the front of the line.  I will inevitabily be one of those unfortunates, but give me one more year of easy drop off and pick up! It also means getting up earlier to ship her off to school, and for those who know me persoanlly know this is not a good thing for anyone.

But most of all I don't want to face the reality of the fact that she is growing up and no longer a "baby".  She will always be OUR baby, but now she insists that she is a BIG girl and I don't like it!  I feel selfish in some regards that I may be holding her back, that maybe its the right thing to do.  And it will also be a SMACK of reality when she will really be in the minority being a special needs child.  Where she is now, she is in good company with many special needs children.  It might sting a little to see that.  Or I may be pleasantly surprised when I see her with "normal" children who don't know her and accept her.  And I have to believe that will happen, otherwise I may never be able to let go because of the thought of her being bullied or pick on because she's different.

One second I think we've made our decision and the next second we've changed our minds.  We won't know IF or where she would be placed until late July.  Maybe she won't be accepted after all and this will be a moot point (cheering yay on the inside...no decision to make!).  So we have some time to think about it.  Until then....I will be agonzing about the next step in her journey to "growing up".

Sunday, June 24, 2012


Howdy strangers!  I know, I know.....its been many a fortnight since I have blogged.  There have been several culprits contributing to this sad fact.  1) I felt very little was happening with us that was "blog worthy".  I mean who wants to know about the mundane happenings of clan Buchanan.....apparently some people think otherwise. 2) I just plain ol' got lazy.  I've had the time, but sitting down to write is sometimes a tedious task to accomplish.  I enjoy writing, but its sometimes painfully tedious to find material or inspiration to write.  But then I realized, I shouldn't always be writing for entertainment purposes to please my "audience".  This is a personal record of our family's journey.....and I have all the inspiration and material I need if I just look around.  3) Although I have had time in the past to write, I no longer have the luxury of complete "free time" anymore.  A few weeks ago, I started a new journey.  Ten years post baccalaureate, I have taken on the challenge to become a doctoral prepared pediatric nurse practitioner (yeah, that's a mouthful!)  That's another story, for another day, but it boils down to the fact that what I have known as free time will now be school time.

So, why the sudden push to blog again???  I get the occasional email from people, some affected by JS, others just random passer byers....but they all tell me what an inspirational story I am telling and how Haley gives them hope.  With every email, I get the spark to write again, but it never ignites.  Some regular readers tell me that they miss reading about whats happening in our lives and with Haley.  Some tell me I need this creative outlet to cope with the stress of having a special needs child and just plain ol' everyday life.  But the biggest reason is that I want to be able to look back and remember the little things.  Of course you always look back with a vague remembrance of random events, but I want to have a vivid memory of how those things happened and how I felt in that moment.  I gave up on keeping a baby book pretty early in Haley's life.  It was depressing to not fill in the blanks for "first time rolling over", "first word", "first steps", etc.  That, and the fact that in this tech age, its easier to type than hand write.

With all of that said, I am going to try to get back into the swing of blogging....if only short blurbs of "a day in the life of" Haley.  I'm also going to try to go back in time and document the events that I have, unfortunately, left undocumented.  I'm (re) committing myself in doing this for Haley and our family, for my regular readers, and for those who stumble across this blog when searching for information on JS.  What I ask of you, my readers, is to keep me accountable. Email me, call me, tweet me, facebook me....do whatever you need/can do to spur me on.  Like someone recently told me "how time consuming can blogging really be, just sit down and do it!"


Thursday, March 8, 2012

Year 4

Wow! I really did let this blog fall off the face of the earth! Now I have to try and play catch-up!
So much has changed in the past 8 months! Haley just had her FIRST real birthday, being a Leap Day baby! It was nice to celebrate her birthday on her actual birthdate! We wanted to do something special for her birthday, so we had it at the Schiele Museum. It was the funnest party ever!




Its so hard to believe she is four years old now! Where do I begin??? Haley’s verbal communication is just blowing us away! I can’t keep up with how many words she can say now. We can have real conversations now, albeit short ones. Right now she is in the “why” stage. “why do dat”, “what do dat”, “whyyyyeeee”??? We are trying to be patient with it, but as parents of typical children also know, it can be so ANNOYING!!! We still have to play our fair share of charades and often its like interpreting a foreign language, but we (and she) are learning to function a little better with her often challenged communication. She can recite her ABCs, numbers up to 20, and has memorized the blessing
We took another beach trip. She enjoyed playing in the sand, but is still not interested in getting in the water…be it ocean or pool. We are SO hoping that she will swim this year!
Haley “played” soccer this fall. To say it was a complete disaster would be an accurate statement thru about 75% of the practices and games. Will was her team coach, and he really enjoyed that. I’m sure it was somewhat intimidating to her watching the other kids run, kick, jump, and be rambunctious. She did what she could, and spent the rest of the time watching from the sidelines. But we will try again next year, hopefully she will be more confident by then.
What she is really interested in is singing and dancing! This girl can shake her groove thing. We think she will be very musically inclined as she gets older.
She insisted she be a “PINK dog” this year for Halloween. Do you know how hard it was to find a PINK dog costume??? Harder than you think!
And for Christmas she, of course, wanted a BLUE dog….equally as hard to find!

Haley has been completely potty trained for several months now! We are so relieved to finally be out of diapers, although she still requires help getting her pants off and on and help onto the potty….I will take that any day over diapers! No more stinky diaper laundry!!!

Haley has lot of “boyfriends”. Is it starting already??!!

And of course she is still quite the camera ham!


Well, I know I just skimmed over the last several months. But this amazing little girl surprises us everyday. It is such a joy to watch her grow and change! Maybe I can do a better job of letting you all watch her grow by updating more often….we’ll see :)

Wednesday, June 29, 2011

100%, 80% of the time

Potty training boot camp is in full force in our household. I had feared that this process would be painful, long, and drawn out. But two weeks in, and Haley is 100% potty trained…..80% of the time. How is that possible, you ask? Well, conditions have to be just right. As long as her pants are off, the potty is within sight (as of now, it resides in the living room), and we are at home she is 100% potty trained. We are now working on wearing “big girl pants” aka, underwear, and learning how to pull them up and down. She is also not willing to even attempt using the potty at school. But the progress she has made is phenomenal!!! I was envisioning having to still be potty training a 5 or 7 year old, so I’m EXTACTIC that she is even trying.

Haley has been a busy bee so far this summer. She has already made one trip to the beach with my parents and brother.

We also went on a family field trip last weekend to South Mountain State Park. Haley really enjoyed playing and throwing rocks in the creek. I see lots of hiking and (in the WAY future) camping in our future.




Haley has been playing in our pool some too this summer. Some days she is more interested in “swimming” than others. I was able to convince her to use water wings one day and she thoroughly enjoyed that and was actually “swimming” on her own. Other days she just prefers to sit on the step and splash around.

And in case you missed it on Facebook, I put together this short video several weeks ago of Haley playing, doing things we weren’t sure if or when she would ever do. She continues to amaze us everyday!

The JSRDF conference is right around the corner. We made the decision this year for just me to go. It’s a huge expense for the entire family to go. This year’s conference is in Orlando. It would have been an opportunity to spend some time at Disney World, but after spending 4 days at conference, it was just going to be too much on all of us to spend quality time at Disney World. Plus the thoughts of walking around in the July heat was less than thrilling, when Haley and I both do not tolerate the heat very well! We will go back when we can spend more time there and make it worth while. I‘m sad that Haley won’t get to meet and play with the other kids.

And I just realized that four years ago today, I took that first pregnancy test that Will and I argued over the results. Remember this one?

I still don’t see how he could think this was not a positive test!!!! You see it right????!!!! Four years ago today, we embarked on one of the biggest journey’s of our lives. Little did I know on that day how my life would change.

And 4 years later, we are welcoming a new life into this world. My best friend had a beautiful baby girl this morning. Congrats, she is beautiful!

photo (3)

Tuesday, May 3, 2011

The End of Another Era

As I sit here folding the last load of cloth diaper laundry, I realize (yet again) that our little baby is growing up.  I wish I was saying this was my last load because Haley finally decided to use the potty…..NOPE, she won’t have anything to do with it.  Stubborn little girl she is!  No, I feel like its time to say goodbye to my beloved cloth diapers.  I have put my time in, finished my tour of duty, saved the landfill of my fair share of dirty diapers.  Haley really is on the verge of potty training, its just her sheer will and determination keeping her from doing it.  She is showing all the signs…..wakes up dry some mornings, goes longer periods of time between wet diapers, will tell me when she needs to poop and when she has, she just refuses to actually follow through with the final step of the process.  GRRRRR!!!!  It started to become a battle between how time consuming, cost effective and environmentally friendly is it to wash 3 or 4 diapers at a time vs. use 3 or 4 diapers a day?????  3 years 2 months and 2 days is LONG ENOUGH!!!!  I refuse to feel guilty for tossing a disposable in the trash now!

In other news, Haley recently got a REAL hair cut!!!!  She transformed from still resembling a little baby to a real toddler in a few snips!







Easter was lots of fun this year.  This is the first year that we felt like she could handle dyeing Easter eggs.  She did really well, even got some of the dye on her hands without freaking out.  Her sensory issues seems to be calming down some! 

IMG_5638 IMG_5633This was also the first year she was actually able to hunt for eggs unassisted.  It was a very exciting moment!

IMG_5649 IMG_5647

Times…..they are a changin’!!!!!!