My Mother's Day

My Mother's Day started off with breakfast in bed (I have the sweetest husband, I know), and two beautiful girls climbing in my bed!!!  Tae Tae smiled her biggest smile, followed by a cute "Happy Mother's Day Momma"!!!  I got a lot of hugs and kisses too!!!  She wanted to play, so she ran out of the room quite quickly after that!! ;)  Taleigha, however, stayed in bed with me.  She cuddled me up for a half an hour.... just laying in my arms (for anyone that actually knows Taleigha personally, knows that I don't get many moments like this with her)!  She actually just laid with me, occasionally caressing my face, giving me "nosies" a.k.a Eskimo kisses, and kisses!!  It was honestly an extremely cherished moment!  I softly spoke to her, telling her that Mommy loves her and that she is so very special to me!  I asked what she wanted to do with me on Mother's Day.... when all of a sudden, she looked into my eyes while holding my face and said, "Ha Eeee Momma Day"!!!  How in the world could I hold back my tears!?  I was balling (of course I did that with a ginormous smile on my face so that she knew they were happy tears!!!)  My daughter.... you know, the one that would "never talk".... just said HAPPY MOTHER'S DAY to me!  There aren't enough words in the world that could explain what my heart felt in that moment!  I squeezed her.  I thanked her.  One memory I will never forget!?!  You bet!!!

Clint has been working so hard in his new position at work, and working such long hours that he wasn't able to take the girls and get me a Mother's Day present... Not that I expected one at all... but he felt bad about it.  Sooooo, he and the girls treated me out for a little shopping trip! ;)  The girls helped me pick out some "pretty dresses"!  It was a little hectic (lol), but a lot of fun!!!  Now I just need to get a little date night with the hubs so that I can actually wear my new dress! ;)

I am so incredibly blessed to have the daughters that I have.  How I ever got so lucky, I will never know.  But I will never take them for granted... Not ever!  They complete me!

Me and MY GIRLS!

Quite a Week!

Today ends the 2nd Annual Cri Du Chat Awareness Week, and quite a week it has been!!!  

Ever since Taleigha was born, I have kept fairly "quiet" about her diagnosis of Cri Du Chat Syndrome.  I didn't post a whole lot on facebook, only shared information with certain people, and really didn't get very involved with too many other families with children with CDC (through support groups).  I guess you could say that I have kept a bit of a wall up when it came to Taleigha being special needs.  Facebook has been the biggest place that I have kept pretty "tight lipped" about it though.  I am not close friends with every single person that I have on facebook... some are old friends from school, some are new acquaintances, some are people that I really haven't talked to in a very long time, and so the fact that Taleigha had Cri Du Chat Syndrome was never really "put out there" for all to see.  It was mainly because I really wanted people to see Taleigha for who she really is, having no other preconceived  judgements based on a diagnosis or 'label'.  I wanted people to look at Taleigha - really look at her - and see her beauty.  It has also been because of my own need to really handle the news that my daughter's life may not be exactly what Clint and I had 'dreamed' it would be.  It's a very emotionally trying experience, this life as a parent of a special needs child, and it's a process to digest such information when you receive it.  It's a process that is hard to explain, and difficult for others to imagine... but each person handles things differently, and for me... I needed these years of 'privacy' to really get a hold of my new reality.  My life was changed, more than by just having a child... but by having a "diagnosis" as well.  I'm okay with that though.  I really am!  Because I know that Taleigha is a special little soul, and I know that she was hand picked to be in my life.  She was given to me for a reason and I know that I was meant to be her Mommy.  She has made me a better person.  She has taught me things in life... Showed me what was really truly important.  I am grateful for her.  I know I've said it a million times, and I will probably say it a million times more... It's not always easy, but the challenges and struggles that we go through... they cannot come close to the good, amazing, and wonderful things.  

My 'privacy' in the matter has never, ever been because I was not proud of my daughter, or ashamed, embarrassed, etc.  Please, let that be clear!!!  I have been in love with that girl since the day I found out I was expecting... and I have been proud of her every single day of her life.  

>>There would never be shame in something so amazing<<

It has been a changing time for me lately, though, as I have now openly shared the fact that Taleigha does have Cri Du Chat Syndrome.  I feel free to share that now, because I feel that in the [almost] four years that Taleigha has been here, people have had more than enough opportunity to really see who she is - even if it has only been from a distance.  I also know that I, myself, am in a place in my life that I feel comfortable letting people in a little more. 

I have to say how touched I am, especially over the course of this last week, by all of the outpouring support, kind words, love, compassion, and very pure acceptance that I has been given.  I am also so very grateful for all of my new "family" that has come into my life...

- my CDC family -

(as a side note: I very much welcome questions or discussions about Cri Du Chat Syndrome... or about Taleigha!  So if anyone wants to talk, please feel free to do so!) 

 

~ I AM GIVING TALEIGHA A VOICE ~ 

and I am raising awareness each and every day by sharing our story, and I am PROUD to do it!

i . am . PROUD . of . my . beautiful .Taleigha Karyce

Tae Tae!

Taelyn Ryelle, my beautiful baby girl.  

(or Tae Tae as her big sister has affectionately named her!)

Tae Tae is just simply amazing.  There really isn't a better word to use other than amazing!  She really is my everything.  She is one of the sweetest, most caring and compassionate little ladies I have ever met in my life.  She is also so well mannered (okay, well most of the time!!!  Let's not forget that she IS two!!!  haha), saying please, thank you, I'm sorry... I especially like the "I sorry Mommy!  Tae Tae no mean to!" comment that she says so sweetly!  She loves wholeheartedly, and it shows in all that she does.  I think it's absolutely adorable how she can be miss "mother hen" to Tia.  She is so "in tune" to her big sister, and takes care of her in so many ways.  Granted, she also does the same thing to me (for example: if I have a fainting episode, Tae is definitely the first one to either run and "get help" if someone else is around, and if not, she is usually grabbing a pillow and blankie for me for when I wake back up!)  The other day, Tia was having a bit of an upset tummy, and Tae Tae went to her room, grabbed a pillow, brought it out for Tia to lay on (literally helping Tia to get her head on the pillow), covered her up with a blankie, and said, "It's okay Tia, Tae Tae here for you!  Tae Tae snuggle you!" and rubbed Tia's back, trying to comfort her!!!  That brought tears to my eyes (and actually, I have tears forming right now while I am writing this, thinking of that beautiful memory)!  Taelyn has such a sweet soul and I am so grateful for that!

She has just grown up so fast.  It's so hard to believe!!!  Some days, I literally do find myself staring at her, feeling like it was just yesterday that I was cuddling my baby in my arms while watching her sleep.  Now, she is running all over the place, talking a blue streak (actually having full blown conversations at this point), and stops me in my tracks with how extremely intelligent that she is.  She is counting and singing her alphabet!!  She knows so many of her letters and numbers by sight (actually she can seriously blow me away with how well she knows these things already)!  

Can I just tell you that this kid is absolutely HILARIOUS!!!!!?!  Because she is!  Seriously - I wish I could have a video camera going 24/7 to capture of all the hilarity!  She keeps me laughing all the time (and she is especially good at being funny WHILE being sassy, which makes it so extremely difficult to keep a straight face!  ha!).  One of my favorite things that she does, that literally makes me smile so much, is when she sets up her little singing stage (a.k.a. A little toy stand up vacuum and a toy broom which she uses as her microphone and guitar), and sings her precious little heart out!!!  It is so funny when she really, REALLY gets into it because she throws her head back, mouth wide open, and sings as loud as she can!!!  I'm pretty sure we watch American Idol and The Voice too much!  Haha!  It's so great though!  I love it!

I really could ramble on and on about how much of a blessing that Tae Tae has been in my life.  There is just something about her that I can't explain... She is perfect, and I thank God for her. 

She is just.... SPECIAL!

Little Miss "Tia"!

I am excited to update on my Little Miss "Tia"

(as her baby sister has affectionately named her - a.k.a Taleigha).

I know that my last post in September wasn't a very positive one to leave off on.  After posting that one, I realized that I really needed to pick myself up off the ground a bit.  I had found myself struggling again with the acceptance of our situation, but I also know that it is normal to do so.  This journey that I am on... being a parent to a beautiful and amazing, and also special needs daughter is not easy, but it's worth it!!

IT'S WORTH IT!  Every single minute!

Just like a million times before, Taleigha has been able to completely stop me in my tracks because of things that she does!  She has become much more vocal over the past several months, which I believe is a combination of starting her first school year and having classroom time, as well as Taelyn talking a blue streak!!!  If she can't find the way to vocally communicate her needs, she has been able to "lead" Mommy and Daddy to what it is that she wants or needs.  She's starting to figure out new ways of communicating every day, and for that I am so grateful.  Her determination and strength hasn't wavered one bit since she came into my life, and I look up to her in so many ways because of it.  We still struggle daily because of the communication barriers yet, but to see the tiniest of improvement goes a long way in keeping hope.  We did also get Taleigha an app for her iPad to use for communication, however, we are still in the process of getting it all set up (customized), and we know that there is going to be a learning component for her that will take a lot of time and patience for us all.

I have been fighting for a few different things for Taleigha lately.  One of which is Sensory centered Occupational Therapy.  We FINALLY were approved and able to get in for an evaluation with someone about a month ago, and as I suspected for so long now, the therapist agreed that Taleigha is struggling with some sort of sensory issue.  She started and had her first session today.  I am anxious to see what outcome we will have with these sessions, if any.  I was very pleased with the appointment today, and thought that Taleigha did quite well!  The other thing I have been really fighting for is to have an eval with a Pediatric Neurologist.  I guess I don't really even know why I feel so strongly about having Taleigha see this specialist, but I just feel like maybe it could be of some help in some way.  It's worth a shot.  Regardless, whatever the outcome of that, I would feel better knowing that someone did do an evaluation, to make sure that nothing is going on that we don't already know about.

I have been doing a lot of research on different resources that may be available to us in our county.  I was able to get connected with a service coordinator that should be coming out to our home in the very near future to also help us get more information on available resources and guide us through.  I actually did find a lot of things that I didn't even know existed that were available, for example: HealthCheck Other Services (HCOS), Family Support Program and Children's Long Term Support Waivers, Diaper Supply Assistance, etc.  I was able to find a lot of this information through Family Voices of Wisconsin!  Anyway - I'm pretty excited that I was able to find this info!

We are currently in the process of trying to get Taleigha a walker.  For the most part, Taleigha is doing a great job walking, but she does struggle with stability and longer distances really seem to take a toll on her.  Her physical therapist, along with Clint and I, feel that giving her a walker would only benefit her based on those struggles.  She has been using a walker in school, however does not use it all of the time, as she does not need it within the classroom, but does use it when walking the hall or in the gym etc.  She would not need to use it full time at home either.  We wouldn't have her use it within the house, but feel it would really help with shopping trips, doctor appointments, or even just going for family walks, and other things of that nature.  We are just waiting on the therapist and doctor letters of justification before we can proceed further with this.

We have a lot of different things in motion for Tia right now, and am very hopeful for the near future!  Can't wait to update further.  For right now though... This Mommy needs to get some sleep!

I AM BACK!!... For real this time! ;)

First of all, I sincerely apologize for the lack of writing over the course of the past seven months or so (still hard to believe that time can pass so quickly).  Life took quite the interesting turn back in September of 2012 and meant that a lot of focus was needed on family.  Since then, my family and I have been on quite the roller-coaster ride (which I am actually getting used to now... life being one unexpected roller-coaster after another).  I really have missed blogging, though, and am going to be making a strong effort to begin keeping up with it once more, since it is kind of therapeutic for me to do so! ;)  Prepare yourself, as this post may be lengthy!! Ha.

Like I said, a lot has been happening lately.  I will start off with sharing a little about what has been going on with me.  I have struggled with health issues for quite some time now (years, in fact) that doctors were unable to make sense of... until recently.  I have always been a very active, non-stop, on the go type of a person, but after having my two girls, it seemed things had really changed for me.  I am young, and yet, I began having a difficult time standing up for long periods of time... I was feeling winded after climbing a flight of stairs or walking from one room to another.  I was feeling light headed and dizzy so often that it made it difficult to do everyday things.  I was tired and fatigued.  I was also beginning to have frequent episodes of fainting.  It was horrible, and I felt like my body was completely falling apart.  I was seeking an answer for all of these things.  Unfortunately, every doctor that I had seen told me that it was just anxiety, or that it was just all in my head; that I was a healthy young woman.  The worst comment of all, though, was that I was "just faking it for attention".  I KNEW that none of those things were true.  Yes, my life after Taleigha was born was difficult!  I will admit that.  But anxious!?  No.  In my head?  No.  And you better believe the faking it had a big fat NO after that too.  I felt like I began to "doctor shop" until I could find someone that would give me the kind of time, care, and compassion that I deserved.  I needed an answer!!!

I finally found a doctor that really heard me out.  He took notes and was willing to do whatever it took to help me find the cause of all of my weird, and progressing, symptoms.  After a lot of time and the right testing being done, we were finally able to pinpoint what was actually going on with me.  I was diagnosed with Postural Orthostatic Tachycardia Syndrome (or POTS for short).  It is in the Dysautonomia family.  Dysautonomia literally means the dysfunction of your autonomic nervous system.  Your autonomic nervous system controls all of the things that your body does subconsciously (heart rate, blood pressure, temperature, digestive tract, respirations etc).  Sometimes, your autonomic nervous system can become dysfunctional after a severe trauma, major surgery, or even childbirth.  Unfortunately for me, after having the girls and having major surgery and suffering from a mini-stroke, my body took a turn down this "dysfunctional" road.  A POTS diagnosis was given because when I make any attempt to change body position (sitting to standing), my body doesn't regulate blood flow properly and it causes my heart rate to increase significantly.  My blood pressure is also affected and drops significantly, which causes the fainting episodes.  Major symptoms I experience on a DAILY basis are: tachycardia upon standing, low blood pressure, shortness of breath, weakness, lightheadedness and dizziness, extreme fatigue, migraine headaches, blood pooling in limbs, fainting, severe intolerance to heat, and digestive challenges.  I feel pretty good while I am off of my feet (so if I could sit or lay down all day, I'd be peachy!  Haha!  But with two young girls, we all know that is impossible)!  It literally makes every day life a challenge at this point.  There is no cure, however, there are treatments that can help.  I have trialed different medications, none of which helped.  I am currently trialing a beta-blocker, hoping to help control my heart rate issues.  I am also currently trying to get an appointment at the Mayo Clinic in Rochester, MN.  There is a 9 month wait list for POTS patients.

I am trying my hardest to stay positive about all of this.  The hardest part for me is feeling like I haven't been able to be the kind of Mommy I hoped and dreamed I would be in so many ways.  I have to sit often, and can't run around and play as much I as want to... I have such a hard time even moving some days, that getting lunch for all of us can seem like a huge chore... let alone doing anything fun with the girls!!!  Some days, I struggle just to get out of bed!  I know that I give both of my girls a ton of love and attention in all the ways that I can, and I know that is the most important.  I'm just hoping that someone can find SOMETHING to help out with some of these symptoms so that I can get the quality of life that I really yearn for!!!

For more information on Dysautonomia and POTS:

http://www.dinet.org/index.htm

http://www.youtube.com/watch?v=iJ9bv7jx-Ls

http://www.youtube.com/watch?feature=player_embedded&v=8UPMYNkm6Bc