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

Am I Cut Out For This?!

Am I cut out for this?!  Am I strong enough?  Patient enough?  Am I doing things right?!  Wrong?  Am I making things better?  Worse?!  Am I loving her enough?  Am I helping enough?  Am I helping too much?  What is she thinking?!  What is she feeling?  How is she feeling?!  What does she like?  Not like?!  What does she want?!  Not want? 

...Am I good enough?!

Today... It was a day filled with anxiety, frustration, a big of anger, and in the end... regret.  My mind was racing and my heart was heavy.  Today was one of those days that I couldn't handle.  I found myself asking a million and a half questions... all of which, I didn't have the answers for.  Today, was challenging.

I have days like this once in a while, and at the end of the day, I feel like I am screaming out, "Am I cut out for this!?".  Taleigha had a rough day today; meaning, it was a day filled with a lot of crying and, for lack of a better term, whining.  Absolutely nothing pleased her today.  She seemed irritable and frustrated as well, and I couldn't figure out how to make things better for her.  I JUST WANTED TO MAKE 'IT' BETTER, and I failed, yet again.

"Am I strong enough?!"  Am I able to live this life as a parent of a child with special needs?  I doubt myself.  I doubt my capabilities of being a good Mommy to Taleigha.  This journey with her is ever changing and it's difficult at times to understand why this journey was given to me... to us... when I don't always feel like I am capable.  I know that God has truly blessed me with Taleigha, and I would never want anyone to think that I felt otherwise.  It's just that, I get overwhelmed in moments that feel impossible.   

I get mad at myself.  I get mad that I allow myself to lose my temper and get frustrated.  I get mad that I yell and feel like I want to run away.  "Am I patient enough?!"  I get mad that my patience flies out the door first thing in the morning, and I never can quite get it back.  I get mad when I don't sound positive and encouraging to her every second of every day.  I get mad... at myself!

I feel like I don't always know how to "parent" Taleigha.  "Am I doing things right!?"  It is a constant question.  Because she is non-verbal, I feel I am living a continuous guessing game.  That gets hard when you live it 24/7.  The questions: "What is she thinking?!" "What and how is she feeling!?" "What does she like and not like?!"  What does she want and not want!?", are the reality of my life.

I hurt.  I hurt for her.  I hurt for her when she throws herself to the floor or hits her head out of frustration.  I hurt for her when she whimpers and cries for an entire day.  Why can't I figure out what it is that she needs or wants!?  Am I not good enough?!  I hurt.

I try!  Oh, I promise, I try... to make sure that I encourage Taleigha to communicate the "correct" way, when I know she is able.  But I often find myself wondering if I am enabling her to not communicate the "correct" way.  When she starts 'whining' what she wants, I try so hard to encourage her to "tell" me what she wants.  Most of the time she refuses, and I end up just getting whatever it is that she wants, without her communicating it to me the way that I know she knows how.  I almost feel like I let her "get away" with more because she can't communicate a lot right now.  So, everything I do is followed by the question, "Am I making things better, or worse!?"

"Am I loving her enough?!"  I fell in love with this child the moment I laid eyes on her.  That has never changed, and never will.  She is my everything.  I never knew such a love like this existed until she came into my life.  I KNOW I love her more than words could ever explain... but does she feel that from me!?  I fear that when days like today happen, she only feels that frustration and sometimes anger.  I don't ever want my precious child to feel like she is a burden to me, or that SHE frustrates me.  SHE doesn't.  It may be the circumstances, but never HER!  I want her to know that... always.  

I regret today.  I wish it had never happened.  I want to erase it and start again, but I can't.  What I can do is strive to make the rest of our days, better days.  

I pray for more strength and more patience, because she deserves that.

What I can't get out of my mind is the fact that I truly believe... 

she quite possibly asks herself all of these same things!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I found this on HopeLights.

I desperately needed this today.

I needed this.

"From your child with special needs: "Some days I know you get the end of your rope. We get stuck. I'm in here though and if I could make things easier, I would. Look at how far I've come because of you. Don't give up on me! 

I love you!" ♥ 

I'm Back!!

Since there is so much to catch up on in my "absence"...

I guess I will just start by saying 

"I'M BACK!"

I apologize for disappearing for the past several months, but life just got to be a bit too much to handle, and I really needed to focus on myself, and on my family for a while.  I am ready to start typing away again and sharing in on life and it's craziness!

For starters, March - June, Clint and I helped build our brand new home with Habitat for Humanity!!!  We are so thankful and feel so incredibly blessed that we were able to have the opportunity to learn and grow so much throughout this experience.  We put in over 900 sweat equity hours during the course of our Habitat journey!  It was 100% worth every second of it all, as we finally have a place that we can call home!!  We moved in over the Fourth of July and have loved every minute of it since!!

June started out with a lot of challenges for us.  Not only were we finishing the build of our new home, but I was ending employment because of several reasons (including my own health challenges) and moving back into my role as a full time stay at home Mommy and Clint was starting new employment full time on top of his already part time job, and Taleigha was set for surgery, needing her tubes replaced (after having more ear infections than I could keep track of), Adenoidectomy and Tonsillectomy.  June 4 was Taleigha's surgery.  

My Big Girl waiting to be taken back for surgery!

Taleigha, Mommy, and Daddy before her surgery!

Her surgery itself went well, with no complications, however, coming out of the anesthesia proved to be quite difficult.  She had to be admitted overnight due to the tonsillectomy, which made us feel more comfortable anyway, so we welcomed that stay (although hospital overnights are never fun!).  In the 24 hours after her surgery we were not able to get her to take anything in orally, but they sent us home anyway.  I was not happy about that!  Clint started his new job on June 6, starting his 14 hour days, 5 days a week.  I was officially left to handle a 3 year old child recovering from major surgery and a rambunctious almost 2 year old all by myself.  A week went by and Taleigha would hardly eat or drink anything!  I tried everything I could possibly think of trying; pudding, yogurt, applesauce, ice cream, popsicles, mashed potatoes, water, juice, milk, etc!  She didn't want anything.  It had gotten to the point over that week that I was syringing liquids into her mouth as much as I could, but she even started to refuse that.  Our days and nights were filled with a constant achy cry.  She was miserable.  Her eyes began to look sunken in and her body was becoming extremely weak.  I brought her to her doctor and they immediately admitted her to Children's Hospital for dehydration.  She stayed one night and had an IV for fluids and they sent her back home... even though she still wasn't taking much fluids in on her own.  

Wishing I could take all of her pain away!

Another full week passed, and we finally felt like we were making some progress.  She seemed like she started feeling better, and she was finally eating and drinking a little bit.  Exactly two weeks after her surgery, we took her out for her 3rd birthday and to celebrate Father's Day.  She had a pretty good day considering all she had been through.  But when we got home, things suddenly took a turn for the worse.  She started gushing blood from her nose and her mouth.  Clint and I scooped both of the girls up and drove straight to the hospital (which was only about a mile away from our house).  We rushed her in and got her checked in and, much to our surprise, they asked us to take a seat and wait to be called back.  The ER was extremely busy, but we couldn't understand why they didn't think that she was a priority to get back.  After waiting almost an HOUR in the waiting room, with her bleeding and struggling to breathe because of the large amounts of blood that she was swallowing, we were brought back to see a doctor.  I will spare most of the completely ridiculous details of events that took place with the doctor, and go straight to the fact that she ended up being transported by ambulance to a different hospital where an on call ENT took one look at her and rushed her in for emergency surgery to stop the bleeding.  During the surgery, they realized that she indeed had swallowed such a large amount of blood, that it was necessary to pump her stomach.  Our poor girl went through more than she should have had to face.  She was in extremely rough condition, and at one point, I had turned to Clint, while holding my little girl, and couldn't help but feel like I was looking at a dying child, difficult as that may be to even say something like that, it was my honest feeling.  It was the scariest moment of my life.  I just wanted to trade places with her.  I wanted her to be okay.

(I could write an entire book on the malpractice that took place that night, and how incredibly disgusted that we were with everything, but emotions tend to run a little high when talking about it, so I will just leave things at that!)  Overall, the recovery took a month and a half before she was even starting to turn around!!  It took much longer than that before we finally started to see our little angel being herself again.  She is a fighter, and she is so strong, and she pushed through every single difficult day that she faced.  She truly is... a little miracle!

 

She is doing extremely well now, and we are now just weeks away from her starting Early Childhood Classes in September!  I can't believe my BABY is going to be hopping on a bus soon and heading to school!!!

Taelyn has grown up so much in the past several months, I don't even know where to begin with her!  She is definitely 'Mommy's little helper' around the house!  She LOVES to help, in any way that she can, and is always looking out for her big sister!  She is talking away and is literally a little sponge, quickly absorbing everything!  She has a personality as big as the world and is a complete joy to be around!! She is... special!  There is just no other way to explain it!  She brings something into my life that is so unexplainable.  I am so lucky that she is my daughter!

It is absolutely amazing to me how close that the girls are!  They truly are the best of friends (fighting and all)!  They are always watching out for each other, and offer up hugs and kisses to each other often!  I couldn't be more blessed!

I can't wait to be able to fill you all in more, but for now, I think I will end on this note!  I very much look forward to being able to 'type away' a little more often! 

God Bless!

~Brittany

Oh My!!

It's hard to believe another whole month (or more) has passed since I've been able to write!!  If that's any indication as to how insanely hectic our lives have been... haha!

There has been so much that has happened, I'm not exactly sure where to even begin!  Let's start with Taleigha.  She has been doing so well overall.  She is still sleeping through the night since starting her medications (we have had a few rough nights here and there, but nothing that would warrant any complaining on my part!!!).  She seems to be progressing leaps and bounds in certain areas of development right now!  Her language has really improved lately (I think her sweet baby sis is really helping in this area! :) )  She is really showing wonderful signs of wanting to try and mimic new sounds/words.  She is saying "momma, dada, baby, bubble, hi, bye, papa, ball" regularly now and they are clear as can be.  She is trying to say so much more though as well (things like butterfly ;) and it is so precious!).  Her understanding of things has really improved too.  She is doing great with picture recognition!  Physical development has definitely been strengthened quite a bit.  Her stability has increased, along with balance.  She even walked on a playground that had wood chips as it's platform and then proceeded to climb the jungle gym to slide down the slide independently!!!  YAY!  Her and Taelyn both very much enjoy the park!  

Taleigha has had a difficult time staying healthy lately though (actually, our whole family has been sick non-stop.  I feel like we are on this nasty rotation of sickness! Ugh).  Taleigha has had double ear infection after double ear infection.  My poor girl!  We meet with the ENT on the 17th of this month, and I'm pretty sure another tube surgery is inevitable at this point (she had tubes placed when she was 12 months old, but they only lasted about a year before falling out).  On top of that she's also taken her turn with colds, congestion and the flu too!  Taelyn has had her fair share of "yuck" as well.  She's been battling the flue, colds, and croup a few times now.  Oh, and don't worry, Clint and I have taken our turns as well.

I actually just recently had some testing done for some of my own health issues.  I have been really struggling with fainting issues (or close to fainting episodes, where I'll black out) for quite some time now.  Nobody has ever been able to figure out why the "silliest" or simplest things would make me feel so faint.  I mean, nearly everything I do has the potential to make me feel as though I am going to pass out.  I was finally able to get an actual diagnosis for it after the tests were done and I have Vasovagal Syncope.  It happens because of a dangerously low drop in my blood pressure.  Unfortunately, my condition is on the severe side of things, so a lot in my daily life is affected by this.  It's gotten very hard to handle.  I am going to be going through some more tests and meeting with some specialists this month, and will hopefully be able to find something to make this a manageable thing.  

Taelyn is doing wonderful.  Oh my, has she ever grown up fast!!!  She has changed so much over this past month or so.  It's absolutely crazy how fast changes really do happen with her.  I feel like I'm going to blink and she'll be going to school!  Haha!  She is literally trying to copy nearly everything you do or say!!  It is so much fun!  She is talking up a storm now and understands soooo much!  Oh, and may I just add that she has now become quite the little climber!  Goodness gracious!  I walked out of my kitchen on day to find her standing on the top of my dining room table!!  She is going to give me a heart attack, I swear!  She has also found the "sass" too!  ;)  I have a hard time keeping a straight face most of the time because, although I know it is her being "sassy"... She still is so darn cute!!!  

The girls are so sweet together!!  Yes, they have their moments when they aren't so sweet, but for the most part, they are just the cutest best friends!! :)  They really do help each other out so much!  It's so amazing to see how much love they have for each other too!  If Taleigha lays down for bed first, Taelyn is in her room giving hugs and kisses and tucking her in (and visa versa if Taelyn goes to bed first).  Seriously adorable!  I really don't know how I ever got so lucky!!

There is literally a novel I could write at this point about everything in my life, but I think I'll save that for the next update!  I'm very much hoping that it won't be another month before that happens!!  I will try to update as often as I can right now, but we do have a lot going on!!!

God Bless!!!

A New Chapter

We started our journey with Habitat for Humanity back in January of 2011.  It feels like it has taken forever to be able to say this, but the build of our house is finally underway!!!!  I don't think that there are even words to express our excitement!  This is a new chapter in our lives that we are so thankful for.  There has been a lot of hard work and dedication that has gone in to this process already, but it has all been worth it! We drove past our house yesterday and couldn't help but just smile!  We were finally looking at something REAL, something concrete... knowing that in just a few short months, we will be moving into our brand new house!  We are getting anxious to get out on the build site and start helping!  There is a lot more hard work, sweat and probably a few tears that are about to come, but we can't wait!!! :))

Our Empty Lot

Basement Walls Poured

OUR HOUSE!!!! :)

Feel free to take a look at the link to a video on our Journey to Habitat!!!

(There is a family that speaks before us!)

Posselt Family Journey to Habitat 

Life with a Little Bit of Crazy ;)

CRAZY!  That is an understatement for what I feel like our last several weeks have been.  For starters, sickness just about wiped out our entire family.  Two weeks ago Monday, Taelyn got hit with the flu.  Tuesday was Clint's turn.  Wednesday of course was Taleigha.  And why not top off the following day with myself getting it!?!  Friday then went right back to Taelyn when she ended up getting Croupe.  Saturday and Sunday was awful as both of the girls were very ill.  We were very much hoping for a better 'next' week.  Well, no such luck.  Poor Taleigha ended up with a dreaded right ear infection.  On top of that, they both have been dealing with the other "crud" (the runny nose, cough, etc.).  Taleigha really seemed to struggle the most, as her seemingly fragile little body just couldn't shake everything that had hit her.  Now this week, we again had hoped for a better start, and yet again, there was no such luck.  We ended up bringing her back in to see her pediatrician, just to find out that her antibiotics didn't work for the first ear infection, and she now has a double ear infection!!!  My goodness!!!  Need I say any more than that one word...?!  CRAZY!!  We have to be on an upswing now, right?!

On to a big "Taleigha Update"!!!  As you know (from a lot of my previous posts), Taleigha has struggled so severely with sleeping issues and we've been trying and trying and trying to find some sort of resolve.  After trying just about everything we possibly could... we made the decision to finally try her on some medication in the beginning of February to see if it would help her sleep.  She was on that medication for roughly two weeks with no real positive change.  We just truly felt at that point that this medication was not going to be our answer, and that it really wasn't in Taleigha's best interest to keep trying (adjusting medication levels really didn't feel right either).  If anything, we felt like it was making things worse (especially looking at her daytime demeanor after starting this med).  The doctor agreed to ween her off of it.  She said that there was one more medication that she was willing to try.  We wanted to let Taleigha get a "fresh start" so to speak, so we waited a full week to make sure that the other medicine was surely out of her system before we started her on the new medication.  Last week Thursday (night) was her first night taking her new med, and... drum roll pleeeease... Taleigha slept completely through the night!!!!  Not only that, but Taleigha has slept through the night, every single night since then!!  YAY!!!  We are up to five... FIVE... full nights of sleep for her!  (All of you that are reading this right now, if you would be so kind as to knock on some wood, I would greatly appreciate that!! ;) Lol.)  I could really get used to this, let me tell you!!! ;)  

On a serious note, we honestly just keep praying that this continues to work for Taleigha, as she truly, truly neeeds this positive change in her life.  For so long, I felt like I was looking at my daughter and could do nothing but watch her already frail body grow weaker as the days passed.  This was changing her.  It devastated me.  And so, walking into Taleigha's room on Thursday night, I couldn't help but just sit and watch her sleep for a while.  For the first time ever, I got to see my little girl in a peaceful and sound sleep.  I kissed her sweetly on her forehead and whispered a prayer of thanks to our loving Father for continuing to hold us in His hands!  I cannot describe that moment in words.

"I am a parent of a child with special needs. 

Sometimes none of the pieces fit, despite everything I try to do. 

 But the most important thing I’ve learned is to keep trying. My child is worth it and so am I." ~HOPELights

Anxiety and a Few Tears

Even as I sit here, there is an intense level of anxiety that I feel is completely taking over.  How do I control something that seems to be so far out of my control!?  Right now, I can hear the sound of my precious daughter, fighting through her nighttime disturbance/'episode', and it breaks my heart.  There is nothing more that I can do, as I have tried everything imaginable.  I wish I could make all of this go away.  I, honestly, want this "fight" to be over.  I don't know how much longer that we can continue this way.  I hate to see my daughter have to go through this night after night after night.  I hear her cries and I walk into her room, I crouch down by her little bed and I gently try to rub her body.  I want to be that one thing that soothes her.  I want to be able to calm her screams.  I want to see her soundly sleeping, like the angel that I know she is.  But that's not how it works. She thrashes, and trembles, and throws my hands away from her.  I know that she doesn't know what is going on while she's doing these things, but somehow, in the moment, it doesn't stop my heart from hurting.  In a whisper, I say her name.  I tell her that everything is okay, and that Mommy is right by her side.  It goes without effect.  I can't hold, hug, or kiss these horrible moments away.  

I try everything in my power to make sure I do the "right thing" as she goes through these 'episodes', but I don't even know what the "right thing" to do is anymore.  I feel like I have gone through this never-ending cycle of trial and error, all of which leads to the same thing... no change.  We are on day four of her medication that they prescribed to help her sleep, and I do realize that it is only day four, but again, there has been no change.  Nothing changes!  Why?!  There has to be a solution, right?  Why can't I figure this out?  Why can't someone figure this out!?  There is a constant struggle between what a Mommy wants to do for her child, and what the doctors or specialists say to do.  Everyone is going to have their own opinion on what I should or shouldn't do, I suppose.  Quite frankly, unless you are the one living this nearly every single night of your life, I think it's going to be a lot easier voicing those opinions.  Opinions like:  "You should do this, You should do that!"  Or maybe even on the flip side, "You shouldn't!"... "You shouldn't pick her up, it could make things worse."  "You shouldn't say too much, it could make things worse."  "You shouldn't bring her blankie to her face, it could make things worse."  "You shouldn't go running the second you hear her cry, it could make things worse."  There are times when I do beat myself up over the thought of "what if I am just making things worse?" with things that I try, but in the end, I know where my heart is in all of this, and I know that I am trying my best and that's all that I can do.  But... I feel so helpless.  "I don't know what to do... I don't know what to do!"  It's a phrase that often passes my lips.  With every minute that passes on nights like these, I feel a greater level of exhaustion, frustration, anxiety, sadness, heartache... pain.

Some nights, although not many, Taleigha does become completely awakened after her 'episode' of the night terror or sleep disturbance, or whatever else you'd like to call it.  (For me, simply 'episode' is the best I can do to describe whatever this is).  When and if she wakes, things almost seem to go from bad to worse.  She suddenly looks terrified and confused.  Tonight, my heart broke that much more when she looked at me and signed "help", which was followed by a look in her eyes that I cannot even begin to explain, and then she shed tears.  It was something that made me break, and uncontrollably, the tears then began to pour down my face too.  If only she could tell me what she needed.  If only she could tell me what was wrong.  She then reaches out to me, clenching the sides of my arms as I begin to pick her up to hold her. Although, at this point (again, now that she is awake), this does give some comfort to her, but only for a short while.  She no longer wants to go back to bed.  It is literally as if she is scared to death to lay back down and close her eyes.  And so another battle begins with trying to get her to lay back down and snuggle her into bed and have her fall asleep... but it's not that easy when, again, there is almost a fear in her to actually do these things.  It is a hard sight to see.  Well, it is for me anyway!

How do we continue like this?  I can't help but keep asking this question!  It has literally gotten to the point that I feel like we are just trying to survive this.  It may sound silly to some, but it is the truth.  How can anyone, at any age, continue to live with this amount of sleep deprivation?  For me, daily tasks are becoming daily struggles, as I feel like I can barely function.  I honestly have no idea how Taleigha keeps going every day.  Her little body looks so tired.  It shows in her face.  It shows in mine...

I need to stay strong!

It is now 3:30am, and after five straight difficult hours, my baby has finally fallen back asleep.  I am thankful that this blog entry could be a bit of an escape for me during those moments when there was nothing I could do for Taleigha.  Those moments when, unfortunately, I had to just walk away and take some time to gather myself.  It may have taken me the full five hours to get this together, but it helped to "get things out".