Stay Positive

I really try to live each day, staying as positive as I can.  I have to remind myself of that on certain days, however...and well, today would be one of those days!

"Stay Positive Brittany!"

Today was just one of those days that I knew I had to prepare for ahead of time.  We had to meet with a specialist today in Madison for Taleigha.  Whenever we have a specialty appointment, we know that things about our daughter are going to be evaluated, dissected, analyzed, picked apart, and assessed.  It's an emotionally draining time that we know all too well.  Some of the analyzing showcase the greatness in Taleigha's already achieved abilities, while other analyzing may reveal the difficult side of our reality... That her abilities aren't quite that of a typical 2 1/2 year old.  Even though we already know the reality of our situation, sometimes it is the hearing and analyzing of it that tugs at our heart a little more than usual (kind of like the example that I had used in a previous blog entry about Taleigha being side by side with a typical child her age.  It's then that the "reality" truly hits us).  We met with a Developmental Pediatrician/Therapist.  Taleigha's medical Geneticist thought that it would be a good idea to meet with her to talk about some "area's of concern".  With as much as I had tried to prepare for this today, I found myself failing to keep a strong hold of the positivity during the day.  Don't get me wrong, I did see the positives, but the (for lack of a better word) 'negatives' tugged on my heart a little harder than I had hoped.

First and foremost, it sounds as though we may have gotten somewhere today regarding the ongoing sleeping issue for Taleigha.  We will hopefully (keep our fingers crossed) be able to have a sleep study done within the next few months.  We explained our situation as this: Taleigha has never been a very good sleeper, and things have only gotten worse as time has gone on.  It would take forever to explain what we've experienced throughout her entire life (and yes, I mean entire life) but, to try and summarize, even as a newborn, Taleigha would sleep for roughly a half an hour at a time, and then she would "wake" with a horrifying cry that could last for hours, and nothing would console her... nothing.  I could hold her, cuddle her, rock her, feed her, dance on my head while singing a song (lol), and nothing could get her to snap out of what seemed like such an unconscious episode.  We have been told by many that it seems as though Taleigha has a sleep disorder: Night Terrors/Confusional Arousal.  Well, as I stated, things have only gotten worse with time.  Right now, on an average week, five out of the seven nights during the week will result in a night terror episode.  Out of those five nights, we will have one night that is extremely severe, in which the episode will last for several hours.  An average night for us is, Taleigha going to bed (and may I just say, that she goes to bed like such a big girl!!!  She gets tucked in, with hugs and kisses, and she goes right to sleep!  She never gets out of her bed!), and sleeping for roughly about an hour... maybe two if we're lucky!  It is then that she starts screaming.  They are heart wrenching screams.  They last for hours.  They are accompanied by her thrashing her body in all directions.  Nothing comforts her.  She doesn't even seem to be awake.  We truly know that these are not behavioral actions.  If they were, she would stop the "behavior" if we took her out of her room, put the T.V. on, tried giving her a treat, or even tried letting her play, but none of those things even make a hint of a change in her during the episodes.  Today, we finally found someone that was willing to stand by us and support our want to have a full blown sleep study.  It will be reassuring to finally have that done, regardless of what the outcome turns out to be, because at least we will then be able to try and come up with some sort of 'plan of action' so to speak on where to go from here.  Maybe there is something going on that is causing Taleigha's episodes.  Maybe it is exactly what we've been told they thought it was, a Night Terror.  Either way, I will feel better knowing that someone is taking a closer look at the situation.  Quite frankly, none of us can continue going on like this.

We also talked about making steps towards getting Taleigha seen by another specialist that could help even more in the speech and language department.  We are looking at the possibility of getting some sort of communication device.  We really believe that Taleigha's understanding of language far exceeds her ability to actually speak.  This could be a huge help!  She may have less frustrations during the day, if we were able to communicate just a tad more than we are able to now (even though she does an incredible job with her sign language, we are still limited on the amount of communication at this point).

The doctor also discussed the possibility of Taleigha having Autism along with Cri Du Chat Syndrome.  For whatever reason, my heart just couldn't handle this!  I mean... I KNOW that it wouldn't really change a thing for us.  It would just be an additional diagnosis.  We would still continue her therapy and doctors appointments that she already has.  Our daily life would continue to go on in the same way as it does right now, and Taleigha would still be Taleigha... the beautiful and amazing girl that she is!  So, I can't quite figure out why this "possibility" would bring tears to my eyes, but it did.  It's almost as though that "possibility" had changed something emotionally in me.  It's something that I have yet to figure out how to explain.

I look at my precious little girl, and I see this look in her eyes and it is comforting to me.  It's then that I can regain some of my strength that I may have lost during the day, because no matter what any day brings, all I have to do is look at her and I know that I truly have a miracle for a daughter.  What a great reason to STAY POSITIVE!

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From your child with special needs: "Mommy, I know that there are times when your strength grows weary, your courage gets short, and things are overwhelming. I feel the same way. Hang in there with me.  I know there is a special plan for us and I pray in my heart that you know how much I love you."

I couldn't help but share this with you.  I found it on the HOPELights Facebook page (which is truly amazing, by the way).  It touched my heart!