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".

Blessed

It is sometimes hard to even fathom how fast time seems to fly by.  Somehow we manage to go day by day without even recognizing how quickly things pass.  It is already February, and I feel like it got here in the blink of an eye (so I apologize ahead of time for the length of this post, but I haven't been able to write in a while now!  Oops!).

We have been extremely busy (although, I feel like that isn't something new in our life).  I have gone through moments of feeling completely defeated over the last several weeks, but my children, and the amazing girls that they are, always seem to lift the weight of "life" off of my shoulders at just the right time.

Taleigha has yet again made incredible progress over the last few weeks.  I am so excited and so very proud to say that she has now learned how to get into a standing position without the help of a stationary item.  She can actually get from sitting to standing all on her own!!!  I can't help but get tears of joy as I watch her strength as she does this.  Just since the middle of January... the progress is just so monumental for her.  It's still a very new development for her, but she's doing it more and more each day.  She has also made a lot of effort lately in trying to speak.  Her main forms of communicating right now is through sign language and just simply pointing to things, but we can tell that she is really trying to make new sounds and form more words!  She even shocked us all when she blurted out "Bubble" as Daddy was blowing bubbles in the house last week!  She then followed that with a sound, "pop" as she would make those silly bubbles disappear!!  Again, I am just so proud of her, for all that she does.

We finally received a phone call from the specialist regarding Taleigha's sleep study that was done in December.  (There may have been a fairly demanding phone call that prompted this call, but I was so tired of playing that waiting game.  I had called numerous times without receiving a call back, so my patience was running low.  I just wanted some answers.  I didn't go through that sleep study to sit here without one.)  The doctor did explain that there was no sign of any medical reasons that would cause Taleigha to have such severe sleep disturbances (ex: heart problems, breathing problems etc), which is obviously a good thing.  However, at the same time, it does make it a bit difficult to "pin-point" what may be causing the issues.  She explained, in as simple terms as she could, that it is a very big chance that Taleigha just might not be "wired" the same as a typical child.  It was apparent that she was going through all stages of sleep (one entire sleep cycle) in about an hour or less.  She said that it may be that Taleigha's brain is telling her one thing, while her body is telling her another, making it very difficult to stay asleep.  When Taleigha wakes, it is a very "disturbing" feeling for her and causes a lot of problems.  She could also be dealing with some night terrors as well, but at this point, we aren't sure.  The specialist did suggest/recommend that we would try giving Taleigha a medication that could help her sleep.  She reassured me that it was not supposed to act like a sedative, but just something that could calm her enough to help her stay sleeping, getting restful sleep throughout the night.  She then said something that really struck a cord with me.  There are negative long term affects that Taleigha's sleeping problems could have on her.  Dealing with such severe disturbances nearly every single night could really make things difficult for her.  She could start having increased irritability/moodiness and behavioral issues, difficulty focusing, and could even have decreased developmental progress, to name a few.  

I have to admit, my husband and I were a bit hesitant about using a medication.  Actually, we have been hesitant for quite a while now.  But we knew that we needed to really sit down, get as much information as we possibly could about the medication, and make the best decision we could.  We have done nothing but keep the best interest of Taleigha in mind throughout this journey with the difficulty sleeping, and we needed to stay focused on that fact.  That we wanted the best for TALEIGHA!  I would live the rest of my life without sleep if I thought that it was in Taleigha's best interest to not be put on a medication, because it's not about the sleep I wish I was getting (However, I have to be completely honest, even though I said, and whole heartedly mean, that I literally would go without sleep for the rest of my life if that's what I needed to do, it has been the hardest aspect of my life to deal with.  I know that the sleep deprivation that I have experienced over the last 2 1/2 years has really started to change me.  It's taken it's toll, and that, I believe, is an understatement for what it has done to me.  I want more than anything to get the "Brittany" that I used to be back.  I want that, because I want to be the best for my two precious girls, and I cannot stress that enough!)  Once we sat down and really discussed this entire issue, we realized that a medication may very well be what is best for her afterall... for us... for several reasons really.  One: I completely agree, and see now, that there really are negative affects that sleep deprivation could have on Taleigha.  Two: It really isn't in the best interest of Taleigha (or Taelyn, for that matter) to have a Mommy that is so sleep deprived that she can barely function each day.  They don't deserve that.  They deserve to have restful sleep themselves, and to have a Mommy that is well rested, so that we can fully enjoy each new day.

Okay... So we made the jump!  We decided to go for it and try the medication!!  Yay!  A decision was finally made, and we were feeling confident about it.  Well, we went to the pharmacy to get the prescription filled, only to find out that there is not a single distributor in our entire area that has this medication available.  Therefore, we now have to wait things out... again, and try to get some answers on where to go from here, because we cannot get the prescription locally at all.  Wouldn't that just be our luck?!  I guess we will be making a lot of phone calls to figure this out.  Until then, my patience has to stay strong!

And, as always, there is no way that I could go without talking about my little munchkin, Taelyn.  She has just been making me giggle non-stop lately.  We now say "Smile Tae!" and she makes the goofiest face, with a crinkled up nose and squinty eyes, and her little "toofers" sticking out!

Yes, This is her "smile" for Mommy!

 It's so wonderful to see her personality shine throughout each day.  I was just looking back at some pictures from the day that she was born, and as I sit here feeling like that was just yesterday, I am reminded by a precious little voice, that time is going quickly and she has grown up so fast.  She's an angel!  I just can't say this enough, she makes my life that much brighter because she is in it!

  

I am so blessed!  

I am so so blessed!