Wednesday, November 17, 2010

Entitlement

I'd like to have a break down now.

No, I don't want to break it down..., I meant what i wrote. I think that I am entitled to a emotional break down.

Maybe not, but I would still like to have one none the less.

Id like to fall onto my knees and scream. Maybe smack the ground a few times, pull my hair and throw out some obscene words just to really make my point.

I don't want my mental status to go un-noticed so I would like to be in a public setting somewhere. That way I can feed off of the looks from the random people who are stopping to notice the "crazy girl" freaking out.

Today I would like to ask God why he wants me on my toes constantly. Why every time I really start to see the light he likes to throw something new into the mix. Id like to cry about my childhood and ask why that wasn't enough for him and why he can't just pick on someone his own size. I like to ask when he plans on letting up on Vada and even when he plans on giving Jasmine's bio a swift kick in the ass so he'll quit letting her down so much, that way maybe our home could have a little peace.

I don't want to ask these things. I want to scream them. I want to stand in front of his face and scream at the top of my lungs with every once of strength that I have left in my body and then I would like him to hold me (because right now, I am feeling that small) and for him to tell that everything is going to be alright. That he'll fix it all and make it better. I need to hear that I will be able to watch Vada grow up and that he has no plans of taking my baby girl anytime soon. I wish that there was something that I could do to be able to hear those words.

IS IT TOO MUCH TO ASK!?! God, are you listening?

__________________________________________


I wrote that on Sunday. When my body was so tense with anxiety. When I woke up next to Vada for the second day in a row, having breathing difficulties and a fever for the first time in her little life.

I felt miserable. Tired and Worn.

I felt like It was just one thing after another.

I felt like I wasn't being listened to.

I had told the doctors the last time Vada was hospitalized that I felt that the cause of her heart racing and her fast breathing was due to the Topamax, but no one listened to me. It started as soon as she started taking it, so it made sense to me.

Over all, I felt like I wasn't watching Vada live, I was watching her die.

Sunday, about an hour or two after talking with the on-call Neurologist Justin came home. I had asked him just to sit with me on the couch. I was feeling overwhelmed from the call and overall depressed. Vada was almost asleep. I cant remember now if I laid her on my legs or if I laid her on the floor, but we saw a twitch and then after a few moments we saw more twitches. They were very deceiving. Could they be her having another seizure??? Yes, I think that that is what I was seeing...

11 weeks, that's how long Vada was on ACTH. That is 77 injections that I gave (Not including the other medications I had to inject) and in return we (yes, we. She suffers through them we suffer watching her suffer...) only received Two Days. Two days off of the ACTH and we were greeted with what I thought was my baby girl having another seizure.

For a person who has depression, it is hard to constantly keep your head up. Its hard to look at the brighter side s of things. I'm reading a book called "Telling Yourself the Truth", if only it could be that easy. Over all I have been doing a pretty good job at keeping my head up and my thoughts positive, but this last hospital stay really broke me. Not because of anything in particular, it was just another weight on my already tired back.

Over the past couple of days I have been able to open up to my husband about my fears and about my anger towards God. It has helped to have him by my side. Supporting me, loving me and not judging me. He is one of the only people in my life who really knows me and he is also one of the only people who I am not afraid that he'll leave me because I am not perfect.

Yesterday I took Vada back to Peoria and I talked to her treating Neurologist (he wasn't on call when she was in the hospital) and even though the other neurologist didn't acknowledge me, Dr. Jennings did. In fact he broke the Topamax down for me and it turns out that there is a small side effect that makes breathing difficult. It also makes concentration hard, which could be why she is now suddenly having a difficult time latching on when nursing.

I can not express the feeling of relief that I had when Dr. Jennings said "Okay, lets get her off of the Topamax". Just punching in those letters on the key board makes me tear up.

I know my baby, I always have and when I feel like I am not being listened to on things that are this important, I guess I get scared inside and something kind of snaps.

It took a lot of work on my part, but I did it. I was heard and as crazy as it may seem, I now feel relieved and like things may actually be okay now.

I do not think that I am right all of the time. I don't think that I am above any of her doctors. I just know that I know my little girl. I believe that her heart being larger and sitting on her lungs has something to do with her breathing. That makes sense. But, I also think its an overwhelming coincidence that this all became an issue the moment she started taking the Topamax and I couldn't rest until she was off of it and on something else.

So she is back on Keppra. She started it last night and by Friday she will be on the full dosage of that and fully off of the Topamax. Ill be the first one to tel you if her breathing and heart continues at the rate its been going. If I was wrong, then so be it. At least now I can rest a bit easier knowing that I followed my instinct.

As far as the "seizure". It could have been. Vada's nurse seems to think it probably was one and I kind of do too. Dr. Jennings, however, doesn't seem to be overly concerned. He said because of how I am describing it he doesn't believe that I was seeing a seizure. He called it something, but I don't remember the actual term. We all do it, its something that happens a lot when were almost asleep and our body starts to fall into REM sleep. Babies do it too, the relaxing part.(I'm not for sure about the REM part.) We, however may see it more in Vada than in a typical baby who does not have seizures because she does have neurological issues. I trust Jennings, I trust that it was just what he said. I think partly because I am in a bit of a denial myself on it. I'll watch her just the same and if we do see more, then we will go from there.

Even though I have been angry with God I haven't not tossed him aside. I will not walk away from him. He has brought me to my knees more in the past two years than I ever have been in my entire life but I feel as if he is always giving me the tools that I need. Everything that is happening or that has happened always shows its purpose, in time.

I still have some more overwhelming issues to deal with over the next few days. Some very huge and difficult decisions to make for myself and for in return for Vada as well. Those decisions will ultimately effect our whole family. I'm not ready to share those yet, but I would love prayer. I need prayer.

So there. I had my breakdown. I threw a whole bunch of words out into cyber space and at the same time I fulfilled this need to scream.

I am not perfect. This has been a very hard time and I truly believe that I am entitled to "freak" out every now and again. I feel guilty for having these feelings, especially when I know what I do have and what others have lost. Out of everything that I have just wrote I hope that it is never misunderstood that I am grateful. even though this path has been a bumpy one, I wouldn't change it. I have everything I have ever wanted. Sometimes, I just get it in ways I wouldn't have expected.

4 comments:

CV said...

Sending lots of love and prayers your way! Hope life gets better soon!

Carol

Amber said...

Tara, I have been praying for you and yours...I think about Vada often and hope the best for her! Take care of yourself, I know what its like to have the emotional meltdowns! (they are needed and we are intitled to have them!) Call or email if you ever need anything.
Amber Wirt awirt@molineschools.org

Anonymous said...

tara im praying for you and your family i hope that vada gets well soon.. we love you tara and god knows whats best for you and your family... he wont give up on you at all.. love kimmiemim

Annie @ The House That Jade Built said...

I've been praying for you. I know how frustrating it is to be mad and to not catch a break it seems - not nearly as much as you and sweet Vada, but I understand. Just know you aren't alone in this - my Dad swears when he gets to heaven he's having a "talk" with God to find out the reasons why we have been dealt such heartache with our babies in life. It's not fair, and it makes me mad at times too. However, keep turning to God and he'll get you through it - it's all I know to do. God Bless you and again if I can ever help in anyway I'm here :) Oh and I don't know if this will help, but this is what helps my Mom - if God watched his son being tortured, hung, and killed on the cross for us then he knows what her pain feels like. It kind of helps me, but it is the one thing that has always helped my sweet mOm.