Wednesday, April 17, 2013

And then there is this

I have failed in my writing venture.  I have plenty of started posts, but nothing finished, so I am trying once again. 

I am angry.  Angry, like a slow burning, starting bubble and boil over and I might just bite your head off if you look at me funny.  That wall, the wall I have that allows me to be in public and around other people broke and as my folks say, I am full of piss and vinegar.  The truth is, I have been like that for a while, but it was manageable, but not anymore.

My 3 yr old, already this year, has had 2 surgeries and I know that she will have at least two more this year.  And that sucks.  Every other month she is having a procedure and I hate it.  To date, she has had 13 procedures that require her to be knocked out; this is not counting all her MRIs.  Her dx, to date, are: cerebral palsy, microcephaly, epilepsy, GERD, non verbal.  She cannot eat, talk, walk, etc.

My nearly 1 yr old...oh and this is where it gets so hard.  We tested, we went to weekly appointments for 9 months to be sure she would be a typically developing child.  We did, again, what we were "supposed" to do.  And maybe that was not fair to her.  All our hopes to see her roll over, crawl, walk, to say momma and help care for and protect her older sister when we are gone...maybe we had expected to much.

My 1 yr old has her own issues and they are: cerebellar hypoplasia, congenital heart defect (hole in her heart), Wolff's Parkinsons White Syndrome (also heart related), reflux, and MSPI.  Oh and she is very developmentally delayed as well

At least, that was all she had until Friday.

Friday,  I was told she is legally blind.

Tomorrow I will schedule when she will have ear tubes placed and when a more high tech vision test will happen.  This test will help determine what, if anything she can see, and what, if anything, can be done to help her.   The vision person on our team, at least on Friday, did not seem that optimistic.

Other than that, the days are turning, her older sister gets to school and things get done.  But, I don't remember when I last slept well and I am pushing the limit as to long a person should go without a shower.  

I just don't care anymore.  

Please don't tell me that God as a plan (and this is where people might get mad), because really?  This Guys plan is to almost have my two girls die and then force them to go through procedure after procedure just to have some form of a liveable life.  I mean in those two words, our lives had to change again and I know we have not risen above this new grief.  And, no, I don't want to know what I am supposed to learn or gain from this experience because frankly I am fucking tired of having this stuff happen to us over and over again.
Oh but there is more.

My baby girl will probably also get the cerebral palsy dx as well. 

yeah.  that is all I can say for now.

except....I don't know if she has even ever seen her mommy....


  1. All I can say is that you are a damn amazing mommy! I think of you often....huge hugs!!

  2. mad..BE VERY MAD ! You are only human. There is not one person that wants to be in your shoes. You have been a fighter since I first met you on 5th grade...KEEP FIGHTING! KEEP VENTING ! You can do this! Grab a 3 musketeers, take 3 minutes to breathe, and cone back kicking and screaming. I LOVE YOU!

  3. Get as mad as you need to so you can get through this. Yes, the professionals will tell you that anger is part of the grieving process, and you ARE grieving. Not the loss of a child, but a loss of your dreams for her, for what she has lost and what she will never have.

    She HAS seen her mommy. Maybe not in the traditional "I see you with my eyes" seeing, but honey, she has seen the love, the endless care and the constant vigilance since that horrible day. She KNOWS your voice, your touch, your smell. She knows when you walk into and out of a room, when you're happy, sad and angry.

    There are no words to comfort you, I have no words of wisdom. You are an awesome mommy, no one could do what you do as well as you do it. We are all here for you and we all LOVE YOU VERY MUCH.

  4. You two are superhero's of a special kind in my book. I am so with you on the, excuse me but screw you God, portion. I have a very strong faith but what/who that faith is in is changing based on life experiences. You, of all people, have a ton of fight in you. And hubby can't be a wimp or you would never have picked him. "Make Yourself" this day that song makes me smile and think of you, bigger than life, fired up and ready to tangle. You got this...I know you do. ;) <3 Char