This morning I read an email from a woman with a son with the same deletion as Lilah. I read her email and at first I was SO excited that not only the link(that allows others to find Lilah and her deletion) worked, but that she wasn't alone.
Joyce also sent me a link to a study done in Spain about 8 other children with the same Chromosome 8 deletion. When I read the STUDY (click on the word study to read) I began to cry. Then, hysterically cry. Each term described her to a perfect T.
Why am I crying so hard?
I am not really sure.
Maybe that I stayed so strong during Lilah's IEP when the labels and terms started coming out all over again. Maybe that during that IEP I sat there, alone, with 5 "professionals" telling me all about my child and I smiled, stayed strong, fought for her, got her the services she needed, but I was alone in my fight. Maybe that I have been fighting, ALONE, for so long. Maybe that reading each one of those "lists" gets overwhelming. Maybe that sometimes I just NEED to cry.
I am not really sure.
Right now my emotions are just all over the board...
so glad there is more information
dislike the labels
need labels to get her the services she needs
I shouldn't feel sad. I should know it is just words that are listed on a study
this is Lilah. She is low toned. She has corneal opacities. She is delayed intellectually....
I don't want to react with tears. I want to react with a sense of "thank God" for the information.
But, there is a part of me that would LOVE to be "normal" sometimes.
**Please, for those of you reading this that do not have a child like mine, or if you do and you have been in "Holland" longer than me, please do not tell me how to feel, that my thoughts and emotions are wrong. I am, yes, allowing you all into my brain to see what it feels like and know that this journey that is so beautiful... does have days where you are quite sad. I am human. I am a very transparent person, but also...this website is my journal...my place to give my words and thoughts to God and allow HIM to work in those places of pain and heal me. I am following HIS call by being open with you all. Please don't bash my heart...for I wear it on my sleeve and it is bruises easily. Thank you**
Yes, I would like to be "normal." I would love to walk into Wal-Mart without people screaming at me through their car window for me to "move faster, pick her up, ugh" because I am allowing my child to "walk" slowly holding my hand from the handicapped spot to the door for more therapy.(yes, that did happen 2 weeks ago and the woman teaches at the school where my girls attended last year....another reason I home school...I don't want people like that teaching my children about patience, love, acceptance, etc when they obviously have none themselves(yes, that teacher was always like that in the school)) I would love to be asked to go to play groups and have the other Moms talk to me. I would love to be invited to events where Lilah can attend and not have people invite us because they feel sorry for us. Then, I wonder, is it really just me? Am I the only one that feels this way? Is there something wrong with me? or am I just having a rough couple of days and tomorrow will be better and I will have a new perspective?
I pray that the latter of all of this is true...
That the truth really is....this is just a moment of VERY honest, real, open feelings and that I cannot be strong every minute of every day. I still love my child...JUST as she is. I am still a VERY faithful follower of Jesus. I am just broken today.
This I know...
somewhere after I have bawled like a baby and asked God why again and told HIM how much it hurts...somewhere...somehow... I have FAITH...
HE will restore my heart and make all things new and HE will allow me to "see" better than I do today.
Right now, I have opaque corneas.
Right now I am at a loss of how to make it all work. Right now my house is a mess, I am covered in laundry, Lilah's paperwork is all over, my home school closet needs to be organized, I have 13 sessions to edit....and I am re-living each moment of the last 3 years.
I know how far she has come. I know that God isn't finished with her...or me yet. I know that this is just one day.
I need this cry. I need to give it all to God. I need HIM to come and remind me of truths.
And even when I am alone in this world....I am not alone because HE is always with me. Jesus will never forsake me. This truth I know...even as I sit and bawl and ask HIM why again.