The place that will be doing the "study" on Lilah's blood is only looking for one thing. Wait a minute here...I don't want them to look for JUST one thing. I want them to test for ...everything. I feel like I am talking and talking and no one is listening. I thought that Aaron and I made ourselves PERFECTLY clear when we said, "we want to know...whatever it is. Please test for everything."
When Lilah was 9 weeks old I begged for a blood test for Lilah to see if there was anything else other than her eyes. Cossio didn't see any reason to test for it, but he did it for my peace of mind. Little did I know that those 9ccs only tested for broad spectrum karyotype. Her karyotype came back..."normal." Normal is something that needs to be removed from the medical dictionaries all together. Really! What is normal anyway? Perfect legs, perfect head, perfect arms, perfect eyes? perfect? Our society has pushed into us all that we must "be" a certain way or "do" a certain thing in order to "fit in." A friend of mine once said, "in Jesus' eyes we are all the "in crowd."
I found out Friday that Lilah will have to have her blood drawn multiple times and sent to multiple places. Are you kidding me? There isn't one place that can test...for everything? So we must send her blood to Wisconsin for one test and then draw more and send it to more places. I hate this for her. I hate that I have tried everything I can and I still feel like its not enough.
Why haven't more Doctors suggested that she have these tests done? Out of all the docs we see...where is the continuity of care?
Have you ever watched that show on the discovery channel where they know there is an issue, but they don't have a "name" for it? So they keep looking and searching and coming to road block after road block and the Mother says, "I just want to know what it is so I can help her".......THAT is me.
I remember the nurse handing Lilah to me and I instantly knew that there was something wrong with her eyes. They kept telling me "no, she's fine"....18 hrs later I learned the truth. I feel like I can't rest until I know it all. What is "it?" How will this affect the rest of her life? Will it just be a "name" and we will finally know....someday...and can take a breath?
Today after Lilah's multiple therapies...blood will be drawn.
Why can't there be one place that tests for it all? Why do we have to put her through it so many times? Is there a way that our "system" could be better and more efficient? Sure seems like there should be a better way....
Friday, September 24, 2010
Sunday, September 19, 2010
Our family believes that prayer is a very powerful thing.
We know that prayers have been answered and the Lord has cleared Lilah's eyes without surgery.
We know that all prayers are answered...but the answers might not be the one we want.
We know that this is where trust, faith, and obedience must come.
We are praying for Lilah to have "normal" results from the geneticist and from the MRI of her brain and spine.
But, we must also understand that HE holds a purpose greater than we could ever imagine.
My friend, Dana, came to me at church last week and said, "I heard this song and all I could do is think of you."
PLEASE click and listen to this song:
Johnny Diaz "Waiting Room"
Dana was right. It is perfect for us.
We are asking for everything in our hearts for Lilah...but we must also trust HIM and know that we may receive a NO....
and we must find peace knowing that there will be a reason why.
I listen to this song and cry because I know that the lyrics are so true.
No matter what....HE holds a bigger perspective.
When I was pregnant with Lilah I prayed for my baby to be "healthy, 2 arms, 2 legs, 1 heart, 2 kidneys, 1 liver, 1 brain" and HE answered, "YES"
I didn't get "perfection" by this world's standards...I got MUCH better...perfection through HIS eyes!
I love Lilah. Thank God for her...all of her!
Friday, September 10, 2010
After we went to the geneticist, my mind began to RACE with questions, thoughts, emotions, etc.
Aaron and I are just overwhelmed with "what if" right now.
IF she does, in fact, have Peters Plus Syndrome
IF she has a genetic problem
IF there is something else
IF I have missed something in all the BEGGING for tests
IF I have failed Lilah in some way
IF I can do MORE to help her
Will a "diagnosis" ever change our LOVE for Lilah? NO. NEVER.
I want to know what, if, how, when, how much, what to do, when to do, etc. so Lilah will get what she needs. I NEED to know how to help her.
After all the emotions I began to realize that I am NOT trusting with my whole heart.
I want and NEED to know "what and if" so I can steer Lilah on the right path...
But.. I also NEED to stay focused on what is REALLY important.
continuing to LOVE Lilah for who she is...
Do the best I can.
I look at Lilah and see LOVE, peace, strength, beauty, and I see God.
Little glimpses of heaven rolled into my beautiful baby girl.
We went to the park the other day and I watched Lilah as she was swinging...
She is LOVED.
She is beautiful.
She is patient.
She is AMAZING.
Thank you God for Lilah!