Ok, my friend Trish blogged about 'what not to say to a special needs parent'. It's fantastic. I have thought about this time and time again and YES...I've gotten every single one of those offensive comments from people in my short time as a special needs parent.
Man..it's so hurtful too.
I have never blogged about my feelings in reference to this subject until now. Mainly because it's always on your heart...but to put it in writing is kinda deep for me.
I say this because I'll never forget the time I was in the NICU. It was day 'somewhere in between 1-94 days). I rushed in to see my child from my 45 minute commute, exhausted from breast pumping off and on all night, serious sleep deprivation and ready to see my child that I could not see all night long. Yes...my little hell.
I come in and see this sweet little nurse with this huge binder next to my child's NICU crib. I ask "are you my nurse?". She says kindly back "no, I'm an intern". I'm perplexed as most interns are holding your baby or walking around aimlessly staring at other nurses.
So, I notice right away she has Luke's medical binder. So, I say "why do you have my child's medical binder?". She kindly and sweetly says back "Oh, well, the nurses said that your child is the most extreme case in the NICU and it's the most interesting case to study".
Ok. Deep breath. I won't go into the details of my next action or comment too much. You can only imagine. All I'm going to say is one word "Administration". Yes, I walked out and headed straight to the nurse administrator and bitched them out for a) not getting my permission and b) just because I was so upset and emotional...I needed to find another excuse to bitch them out again. Literally...I bitched at the charge nurse/administrator in a conference room about my patients rights, my feelings of being hurt, you name it. I pulled out every legal jargon I could because guess what.."it made me feel better and my heart was dying inside".
My true heart hidden deep within was just so upset. I was deeply wounded that they picked my son's case to give to an intern. My baby 'was not normal?'. I was heart broken. I would go into the pumping room and weep. Cry beyond anything I've ever cried before. I was utterly heart broken that they could label my sweet Luke like that. He was innocent. He was mine. He was perfect to me. Damn them for giving that girl my baby's binder. Damn them for that. Damn those people for not wanting healing and for not wanting to claim healing over my child. Yes..there were some of those nurses. Praise God for those. But..they were among few..not many. My sweet blog family... I say this to you ..it was a lonely place to be. Thank God for the Ericka's, the Lisa Allen's, The Debbie's, the lulu's, the church...thank God for those people that walked in that NICU and said "He's perfect Andrea..he's beautiful". God..I craved to hear those words.
Because, the reality is...the nurses stared at me and talked behind my back. Because I claimed healing over my child. I would not label him. My other little hell of faith. (that was hard)
That was my gift from God and how dare them label my precious gift. God knows my heart people. And after writing..I think I need some more healing time. (God will get me there)
So, here I am 2 years later with much experience under my belt as a special needs parent. I've heard it all, seen it all and read it all. Especially from my other special needs friends.
So...my spiritual deepness and my 1 point that I wanted to make originally here. Sorry! I veered off a bit.
Here is the ONE COMMENT from people that always has me perplexed, thinking deeply and trying to find normalcy in the words.
Here is what I've heard since I've had Luke and it's never been the same for me.
You ready?
"We are so blessed to have healthy children".
"I am so blessed by God to have healthy children".
"God sure has blessed me with healthy children".
"I just thank God for blessing me with healthy children".
Yep. That's it. Those sentences above have kept me up at night. They've got me thinking so deeply as here is what most special needs parents say to themselves after hearing the innocent minded parent say this so freely from their mouth.
Here is what we special needs parents think:
"So, I guess God didn't want to bless me with healthy children".
"Wow, God? What did I do?"
"So, my child isn't healthy...does that mean I wasn't blessed by God?".
You get the picture. You see how this can enter a reasonable minded momma's heart. Oh..and God forbid you say this to a parent that doesn't believe in God. Man..your asking for serious hardship as they tend to get mad at God. (for good reason as they know not what they know?) And for those that are mad and believe...I get you. And..you my love..are not alone. It's such a process that only you are allowed the time to heal from. You and God. You'll get through it.
So, I have gone over and over these innocent words and each time I hear it..(and we always will special needs friends) I always say (and please read this entirely)
"God, hmmm, very interesting...I'm so thankful I know you, I know whom you are. I know that you love me, you will never forsake me, you have never left me..this I know. And, I know that all things are perfect from you and that your desire is for me to know you more and more and you love me so deeply that I know I'm precious in your sight..because you say so in your word. So God...thank you for that Beth Moore bible study that broke down the meaning of the word "blessed" for me. I'm so glad that I know what that word "BLESSED" really means in the biblical context. Thank you for showing me that the word "BLESSED" means..." to be in God's presence". Because Lord, I know one thing..my baby is wrapped in your presence. You've shown me time and time again through prayer, answered and unanswered that your presence is there in my Luke. So Lord, thank you. Yes, my baby is blessed with health ---
Translation: "I'm thankful God's PRESENCE is in my son's life. (period)
Yes Lord, You so are present. You so are.
For those special needs parents out there...I love you desperately. I thank God you think the way you do. Because we need 'Warrior momma's'. And that is what you are.
A song for you...click on my myspace page: http://www.myspace.com/andjonbabyluke
For God's glory,
Andrea (mom to Luke)
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