This is a hard post for me to write... I am a mess. We actually had a really good day, but Evie has decided that since she's growing, she needs to eat in the middle of the night... which isn't real good for my emotional well being!
This is why my heart hurts. A few weeks ago, I called the school district that we live in to see if Evie qualifies for "early intervention," a program that works with kids birth through age 3 that qualify. They do physical, occupational, speech therapies, and others. Since Evie will probably need physical therapy in the future, her doctor and I thought it would be a good idea to start. And it's FREE! That word doesn't come up very often when we are dealing with Evie's care!
Then at church on Sunday, we had a speaker on abortion. Great sermon about loving people. Somewhere in the middle of the sermon the speaker called someone who was handicapped "differently abled" and I thought... hmm... that's a nice revision to "dis-abled." It stuck with me for a while. That afternoon I read the chapter we were doing for our Bible study that night, and Chuck Coalson, the author of our book was discussing the area of abortion when it comes to children who are destined to be disabled. He spent a good deal of ink justifying why it's his belief that they shouldn't be aborted. It really killed me that as a Christian writer, writing to a Christian audience it took so many paragraphs to display why abortion is wrong in this situation. It's so black and white to me. Come look in Evie's eyes. Hold her for a few minutes.
Back to the school district, the nicest lady came by today to do an evaluation of our situation and meet Evie. I love showing Evie off, she has the sweetest demeanor, scrunches her nose when she smiles, and is just a happy baby. And Lyla could entertain a crowd, but that's a story for a different time (: As I was signing the paperwork to get Evie enrolled in Early Intervention, and as we were looking into financial assistance that is available, the weight of the words "Disabled" and "Special Needs" were piling up on me, one at a time.
Do I oppose the use of such words? Absolutely not. There obviously has to be a way to describe the situations that "differently abled" people are in. But as a mother of a child who has "Special Needs" is it ever going to get easier to hear? I mean aren't we ALL differently abled?? My struggle isn't with what that means for her now... she is as content as can be. But what does that mean when she's in school? When she's battling her way through Jr. High with everyone else? When she's an adult? When she's not just "differently abled" but just plain different??? And how do I prepare her for that?
I am doing a short interview on Saturday morning at our church about prayer... so I was thinking about verses that have impacted my life, and my favorite Psalm has always been Psalm 139.
In a passage about God's greatness, David writes:
13 For you created my inmost being;
you knit me together in my mother's womb.
14 I praise you because I am fearfully and wonderfully made;
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My prayer is that we all know that this psalm wasn't just written for those of us who are considered "normally-abled." Evie was created by God. Knit together in my womb. Fearfully and wonderfully made. A wonderful work of God. As we all are. It doesn't need any justification from me.
I'm sorry this isn't one of my more upbeat posts, but as a mom, I am going to need help from other moms who have gone through similar things. I know there are plenty of you out there who are months and years ahead of me on this journey. Could you pray for me? Send me some advice? Books? Scripture? I am pretty good at doing this one day at a time. I just feel like lately with all of the "signing up" for things for our future I have been forced to go to a place I'm not ready to be in yet.
Love you friends, Thanks for loving us. (:
Praying that you remember that YOU are fearfully and wonderfully made--especially to be Evie's mom!!! Praying that as your heart breaks, God will mend it back together and that He will meet you where you are!! I love you dear friend!!!
ReplyDeleteOh Lindsey! I pray for you! Tears are flowing as I read your post as I was just where you are about 3 short months ago and just had all of those feelings flood back! You can read my post about it on my blog http://mi4boys.blogspot.com/2009/10/labels.html
ReplyDeleteFrom the moment we had a diagnosis for Vinny I knew he would be different in other people's eyes! Unfortunately that will always be for our little ones! You can about imagine what I feel inside when I hear someone use the word "retarded"! I want to throw up---scream-! The labels out there are every where!
I remember about "signing up" for things....and connecting with families that have older CdLS children...I couldn't do it until Vinny was about 6 months. I was not emotionally able to. It is so scary to not know what the future holds and easier to just take one day at a time.
We are so fortunate that God has chosen US to raise these beautiful children and help them lead the best lives possible! In our eyes and many others, our babies are PERFECT!
I don't know if it will get any easier, as we are only 18 months into our journey! I just know I would never ever have Vinny any other way. This little boy has taught me so so much!
I am so excited for you and Evie that you have connect with the Early Intervention program! They have so so much to offer! What school district are you in? We are in OPS and have the best case manager! I would love to chat some time about the different services that we get and what has worked for us....
Let's see some pics of the little gal! Would love to see that sweet smile of hers!
Lindsey, from your heart to mine. Now let me speak to yours from mine. This is hard, and the beginning of the "Special Needs" programs is hard b/c of all the paperwork, the IFSP meeting you'll have, and all the evaluating that has to happen. Of course Evie is beautiful, made in the image of God, with gifts that only her Creator could give her. But in this world, the reality is also that she is differently-abled as well...just like her sweet, adorable friend Judah:) It's a hard reality to face, and it's so not fair. There are so many questions, uncertainties, & unkowns. BUT GOD... He's in the future already. He sees the future & has equipped you with everything you need to live a thriving life follwing Him & being Evie's mom! (2 Peter 1:3ff is wonderful!)
ReplyDeleteA moment at a time, friend, just one at a time...
Let me encourage you with this, too: the therapy you'll get from the program will be great! We look forward to our therapy everyt time! Our OT & Teacher involve Ezra & Lydia, encourage me, advocate for Judah, answer questions more thoroughly than the pediatrician, and oooh & aaah over Judah every time! Any tiny step of progress is a big deal to them:) I'm so thankful that you guys will be taking advantage of this program. Funny, I was just thinking about this exact thing yesterday:)
I love you & I'm praying for you. You're so special to me, b/c you, too, are in the lifelong process of loving & caring for an extra special kiddo. And you're right, everyone has special needs. They are just different levels:)
PS Don't you ever apologize for not being upbeat again! You're being real, and that's when others can best minister to you & help to meet your needs. Honesty is...refreshing and beautiful:)
As a special ed preschool teacher in SoCal, many of my students have conditions that could have meant abortion, had they been in other families than the ones in which God placed them. Yes, it is discouraging and daunting, but remember The One who walks with you, who chose you to parent Evie, and chose Evie for you. I never feel sorry for my students, which may sound harsh. But let me explain it by saying that this is the life they were given, and they don't know any different. They can still grow, learn, and develop. Pitying them won't help, but loving these little ones and having high expectations will. These little ones can achieve, sometimes beyond our expectations (hasn't Evie exceeded everyone's expectations already?). And if the world does not see them as fearfully and wonderfully made, if the world sees them as imperfect, as Christians we can only imagine how beautiful they will be in Glory.....
ReplyDeleteOur struggles are a little different at our house, but having a son who is gifted and autistic (in the same child) brings a lot of 'words' at me that really hurt sometimes. On his report card the following boxes are checked for his services: Gifted (check); Speech (check); OT (check); Special Education (check). Spec Ed and Gifted in the same section!!!
ReplyDeleteI think I've finally coped with 'differently abled' and 'autistic' and 'special ed' as words. It took a while and I think I just forced myself to become immune. My bigger struggle and what I choose to focus on is to make sure everyone sees Nathan as Nathan. Not as 'autistic' not as 'gifted' not as anything but Nathan. If I can get a teacher, friend, doctor, woman in the grocery store, etc. to see Nathan as a boy who has struggles, then I feel like we both have won a victory. I wouldn't change Nathan if I could--it's his autism that brings out some of the best of his giftedness. I know a lot of people will never see him as normal, but I want them to at least see him for who he is, not the label on his file.
I don't know if that really makes sense or if it's just rambling. I just wanted to let you know that other moms know what you're going through in this regard. It's not easy!!! And while the rhyme says sticks and stones may break my bones, but words will never hurt me...it's a lie. Words can hurt. I just had to decide that some words will no longer hurt me.
Although, in response to Staci's comment, the word 'retarded' still gets a huge rise out of me. It's not typically used with Nathan, but I have a BFF who's boy has Down's Syndrome. And the word retarded is totally offensive to me and if I hear it used, I'll stick up for the person and fight that word even if I don't know who they are speaking about.
Hold to the scriptures because Evie (and Nathan and every person everywhere) was fearfully and wonderfully made by a Creator who loves us all. Prayers and hugs to you!
Linds -
ReplyDeleteAll I can say right now is I love you... and I am so inspired by you each and every day as I see you. A woman who is holding on tight to scripture and keeping God first and foremost!
Oh, Lindsey I am so sorry you were having a hard time. I know what your going through & will always be close if you need to talk. It is so hard, I have up & down days but I know that everything will be okay with our babies! I constantly search the internet & have found so many people that are living with HPP. A lot are "differently abled" but they are still ABLE! We are doing everything we can to give these two the best chance in life!
ReplyDeleteThe nurses at the clinic are always talking about their little Evie, they love her! She may not laugh yet but she will!
Stay strong Lindsey, you are an awesome Mommy!
Kelsie