Monday, March 12, 2012

Six things you might not know about being a special needs parent...

Yesterday, I read this amazing post about being a special needs parent. The author really nailed so many of the issues that I have felt/battled/experienced (and continue to feel/battle/experience) during this 14-year adventure.

But as I pondered it throughout my day, I couldn't help but want to add to her list. Because while just reading her post validated me in ways I have never known -- there was a component missing and oh, that component must be addressed.


So, here is Maria Lin's basic list in bold -- my additions follow:

1. I am tired. Oh goodness, yes. I often try to downplay this -- blaming wakeful nights with my sweet boy for my physical fatigue. But Ms. Lin nailed it. The level of emotional and physical requirements on my mind and body are taxing. I was raised by a strong woman who stands on her feet making others beautiful all day long and never complains. She always had an amazing meal on the table and usually was simultaneously cooking for someone in crisis and still she never complained. Saying "I am tired" makes me feel inadequate, weak and frankly unworthy to be the "mom" of these wonderful gifts. But exhaustion does color my world. I hesitate to schedule more than the therapies, doctor visits, and sundry extra-curricular activities of my crew because some days being social takes more than I have.

I may detest saying these words aloud -- but believe me, I cry them out to God almost every night. And oh, I rest, I rest in the words from Isaiah 40:30-31:

"Even youths shall faint and be weary, and young men shall fall exhausted; but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint."

Oh, thank you, Jesus.

2. I am jealous. Oh mercy. This is hard to say out loud. I mean, it is right there in the 10 commandments that I am not to be jealous. Right there! And yet, I remember a sweet friend discovering the baby she was expecting was a boy a few years back. Her husband went right out and purchased a baseball and glove. She was giddy telling us about it. I left the room. I was so eaten up with jealousy that I could not be around this dear friend when she was talking about her pregnancy. I felt the pain in the very core of my being. It hurt. And I can call it all manner of fancy names. But the bottom line is, what I felt that day -- and what I feel more often that I can say -- was pure jealousy.

Galatians 5:19-21 describes the acts that come out of a sinful nature and would you believe that right in line with idolatry, drunkenness, sexual immorality and witchcraft is JEALOUSY! Oh my goodness. Believe me when I tell you, I pour out my heart to God on this issue -- I work to give those thoughts to God as soon as they surface. It is a daily battle for my spirit.

3. I feel alone. I remember calling our pastor when the triplets were a year old. I felt isolated after their birth for obvious reasons -- we couldn't have them in the nursery due to their weak immune systems so we missed our small group class plus I spent all my days feeding, changing and loving with little time leftover for showering much less telephoning friends. But by their first birthday, we knew we were facing Cerebral Palsy with our boys. We felt like we were on an island. All alone. Our wise pastor assured me that in five years I would be leading a Bible study again and be surrounded by encouraging women. He was right. But, you know what? I very often still felt all alone.

I never want to be the woman who goes on and on about my kids. I never want "poor pitiful her" stares. And yet, if you refer to #1 and #2, you will realize that being a special needs' mom colors my world and affects my ability to nurture friendships. I can still feel alone.

Deuteronomy 31:6 comforts me immeasurably: "Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave your nor forsake you."

I am never alone.

4. I wish you would stop saying "retarded", "short bus" and "as long as it is healthy".  Really, I just can not say this enough. I think using the r-word is offensive. Stop it already. But making jokes about the "short bus" is not any more acceptable. Stop. You can not imagine how much pain you are inflicting.

And "as long as it is healthy"...well, I understand your heart but I also want to assure you that you will love that gift God is giving you even if he/she is NOT healthy. Please stop saying that. I had a close friend have a baby in the NICU when the triplets were preschoolers. When I called to check on the baby, I spoke with Grandma who assured me that they were praying for complete healing that this child would be "perfect". My throat closed up and I struggled to breath. I tried to voice that I was praying as well. But I wanted to scream. SCREAM, that even if that sweet baby didn't have complete "healing", he would still be perfect. Absolutely perfect. God's plan always is.

5. I am human. Uh yeah. I am not super-woman. I am not stronger than anybody you know. I am human. And while, my amazing kids have made me find strength I didn't know existed -- it is ONLY through Christ.

"I can do all things through Christ who strengthens me." Philippians 4:13

6. I want to talk about my boys/It is hard to talk about my boys.  I am always eager to share what my boys CAN do and as a result may seem to run on and on at times. Please forgive me. I am just so desperate to show you that they are not defined by their DISABILITY. So desperate!!

And some days, we are struggling with a multitude of issues related to their Cerebral Palsy that leaves me unable to talk about them.

"....the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express." Romans 8:26

Thank you, God, for your provision even in my inability to ask.

So, I am sure my list could go on and on. But really, the bottom line is this: I am unable, inadequate and unworthy to be the Mom to any of my four amazing children. I am unable, inadequate and unworthy to be many things -- wife, friend, sister, daughter. But thankfully, for me, I do have super powers -- Jesus Christ. So all of the above does not leave me without hope -- for all that I am and all that I need, is found in Jesus.

Oh, the blessing of hope.


Ellen Stumbo said...

I have seen several versions similar to this but never seen one with scripture. Thanks for sharing.

Kristen Tober Halvorson said...

Quite beautiful, my dear!

Judy said...

Amen Carol. You reached right into my heart and put it on paper.....well paper. I KNOW how you feel/think and your transparency is refreshing. Much love and hugs and oh yes, prayers!

Allison said...

I've commented before, but I just must comment again. You are such an inspiration to me, and I am always so uplifted when I read your blog. I struggle with so many of these things myself, and sometimes my biggest struggle is that I am constantly comparing myself to others. Thank YOU for helping me to realize I'm not alone, and while I am not perfect, HE still loves me.