Thoughts on Selah Grace

It's hard to say where my mind is at. I feel like my feelings have jumped around so much over the past 2 weeks, I can't even keep up.



About 2 weeks ago, I had started to get a little numb.

Then Brian went out of town for 4 days, and the chaos of being with the two kids that week consumed me! Phew! I don't think I've EVER been happier to see him walking through that door...ha!



(On a crazy side note, I promise SG knew her daddy was gone. She was so fussy while he was gone and her reaction to him coming home was priceless. I was nursing when he walked in. She heard his voice. Then her eyes started darting around... she stopped nursing... He came behind the couch and started talking to her and her eyes just fixed on him. Sooooooo sweet!! Plus, I used to brag about my amazing swaddling expertise... but I've got nothing on Brian. He is the BEST SWADDLER EVER. She might as well just fall asleep when he gets out the blanket! :) )



Anyways, I went to bible study on Wednesday of last week (had two pages done... baby steps I guess). A couple people asked about her and I was just really blunt. It's easier to just say it and act like it's fine. "Oh, she might be a blind little person. Anyways, how are things going with you? "



But then, a girl in my study asked because she had seen the prayer request and was absent the week before. I kind of blew the question off with a vague answer (just tired of answering it at that point).



And she tells me about a syndrome that her daughter was born with. Her daughter who was sleeping peacefully in her sling. Her daughter who is just months older than Selah Grace. A syndrome they were told about right after she was born. A syndrome that has some of the same characteristics of conradi-hunermann.



And I flash back to 30 minutes earlier, in our study. Remembering that this girl had all of her study done. She was offering up thoughts on different questions and sharing some of her answers. And I had been sitting right next to her. With a really bad attitude. Complaining in my head about the unfair stuff going on with my daughter.



Here I am. Complaining.



Yet, here she is. In the Word.



She stayed on my mind all day. And I emailed her that evening. I didn't even know what to type.



Somehow, something came out that made enough sense for her to write me back. And she has such a different perspective than me. Confident in His will. Reassured by His promises.



She's right.



And I prayed. That God would help me change my attitude.

I hear Him say He doesn't make mistakes. And for the first time in weeks, I believe it.







I sat with God. And remembered carrying my daughter inside of me. The moments of fatigue, and draped over the toilet. The moments of exhilerating joy as Brian and I felt her kick for the first time. The moments of exhaustion while moving this summer. Moments of pride on the beach with my beach ball belly. Moments of fear before giving birth. And the whole time, He knew. He knew her beautiful little face. And he knew about her crazy little x-chromosome.







And I thought about taking Zac to get shots. When I knew the pain he was going to endure. And I would watch him happily run into the dr office, excited about stickers and lollipops. Knowing that he was going to be in some pain before he'd be able to find joy. And the rewards.



When he gets shots, he begs and pleads for it NOT to happen. He screams and yells. Sometimes he even kicks! But, the whole time... he clings to me.



He clings to me during the pain. Sometimes, so hard that it hurts me. And afterwards, he sometimes cries in my arms. And then, he finds the joy in the stickers and lollipops and whatever cool bandaid he has. And he talks about how that really hurt, but he's okay now.



And he doesn't hold it against me. Or blame me. Or stop talking to me. And of course, I see that I've done that with God.





Every day in my life, every day in Selah Grace's life... all ordained by Him. No surprises, no mistakes.







Two sweet friends gave me a book (thanks so much Cindy and Andrea!!) called Extraordinary Kids. (They even had it signed by the author who gave me her phone number to call anytime!)

My feelings were like a big huge pile of laundry on the couch, and this book helped to sort, iron, and fold all of them.

I've cried through the whole book and HIGHLY recommend it to anyone going through anyone who has a child with special needs.





But, that left me with my struggle of HOW to pray for Selah Grace. Are we supposed to pray for miraculous healing? For divine intervention? Or do we pray for His will and peace to accept it? And who wants to HOPE only to be disappointed?



But I've learned that I don't have to have hope in doctors. Or test results. I don't hope for healing. I don't hope for this all to be a mistake. (okay... in weak moments, yes I do...)



My hope is in Him alone. And I know that will never disappoint me. His hope produces joy and peace.

Rejoice in our confident hope. Be patient in trouble, and keep on praying. (romans 12:12)



And my prayers a lot of times are for ME. Because my attitude about Selah Grace will affect her before I know it.



And my prayers for Selah Grace are that whatever happens in her life, it is fruitful. That her joy will be mulitiplied. That her life will be a testament and bring Him glory. No matter what it looks like.





Every once in a while, I get a glimpse in my mind of what her life could look like. And there is a part of me that wants to just kick and scream and yell. IT'S NOT FAIR. She deserves a normal childhood. And it's just NOT FAIR.



But we aren't promised what we think is "fair." We aren't even promised tomorrow.



Hope is produced by endurance through suffering.



Because of our faith, Christ has brought us into this place of undeserved privilege where we now stand, and we confidently and joyfully look forward to sharing God’s glory. We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with His love. romans 5:2-5





Suffering. Ugh. But believers are promised that. We are promised some suffering. I don't want to pray that we skip over the suffering. Because I know that fruit will come from it. And we can't be fruitful without being pruned. Even though pruning hurts. And with His help... hopefully my fruit will be big, beautiful, tasty, and enough to share with everyone I know.


And I think - Hey God! This is going to be so hard watching my child struggle in any way.

And then I remember how He watched His own son suffer. And die. Because he loved me. Me? Yeah... me. The ungrateful one!

And I see that He knows exactly how I feel.


My new book is great about going through each stage of parenting a special needs child. The first chapter is called, "Dealing with Diagnosis and Moving Toward Acceptance." (And I think I finally am accepting!) Each chapter has a list of scripture, how to find resources, how to deal with doctors, with family/friends, with anxiety, marriage, how to be an advocate, etc etc etc.

I think I've gone through the stages of grief: denial, anxiety, fear, guilt, depression, anger, and acceptance. I know I might revisit these. But right now I'm at acceptance.


10 years ago, I found myself in a place where I was relying fully on God. He was there for me in every way. Gave me a hope and peace and comfort and forgiveness that - looking back now - I can't even fathom how I trusted Him that much. But boy, was all of that redeemed. If I could praise Him in that storm, then surely - after being SO blessed - I will praise Him now.


Sweet Selah Grace. Our little Selah-Baby.

Mommy and Daddy can't wait to see how your life will impact His kingdom.