Hear my prayer, O Lord, and give ear to my cry; hold not your peace at my tears! For I am a sojourner with you, a guest, like all my fathers.
When we became first time parents we were young and full of great expectations. We had it all figured out before she was even born and we couldn’t wait.
But with our first born baby girl came unexpected seizures, countless specialists, and endless lists of medications that never helped. We had strangers in and out of our home to help with services, therapies and who knew what else. With her came an overwhelming list of ways to try not to fail her and endless mommy guilt and a heart broke in a million pieces.
Being LilyAnna’s mama wasn’t going to be easy and I didn’t feel adequate.
We prepare to advocate for our littles, the ones who can’t get by on their own, the ones who can’t put together a proper sentence to get their needs met. We prepare for those years and plan for the next ones after that to lead up to school and friends and sports or dance. We expect to eventually, tearfully, tell them to spread their wings and not to forget to call home.
It’s just not how our first born has grown. At nearly 14 years old she has never been able to advocate for herself. She has never been able to utter one single word from her mouth. Not a single word. Not ever. Along with not being verbal, she has never taken one step unassisted. She has never fed herself. She is dependent on us for absolutely everything.
She was born with one teensy, tiny gene not complete and it causes her to have explosive epilepsy that wracks her body daily as well as robbing her of all those things we take daily for granted.
As her mom I’ve spent many nights crying into my pillow begging God to cure her, fix her, change her. Crying out, why me, why her, why us? But God loved me through all that mistrust I had in him and while I felt weak and broken, he was building me stronger and braver.
We (my husband and I) have been her biggest fans through all these years and while it certainly wasn’t overnight, we definitely learned something quite amazing in these 14 years.
Lily didn’t need fixed.
Our hearts did.
Lily is perfection. She is perfect in God’s eyes, as well as our own. Her life isn’t easy, but she’s quick to smile and easy to please with some pudding and some hugs.
I remember like it was yesterday (although it’s been years ago) me crying and saying “God! Stop her suffering!” And a whisper in my head said, “Whose suffering?” and HE was right. Who is suffering? Me, who can’t fix her? Me, who still wishes for days that she comes blazing into the room with a story about how her day went? That’s me suffering from losses. Not her. She is happy. She is brave. She is comfortable every day.
So who is suffering? It was me and just understanding what that question meant changed everything. Although my acceptance is always evolving, it started right there with God asking me the right questions and more importantly, me hearing him when I was finally quiet enough to listen.
The love I have for Lily and her incredible siblings who have come along the way is something that multiplies daily. God knew the woman I could be when I put away my own selfish desires and looked to him. He also knows my hurts and what breaks my heart and allows me to grieve when I need to and comforts me in my pain.
There is no exact formula to accepting that thing that separates us from God, except for, well God.
It’s digging into his word, singing his praises and crying out to him. It’s having that personal relationship and hearing him when he whispers to you, even when you are in the middle of screaming at him. Sometimes, especially when you are screaming at him.
Life can take us to some real dark places. If we don’t have faith in God to be our light we will stumble and fall over and over.
Life will never be easy. God is our light in this world and gives us eternal hope.
Inspiration and Insight
Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.
The LORD is close to the brokenhearted and saves those who are crushed in spirit.
What in your life are you having troubles accepting? Where do you feel neglected by God? Take some time to dig deep and look inside. God can take it. He wants authenticity with you. Tell him where you hurt and pray for understanding. God doesn’t make mistakes. He loves us deeply and desires a relationship with us. If you know what is blocking that, pray for God to help you see it differently.
Take some time to listen to Hillary Scott’s song Thy Will. It is a song I play on replay when I am struggling with a hurt heart. Trusting in his will is a safe place to rest.