Life in a Flash » capturing life one moment at a time.

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god knows.

So we’ve hit a hard patch.  A season of life that seems to have brought lots of questions with few answers.  And while I am mostly upbeat here on this blog…I’ve got to say…there are days (dare I say months) when parenting a child with special needs is daunting.  It’s not always for the obvious reasons either.  Yes, the daily/weekly therapies get old.  The putting on and taking off and putting on and taking off of the orthotics, stretching casts, and shoe inserts makes me want to scream.  There is the hip pain from carrying the 35 lb squirming toddler who screams “HOLD YOU!! I NO WALK!” whenever we are in public.  And of course…the appointments with the pediatrician, neurologist, eye doctor, orthopedic surgeon, preschool coordinator, physical therapist, behaviorist, occupational therapist, speech pathologist, audiologist, and special ed teacher get old.

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But what I’ve found to be most exhausting is the weariness of soul.

Oh, how I love this boy.  Everyday when I wake up…I wish I could take some of his pain and hardship and carry the burden for him.  I worry about his future.  I wonder about all that is happening inside his little head.  I worry that he won’t have friends, won’t learn to kick a ball, won’t be able to write his name.  I worry he won’t find a wife, won’t have children of his own, won’t have a job that fulfills him.  And I find myself weary in the wondering and worrying.

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This is when I am thankful for a God who cares about every detail of my life.  God knows Danny’s future and there is NOTHING that surprises Him.  When we accepted the referral for a healthy infant boy.  GOD KNEW.  When we met Danny in person and our gut told us something was wrong.  GOD KNEW.  When we diagnosed Danny with brain damage and then Cerebral Palsy.  GOD KNEW.  When Danny took his first glorious steps.  GOD KNEW.  When Danny has had seizures.  GOD KNEW.  When Danny started to talk GOD KNEW.  There are no surprises for God.

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We’ve hit another hard patch.  A new set of behaviors and circumstances that tell us that there is still more to Danny’s story.  And while we hate to continue to pile diagnosis on his already very full chart…we know we have to pursue more testing so that he can be the happiest and healthiest little boy possible.   So we spend our evenings sitting across from each other on our laptops researching and discussing.  We pray for God to put the right people in our path to provide healing and help.  We seek out the best professionals to provide opinions and help us wade through the vast amount of information.

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And then we sit back and wait for the answers that we suspect are coming.  And it’s ok.  Because God won’t be surprised whatever the outcome.  God created this little boy and he has a story to tell that is going to blow my mind.  He’s got a plan and a future for this one that surpasses anything I could ever hope or dream for him.  So…I’m determined to watch in anticipation at how he weaves this story.  And when I become weary in the daily struggle, I’m going to remind myself.  GOD KNOWS.

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March 4, 2014 - 10:31 pm

Paige - Oh dear one, I am crying with you. I am thankful HE KNOWS, because so much of this life is so hard. Praising God in advance for what he will do in your son’s life. I love you, baby sis.

March 5, 2014 - 5:41 am

Jen - My goodness, this was exactly what God wanted me to read this morning. We are in a similar season with our daughters diagnoses and it is hard. I look into the future but have to pull back because it is just overwhelming at times. Thank you for sharing your heart. It truly blessed me.

March 5, 2014 - 7:41 am

Phillippa Jenkins - I’m crying too! I cry because of the pain you’re suffering but I cry with joy because this little man could not have found a better Mom or Dad. And HE KNEW, carry on Jen because you are inspiration to so many. Love to you.

March 5, 2014 - 8:32 am

Kristin W - I certainly feel for you. We have far fewer special needs than you, yet I know the level of stress that it can be. All those questions about what the future will look like? I ask myself those same things every day. And every new diagnosis provides both optimism and despair. Thinking of you.

March 5, 2014 - 9:24 am

Gretchen - Crying and praying for you as well. What an amazing boy your Danny is! My daughter is “healthy”, but her heart is still healing many years down the road. She doesn’t know where the anger comes from and as much as I hurt for her, it is so hard on a momma’s heart to have anger and insults hurled my way and I hurt for myself at times also. (Selfishness on my part, I know.) If only we as parents could “fix” it all for our children. Thankful for a God who Knows and Heals.

March 5, 2014 - 3:13 pm

Candice Craig - Crying reading this. My heart breaks for you & for him. He’s got such a joy in his smile. I’m stopping right now & praying for his healing, his future & for you sweet mama.

March 5, 2014 - 4:20 pm

Kathryn - So sorry for your struggles right now! Tough stuff!! Thankful you are finding your comfort in the Lord and thankful that Danny has you to love and help him along—God knows!

March 6, 2014 - 1:25 am

Coy - Thank you for sharing your heart and Danny’s triumphs and struggles. I pray for peace, wisdom, and joy in your family.

March 6, 2014 - 1:27 pm

Julie B - Blessings to you for sharing in the struggles. I try to remind myself daily of just that…We are not in control, God knows what plans he has for us and it is not for us to worry. We have a hard time of course, we are human but for that we can pray for each other that our stresses and worries will be eased in God’s grace (Jeremiah 29:11)

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