Joni and Friends

A year ago our family was introduced to an amazing group of people here in the central valley. Joni and Friends is a national organization that focuses on accelerating christian ministry in the disability community and one of the main focuses at JAF is providing resources to strengthen families who live with disability on a daily basis. Our local chapter provides respite care nights once a month (that's how we met) and hosts one of the regional retreats. Last spring we had the pleasure of attending what will be the first of many retreats. It changed our lives. I'm not exaggerating for effect either, our lives are not the same. I don't think any family can be the same after an experience like it. Jeff and I HIGHLY recommend any and all families who are affected by disability go at least once in their lifetime. This year our family had the privilege of being the featured family at the Joni and Friends Central California fundraising luncheon. We were asked to give a testimony about our experience at the Joni and Friends Family Retreat. This year's theme for the fundraiser was "Running Strong, Reaching Forward" and here is what I was honored to share at the fundraiser last week.

My name is Launa Grunau and my husband Jeff and I are long distance runners. We run for fun and for fitness, we run because it’s WAY cheaper than therapy. We are also running the marathon that is raising a child with special needs. We have four children. Levi age 6 ½, Mila is 5 1/2 , Autumn is 2 and, our most recent addition, Asher is 3 months old. Our oldest daughter came to us when she was 2 ½ years old through the foster care system. When we adopted her we named her Mila Hope. Mila comes from the Spanish word for miracle, her history was a miracle and joining our family gave her future a hope. Mila was born to a 13 year-old girl who didn’t know she was pregnant. She was born at home, in the shower, at approximately 24 weeks gestation. She weighed 1 lb. 10 oz., was 13 inches long, her eyelids were still fused. Mila had a severe brain hemorrhage which has left her with cerebral palsy quadriplegia and an intellectual disability.  Mila is remarkably high functioning considering all she has been through, but she has a very difficult time communicating and self-regulating, which leads to outbursts and tantrums. She is constantly seeking sensory input; drumming, rocking, singing, pounding, jumping and so on. She is in perpetual motion. We joke that the only time she is still is in her sleep, and even that is debatable. Much of the time providing care for Mila feels like running a 5K, it is simply exhausting.

As you can imagine, all of her issues have made her dependent on us for her care  and this makes it difficult to leave her in the care of someone else.   We often feel guilty asking someone else to watch her because we know how difficult she can be. While all our family and friends love her dearly, not many are equipped to care for her. So, when we heard from a family member about Joni and Friends Family Retreat which offers a place where we could go and have some help with her and get a chance to spend some quality time together as a family we were so excited.  

During Family Retreat we experienced the rest and relaxation we so desperately needed. We had so much fun canoeing, riding the zip line, going up in the hot air balloon, swimming, going down watersides, the boys raced go-carts, Mila rode a pony, and everyone jumped on the trampolines. All the activities were made accessible to Mila, but if she didn't want to or wasn't willing to participate, we had our Short Term Missionary, a volunteer, stay with her while the rest of us enjoyed ourselves. This was a huge blessing. So many times our other kids miss out on things because Mila can't or won't join us.  But, this is not the case at Joni and Friends Family Retreat.  Having volunteers to care for our children was so nice, they enabled us to spend one on one time with each of our kids, eat with two hands, eat a complete meal, take a nap, I even squeezed in a run! Becky and Sarah, our volunteers, were so gracious, patient, eager to help, and kind.  Although it took us a while to get used to having the extra help, it was much appreciated. 

We came away from Family Retreat with so many great lessons and experiences. God showed us that we are not alone in this journey. He showed us how we can be His hands and feet, helping, encouraging and praying for each other. Just as the bible says in Galatians 6 we learned to, “Carry each others burdens”. Meeting and sharing experiences with other families, like ours, made us feel so normal. I don't think either my husband or I realized how abnormal we felt until we felt normal again.  Raising a special needs child often makes us feel like outcasts. But at Joni and Friends Family Retreat no one looks at me like I'm a bad parent when my child throws a tantrum, no one shows disdain when she throws food across the room. I don't have to explain why she is disrobing on the patio. They get it. They know exactly what it's like to be in my shoes.  We made friends that we have kept in touch with since retreat and we continue to share the heartaches, frustrations, accomplishments, joys and triumphs that come with our children. We can’t wait to see them again at the next Family Retreat. After we left Family Retreat, we immediately decided that for the foreseeable future this is the only way our family can and will be able to reconnect and refresh. Whatever it takes, we will make it back. We absolutely can’t imagine life without Joni and Friends; much like we couldn’t imagine running a race without an aid station providing water and nourishment. We could not endure this parenthood marathon without the aid of Joni and Friends. Joni and Friends Family Retreat gives us the encouragement and refreshment we need to hang in there, to keep “Running Strong, Reaching Forward…Let us run with endurance that race marked out for us.” -Hebrews 12:1

 

If anyone is interested in joining us on retreat this spring or wants more information about respite care nights let me know and I will connect you with our local office. Please pass this on to anyone you know who could use it!

Mother of Four

I have found myself doing things lately that I never thought I would do. These things might solely be attributed to my personality but I think it's because I'm now a mother of four. I'm not sure where the tipping point was, probably somewhere between kids 2 and 4, but desperate times call for desperate measures!

You know you are a mother of four when...

• You can feed a baby and change its diaper without lifting your head off the pillow. 

• A small smear of infant poop on your shirt isn't a good enough reason to change it. (I would have changed if it had been stinky, big kid poop, but the newborn variety seems so benign).

• Your neighbors don't recognize you when you don't have your brood with you. 

• You can go through three wrong names before you remember the name of the child standing in front of you. 

• You try using the 3-2-1 countdown on your husband. 

• You fake having to go to the bathroom to get a few minutes to yourself. (Not that it matters because someone always follows you and sticks their fingers under the door or knocks on it like Sheldon Cooper)

• You carry your baby upstairs in a basket of laundry to save yourself a second trip.

• You are in a public place and can take child number 3 to the bathroom and the drinking fountain with out taking child number 4 off the boob or exposing yourself. Twice. 

• 4 out of 7 days during the week you trade your shower for an extra 30 min of sleep. 

• Your infant drops the pacifier under the dinner table for the third time you use your toes to pick it up by the handle, wipe it off on your pants and had it back. 

• You feel entitled to the Nobel Peace prize when you can get them all to take an afternoon nap at the same time. 

• Going to the dentist or doctor by yourself feels like a mini vacay. 

• If the the temperature is right, you park in the garage and let the kiddos continue their nap there rather than take the chance they won't stay asleep if you try and transfer them to their beds. 

• You are walking hand in hand with your hubby and you can't get used to holding a hand larger than your own. 

• You find yourself clearing the dishes from one meal so you can set the table for the next. 

• Your kids see you cleaning up and want to know who is coming over. 

• You get your kids to help by playing Simon Says. "Simon says touch your nose! Simon says pick up two books and put them in the book case!"

• You dress your children from the laundry basket more often than from their dresser

• It takes you a week to finish this blog because you only get to blog on your phone while you nurse and that means doing it 20 minutes at a time and all with one thumb.   

I'm sure there are lots more too. Feel free to add any that you find yourself doing as well!

Veggie Tales Theology

Wednesday was a rough homework day. I'm not sure why homework time often brings me to tears, but it does. I probably cry more about my kid's homework than anything else. Maybe it's because I am brought face to face with the challenges my kids with special needs have. Maybe it's because I'm faced with my own inadequacy to help them overcome them. It's probably both.

I was working with Mila on her homework for kindergarten. This is a new thing for both of us and Mila, as in all things, presents challenges when it comes to accomplishing the task. The brain hemorrhage she experienced at birth has caused significant cognitive impairment. Her recent EEG shows that she has episodes of slow brain function. While we honestly feel like there is more going on in that little brain of hers than she, at times, would have us privy to, her inability to focus prevents us from knowing what's really going on in there. Mila sat, flapping her hands and wringing her fingers, eyes darting in every which way as I repeatedly asked her to tell me something that started with an S. Mila has all her letters and their sounds down pat, yet in the 5 mins I patiently sat and asked her again and again, she said nothing. We moved on. I pointed to the drawing of a sock and asked her what it was and what letter it started with. Still nothing. I know she knows this!! As I sat and watched her, flapping, wiggling, head bobbing around, the image of a group of middle aged people from an adult day care center that frequent our local mall came to my mind. That's not exactly what I had in mind when we brought her home. While her progress since joining our family has been remarkable, I was hoping more for the miraculous. Her life itself is a miracle. Couldn't I...shouldn't I expect God to perform more of them? It's not like there is a limit... "Gee, I'm sorry, fresh out of miracles!". So why was I sitting there beating my head against a wall? Why, despite my redirecting, begging and pleading, was she on another planet. She's as dumb as a door nail (I'm just being honest, that is literally the thought that ran through my mind). God, what am I doing? Better yet, what are you doing? Why isn't she doing better than this? I don't know what to do with her!! The tears began to fall as I imagined her as a grown woman on her weekly field trip to the mall's food court. And then I heard God calling to me from the living room. Ok, so it wasn't ACTUALLY His voice, it was the DVD player, but it might as well have been. Veggie Tales was on, again.

Don't cry, Daniel
Fear not, Daniel
Don't you know you're not alone
There is One who is watching you
He hears you when you pray
And though it seems like there is no way out
God has made a way

God you are so faithful to speak to me, even if it is through a bunch of vegetables.

I don't know what "a way" means exactly. I don't know when "a way" will become apparent. But it will. I was reminded of this again in worship that night as we sang Healer.

You hold my very moment
You calm my raging seas
You walk with me through fire
And heal all my disease
I trust in You, I trust in You

I believe You're my healer
I believe You are all I need
I believe

And I believe You're my portion
I believe You're more than enough for me
Jesus You're all I need

Nothing is impossible for You
Nothing is impossible
Nothing is impossible for You
You hold my world in Your hands

So true. While I know all these things in my head, sometimes it's honestly hard to believe it in my heart. I know that God is fully capable of restoring Mila's brain, but will He? Why wouldn't He? Wouldn't that be the best thing for her? Or am I being selfish, wanting what is best for me, so I don't feel like a failure? Ah, there's the kicker. Maybe this is about my pride, I struggle with it so often. But God if this is about my pride, don't make her suffer to make me humble. Isn't there a better way to teach me this? Hmmm... Sounds like I'm about to start bargaining with Him. But I know better.

In every trial I've faced in life I've taken the perspective that God wants me to learn something from them. But as I sit on the floor of the office, huddled next to the homework table, I'm tired of learning. Of course if I was done learning, if God was finished with me then what would be the point of my life? And besides God is more concerned with my character than my comfort. I know that He doesn't always answer the way I want Him to and I've been through enough to know that He is God and I am not. I trust that He knows what's best for me, I may not always like it, but I trust him. He has never failed me.

So, as I learn to reconcile my faith to His will I'll continue to let the wisdom of Bob and Larry resonate in my soul and proclaim that nothing is impossible while I earnestly pray for a complete and miraculous healing of my daughter.

Epic Fail

Ok, so last year's goal of blogging once a week was an epic failure. My last post was in July and even then I was several weeks behind. After starting Plum Crazy Cake Co. with a good friend there just wasn't time to both blog and make cakes. And then I was pregnant again, there really wasn't any time or energy to blog. Not to mention we still had crappy Internet service. So with a fledgling business and a bun in the oven I resolved myself to use making cakes a my creative catharsis. Only it's not cutting it. I've been thinking for a while how I have missed putting pen to paper, or fingers to keys. Making cakes is great and fun but there isn't as much creativity involved as I thought there would be. Most of the time people come to me with specific ideas in mind and generally it doesn't leave much to my imagination. I'm still waiting for the client that comes to me with an unlimited budget and a theme and says, "Go for it!" Someday... someday.

So, for the past few weeks I've been getting the itch to write again. Especially when 2 close friends went to a blogging conference and came home inspired. One if them remind me I've got a lot to say (very true!) and should get back to it. Then this week I needed the fruit salad recipe I posted last summer. When I began reading through that post and others my heart almost ached. I missed my writing so much! It was like visiting with a long lost friend. And as I sat crying yesterday during homework time (which deserves a whole post unto itself) I just wanted to emotionally spew onto paper or some piece of cyber space. So here I am. No promises this time of how often, but I'm going to blog again. I need to. For my sanity and the therefore the well-being of my children and husband I will write again. Now, where to begin...