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Monday, November 7, 2011

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!

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