NATHHAN National Challenged Homeschoolers Associated Network

Christian Families Homeschooling Special Needs Children

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Life with Julia

A series of articles published in the NATHHAN/CHASK News by Jim and Jerri Unruh. They tell us what life is like with their youngest of nine who has Ohtahara Syndrome, an infantile epileptic seizure disorder.
 

Fall/Winter 07/08

Welcome Home Julia!   

    Looking back, the idea of adoption surfaced many times in our marriage. In fact, even before we were married, Jerri and I talked about it seriously, in reference to my own experience of being an adopted child.
Not all adoption experiences are positive. Even when someone is blessed to be found by loving parent, as I was, there are still questions to answer and adjustments to make. Compared to my other siblings’ adoptions, the family that raised me was fairly secure. My parents were not perfect, but in retrospect I know that I was loved and that they did their best with what they had.
There were times when I felt rejected and worthless because of the stigma associated with adoption. I yearned for my dad to call me son. I desired more affection and approval from my mom. I wanted a deeper, closer relationship with my parents. I still do. But any child might have similar feelings whether they were adopted or not.
After receiving Christ, I began to see things from a much different point of view... from the perspective of Scripture. The Bible teaches that all believers were predestined by God the Father to adoption as sons through Jesus Christ, according to the kind intentions of His will (Eph 5:1). I realized by God’s grace, regardless of my parent’s intentions for me and what my life would become, God had a plan for my life in Christ. I saw that all the fulfillment I longed for as a child could only be found in Christ. I was accepted in the beloved. The Spirit testified that I was God’s son crying Abba Father.
What a wonderful comfort it is to be a child of God. But the price of adoption was huge. It cost God the life of His one and only Son, the Lord Jesus Christ. When I consider what God did to rescue me when I was a lost and homeless orphan with no hope and no inheritance, my heart is filled with gratitude and indeed cries Abba Father. He did this for us knowing that there was nothing of ourselves we could ever give Him in return; that without His strength we could never do anything of worth to please Him. That’s just amazing! But that is who our Father God is. He is gracious and merciful and He has compassion for the lost, the orphan, for those who cannot help themselves. He not only saved and accepted us; He also enables us to bear the fruit of the Holy Spirit for His glory.
Why did we adopt baby Julia? Why would we adopt a baby with special needs?
Our little Julia is a child that, from the world’s perspective, has little worth and little to offer. She will probably have high needs and high medical expenses. She may not live very long.
So why would we do such a thing? It’s very simple. That’s what God did for us! For while we were still helpless, at the right time, Christ died for the ungodly. (Rom 5:6)
It is our conviction that as Christ died for us we should die to self by laying down our lives for others. We know that His love, manifested through us to a baby with needs, will bring Him glory.
We are depending on the Lord for His help and strength in the days ahead. He is faithful!
Some of our relatives don’t understand, but their view of life is different than ours. We have heard things like, “how can you do this to yourselves and your family” “isn’t there someone else who can raise it” IT!! Her name is Julia, not IT! Sure, there are others who might be called, as we are, to this kind of ministry…. but that’s really the point, isn’t it. When God calls you to serve Him in a particular sphere of ministry, He makes you open to it. He gives you a desire to do it. He enables you, and provides the specific opportunities. He opens the doors, and you just trust and obey Him. Everything we do as Believers in Jesus Christ should be based on the revelation of Christ’s sacrificial love displayed on the cross. The world hates true self sacrifice. It doesn’t understand it; it’s a direct contradiction to the lost of the world, the lust of the eyes, and the pride of life. Yet this is the wonder of the grace of God in the believer’s life. That the glory of Jesus Christ exposes and convicts and pierces the darkness of this selfish fallen world. Those who see the sacrificial love of Christ in your life are impacted, some people will get angry, some will say, “How foolish.” Still others will say, “Where does this kind of love come from?” And they will be drawn to the love of the Savior.
Julia, we love you!

Jim and Jerri, long time board members of NATHHAN / CHASK, brought 5-week-old, baby Julia home from Arizona, in October of this year. Julia has Ohtahara Syndrome, and infantile epileptic seizure disorder. She is a very beautiful baby. Her birth mom was very, very young, and the father was unknown.
    Currently, Julia is tube fed and requires someone to keep a close eye on her at all times, as her little seizures are almost constant. We are hopeful that she will be able to wake up and visit more, once they are under control.
    She is gaining weight, and just had a successful replacement of her G– tube for feeding.
It is such a wonderful blessing to be a part of an adoption (in the form of support and encouragement), as usually we in the office don’t get to see the happy endings of CHASK babies with their families. We look forward to sharing more in later issues of the NATHHAN NEWS about the adventures of the Unruh family and baby Julia.

 

Spring 2008

 Julia smiled today!

Actually, her first smile came while we sat in church on March 2, 2008. Jim grabbed my arm and then we both just stared at her. We wanted to jump up and down to tell the whole congregation, but instead we quietly relished this very special moment. You may wonder why such a thrill—some of you know. Sweet Julia is still like a newborn. Not just any newborn though, a floppy newborn that weighs 18 pounds and is 28 inches long. An eight month old newborn with no development milestones yet achieved. Except…a smile!

What is life with Julia like daily? Hmmm…..sleep, eat, meds, seizures, diaper, open eyes, smile, cuddle, sleep, bath, physical therapy, eat, meds, sleep, diaper, eat, open eyes, smile, seizures, yawn, get kissed by sister or brother, sit up in wheelchair, sleep, diaper, cuddle, eat, sleep, smile, diaper, meds, hug my pink teddy and sleep some more!

    Last Fall when Julia was in the hospital for a new feeding tube she was officially diagnosed with Ohtahara Syndrome or Infantile Epileptic Encephalopathy. (A seizure disorder) It is not known for having a very positive outcome; with many dying in infancy. After the initial tears we again thanked the Lord for His amazing blessing in allowing us and trusting us to care for His precious jewel. Only He can number our days. With Julia I am so aware of God giving her to us and I trust Him for her life. Since our life with Julia began I have become keenly aware that I did not trust Him the same for my natural born children. I had not relinquished control of them as I had of Julia! When we were first made aware of Julia I felt that we needed her as much as she needed us. It was not Julia that needed us, God could have placed her with any family He chose. In His wisdom and sovereignty He lovingly handpicked us. With each new day the Lord is faithful to show us our need to sacrifice ourselves and to reach out to Julia with the grace and love we have received from Him. Thank you Lord and thank you Julia.

Our adoption was final in January. Julia Hope Unruh is now officially ours in the eyes of the world, but she was ours in our hearts long before then.

Those of you who have expressed a willingness to adopt a CHASK baby I urge you to be home study ready. So many of these babies need homes immediately from the hospital and without one, they may end up in state care. Julia was blessed to be with a private Christian agency who could find a private foster home; where, I add, she was adored; while we expedited all our paperwork---we were not ready! They were kind and patient; they truly loved Jewels Emily, as they called her then. There was a network of people, churches and organizations praying for her. We will always be thankful.

 

 

Fall/Winter 2008-2009

Happy 1st Birthday Julia!

By Jerri Unruh

Julia (found through CHASK and adopted shortly after birth) has added so much to our lives. She is officially diagnosed with Ohtahara Syndrome or Infantile Epileptic Encephalopathy. (A seizure disorder).

After living and caring for Julia for a year, everyone seems to be used to her now… sometimes to the point of complacency. A common occurance around here is to be responding to Julia’s choking emergency with the suction machine, while at the same time being asked, “Mom, where is my math?” or “Hey Mom, can I have a cookie?” To which one of two things happen, #1 I respond with, “You left it on the washing machine.” or “No, you can’t have a cookie, wait for dinner.” OR #2, I hysterically say, “Please, can’t you see this is life or death?!”

When we first considered adopting Julia, I was convinced that we needed her as much (or more) than she needed us. I reasoned that having Julia would help everyone, including me, with selfishness. We could serve the Lord while serving Juila! Such godly intentions! I was focusing on our potential character development… and what we got instead was a house full of characters!
Our family also has a renewed respect for the sanctity of life; the reality of our true needs; the frailty of our human condition; our dependence on God for daily strength; and, yes, the blatant realization of our deeply rooted selfishness.

Through Julia’s life we are indeed developing character aimed at Godliness...but, that is what we all should do for each other, is it not? “Faithful are the wounds of a friend” “Iron sharpens iron.” God intends for us to grow and change. He uses many opportunities to do just that, but how do we respond? I find that growth is hard.

Was I prepared for all that I personally would find myself dealing with when I was thinking of character development? I am just scratching the surface. Ouch! Would I adopt Julia again, knowing all that we would go through? Absolutely!

Here are some sweet examples of our little guys gaining some character growth right before my eyes!

“...Momma, Juya having seezers; mom, come quick she coughed, how can I help? I'll turn on the suction and get some water to clean it when your done; she's so beautiful, can I kiss her?”

 mix it (formula); she's smiling at me; I can do her meds.”

“Me sleep with Juya; do you need a vent, here is her bear, and... hey, mom what about my cookie now?

....He who has begun a good work in you will complete it until the day of Jesus Christ. Phil 1:6

(Editor’s note: Jim and Jerri Unruh are NATHHAN/CHASK Board Members and have been involved for many years. It is such a joy to see them enjoying one of the Lord’s special little treasures!)

 

 

 

 

 

Here is a picture of the Unruh characters!

Back= Jessica and Peter Unruh, Luke, Zachary; Ian, Joy and Thane Hale (not pictured= Baby Jade Hale)

Middle= Jonathan

Front= Danny, Jerri and Julia, Jim and Lily and Sean