Praying for Peace & Joy

As we continue to make the physical preparations for our trip I have been grappling with some spiritual and emotional preparations as well. Although I believe this treatment to be effective and know that it has helped many people, I have been guarding my own emotions. I don't want to get my hopes up too much and then have to deal with the crash if we don't see progress. But when I peel back those protective layers of my heart I am hoping for great progress, even a miracle in my little boy's life.

As I was studying the Bible this morning I was reading the story of Hannah in the first part of the book of 1 Samuel. Hannah was a barren woman living in a time when women who could not have children were considered failures. This was a great burden on her. In 1 Samuel 1:10 it says she was greatly distressed and cried out to the Lord and wept bitterly. Many of us have areas in our lives that feel barren - areas that we cry out to God about and weep over. I have felt much barrenness in the area of bringing healing to Seth and have often felt like a failure when our best efforts and fervent prayers have yielded little success.

As I continued to look at the life of Hannah I saw how her barrenness had brought great sorrow to her life. In the midst of a great sorrow like Hannah's it's easy for bitterness to take root. It's easy to ask "why me?" Why do I have to carry this burden? Lord, why does not seem you are listening to my cries? Why are others seeing blessing in this very area, but we see none? It's easy to get so wrapped up in the problem that you see very little else. Ultimately Hannah did what we all need to do with these great burdens. Hannah laid them at Lord's feet. She expressed her deepest longing and her pain and then she allowed the peace and joy of God to fill her. She embraced that peace and joy even before she received the answer to her prayers.

This is where I find myself today. Falling at the feet of the Lord - praying for a miracle, and then praying to receive peace and joy that can only come from the Lord - no matter what the outcome may be.

Beginning Trip Preparations

Earlier this week we received confirmation that Seth has a spot in the May session at the treatment center in North Carolina. So I am beginning to make plans to be gone for almost a month. It's a little overwhelming to think of all I need to do before I leave to make sure things go smoothly here and all that I need to pack to prepare Seth and I to be gone for a month. Fortunately my hubby is a total prince who can pretty much handle the homefront. He can manage a number of easy meals - although the older kids have already commented that they are excited to get to eat "junk" food more often. I may have to ban frozen pizza and hotdogs for a couple months after I get back just to try to offset any negative health consequences :) Mike already does most of the laundry for our family so he should be able to keep them all clothed and fed. If the house is less than clean while I'm gone - it really won't be anything out of the ordinary!

I'm making lists of things to get done before I leave and things to pack. One of the biggest challenges is finding 100% cotton clothing that does not have zippers or velcro. This is the clothing requirement for us while in the hyperbaric chamber. Shirts are fairly easy - t-shirts will do the trick. Pants are another story. I've already spent several hours looking at Goodwill and on E-bay for such clothing. I've found a few things cheap, but it's going to be a challenge. I'm also trying to start making mental notes of how much food Seth goes through each week as I don't know that we will have access to a store that stocks Seth-safe foods while we are there. There is a Whole Foods about 2 hours away if I can't find anything closer we may be taking road trips on Sundays when Seth does not have treatments.

Some friends offered to loan me a laptop, which will be a huge blessing. It will be great to be able to use Skype to talk with family and friends and keep in touch with friends through Facebook and email. And I plan to blog on a regular basis - hopefully with amazing stories of the progress Seth is making. Another friend loaned me her french press to keep me set on good coffee - I had seriously considered taking my 12-cup coffee maker along to ensure I have good coffee during our stay - I am serious about my coffee! I'll be buying several bags of coffee beans from the local roaster I love to take along.

I've been trying to figure out if there is some way to prepare Seth for the trip. But I'm not sure how to really go about that. Fortunately he does very well in the car, so that part of the journey will be okay. Once we arrive in North Carolina I think it will only take him a day or two to settle in, as long a we have his favorite things along. I do think he will miss his siblings the most. He has started to play more with them over the past 6 months and I think he will miss having them around.

The preparations have just begun!!

A Good Report

Yesterday I took Luke to Iowa City for his annual cochlear implant check-up. It has now been 8 years since Luke received his cochlear implant and he continues to make gains and show improvements. Over the past few years Luke has began to look forward to his annual visits to Iowa City. He enjoys getting to see the staff and is excited to take the tests and eat in the fun cafeteria where he can choose whatever he wants to eat for lunch. Yesterday he informed the audiologist he was working with in the morning that he likes a challenge when taking sound recognition tests. He improved on his scores from last year - something that is a little out of the ordinary this long after implantation. The audiologist said many kids have plateaued at this point so we were excited to see continued growth. Luke also scored very well on a number of problem solving tests - it was fun to watch the "gears" of his brain work. Throughout the day Luke was his typical jovial self and inspired many laughs among the staff as they worked with him. His exuberant personality brings life and joy to those around him - what a blessing.

In talking with one of the audiologist I learned that bilateral implantation (both ears), is now pretty much the standard for young children that are implanted. Some children that received one implant as toddlers are now having their 2nd ear implants also and see gains in listening in loud environments and greater ability to localize sound. Mike and I have been hesitant to pursue this for a number of reasons to this point - Mike thinks that further advances may come in Luke's lifetime that would be of greater benefit than the cochlear implant, we have been a bit leery of putting him through another surgery when he's doing so well already and Seth's struggle with autism has taken more of our focus over the last 5 years. But I had to ask myself on the drive home yesterday if we are shortchanging Luke in any way by not pursuing this opportunity. It is something Mike and I want to pray and talk about further.

But overall we are so pleased with how well Luke has utilized his cochlear implant. He now takes responsibility and great care of his device. The first thing he grabs in the morning is his CI - he wants to hear all that's going on in the world around him - he doesn't want to miss a thing. When the batteries die he now goes the cupboard with the batteries and changes them on his own. Sometimes I find it hard to believe that he's this grown up. He continues to excel in school. He truly loves to learn and functions beautifully in a gen ed classroom with some minimal supports. We have been blessed by the many caring teachers and special educators at his school who have been a great support and encouragement to him in his school experience. At home he is a typical, high-energy boy who loves to play soccer, ride his bike and skateboard, play x-box, and pick on his sister. I am so thankful for the opportunity the CI has given him to be a part of the hearing world. Praise the Lord for modern technology!!

New Leg of the Journey

It's hard to believe that it's almost the middle of April. We are slowly seeing signs of spring here in Iowa, although the weather has been colder than normal for this time of year. It's been a long and at times challenging winter. We continue on the journey of seeking healing for Seth, a journey that has seemed to be moving at a snail's pace. We continue with many educational and medical interventions but the progress is very slow. Over the past few weeks God has opened the doors to a new treatment for Seth. On May 8th Seth and I will be leaving on a treatment adventure to North Carolina. After stopping and staying with two friends along the way we will arrive at the treatment center on Sunday, May 10th and start treatment on May 11th. Seth will be receiving hyperbaric oxygen therapy along with auditory integration therapy and a specialized physical therapy treatment.

Recent studies have shown promising outcomes for children with autism with the use of hyperbaric oxygen therapy through increasing blood flow to areas of the brain, decreasing inflammation in the body, and aiding in detoxifying the body. We are hopeful this will be a treatment that will bring Seth further healing. I approach this new leg of the journey with mixed feelings. I have a hard time remembering my life before this journey began. We have already completed many legs of the journey as we have pursued various interventions including educational, nutritional, and a variety of biomedical therapies. I had hoped that a leg of this duration and length would not have been necessary. I had hoped that the previous legs of the journey would have brought greater healing to our precious boy. I had even said at one point that the last leg of our journey would be the end. But the progress that we'd hoped for has not been seen and so I push on to find new treatments that might help our boy.

I don't know where this journey will next lead us or when or if the journey will ever come to end. I only know that I don't feel at peace with ending the journey yet. Stay tuned for more posts about our preparations for the trip and updates on Seth's progress throughout the treatment session.

Glimpses of Hope

I continue to struggle with being consistent with this blogging thing, but I'll make an attempt to get back on the bandwagon. Since my last post their have been glimpses of hope and moments of despair. Since sharing about my need for hope I met another warrior autism mom who has see her child "recover" from the debilitating challenges of autism. It was a great encouragement for me to get to know this mom a bit and meet a "recovered" child. I've read stories and seen online testimonials about "recovered" kids, but had never met one in person. In sharing my excitement about meeting this mom and child with a family member I learned that my aunt was praying specifically that I would have the courage to hope again that Seth could improve. This was a very touching and insightful prayer request for me.

We have started yet more new biomedical treatments with Seth and finally think we are seeing some small changes for the better. We have had comments from family and friends that they think they are seeing changes also. This will be a long journey, but we pray that all that we are pursuing will lead to improvements in Seth's life and consequently ours. Yet in the midst of all this the day to day still has been getting me down a lot lately. I've been feeling a lack of joy in the day to day things that usually bring me joy. I've been routinely at my wits end with my family and often have felt like a failure as a wife and mom.

I wish that I could be a steadier person, one who did not have such ups and downs. Yet recently my best friends told me that from some conversations she's had with other women lately, she thinks we are very balanced, level women. If I'm balanced and level and like to see what a person with a lot of ups and downs is like. I want to stay consistently in a place of peace and trust - knowing and believing from the bottom of my heart that He is working all things for good in my life. But I doubt, I question, I routinely whine and complain that "life is not fair!" Yes Dad - I still at my core think that life should be fair, even though I know for a fact that it is far from fair. And I realize that there are many out there with much bigger problems than mine. Right now a dear friend is battling the final stages of lung cancer - that's not fair!!!

I yearn for Christ's return and His reign upon the earth, when all will be set right and we will live in a state of complete justice. I am so thankful for the hope I have in this reality yet to come. I cannot imagine walking the journey I've been asked to walk or watching other walk difficult journeys without the hope of something far, far better beyond this life. And I'm so thankful that by the grace of God, not anything I've done I have assurance of that blessed eternal life. So I guess I'm learning to cope with what I have before me by focusing on the glories and blessings of the life eternal that I have been promised. I praise the Lord for this hope!!

In Need of Hope

Once again it's been awhile since I've posted. Honestly the past month or so has been a difficult one. I've been feeling low on hope. The demands of day to day life, the struggles of family and friends, the dark world that surrounds us has simply got me in a funk. Lately I've often thought of the first section of Proverbs 13:12 which says, "Hope deferred makes the heart sick". The rest of this verse says "but desire fulfilled is a tree of life." My life over the past few years seems to be characterized by the first part of this verse much more than the second.

My heart tells me that life as it is, is not as it should be. I have many desires that go unfulfilled and perhaps always will. I recently went through a study of Revelation by Anne Graham Lotz. In this study she focused on the hope we can have in knowing Christ. But much of this hope in my estimation, is hope we have in the future not necessarily hope that we will see in this life. I am so thankful for the hope of heaven I have as a believer in Christ, but often I become weary of holding onto hope.

I don't have a quick, pat answer to raise my spirits in this time. I continue to walk by faith - knowing from past experience that God is still with me, and looking to His word for encouragement. But as I reflect on my reactions to similar periods of time in my past I am encouraged. I feel I have grown over the past 10 years - I continue to walk with God now even when I don't always see His hand. In the past I have become extremely depressed and turned away from God at times like this. Now I feel the prompting to just keep on keeping on, trying to remember that the problems of this world are very temporary in light of eternity.