Wednesday, August 27, 2008

Grieving with Hope, death of Steven Curtis Chapman's daughter

I was first introduced to the music of Steven Curtis Chapman on my wedding day, a little over 16 yeas ago when my husband dedicated Go There With You to me at our wedding reception. Over the course of our marriage, Rick and I have had our share of "highest mountains" and "raging seas", as have the Chapman family. Steven's songs have continually blessed and resounded with my heart. My husband has even teased me a few times about having a "crush" on SCC because I talk of their family and his music so much. (For the record, my only crush is on the man who introduced me to this music, my amazing husband!)

Through the years I've followed the Chapman family's story and read just about every media release or article I've seen. I've felt a deep connection to them that doesn't feel to me simply like a celebrity following, but a longing to know this family as friends - something I know probably will never happen in this lifetime, but I look forward to in Heaven. I've been encouraged and challenges by Mary Beth's struggle with depression, watched with tears and joy as God has called the Chapmans to adoption as we also prayed through and pursed adoption (though that was not God's plan for our family at that time), and have referred many friends to Shaohannah's Hope for adoption financial aid.

Though it's not a possibility for us right now due to my physical limitations, R. (our five year old daughter) talks about wanting to adopt a baby sister from China on at least a weekly basis. This has been a topic in our household even since before we were blessed with our three biological children, but has been especially reignited since our neighbors brought their daughter home from China 18 months ago. So early on the afternoon of May 21st I sat snuggling my kids and reading Shaoey and Dot over and over and over upon their request. Later that afternoon I was stunned to stumble across an internet story stating that the Chapman's youngest daughter, Maria Sue, had been killed that very afternoon, probably during the very hour we were reading, in a driveway accident at their home!

The Chapmans have never been far from my prayers these past three months. And now they are beginning to talk to the world about all that has happened in and since the shattering loss of Maria. They are truly Harvesting Hope from one of the most devastating forums of heartache. In their recent interview with ABC Steven explains, "In grieving this process there is a hope that we have, that we are anchored to, in the midst of what sometimes seems unbearable." No, it isn't joy and roses, nor should it be! They are a real family, in real pain, living out a real faith.

Mary Beth continues in the same ABC interview, "As I've stated somewhat coldly, I don't care who's lives are touched by this story, and who's lives are changed, or what good comes of this, as the heart of a mom, I want Maria back! BUT... because of my faith I know that she is completely whole and completely OK and I'm going to see her again, as a mom I have to shift that grief... to making sure [my living children] are as whole and as healthy as they can be. And through that then, when people's lives are touched and changed, then I can be OK with that. But as the heart of a mom, I would like to have Maria back."

In a People Magazine article , Mary Beth is quoted as saying, "I'm broken and I would give anything to have my baby girl back. But that's not going to happen. So I wake up in the morning and make a choice. You can wallow in the deep end, or you can say, 'God show me what you want me to be about today and how I can honor you, and in turn honor Maria'."

One tangible way that the Chapman's have become Hope Harvesters through their great sorrow is through Maria's Miracle Fund where donations were sent after Maria's death, in lue of flowers. This fund has now raised well over $600,000 to help unite the world's orphans with their forever families. The special needs healing home that Shaohannah's Hope (the adoption and orphan care ministry founded by Steven and Mary Beth Chapman) will open in October in Luoyang, China will be named Maria's Big House of Hope, and will care for orphans with medical impairments such as cleft palate, clubbed feet, urological disorders, blindness, and neurological disorders.

If you would like to hear more from the Chapmans on the life of Maria Sue and how they are grieving with hope since her death, Focus on the Family has been airing an interview with the Chapmans over the past three days. Listen to The God of All Comfort here. There are several other articles and media interview links posted at

Wednesday, August 20, 2008

Know someone who really needs a laptop?

It all started with a little boy who is fighting multiple critical health concerns and the realization that his mother is house-bound, usually bedroom-bound with him, and has very little way to communicate with the outside world. When they are admitted to the hospital (frequently) again she is cut off. 5 Minutes for Mom stepped in, and teaming up with HP computers, blessed her with a free laptop!

And now they want to change one more life in the same amazing way. 5 Minutes for Mom and HP computers are offering an HP Pavilion dv5t Entertainment Notebook PC and an HP Photosmart C4480 All-in-One printer to one truly needy/deserving person/family. They are currenly seeking nominations (including self-nominations) through Aug. 27. To find out more, or to submit your nomination, read the full and amazing story at Blogs Can Change Lives...Want to Help Us Change One?

Whittemore Peterson Institute

I am thrilled to announce that the Whittermore Peterson Institute for Neuro Immune Disease has just launched their website!
According to their publication, “The Whittemore Peterson Institute’s mission is to facilitate and advance patient care, research the patho-physiology and develop therapeutics, diagnostics and prevention strategies for a spectrum of neuro-immune diseases.”

They are facilitaing research on the pathophysiology of neuro-immune diseases such as ME/CFS, fibromyalgia, atypical MS, and autism, seeking to develop therapeutics, diagnostics and prevention strategies for this spectrum of diseases, and to advance and support medical education and physician training. "The Whittemore Peterson Institute for Neuro Immune Disease exists to bring discovery, knowledge, and effective treatments to patients with illnesses that are caused by acquired dysregulation of both the immune system and the nervous system, often resulting in life long disease and disability.
"Our first goal is to work towards developing a better understanding of the natural history of these diseases, thereby diagnosing and treating patients accurately and efficiently. Generating and sustaining a blood and tissue repository and a clinical database for ME/CFS and ultimately for other neuroimmune diseases is a primary focus of the Institute."

I am thrilled to watch this world-class research unfolding right in my own city and look forward to being a patient participant in their research studies!

Tuesday, August 19, 2008

Have you been helped through counseling?

I received the following request through a dear friend of mine, Lisa Copen (Director of Rest Ministries, Editor of HopeKeepers Magazine and Founder/Coordnator of National Invisible Chronic Illness Awareness Week). I do not know anything about the author, but this project sound very helpful

Lucille Zimmerman is seeking story submissions. She writes, "Are you a Christian who relied on faith and prayer, only to find great healing at a later point, through counseling. I am writing a book - a plea for Christians to recognize clinical counseling as a beneficial tool, in addition to faith and prayer - looking for people to share their stories anonymously." Please contact Lucille directly at
Deadline: 8:00 AM MOUNTAIN - August 30

Wednesday, August 13, 2008

The Harvest Cycle

I originally posted the following entry on my Hannah's Hope book blog this past February. These are the notes from a 45 minute talk I shared with women from our church, so obviously it is only an outline, but I pray there is something here that challenges, encourages or blesses you. After each phase of the harvest cycle, listed in bold, are the emotions a grain of wheat might experience as it prepares for its final purpose.

God put on my heart the topic of Harvesting Hope from Heartache™ based on Psalm 126:5-6 that says, "Those who sow in tears will reap with songs of joy. He who goes out weeping, carrying seed to sow, will return with songs of joy, carrying sheaves with him."

- Planting – darkness, suffocation, loneliness

No one is immune from heartache. Even when I can’t feel Him, God is always there.

I shared the opening portion of Hannah's Hope chapter one, Hannah's loss of innocence and my story of attending a party as an infertile woman, to illustrate the isolation and darkness of the planting season.

Where can I go from your Spirit? Where can I flee from your presence? …If I make my bed in the depths, you are there… Even the darkness will not be dark to you; the night will shine like the day, for darkness is as light to you. – From Psalm 139:7-12

- Waiting – seemingly endless, pointless, impatience

God’s “protection” may leave me bewildered, but He always has a plan for my good.

Read the "Wait" poem.

“…For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. – Jeremiah 29:11

- Sprouting – new, fragile, reaching out

God wants my honesty. Where am I placing my hope?

Shared personal experience of being angry with God, yet being unwilling to admit my anger, followed by the freedom of "letting Him have it" and being truly honest. Also the realization that I was placing my hope in a child rather than in God and the attitude changes He needed to bring about in me.

You will seek me and find me when you seek me with all your heart. – Jeremiah 29:13

- Growing – stretching, exposed to the elements - hot sun, pounding ran, buffeting wind

God is personal. He cares about every need. He wants me to rely on Him.

Personal stories of God meeting me in places of need both in chronic health challenges and in infertility and other desires of my heart like the longing for a piano.

I pray that out of his glorious riches [God, the Father] may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God. – Ephesians 3:16-19

- Reaping – cut, dry, gather, bundle

God does not intend for me to “do life” alone.

The beauty of fellowship, belonging and finding others who understand by personal experience. Contrast to the lonilness of "planting".

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. – 2 Corinthians 1:3-4

- Threshing – separating chaff from good grain, sometimes by stomping or throwing

Sometimes it gets harder before it gets better. God will help me persevere!

Struggle with fears during pregnancy and adjustments in parenthood. Sometimes "having just what I want" isn't quite what I pictured.

Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything. – James 1:2-4

- Refining – grinding, mixing and baking lead to nourishment and pleasure

When seasons of heartache are over, I should celebrate what God has done!

Sometimes rejoicing is obvious, such as celebration over the long-awaited gift of children. Other times it is less obvious, like learning to rejoice in over 17 years of ongoing pain and illness. God is good, all the time!

Those who sow in tears will reap with songs of joy. He who goes out weeping, carrying seed to sow, will return with songs of joy, carrying sheaves with him. – Psalm 126:5-6

Tuesday, August 12, 2008

Living Fully Through Life's Trials

I've had this blog name reserved for some months now, ideas swirling around in my head. It's taken thoughts of National Invisible Chronic Illness Awareness Week coming this September 8-14 to spur me on to finally take this blog live.

Harvesting Hope from Heartache™ is a concept that captures many aspects of my life. I was blessed to be introduced to Jesus Christ at a very young age. By understanding my inability to reach His standard of perfection on my own and asking His to be my Guide through this life, my childhood was full of life, enthusiasm and hope. When painful realities of adulthood struck, my faith was tested, nearly shattered more than once. Yet hope in Him has ultimately been the anchor to my soul, even when that anchor rope seemed frayed and worn.

This blog is dedicated to hurting hearts that are reaching out for hope in any aspect of life, giving special attention to the heartaches God has carried me through - the loss of health, loss of friendships, loss of livelihood, loss of fertility and multiple losses of our children. It will share articles, resources, links and encouragement for seeking hope in the midst of life’s darkest moments. I will never sugar-coat the realities of pain, but I also cannot leave my readers floundering in hopelessness. Please join me in learning to harvest hope together from our heartaches.

Before I begin sharing resources, let me give you a little background about my own story. We never lived anyplace longer than two years until I hit high school, so I clung to my relationship with Jesus through all the ups and downs of continual moves and the accompanying need to let go of and rebuild friendships over and over. But our relationship was never fully tested until shortly after my 18th birthday. I woke up one morning feeling fine, and by mid-afternoon my life had changed forever, though I really didn't understand how dramatic the change would be for a while.

I had just moved again, this time away from home and family for the first time. I was on a crazy schedule with college dorm life and cafeteria meals, so it wasn't surprising that when "the flu" swept through campus, knocking 2/3 of the student body off our feet, I was put out of commission as well. The unsettling part came when everyone else returned to normal life while I spent the majority of the semester shivery in bed or counting the painful minutes until class would be over so I could put my fevered, aching body and swirling, foggy head back to bed.

That was 18 years ago this September, literally half my lifetime ago now. For my entire adult life I have lived under the shadow of an invisible chronic illness. It took many months to reach the diagnosis of Chronic Fatigue Immune Dysfunction Syndrome (CFS or CFIDS, sometimes also called Myalgic Encephalomyelitis or ME) and years to eventually stack up my “grocery list” of additional diagnosis also including Fibromyalgia, TMJ, endometriosis, polycystic ovarian syndrome (PCO, PCOS, or PCOD), neurally mediated hypotension, and the list goes on and on…

[Update: In October, 2009, I learned that I am positive for a newly-discovered retrovirus liked to Chronic Fatigue Syndrome. This virus was originally named XMRV – Xenotropic Murine leukemia virus-Related Virus but further research unfolded an entire family of closely related Human Gamma Retroviruses (HGRVs). It is very possible that I have actually carried one or more HGRVs since childhood, perhaps even acquiring it many years before the full onset of my CFIDS symptoms that I experienced at age 18. (HGRVs are only the third known infectious retroviral family in the human population, along with HIV and HTLV.)]

I am among the fortunate who have actually been given answers, even when there is no cure. Many are debilitated with such painful conditions, yet live for years without understanding why, struggling day to day to cope in a world that only sees a healthy looking body without many (sometimes any) obvious signs of illness. They are accused of being lazy and no one understands the effort simply to get out of bed and put one foot in front of the other. Few see the days we can’t get out of bed at all. We are told “You must be feeling better because you look so good!” and we paste half-hearted smiles on our faces because it just isn’t worth expending the effort to try to explain the daily reality of living with invisible illness.

Just a month after getting sick, I was blessed to meet a man who didn’t define me by my illness, who loved me not for what I could or could not do, but for who I am. Neither of us had any idea that we were up against a lifetime of illness, but as the months of grueling testing passed, we were faced with the very real potential that this yet-unnamed villain might easily prove to be fatal. I tried to free him from our engagement, yet he stubbornly refused to leave my side. We will celebrate 16 years of marriage this weekend and he has been such a blessing through the many ups and downs of life including the loss of our first business, deaths of many extended family members and all the daily trials of living that continue over and beyond chronic illness.

Fully knowing that parenthood could be a challenge given my poor health, we both desperately wanted children and (some say foolishly) jumped into the pursuit of parenthood shortly after our wedding. Seven and a half years later we were thrilled to bring home our 4 pound, 13 ounce miracle. The road to him took us through one miscarriage, seven adoption losses, surgeries, fertility drugs including daily hormone injections, Hyperemesis Gravidarum (severe nausea and vomiting during pregnancy that goes far beyond typical "morning sickness") and an almost indescribably emotional roller coaster of grief, hope and yet more grief. Infertility drove me to almost let go of the hope anchor all together, at my darkest hour even seriously considering ending my own life.

After two more miscarriages and being given less than 5% chance of ever conceiving again even with medical aid (with even less hope of carrying to live birth if we could conceive), our son was joined by a baby sister three years later. She kept us on our toes by launching my body into preterm contractions at 25 weeks (full term pregnancy is 40 weeks) and keeping me on bedrest, hospital visits and preterm labor medications over the next 13 weeks. After waiting and wanting so long, I was stunned to face 2 years of post-partum depression after her birth. We are still rebuilding the bonding we lost over that first two years of my emotional distancing.

After being advised not to pursue another pregnancy for medical safety, we were shocked to find ourselves expecting our second living son, born 2 days before his sister’s 3rd birthday. There were many emotions to process with this pregnancy: joy obviously, but also much fear, disbelief, even some anger. By the time of his birth we were beyond thrilled to welcome him into the family and praise God for His good gifts, but it was a surprisingly hard adjustment to have an unplanned pregnancy, especially after all the grief and heartache that had gone into trying so hard to grow our family through ten years of primary and secondary infertility! Contractions and bedrest started with him at only 19 weeks, but the severe asthma I experienced while carrying him actually proved to be to our advantage with my inhaler steroids frequently helping to slow contractions while also helping to mature his lungs for his month-early delivery.

And yes, parenthood has proven to be challenging. There are days when I cannot even care for myself, leaving me feeling helpless as the mother of 3, ages 8, 5 and 2! It is in these most challenging days where seeking joy and hope must become an active pursuit. I pray that my story can be a blessing and encouragement to others and that we can learn together to harvest hope from our heartaches. Please add your email address to my mailing list and leave comments to share your story with me too!

[UPDATE Feb. 2012  Last fall, Oct. 2011, I experienced multiple strokes with brain-stem involvement. I have vision loss, hearing loss, a partially paralized hand, and I cannot walk.]

Blogs for My Books:
Hannah's Hope: Seeking God's Heart in the Midst of Infertility, Miscarriage & Adoption Loss NavPress, 2005

Give a Thorn: Encouragement Amidst Chronic Pain and Illness, Through the Eyes of Paul (working title, book still in process)