A time to end, a time to begin

It is with many emotions that I am announcing that my time with The Net and our family’s time in Jackson is drawing to a close. The past four years with The Net and nine years (!) in Jackson have been full of growth, joy, and hardship, but we have become convinced that this chapter in our lives must come to a close.

Since my health has been challenged over the past two years, Dave and I have given up on foreseeing our future and focused on discerning our next step. In spite of the complications from my (and our daughter’s) connective tissue disease, we know we have every reason to hope for the best. God may choose to heal our bodies; He may help us manage our disease effectively and minimize any symptoms. God’s power to heal, my best-case prognosis, and some periods of relief tell us this. However, this world’s brokenness, my worst-case prognosis, and my worst days warn us our lives could become far more challenging.

We’ve been asking ourselves how we could be healthiest if I became more severely disabled. The church in Jackson has been unendingly supportive of us, and we are also  incredibly blessed to have a supportive & loving family as well. But, one of our challenges of the past two years has been that most of that close, supportive family lives far away. We have decided that moving closer to family would be the wisest choice, for many reasons.God has been confirming this plan with His providence. He has provided a person to take over my work at The Net, and He has provided multiple offers on our house in the midst of a pandemic.

The Net’s Plans

As I said, a wonderful candidate to succeed me at The Net has accepted the position. I will be available to The Net for a period — two months at least — to facilitate a smooth transition. While COVID-19 has many parts of our work uncertain, we are thankful to have the blessing of this person in place, and I will be happy to share more details soon.For those of you who have been supporting me financially, how you now choose to apply those resource is, of course, your choice. If you wish, those funds could be directed to my successor, or another counselor (I can provide details on their various ministries), or to The Net’s general fund. The Net’s work will be continuing, so long as God chooses. Or, perhaps there is a different need on your mind, and you will want to end payments to The Net and direct your resources there. Let me know how I can help with these logistics.Our Family’s PlansOf our extended family, a great number of them are in Eastern Tennessee and North Georgia, along with many dear friends, so we will be packing up over the next month and heading that way. We have some specifics nailed down, others (like our address) are still up in the air.We are hoping and praying that most of the final details are settled soon, before we move. We are confident that, even if this transition is difficult, it is a wise one. I am holding out hope for a break from difficulty — that new jobs, new home, new doctors, new community, and new baby would all come with relative ease. Whatever the case, the last two years have taught us that we can be sustained on even “the slenderest provision.”While we expect God’s provision and look forward to being near so many loved ones, we are also grieving the end of our time in Jackson, especially that it would end this way. There are so many dear friends (family) I want to hug before we go, and cannot. So, we will be making plans for visits, and many, many video calls. And I will be looking forward to heaven even more. Or, you know, y’all could move out our way so I don’t have to wait.I am dreaming about plans to try in the future (Net branches, prison ministries, therapeutic gardens, etc). They will have to wait for the right time, or perhaps for a different person. While my distant future is uncertain, we know that my focus will be narrower for a time as I care for our daughter during this pandemic and get ready for our second (coming in August!).ThanksEach of you, in various ways, has been an important part of supporting my work and our family. You have prayed for me, advocated for me, worked alongside me, cared for me, and put food on my table. I’ve recorded the incredible work that you have made possible in many places (including here).

While the confidentiality of counseling has meant that you have had to observe from afar, I have had the deep privilege of witnessing the impact of your compassion and generosity. I have witnessed heartbreak, healing, and God glorified. I have seen the incredible growth and ministry of our counselors. I have rejoiced with our counselors and mentors over abundant new life in our clients and wept over evil and tragedy. I have witnessed our family endure under strain. Jesus has kept me broken, and He has held my parts together.

In this time of uncertainty, injustice, and suffering, it is worthwhile to hold the tension between the good and the bad: I am sad and glad. I am hopeful and frightened. The start of this new chapter may be challenging, but I know all will be well in the end.

Grace & Peace,

Erin

“[Christ] said not: “Thou shalt not be tempested, thou shall not be travailed, thou shall not be afflicted”; but He said: “Thou shalt not be overcome.” God willeth that we take heed to these words, and that we be ever strong in sure trust, in weal and woe. For He loveth and enjoyeth us, and so willeth He that we love and enjoy Him and mightily trust in Him; and all shall be well.

Julian of Norwich in Revelations of Divine Love, courtesy of Chandra Crane

Photo Credit: Moving House by Nathan O’Neal, retrievable here.

February 2020: Content in Crisis

Last time I wrote I used the word discouraged. I was. In many ways our circumstances remain unchanged. Really, they may be worse, along with everyone else’s on the planet. But we have received so much care, in so many forms, we couldn’t help but be buoyed up.

Meanwhile, COVID-19 has been spreading around the globe. I have heard from a number of friends that you are anxious for yourselves, anxious for us. With the ground shifting daily under our feet, I have a lot of news to tell. Per tradition, I’ll start with an update on The Net, then on our family, and finally some thoughts (hopefully of the encouraging kind).

The Net: Independence and Dependence 

For the past eight years of our ministry, The Net has been a branch of Voice of Calvary Ministries. We are deeply grateful for the accountability and support they have provided though our birth, toddling, and adolescence. The burgeoning growth they facilitated made it necessary for us to leave home and form our own 501(c)3, with our own board.

A few weeks ago, the IRS approved our bylaws, and The Net became its own 501(c)3! This month we are transitioning, and in April we will be running with new accounting, a new board, a new address. Same work, same lovely people. For those of you who support us with occasional gifts, our new information and on-line giving will go live this week. For those who are regular supporters, we are sending out information on the logistics tomorrow.

As we enter this new phase, we have been reminded that independence is largely an illusion. We, like all of you, have been affected by COVID-19, though thankfully none of us are yet sick. Many of our partners have suspended operations, which means that our meetings must be suspended too (this includes our jail & prison sites, & Midtown Partners). We have also suspended meetings at our other locations for one week, as we put practices in place to ensure that our counselors and clients have the space and hygiene supplies needed. Some of our counselors will be providing “tele” sessions — we’re still working those details out.

Family: Power and Powerlessness 

Receiving care is powerful. In the last month we have been given meals, gifts, words of encouragement, and prayer. Our little ranch’s roof has been swept clean of the pine needles that continually threaten to rot it. Our lawn has been mown. Our laundry done. Projects which had stood unfinished for six months have been finished. We did nothing, beyond express a need. Last month I was deeply discouraged, and every facet of our lives was suffering. After five weeks of community care, I’m downright cheerful, and very grateful.

We have also been receiving care from my doctors. The two leading theories on my problem are that (a) I have intracranial hypotension caused by a cerebrospinal fluid leak or (b) there is something mechanically wrong with my skull &/or spine.

Both problems are complications of EDS. Both have similar ranges of possible outcomes. Both could improve significantly, even completely, with non-invasive treatments. Both could require surgery in the end. Both could cause lasting problems left unsolved by surgery. Both can be dangerous. How dangerous, I don’t know, because both are so rare the research is sparse.

While I am waiting on testing, my instructions are to minimize my activity and to lay down whenever my symptoms are worse than mild. Until recently, this meant I was nearly on bed rest. Last week, my symptoms almost disappeared, praise God, and we had a vacation from disability. Today they returned to their usual severity, so I’m back on the couch, writing.

One reason my doctors are being cautious is I am currently four months pregnant! We are so grateful and excited. We are also sometimes worried. Pregnancy for EDS patients is usually a little more complex, though not overly dangerous. My current complications are cause for concern, but we still have every expectation that in August we will be a family of four. Like many things in my life right now, this pregnancy is not how I would have had it. I would rather not be growing baby girl in a broken body while a pandemic rages. But I have the power to accept the bad and celebrate the good. How could we not be celebrating? What wouldn’t we give to bring this little soul into the world?

Contentment  

I cannot improve our circumstances. I cannot make the fibers of my body whole and strong. Those things that make our experiences more like heaven — wellness, safety — I have little influence over them. Powerlessness is not unique to me; it is the human condition. Pandemics should remind anyone who has buried their powerlessness in wealth, busyness, or the thousand other strategies for control, of the hidden corpse of their powerlessness.

But this powerlessness does not have to be complete. The power I do have is given me by God and cannot be taken away. I can use my voice. I can ask for help. I can pray. I can help my neighbor. I can live in a broken body & world, becoming more like the person I will be in heaven.

So, I can be content. (You can be too.) I cannot say with Paul in 2 Cor. 12 that I am “well pleased” with weakness and distress. (I’m not even sure what he meant.) I would not have chosen all this; I am not pleased. Our family’s situation is difficult, and pandemics are evil.

I can say that that God is sufficient. I do not need to be happy. I do not need to be healthy. I do not need to expect good things tomorrow. I have a good Father, a loving Brother, and a present Helper. So, as John Finch said, “having abandoned one’s feeble attempts to constitute one’s own security, one finds that he or she is and always has been held.”

I think, feel, & share all this in the context have having recently been discouraged, grieving, and afraid. I am not suggesting these feelings can or should be escaped. I am saying that they are survivable; they are often relievable; and they have an expiration date. In the midst of them we may not always be able to join Paul in being “well pleased,” but we can join in acknowledging God’s provision is “sufficient,” though slender (Phil. 4:11, quote from Strong’s concordance entry for autarkēs, translated contentment).

All the bad things — sickness, sin, suffering — they are not forever. We only have to make it up our hills with these crosses. Then we can enter our tombs, and rise again with Jesus. And on that day there will be no more sickness, no more pain. No more loneliness. No more evil. No more hospital beds. No more therapists’ chairs. No more breaking bodies. No more breaking hearts. 

Like my mama says, we are all rotting. (We just forget that from time to time.) Out of the compost of this world God will grow a new one, and He will raise our dry bones to enjoy His new garden.

Grace & peace to each of you.

“If we run from pain, we run from knowing ourselves. Similarly, if we run from our anxieties, compulsions, and depressions rather than entering into them and wrestling with God in the midst of them, we never know ourselves in a true and deep way. Symptoms are the voice of the soul. Learning to prayerfully listen to them, along with our dreams and patterns of reaction… is an important means of attending to our soul. Deep knowing of self is impossible without learning to listen to these messages from the deepest recesses of our inner world.”

David Benner, in Care of Souls  

God is our refuge and strength, a very present help in trouble. Therefore we will not fear though the earth gives way, though the mountains be moved into the heart of the sea, though its waters roar and foam, though the mountains tremble at its swelling. 

Psalm 46:1-3

For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us. For the creation waits with eager longing for the revealing of the sons of God. For the creation was subjected to futility, not willingly, but because of him who subjected it, in hope that the creation itself will be set free from its bondage to corruption and obtain the freedom of the glory of the children of God. For we know that the whole creation has been groaning together in the pains of childbirth until now.

Rom 8:18-22

January 2020: Laying Low, Literally

Hey friends.

The Net has been revving up this past week after its Christmas break. If you missed last month’s end-of-year report you can find it here. I can’t tell you much about how the past week has gone for Net counselors, though, because I have not been doing my job.

I have not been doing my job, because I have been having the longest “episode” I’ve experienced since they started in July. I don’t know how much information I’ve given about these things. So, for your information, if you want it, and as a mindfulness exercise for me, here goes:

When I first get up the first morning of an episode, I don’t know immediately that something is wrong. I get out of bed slowly these days, because of my blood pressure problems. I’ll feel wobbly for a moment then I am usually good to go. But on the morning of an episode, I begin to feel something strange after about ten minutes of standing upright. My neck feels stiff and achy. Sometimes it feels like a headache, but in my vertebrae. My throat will begin to feel tight, and nausea will begin to build. Some days the nausea remains merely nausea. Some days the nausea grows until I am vomiting every time I stand. The ringing that I always have in my ears seems to grow louder. Sometimes my vision gets a little funny. The edges of the objects around me seem to glow, and I see blurry afterimages of things after turning my gaze away.

All of these symptoms improve, sometimes disappear, after laying down. All of these symptoms reappear within ten minutes of standing, for as long as the episode lasts. So I spend most of the day laying down during episodes — technically able to stand, but at a high price.

The first time this happened we went to the ER. They checked for a stroke or injury and when the scan was clean they told me it was probably my blood pressure.

This was better than a stroke. But there were many reasons why “it’s your blood pressure” did not make sense. (Why would my symptoms be worse when the objective measures of my BP problem are still mild? Etc…)

So I asked several of my doctors over the next few months. And they have begun to settle on the theory that I have a cerebrospinal fluid leak, a condition created by a puncture in the dura protecting the spinal chord and brain, If you’ve had a spinal tap or an epidural, you may have had one of these before, usually treated with a brief procedure called a blood patch. I had one after a spinal tap, fixed within two days. Easy-peasy.

But apparently in people with Ehlers-Danlos, due to the weak collegian throughout our bodies, CSF leaks can just happen, spontaneously. Spontaneous CSF leaks are rare, rarer than Ehlers-Danlos is. They are difficult to see on imaging, and can go untreated for long periods of time. Usually, they “just” cause headaches (severe headaches). Having nausea, vomiting, and visual symptoms may mean a more severe leak. Sometimes they cause seizures. They also increase your risk for meningitis, because the protective dura is breached.

For some people, bed rest solves the problem. (Nope.) For others, a blood patch works. (Would be so grateful.) For some it takes spinal surgery to fix. (Yuck, but ok, fine.) For some, nothing works. (…)

So, as I lay here on the couch with a low-grade fever that my doctor has told me is probably not an infection, and contemplate the possibility of seizures, meningitis, spinal surgery, and this happening over, and over again, I find myself discouraged. There are stronger feelings in me; I’m not going to them right now. I know that this disease which causes me so much trouble is written in my daughter’s body. But I’m not going any further than that today. I can’t. I don’t have enough hope to go there and feel confident I can find my way back out.

Some of you reading this may be surprised to hear me feeling this way, after seeing me cheerful two days ago. All I can say is, I wasn’t lying. My episode was a length I was used to at that point. My anti-nausea meds were working. But five days and several new symptoms in this episode is different, and scary.

I know God is good. But His idea of good and mine sometimes differ. He plays a long-term game when I would rather not. I am very capable of being miserable while knowing God is good.

For example, I hate asking for help. I feel sick doing it. So many other people need it more, and I have trouble thinking of what kind of help would be helpful. But it is literally humbling (as in low to the ground…haha) to have this problem, whatever it is.

So I am asking for help, despite not knowing what we need. (Our freezer is full of pizzas, because we are used to this. Our girl has childcare; we don’t need money.) But Dave just texted me and asked “what do we do if you stay like this?” And I don’t know. He knew I didn’t know when he texted. We are both worn out and scared. And maybe this part of things is God’s redeeming evil for good (being humbled and acknowledging a need for help). He’s into community and humility. I don’t like them, apparently. Not like this.

And if you are reading this and can’t help; know I am thinking of you right now. Some of you, friends, have far worse things happening — losing children and parents, losing marriages, losing homes, losing hope. Or not having those things to begin with. Know I am praying continuously, on my couch, that Jesus comes back soon. Because, though God can make good from evil (most powerfully in using man’s deicide to save us), this does not mean He likes or wants the evil. And you and I don’t have to like it either.

A Cheerful Looser: Year End Update, 2019

Morning, friends.

It’s December, so we have prepared a brief annual report on poverty in Jackson, The Net’s work and results, and our needs. A few highlights, before moving to our family update:

The Census Bureau Estimates that 28% of all Jacksonians and 30% of our children are currently living below the federal poverty line. One of the tragedies of this impoverishment are the twinned facts that research is proving that the stressors of poverty cause & exacerbate poor mental health. While, at the same time, poverty limits access to the services most needed to combat its devastation. 

The Net has been laboring to undo this second fact, one client, one mentee at a time. To learn more about our work and expansion this past year, read our annual report here: Report (3)

Join us in our work this coming year. Join us by praying. Consider joining us by volunteering, or by giving. Fifty-five dollars covers all the costs of one session of counseling. Twenty-five covers the costs of materials to train a mentor, $3.50 provides a bible for a mentee in prison. You can provide for these things by visiting the donate page of our website.

Family Update

November was crammed full of traveling, doctor’s appointments, and sick days. We are simultaneously rejoicing and grieving over starting Little Girl in Occupational and Physical Therapy. Rejoicing, because her pain has been reduced, and perhaps it will stay away a while. Grieving, because for her being pain-free takes work and a doctor’s care. It is not her natural state.

I have had more bizzare days during which I cannot be upright without vomiting. I have some appointments upcoming which I hope will tell me why my body sporadically decides it’s allergic to verticality.  

I recently told a friend, who had asked how I was, that “I’m not drowning.” She perceptively replied, “But how high is the water?”

It’s high. Through the wet weather of November we have continued to wrestle with what it means to seek our Father’s will. Our circumstances feel like the primordial sea of chaos. It is hard to see Him at work, and it is hard to make choices. My abilities have shrunk, our family’s margin has vanished. Most days feel like a page covered with illegible words scribbled from edge to edge. 

We know that Christ promised following him would mean taking up a cross. Putting Him and His kingdom above earthly comfort and security. Loosing our life to find it. But we’re also told to look to our own concerns and those of others. To guard our hearts. To give up the struggle for self-righteousness in tattered good works. To enter His Sabbath rest.

But what does this mean? When I am already exhausted at 4:30 do I make that phone call I’ve been meaning to make for a client — because that is my cross? Or do I lay down for a nap — because Christ has secured my Sabbath? Do I push through and accept the pain and exhaustion as proof I am alive? Do I pull back and say, “I am weak?” Do I run or do I rest? 

If I know nothing else, I know that my Father does not want me to martyr myself with a resentful, fearful heart. When I loose my life (literally or metaphorically), He wants me know I have a new life hidden with Christ. Cheerfully giving my life is dependent on my resting in who my Father is — knowing that, as chaotic as life may feel, I am safe. Cheerfully loosing my life means mimicking Christ in loosing His. Not happily, not without asking for another way, but knowing there is joy set before me. 

Feelings of desperation are my sign that it is time to edit — to erase enough off the page to make it legible. What to erase, and how much are still confusing. But at minimum, I need enough time to get my heart in order. When He requires my heart of me I want it to be a gift He has made lovely. 

There are many editing choices we have not made yet. Questions for which we have no answers. I do know I will be reducing my hours with The Net by around four hours a week starting in January. Currently I put in between 25 and 35 hours a week with The Net. I’ll be trading those hours for other work I can do at home — horizontally, if necessary. That change should get me closer to something sustainable. On other choices we are praying for provision & wisdom. 

December is slower without my having to actively make it so, and I hope to use that time to watch & wait. 

Grace & peace to you this advent. 

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The point is this: whoever sows sparingly will also reap sparingly, and whoever sows bountifully will also reap bountifully. Each one must give as he has decided in his heart, not reluctantly or under compulsion, for God loves a cheerful giver. And God is able to make all grace abound to you, so that having all sufficiency in all things at all times, you may abound in every good work. As it is written,

“He has distributed freely, he has given to the poor; his righteousness endures forever.”

He who supplies seed to the sower and bread for food will supply and multiply your seed for sowing and increase the harvest of your righteousness. You will be enriched in every way to be generous in every way, which through us will produce thanksgiving to God. For the ministry of this service is not only supplying the needs of the saints but is also overflowing in many thanksgivings to God. By their approval of this service, they will glorify God because of your submission that comes from your confession of the gospel of Christ, and the generosity of your contribution for them and for all others,  while they long for you and pray for you, because of the surpassing grace of God upon you. Thanks be to God for his inexpressible gift!

II Corinthians 9:6-15

 

Cover image: “Advent” by Jonas Tana https://www.flickr.com/photos/jonastana/

Sept. & Oct. 2019: Love Costs Pain

Hello friends,

As established by tradition I have a ministry & family update covering my/our work and life. I covet your prayers over both, particularly over news we had concerning Little Girl.

Ministry Update

Forever ago (a.k.a. August) I started introducing you to my co-laborers at The Net. If you missed meeting Quita, Sarah, and Ryan you can find them here. This month, I have two more to introduce to you, with three more to follow in future months. First, though, I want to pause and acknowledge that God has grown The Net from two counselors, when I began three years ago, to our current nine! Nine! I am astounded at the impact these men and women are having on our communities.

Carroll

Carroll is one of those astounding men. After ministering as a pastor for years, Carroll decided, not to retire, but to pursue a shift in method. He went back to school to start a second career as a counselor. He joined The Net over a year ago now — time has flown.

During that time Carroll has worked faithfully with men at the Madison County Jail and women at the Central Mississippi Correctional Facility. Carroll brings care, compassion, and respect for his clients into those dark places. We are thankful for his perseverance in difficult work and for the joy he takes in it. We hope to have him with us for a long time.

Natasha

Like Carroll, Natasha’s life has also been one of one of service: within her family, her career, and her community. Natasha’s love for the Lord and others and her resulting labor is humbling to witness. She is with us, at The Net, in addition to full-time work and care-giving at home.

Natasha, like Carroll, has been serving with us for over a year now. She currently gives a few hours every Saturday at the Rankin County Jail, counseling women there. We are thankful for her heart, and the powerful way she leverages her time for the effective care of others.

Please join me, friends, in praying for Carroll & Natasha’s protection, provision, and continued perseverance.

Our experience at The Net has been unusual, in that the harvest and the workers have both been plentiful, but the paychecks small (if existing at all). If you would like to support the work that that Ryan, Sarah, Quita, Carroll, Natasha, and our other counselors are doing you can donate at thenetms.org/donate. If donating to support a specific counselor you can note their name in the the “instructions” field provided.

Family Update

September and October brought more changes for us. Specifically, last Tuesday brought change. Before Tuesday crashed into our lives, September and the beginning of October had been busy, but crisis-free. Dave and I have both been working long hours. (Not counting, of course, the washing, the cleaning, the wrangling of a two-year-old… Y’all know.)

I have been grateful that, despite the busyness and the extra strain it puts on my body, I have been managing. I have been experiencing more pain, less of other symptoms. Still, most days I can do what I need to do. I have had two more episodes of the bizarre collection of symptoms that started in July, and I may need to start pursuing an answer on what is causing them. I’ve been assured whatever is wrong is not imminently dangerous.

We managed a visit to my family, Little Girl visiting her Papa and Mimi, going to the fair, and a few dinners with old & new friends in the last two months. All basic, but significant, accomplishments. Two hours of heat and walking at the fair required five hours on the couch in payment, which was not a shock. We are getting better at predicting my limits and planning accordingly. 

When I experience my limits, my pain, I am often cast forward in my mind into a vision of Little Girl’s future in which she battles these things too. In May we were told that there is a “high likelihood” she has inherited Ehlers Danlos from me. Since then Dave had been holding out hope that she may not have it. I had lost that hope, but I had been hoping that she may have a milder version. (Symptoms vary widely, even within families.) Last Tuesday damaged those hopes.

What happened last Tuesday?

Since Little Girl was given her “high likelihood” quasi-diagnosis we have embarked on a series of screenings for various symptoms and complications. The first several were clear, and we celebrated.

Tuesday we had an occupational therapy assessment by a wonderful woman at the university hospital. The O.T. watched her move and play and carefully asked how her joints felt. She measured the flexion and extension of her little wrists and fingers, and tested her awareness of her body in space (her proprioception).

I felt numb as she confirmed fears I have been attempting to dismiss as anxiety for a year now. She confirmed that many of Little Girl’s joints are hyper-mobile, even for a two-year-old. She affirmed that Little Girl appears to have impaired body awareness (likely due to loose joints providing less information to her brain about their position and rotation). She confirmed that Little Girl appears to be modifying her behavior when repetitive motion causes her pain. This includes her grip on her crayon slowly devolving over the course of six minutes of drawing, from her advanced “tripod” grip back to the fisted hold she first used when she was an infant.

Little Girl sometimes complains about her fingers and other joints. I have hoped this might mean she only experiences pain occasionally. I have hoped that there was some bump or scrape I missed, that the pain was not caused by faulty instructions deep in her DNA. My guts retched when the OT asked if anything hurt after drawing, and Little Girl methodically pointed to every joint in her hand, and the muscles in her palm. She had not complained before being asked.

I now ask about her body, instead of waiting to be told. I am learning that when she adjusts her posture, her grip, it is often because she is in pain. I assume she does not complain because she has accepted pain as normal. I do not remember my pain starting so young. If memory serves, I did not start having “inexplicable” pain until I was asked to distance run in fourth grade P.E. So, I worry that, not only has my precious, only daughter inherited my disease, but she has a more severe case. I worry this as I watch closely for her small adjustments, wordless complaints. I worry this when she trips over nothing three times in a row and when she runs into the doorframe despite looking straight ahead.

Our O.T. appointment ended after we developed goals for Little Girl’s treatment. The therapist is hopeful that by strengthening muscles and improving awareness we can protect her joints and buy her time. I am hopeful too, physical therapy has helped me. What the OT did not need to say is that the pain is inevitable, incurable, inescapable, and behind the impending pain the other risks of this disease loom. Barring a miracle, her broken body has already deemed her doom. We will fight it, but we cannot beat it.

To what is she doomed? To pain. To continually tightening limits. To constant doctors’ visits. To the loneliness of being unknown, sometimes avoided. To a particularly tangible mortality & frailty. To the things that plague us all, but for her there will be more of them (than some), and earlier. 

Being her mama hurts so badly. I wish my heart could stop breaking. Why has Jesus not come yet?

But knowing and loving her is worth every wound to my happiness. Even if she were not the cheerful, loving, smart, fearless girl she is, she would be worth every blow. She is ours, and we love her with everything in us — all our heart, soul, and power.

And I am amazed to think that this is how God feels about us. That he has called us His children, when He did not need to create us. That He sent His only son to suffer and die for us, when they did not have to redeem us. That the Spirit groans for us when He could choose not to care. That He loves us through the pain of our suffering and our sin. Sinful as I am, I love my daughter with all I have — and my God, knowing that, tells me to call Him “Abba.”

I hope, I hope, I hope that He teaches Little Girl to love herself and others through the pain.

“To love at all is to be vulnerable. Love anything and your heart will be wrung and possibly broken. If you want to make sure of keeping it intact you must give it to no one, not even an animal. Wrap it carefully round with hobbies and little luxuries; avoid all entanglements. Lock it up safe in the casket or coffin of your selfishness. But in that casket, safe, dark, motionless, airless, it will change. It will not be broken; it will become unbreakable, impenetrable, irredeemable. To love is to be vulnerable.”

C.S. Lewis in The Four Loves

July & August 2019 Update: Run The Race

Hello Friends,

This week has finally afforded the time and energy to write an update. I’m excited about writing the first part of this post: the work happening with The Net and the wonderful counselors we have. I initially followed this sentence with “I’m not looking forward to the family update…” I still feel pretty ambivalent, but having written it out and thought it through, it wasn’t so bad.

Work at The Net 

As you know my work is precious to me, and I am so grateful to be a counselor and a site manager with The Net. “Privilege” is too small a word to describe it. If you read my update last month, you also know that my health means our family is living day-to-day. Part of this new lifestyle means working to make sure I am not an indispensable part of The Net, so that if some crisis arises my absence does not disrupt our work. So, I’ve asked for my colleagues’ permission to introduce them to you. I want you to know the wonderful people I am working with, and I would love to lift up their needs with you. I’ll be introducing four this week, before giving a little update on the White family.

Quita 

Quita is an archetypal nurturer. She is lovely. In addition to the love and care that she gives to her family (Christian and biological) and community, she consistently provides her clients with warmth, care, and wisdom. Quita is a life-long learner. Counseling is a career she’s pursued after having raised her children. Now, having completed her training — educational and practical — she continues to exercise her curiosity for the good of her clients.

Quita currently sees clients at the Rankin County jail and a few referrals from the Redeemer community. (She has been seeing clients at Midtown Partner’s Prosperity Center as well, and is in the process of transferring her clients there to Ryan’s capable hands.) The jail administration has told us there would be an uproar if she was removed. We share the sentiment.

Would you please join me in praying for Quita in the following ways:

  1. Time and focus for studying for LPC exam.
  2. Approval of her application to take the LPC exam.
  3. Continued wisdom with clients.
  4. God’s comfort and healing in hurting lives.

Sarah

Sarah has been with The Net for approximately six months now, and we have been extremely grateful to have her. She is powerfully empathetic and an extremely hard worker. Sarah, like Quita, attends Redeemer Church in Jackson and is an essential member of her family as a daughter, wife and mother.

Sarah is currently seeing clients who have been referred to The Net by Redeemer Church and other community members. She has also been providing services as needed at the Client Center (formerly the Center for Pregnancy Choices) and she sees clients at The Redeemer School (I said she was a hard worker).

Please pray:

  1. For successful fundraising and support as a missionary. Sarah is currently working with us for love and a tiny stipend that helps cover some professional costs. However, her young family means that it is difficult to give large amounts of time without real pay. She loves her work, and we ask that you pray with us that God would provide financially for the work she is already doing, and that if He would have her work even more with us, that He would provide her the funds for that too.

Ryan 

Ryan is a recent addition to The Net’s team. He finished his degree at R.T.S. in the spring and I am so glad he has come to us to continue his work. Ryan and his wife are members at Redeemer Church, and they are both intensely active in the body in Jackson. I have enjoyed Ryan’s energy, his ease with clients, and the skills he has brought with him from other experiences.

Ryan is currently seeing clients at The Net’s old partner, The Prosperity Center. He is also seeking to add sessions at the Rankin County Jail and The Redeemer’s School. Like, Sarah, Ryan is hoping to fundraise to support the work he is already providing.

Please pray:

  1. For more opportunities to see clients
  2. Gaining more comfort in his role at The Net & as a new counselor
  3. For the provision of monetary support

Anna Maria

The Net is bidding a fond farewell to Anna Maria, who has been with us at The Prosperity Center for nearly a year. It was obvious from her first day that her clients would love her, and indeed that has been the case. She has been called (literally and figuratively) to a different position serving students, and we are so excited for her.

Please pray:

  1. For her clients
  2. For wisdom
  3. For God’s provision and care as she transitions.

And that’s four down, three to go! (But next week.) If you would like to help support Quita, Sarah, and Ryan’s work (generally or individually) you can visit The Net’s website. To support a specific individual you can add their name in the memo line of your check or the “directions to vendor” in your online payment. Currently, 100% of donations to support a specific counselor go toward that counselor providing services — no percentages to administrative costs.

Family

Friends! I have been using the word scattered for myself lately. The feeling may have something to do with the many things which have happened in the past two months. Some of those things were obvious provisions from God I am still rejoicing over. Some are frightening, sad things, which still have me waiting on His help.

I tried writing a chronological description of what’s happened, but that was unreadable. I am too disjointed, and there is too much. So, here’s an overview in list form:

  • Baby Girl’s Health:
    • Baby girl’s initial screenings for complications have all come back normal. (Thank you Jesus!)
    • After her normal screenings she then promptly came down with a cough which developed into a mild case of pneumonia. She’s gotten much better on antibiotics.
    • Her chronic symptoms have continued, but are mild. We need wisdom on whether to sit back and cope with the symptoms or pursue more invasive testing to try to determine their cause & find a cure.
  • Rest & Celebration:
    • In July we celebrated a friend’s graduation and had a lovely family vacation.
    • Labor Day also brought a rest and sweet time with friends. These were all wonderful experiences.
    • My hearing loss appears to have plateaued! Things have been so crazed, I hadn’t even remembered to celebrate this.
  • Chaos & Self-Care
    • August has brought a hyperbolic increase in our workloads. We are wrestling with how to manage this.
    • We have started a few routines to try and impose self-care and family-time on our chaotic lives.
    • We have succeeded in seeing more of our friends, more of the body lately. God’s people are precious.
  • Loss & Illness:
    • Dave and I have had three family members in & out of the hospital in the past two months. All are currently home.
    • We also have several close friends facing potentially devastating diagnoses, yet to be confirmed.
    • Dave and I have lost two family friends the past two months, one on each side of our family. The loss of these brothers was bittersweet.
    • Three weeks ago I experienced some severe symptoms which resulted in urgent care and emergency room visits. The doctors ruled out imminently dangerous problems, as ER Doctors do, but we do not have an explanation for the symptoms yet, which continue to come and go.

I have come away from — all that — exhausted, a little sad, and grateful for many provisions. Few things in our world are guaranteed, or permanent, but God provides moments that give form to my hopes for heaven.

I want to run the race. Lord, renew my tired parts.

Love and strength to you all,

Erin

Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us,  looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God.

Consider him who endured from sinners such hostility against himself, so that you may not grow weary or fainthearted.  In your struggle against sin you have not yet resisted to the point of shedding your blood.  And have you forgotten the exhortation that addresses you as sons?

 

“My son, do not regard lightly the discipline of the Lord,

nor be weary when reproved by him.

For the Lord disciplines the one he loves,

and chastises every son whom he receives.”

 

It is for discipline that you have to endure. God is treating you as sons. For what son is there whom his father does not discipline? If you are left without discipline, in which all have participated, then you are illegitimate children and not sons. Besides this, we have had earthly fathers who disciplined us and we respected them. Shall we not much more be subject to the Father of spirits and live? For they disciplined us for a short time as it seemed best to them, but he disciplines us for our good, that we may share his holiness. For the moment all discipline seems painful rather than pleasant, but later it yields the peaceful fruit of righteousness to those who have been trained by it.

 Therefore lift your drooping hands and strengthen your weak knees,  and make straight paths for your feet, so that what is lame may not be put out of joint but rather be healed.  Strive for peace with everyone, and for the holiness without which no one will see the Lord…

For you have not come to what may be touched, a blazing fire and darkness and gloom and a tempest  and the sound of a trumpet and a voice whose words made the hearers beg that no further messages be spoken to them.  For they could not endure the order that was given, “If even a beast touches the mountain, it shall be stoned.” Indeed, so terrifying was the sight that Moses said, “I tremble with fear.” But you have come to Mount Zion and to the city of the living God, the heavenly Jerusalem, and to innumerable angels in festal gathering, and to the assembly of the firstborn who are enrolled in heaven, and to God, the judge of all, and to the spirits of the righteous made perfect,  and to Jesus, the mediator of a new covenant, and to the sprinkled blood that speaks a better word than the blood of Abel.

See that you do not refuse him who is speaking. For if they did not escape when they refused him who warned them on earth, much less will we escape if we reject him who warns from heaven.  At that time his voice shook the earth, but now he has promised, “Yet once more I will shake not only the earth but also the heavens.” This phrase, “Yet once more,” indicates the removal of things that are shaken—that is, things that have been made—in order that the things that cannot be shaken may remain.  Therefore let us be grateful for receiving a kingdom that cannot be shaken, and thus let us offer to God acceptable worship, with reverence and awe, for our God is a consuming fire.

 

Hebrews 12

Photo by Kevin M. Klerks

June 2019 Update: Facing Our Dragons

Hello Friends,

It’s been five weeks since I asked for your prayers for our baby girl. I’ve delayed writing because I haven’t known what to say.

Five weeks ago we took our daughter to the genetics department at The University of Mississippi. She was given crayons and a coloring book which had been donated to the department by a non-profit. Receiving this gift was initially sweet, then unsettling as I imagined her living a life in which she was “a recipient of charity,” whatever I imagined that meant at the time.  

The nurse showed us into a small exam room with a examination table, two black chairs, the doctor’s stool, and a computer mounted on the wall. After a wait that exhausted her two-year-old patience, the geneticist walked in and began her assessment. She screened for more serious (deadly) conditions, took a family history, bent baby girl’s joints, stretched her skin, stared at her scars. We volunteered every piece of relevant information we could recall. 

At the end of the appointment she said (roughly), “Well, we do not officially diagnose this type of the disease until age six, but I think there is a high likelihood she has it. It may be wise to treat her as if she does.”

I brought out my list of questions: Should we do an echocardiogram? Should we see an occupational therapist? Should we screen for other complications, or just watch for symptoms? Why is her skin scarring so badly? Could her scarring mean her/my diagnosis is slightly off, and we have one of the more serious types of this disease? Do you know of anyone who sees patients with this disease? — We can’t find anyone who is familiar.

She answered: “Maybe…maybe…watch…I’m not sure…maybe” She provided us with the name of a pediatric rheumatologist who has treated the disease before, and said that additional screenings are not urgent, but it may be helpful to do them.

Then there was the uncomfortable minute which happens at the end of so many meetings with doctors, where the sympathetic but distant stranger assures you all is not lost and leaves you to sweep up the shards of your shattered life from off the exam room floor.

***

I do not know what to do, much less what to say. We don’t know whether we should press on and keep trying to glue the pieces of our lives back together in some semblance of the form they’ve been. We don’t know if we need to smash the pieces a little more and make something completely new. We do not know if we need to be proactive or reactive. We don’t know.

As I make appointments for baby girl I am also making appointments to address continued problems with my hearing and other complications. Again, we don’t know what will happen. It may be that a medication I am taking has helped slow any further loss. However, it is also causing side effects which have been difficult to handle.

What is He doing? I don’t know.

There’s a passage in The Lord of the Rings where Frodo and Sam talk about the different emotional experiences of characters in fairytales and the readers of fairytales.

“We hear about those as just went on [said Sam] — and not all to a good end, mind you; at least not to what folk inside a story and not outside it call a good end. You know, coming home, and finding things all right, though not quite the same — like old Mr. Bilbo. But those aren’t always the best tales to hear, though they may be the best tales to get landed in! I wonder what sort of tale we’ve fallen into.”

“I wonder,” said Frodo, “But I don’t know. Then that’s the way of a real tale. You may know, or guess, what kind of tale it is, happy-ending or sad-ending, but the people in it don’t know. And you don’t want them to.”

I am inside this story. I am not the omniscient narrator. I do not know what He is doing.

I am staring our dragons in the face and I do not feel brave; I do not feel exhilarated. This story feels more like horror than epic, more King than Tolkien.

***

We do not know what will happen. I am thankful, therefore, that we have been adding counselors at The Net. We are up to eight counselors now; two years ago we had only two. We also have had a Net alum offer to take a pro-bono case or two, in the event our counselors’ schedules are full. 

I have also been working to make my position more expendable. I do not want to be expended, but I do not know what will happen next. So I am writing down all the tasks I do, and uploading all my (non-confidential) files and resources onto a shared drive. I am seeking out more funding, so we can pay our counselors for the work they are doing, and for any work an absence might create. (If you would like to join me in sustaining The Net’s work  visit thenetms.org/donate.) I am working to insulate The Net and our clients from any of my crises.

***

I focus on the good moments: Baby girl playing with her cousins. My husband and I watching a ridiculous murder-mystery. Working in the garden when the day’s cooled off. Sitting with clients. Sitting with friends. I deliberately squeeze every bit of light and thankfulness out of them that I can. 

I pray for heaven. Come quickly, Lord Jesus. I do not understand why He waits; I do not know what I am meant to do. I believe someday I will, and it will be a beautiful story.

 

 

 

Feature image by Sharat Ganapati 

May 2019 Update: Praying for Baby Girl

Hi friends,

This month has been hard. I am going to give a brief ministry update and then skip to some health and family needs.

The Net has been trucking along this month. As I mentioned last month we are in the process of bringing on a new counselor, Ryan, as well as implementing some new administrative systems.

Overall, there are no changes to report (which in this case is a good thing). The stability this summer should give us time to do tasks which will allow us to serve more clients in the fall. I have been working supporting our counselors, seeing about half my caseload (it shrinks significantly in the summer), setting up systems for monitoring our clients’ outcomes and feedback, developing training materials, and continuing my education on trauma with some excellent lectures by Bessel van der Kolk.

I have been doing this in between episodes of a new problem. I mentioned last month that I have been experiencing episodic hearing loss, ear pain, and pressure. These episodes have continued. I have a tentative explanation, but unfortunately the suspected problem is chronic/incurable, and the treatment my audiologist is recommending conflicts with the treatment program I am on for other problems.

I do not know what will happen. I already have some hearing loss. I do not know how much more I will loose. 

While we have been trying to chase down answers about my hearing, our family has also been anxiously waiting for our two-year-old’s upcoming genetics appointment. We have been noticing signs and symptoms of my disease in her, and we were fortunate to be accepted for an appointment by the pediatric geneticist here in Mississippi.

That appointment is this Friday. When I am not pretending that all this is not happening, I am terrified.

I am terrified, not because God is not in control, but because His kingdom is not fully established yet. We are living between Christ’s first and second coming. He has died for us; He has made us family. Sometimes He heals; sometimes there are glimpses of heaven. But this world is still groaning, still in pain. The apostles were martyred, as Christians continue to be around the world. My clients suffer; my neighbors suffer. Why not us?

Which is to say, I expect her to be diagnosed Friday. Or, I expect them to “suspect” a diagnosis on Friday, even if they are not ready to commit.

I don’t want this. I want heaven to break in and protect her. I am praying constantly. (Please pray with me.) Lord, let her be well. Protect her tiny body and let it grow. Keep her in health: her skull and spine, skin and bones, eyes and ears, teeth and throat, heart and vessels, every fibre in her which you have made, let them be strong. Have mercy.

I do not have much hope this will be answered with the specific act of mercy I am looking for. I have more hope that God is listening when I pray. I have hope that He loves my girl more than I do. I am terrified of what our (her and my) bodies may do to us, but I have hope that one day they will be made new, and I will not cry over them any more.

Please pray for my girl & for streams in our desert.

Peace and grace,

Erin

 

Thus says the LORD,

who makes a way in the sea,

a path in the mighty waters,

who brings forth chariot and horse,

army and warrior;

they lie down, they cannot rise,

they are extinguished, quenched like a wick:

“Remember not the former things,

nor consider the things of old.

Behold, I am doing a new thing;

now it springs forth, do you not perceive it?

I will make a way in the wilderness

and rivers in the desert.

The wild beasts will honor me,

the jackals and the ostriches,

for I give water in the wilderness,

streams in the desert,

to give drink to my chosen people,

the people whom I formed for myself

that they might declare my praise.

April 2019 Update: Under Demolition

Ministry Update

Hi family,

It is refreshing to be writing to you again. Writing settles me so powerfully — I universally recommend it. I find it helpful, in part because of the forced perspective recounting a story requires. I have to back up an consider more than today’s worries.

The Net has been blessed this past month in many ways. I am thrilled to announce that after months of volunteering with us, Quita Sauerwein will be joining The Net as staff! Quita is a beautiful, compassionate woman and we could not be happier as we look forward to laboring together. As Quita will be transitioning away from our Midtown locations, we have also had the joy of bringing on a new counselor, Ryan. This brings our current total of active counselors to eight! Like myself, Ryan and Quita will be paid for their work by donations to The Net. If you would like to support Ryan and Quita’s salary with a one-time gift you can visit http://www.thenetms.org/donate/. If you would like to partner with both or either of them as a monthly supporter, let me know and I will put you in touch.

Work has continued at our seven locations this month, with new opportunities to support our ministry partners. Our director, Cathy, has been gathering testimonies from our mentors, which I hope to share next month. Our counselors will soon be providing opportunities for feedback to our clients as well, which will allow us to we can gauge our strengths and weaknesses and share any encouraging stories with you (with permission, of course).

We have also had a much-needed lull in expansion after securing Ryan’s partnership. This has been providential, as health problems have been frustrating one of our team members and myself.

Please pray, as you remember, for:

  • Several groups of clients who will be graduating from counseling
  • For our young clients, many of whom will be away from us for the summer
  • For favor with our partners and ease as we shift counselors between positions
  • For financial support for our counselors
  • For the health of one team member, who is making a recovery from unexplained illness.

Personal Update 

After some productive discussion and restful family time, my husband and I (if I can speak for him) had briefly felt more settled, relaxed, and adjusted to our new lives with my disease. I had the meeting with my cardiologist I wrote about last month, which went well. He adjusted some of my medication which has resulted in an incredible increase in my energy — I’ve gone from slug-slow to a determined tortoise’s pace. He raised no new concerns about the potential for complications, which we will continue to monitor. We had a respite of several days without crisis in April. They were beautiful.

But this world is broken. Respites are by definition brief. I began experiencing the return of some old symptoms, as well as the frightening addition of pain and a muffled sensation in my ears. We do not know what is wrong with my hearing yet — if it will be treatable or not, static or progressive.

After my symptoms increased, our two-year-old had a renewal of some GI symptoms that we had hoped were behind us. We are waiting on more information with this situation too.

I have to say, problems with my hearing have incited a new round of fear, but the panic over baby girl is worse.

I have developed alternative career plans in the case of my hearing’s demise. I may have already drafted a new project so I can immediately work if deafness takes my ability to counsel. I have the numbers of possible ASL tutors. I’ve looked into cochlear implants. I am not saying all this was necessary at this point, but I feel better having done it, so there.

I have no contingency plan in the case of little girl’s illness. Just fear.

The phrase “His ways are not my ways” have been rattling around in my head the last few days, as I consider the many ways my life has changed. I am living on the assumption that God is grieved to see me in pain, but that he is also powerful to stand evil on its head and turn it to good. Fruit trees need the cold of winter to be able to bear fruit in spring. But as I look at my life now, I have difficulty identifying any good thing that has come out of my illness. When I do identify something good, I cannot honestly say I am glad of the suffering for the sake of the fruit.

Am I more aware of disability; more compassionate? Maybe, somedays. I would rather be able to walk without pain. I was acceptably compassionate before, wasn’t I?

Am I more aware of my capabilities? More humble in my frailty? Maybe. Sometimes. I would rather be pursuing self-centered plans than be practicing Christ-centeredness.

In short, God’s work is not done yet. I am not sanctified (see above priorities). I cannot have my old, more comfortable, less-aware-of-sin-and-suffering life back. I cannot enter the new earth yet. I have lost all the ease of my old life without a satisfying taste of the next.

And I see that I do not really care about being good, not the way God cares. I would be happy to be good-ish. Better than I was. Better than my neighbor, so I can look down my nose at him. I don’t care about being really good. At most a part of me wants to care.

I did not realize, when I committed to this Christ, that I was signing up for surgery without anesthetic. I read this passage from Mere Christianity years ago. I could not have imagined then what it means to me now.

…Here is another way of putting the two sides of the truth. On the one hand we must never imagine that our own unaided efforts can be relied on to carry us even through the next twenty-four hours as ‘decent’ people. If He does not support us, not one of us is safe from some gross sin. On the other hand, no possible degree of holiness or heroism which has ever been recorded of the greatest saints is beyond what He is determined to produce in every one of us in the end. The job will not be completed in this life; but He means to get us as far as possible before death.

That is why we must not be surprised that we are in for a rough time. When a man turns to Christ and seems to be getting on pretty well (in the sense that some of his bad habits are now corrected) he often feels that it would now be natural if things went fairly smoothly. When troubles come along — illnesses, money troubles, new kinds of temptation — he is disappointed. These things, he feels, might have been necessary to rouse him and make him repent in the bad old days; but why now? Because God is forcing him on, or up, to a higher level: putting him into situations where he will have to be very much braver, or more patient, or more loving, than he ever dreamed of being before…

…I find I must borrow yet another parable from George MacDonald. Imagine yourself as a living house. God comes in to rebuild that house. At first, perhaps, you can understand what he is doing. He is getting the drains right and stopping the leaks in the roof and so on: you knew those jobs needed doing so you are not surprised. But presently He starts knocking the house about in a way that hurts abominably and does not seem to make sense. What on earth is He up to? The explanation is that He is building quite a different house from the one you thought of — throwing out a new wing here, putting on an extra floor there, running up towers, making courtyards. You thought you were going to be made into a decent little cottage: but He is building a palace. He intends to come and live in it Himself.

C.S. Lewis in Mere Christianity

I do not particularly want to be a palace, as it appears to mean demolishing my back wall, ripping up the floors, and tearing off the roof. But God does not do things by halves. Fortunately for me, He is willing to work with a feeble little faith, and continue His work so long as I don’t say “No!”

Please pray, as you think of me, for His will to be done.

Grace and peace,

Erin

 

 

Cover photo by Steve Johnson, https://www.flickr.com/photos/artbystevejohnson/

Feb & March 2019 Update: Strength in Weakness

Ministry Update

A theme in my last six months of writing has been The Net’s unexpected growth into new settings — two jails and a prison — in the last year. We have roughly doubled the size of our counseling branch, and our mentoring program has grown exponentially.

This year we do not intend to expand to new sites (perhaps just one), and we plan to add 10-20 hours of counseling a week at the most. We are focusing our energy on working to make last year’s growth sustainable, and to order our work in such a way that The Net might have a long life serving Jackson, if God so wills.

Many organizations look to build up the confidence and enthusiasm of their stakeholders by focusing on their strengths. This front-dressing is such an inherent part of our culture we often do not notice it.

If I am going to be honest, though, I have to break with that norm. This operations-oriented work is not my expertise. I have some business experience, but no formal training. Many of the projects I will be embarking on are outside my normal practice. I, and my fellow-workers at The Net, certainly do have God-given gifts, strengths, and education. However, business management, contract law, and operations are not my strengths.

When I am working from a position of power it is easy to forget my efficacy is entirely reliant on the Creator-God. Working outside of those more natural abilities is a frightening and freeing challenge to my self-reliance. In the past year I have found myself praying guide my feet, hold my hand more often. The vulnerability of that prayer is far less frightening when I am mindful of whom I am praying to.

As you pray for The Net, please pray for:

  • The continued work of our counselors and mentors — their encouragement and perseverance.
  • The financial sustenance of our growth. Specifically, that the five counselors who are currently volunteering their time with us might have their support funded. If you would like to donate towards that goal please visit thenetms.org/donate/ 
  • The provision of participants who can help us develop the structure needed to assure The Net’s longevity.

Personal Update

While wrestling with these new, somewhat unfamiliar goals with The Net, I am still trying to learn how weak I should expect my body to be moving forward.

Seven weeks have passed since I was finally diagnosed. I think, maybe, perhaps, we are getting used to this new reality. We have been sitting still and sad on our couch; we have been scrambling to find knowledgeable doctors. We have been re-hashing, reconsidering the expectations we have been carrying our whole lives. We have been visiting family and friends. We have been anxiously watching my symptoms, trying to establish what our “new normal” will be.

In some ways, grief and loss are like the Gospel — their impact is heavy & holistic. I cannot think of many choices, routines, or hopes that have not been changed by having a chronic disease. In my work and at home we are adjusting to a new set of rules which began to impose themselves years ago, and which have now been declared permanent.

I cannot expect sleep to refresh me. I cannot expect my body to work for me. I cannot expect movement to be pain-free. I cannot expect patience to come easily.

I can expect movement and life to be a constant battle. I can expect my Father God to count my pains until the day He ends them. I can expect my life to be exactly what he intended it to be.

All this is frightening. I am frightened. I do not like pain. I do not like weakness. I do not like limitations. My husband scolded me yesterday for picking up an armchair — I want to pick up the dratted armchair. I do not like the particular kind of anxious uncertainty which has turned our lives topside-down and spilled the pieces all over the floor. I do not know what to expect from this world, this year, this body.

But I do know that Father, Brother, and Comforter who love me. They use broken things to display their glory. I know their strength is made perfect in my weakness. My God is the God who comes to me in my ignorance, confusion, evil, and helplessness. But he does not leave me this way. He makes me strong.

The hand of the Lord was upon me, and he brought me out in the Spirit of the Lord and set me down in the middle of the valley; it was full of bones. And he led me around among them, and behold, there were very many on the surface of the valley, and behold, they were very dry. And he said to me, “Son of man, can these bones live?” And I answered, “O Lord God, you know.” Then he said to me, “Prophesy over these bones, and say to them, O dry bones, hear the word of the Lord. Thus says the Lord God to these bones: Behold, I will cause breath to enter you, and you shall live. And I will lay sinews upon you, and will cause flesh to come upon you, and cover you with skin, and put breath in you, and you shall live, and you shall know that I am the Lord.”

So I prophesied as I was commanded. And as I prophesied, there was a sound, and behold, a rattling, and the bones came together, bone to its bone. And I looked, and behold, there were sinews on them, and flesh had come upon them, and skin had covered them. But there was no breath in them. Then he said to me, “Prophesy to the breath; prophesy, son of man, and say to the breath, Thus says the Lord God: Come from the four winds, O breath, and breathe on these slain, that they may live.” So I prophesied as he commanded me, and the breath came into them, and they lived and stood on their feet, an exceedingly great army.

Ezekiel 37:1-10

As you pray for our family please pray:

  • For our marriage’s unity, as we each try to respect and work with our own and the other’s reactions to stress.
  • Praise for the efficacy of my physical therapy! The number of bad days per week is decreasing!
  • Prayer for an upcoming doctor’s appointment on the 18th of April, when we will learn more about the seriousness (or triviality) of a cardiovascular complication I’m experiencing.
  • Prayer for our Lil’ Bit’s continued healing after a broken collarbone and stomach problems.

Thank you all for your love and support.

Grace and peace,

Erin

 

 

Cover photo by Audrey: https://www.flickr.com/photos/audreyjm529/