Thank you, Life In Slow Motion, for allowing me to Reblog your eloquent thoughts.

Well, I’ve had a Spinal Cord Stimulator (that actually works well) for four and a half months now. More like eight if you consider I got it in December, before my revision. I love my Boston Scientific Spectra SCS. Even more, I love the folks who have made getting my SCS possible – those who selflessly have cared for me during my months of restrictions and post-op. Without them, I wouldn’t have a Spinal Cord Stimulator. Without them, my pain would be entirely unmanaged.

Because my friends helped me get my SCS and helped me through the healing process, I was able to travel (with significant help) for three days to a women’s retreat. I’d not traveled for anything other than specialist appointments for several years and it was SO NICE to get out of my apartment and fellowship with others. I didn’t have a CRPS flare afterwards, but I did have a Dysautonomia flare which laid me low for a few days on bedrest. I recovered, however, and I’m back to my “new normal” self. God and my friends made all that possible. I owe my friends a great debt.

I could be wrong, but I feel like the SCS has helped prevent some major RSD/CRPS flare-ups in the last few months. I’ve had flares (the worst was around 46 days), but compared to how bad it could be, I’ve been spared. My pain levels aren’t zero, but I am able to get through the day with naps and intermittent rest between activities. I can walk MUCH better with my SCS and I can stand for longer (15 min) too with less pain. Probably the biggest change has been that I’m rarely afraid of people or things touching me when my SCS is on. When it’s off, that’s a different story altogether, but it’s on almost all day long. Before my SCS implant, I was terrified and crippled by the fear of someone or something touching me. I didn’t want to be out of my house or around ANYONE! Now I love and miss socializing most days.

I’m trying to find comfortable settings for my stimulator so I can keep it on at night and hopefully not wake up as frequently nor in so much pain in the morning because the CRPS has caught up with me while it was off. I think I’m learning and making more progress with this each night.

Some days the stimulation helps more and other days less even though I don’t feel any more or less likely to flare from one day to the next. Sometimes the stimulation moves a little even though my leads haven’t shifted a bit. I don’t know why. Last week I was getting stabbed in my hips and lower abdominal area. This week I still have some hip and coccyx coverage but it’s not stabbing and I’m able to turn the stimulation up without irritation. No idea why that happens, and I wasn’t reprogrammed last week either (though I think I was the week before).

SCS isn’t for everyone, and for some it’s a nightmare. I’m glad that despite a revision things are now working well and I can be more comfortable.

Gutsy Girl

On a Facebook support group for SCS one member asked about what someone considering getting a Spinal Cord Stimulator should know or think about¬†before making a final decision. I wanted to share my response here. There’s no particular order to these thoughts…just off the top. ūüôā
I certainly don’t and won’t discount the experiences of those who have had a hard time with SCS or had theirs removed. My journey hasn’t been pretty either, but I’m SO GLAD I ENDURED and now the SCS really is changing my life and I feel that it’s helping to decrease the number of flares and my susceptibility to them.

It doesn’t help with EVERY type of nerve pain I have. Many folks with CRPS who have an¬†SCS find it helps decrease the burning pain. For me it doesn’t, but it does help with allodynia and some thermal hypersensitivity as well as helping me stand/walk longer with less pain. Some frequencies help with different types of pain I’ve found. I change my programs several times some days to address whatever pain is most prominent at that moment.

I had my first SCS implant on December 14th last year, but we didn’t get 3 of the 4 leads in the right place. We had tried something risky – using Boston Scientific’s 8-contact leads to stim all the way from mid-abdomen to toes. I wouldn’t recommend trying that trick again! Unfortunately, those leads just aren’t long enough and I lost stim in my legs below the knees, and my right arm didn’t work at all and caused nerve root irritation. So my revision was March ’14. Recovery hasn’t been easy, but for a number of reasons my second surgery was actually easier though more invasive.

My trial went very well in some ways and horribly awful in others. I was on the table for 2.5 hours and pretty miserable. All that poking and moving leads up/down left all my nerves inflamed. My leads moved as soon as I got off the table and I couldn’t use either of the arm leads during the trial, but my legs worked GREAT and for that alone I was hopeful.

It was a long 7 months of not lifting over 5lbs, not bending or twisting or reaching or or or…and I use a wheelchair so that was even more complicated. For most people the restrictions are 2-4 months. I’d just had two SCS surgeries back to back, so that tacked on another 4 months for me. If anyone is trying to decide on getting a permanent implant, I suggest setting up the house as best as possible BEFORE surgery so that the restrictions are easier to follow. Don’t feel bad if you can’t wipe yourself; that little amount of bending is soooo painful. It will get better as you heal. It’s also better to just follow the restrictions to a T to avoid a revision if possible. Nobody wants to go through that again.

There is real risk of spread due to the surgery. I was willing to accept the risk both times because I cannot take pain meds and most medications make me sick, very sick. All other treatments, including ketamine, were not options for me due to other medical conditions. If it’s possible to try ketamine and if you’ve looked into the risks of that treatment as thoroughly as the risks of SCS therapy, it might be best to go for the less invasive option first which seems to have a much lower risk of spreading the disease.

I also think anyone looking to get an implant should really try to consider the emotional side of it. It was harder than I’d anticipated. I was fine and am fine with having a foreign object in my body that I can feel and the scars don’t bother me that much. Perhaps I should call them battle wounds? But I wasn’t prepared for the frustration of healing and the restrictions and boredom. I like to do EVERYTHING for myself.

It can be hard too, even when things go well, accepting that the SCS isn’t a cure and won’t knock out pain entirely. It just doesn’t do that. Some types of my pain are relieved by 95% (touch allodynia) and others are barely changed. Surges of stim happen with changes in posture. The higher up the leads are placed, the narrower the space between the leads and nerves in the spinal cord, so the stimulation can be rather finnicky and at times just plain annoying when it changes.

Be prepared for the surgery to HURT. Every surgery is different. My first was a monster and the second was bad, but it took more out of me the first time even though I only had one incision on the first round and no scar tissue to battle and cut out. Pillows are your friends, not just in bed, but in the car and when sitting at home and just about everywhere else.

Patience with the SCS is helpful. It can get frustrating when reprogramming is necessary every 1-2 weeks for a while. Remember that your body is going through a lot of adjustment and try not to freak out when the stimulation changes in the first month or two. If you’re concerned, always contact your rep and/or doctor. The reps are really helpful when answering my questions. My programming sessions are STILL about 2 hours long, and that’s with a now-working SCS. It’s taken time for my reps and I to learn what really works and doesn’t work with my body and SCS, but as time goes on it gets better and better. The coverage gets more even, doesn’t jab me in certain spots.

Oh, speaking of that, don’t be afraid/embarrassed to tell your rep if the stim is going to “exciting places” because they’re used to hearing that and can pretty quickly get it out of there to prevent, well, you know.

Be prepared mentally to put everything you’ve got into your time in the Operating Room. Many decisions are made during the surgery which can’t easily be un-made afterwards. I wish I’d known that the first time. If it doesn’t feel EXACTLY RIGHT, don’t let anyone tell you they will fine-tune it with reprogramming. INSIST if at all possible that you want them to do it NOW, in the O.R. That’s our one shot. It’s a lot of pressure but worth it in the long-run, even when we have to be the bullies and advocate for ourselves while in pain. If you can feel way too much, ask for more local anesthetic. You may still feel it, but keep thinking of the relief you hope to have. (You may hurt more AFTER the surgery anyways, so hey, try to hold on while in the O.R. and they’re giving you calming drugs.)

I had them put my SCS in the side that I don’t normally sleep on as often which helped because for a long time I wasn’t able to sleep on my back or left side, only my right. Some also consider which side of their body has more severe CRPS as part of their decision in the placement of the battery unit. I had mine placed in my mid-back, below my last rib, because the CRPS starts in my lower back and I didn’t want anyone cutting nerves down there. I’m also grateful now that I didn’t have to have any extensions tunneled through my back! Less is more.

Not allowing battery to drain is helpful because it takes a lot of time to charge it back up, especially if it goes into “hibernation” mode. The heat from charging plus the pressure over the implant isn’t comfortable. When you’re first able to charge your SCS after surgery, just charge it for a few minutes at a time even if a few times a day (just after your pain meds kick in, preferably) rather than going for an hour or longer. Mine takes 3 hours to charge 1/3 full. Keep up with medication doses so you’re not trying to play catch-up with your post-op pain. When I travel, I take all my SCS stuff with me. Can’t risk a flare. I do find charging kind of annoying, but if I try to do something active to take my mind off it while I’m charging, that really helps. Think of how lucky most of us newbies to SCS are in that we don’t have to plug up to some charging pad connected to a wall each night!

About the emotional aspects, again…I saw a brochure from Boston Scientific about all the things these SCS folks could do after getting their SCS’s. Playing on the beach, gardening, woodworking, working in general!, camping, you name it. And I was like, “But why do they show people doing these things? I’m sure there are a select few who can get back to doing that kind of stuff. I have a friend who is back to working on her feet all day full-time! That’s great. But I don’t think it’s the norm. I feel sad that I don’t think I’ll ever be able to do these things again despite what I’ve been through to get my SCS.” I wasn’t mislead by my doctors or reps really. They didn’t give me that dumb literature either – I saw it on a table. Yet I think it’s a good idea to hold loosely our hopes for the return of FUNCTION we expect to get out of having an SCS. Pain reduction? YES! Improvement in function in my ADL’s? Yes. But I won’t be doing most of the things (especially IADL’s) I was (I think secretly, unwilling to admit to my self-conscious) hoping to do after I got my SCS and my pain levels decreased.

Blessings to anyone out there trying to make these decisions. I know it’s hard and there’s a lot to think through.

This isn’t a pretty post. It’s an honest one. I haven’t been writing much lately, which is to say issues are kind of piling up in my head and I’ve avoided dealing with them by staying busy DOING stuff. Now I’m running out of stuff to do and my body is tired, so my brain is yelling at me to find some other form of “get it off your chest” relief. So….I’ll write.

I’ve had a few revelations in the last couple of weeks. I’m still banging my head against the door that reads “What do I do with my life?” I never thought feeling better could be so challenging! Let me rephrase that. I never thought feeling better but still having chronic illnessES could be so challenging and bring up so much junk inside….! I guess that’s the rub. The chronic stuff isn’t going away, and I need to learn to live with it not really in the background but not in the foreground either (when it doesn’t need to be there) – somewhere in the middle. I’ve got to force myself to live in the gray rather than the black or white.

Goals, Ideas, Dreams, Pursuits….
While I detest laziness, I’ve met some people who seemingly feel no particularly compelling drive to accomplish or do anything with their talents. Yet they profess to be quite content in that state of ‘do-nothing’. I’ve never understood that, as I tend to see that more as an excuse to avoid personal responsibility. Yet if they really are as pacified as they claim, that’s got to be nice in some ways. Some of those same people I know like to complain that they never had the opportunity to do X, Y or Z, like get an education or whatever, frequently blaming others for their inability to achieve some goal. While in some cases that may be true and other people or circumstances outside of their control may have held them back, I often sense in such persons a present lack of drive to pursue ANY¬†goal even when opportunities do truly abound.

Myself? I probably err in the other direction – pushing myself to achieve particular goals while sacrificing too much in other areas of my life, to my own detriment. I could be wrong, but I don’t THINK there’s a lazy bone in my body. Even if it takes much longer and a lot more work, I like everything I do to be done “right”. Quality matters to me, even in my casual writing.

How do I pick up where I left off?
I’m starting to think I left off “living” and dreaming, generally speaking, when I could no longer work in my field of Occupational Therapy. Does¬†that seems as ironic to you as it does to me? (If not, think on it a few seconds and it will….) I just want to pick up and move on. I’d like to pretend I’m not “sick,” but I know that won’t work for long. Not taking my limitations into account when deciding what to pursue now and for my future will only lead to the pursuit of endeavors which are bound to fail when the next piano falls on my health.

Harder than I thought…
This is MUCH HARDER than I had anticipated. I thought after getting my SCS (spinal cord stimulator) and when/if my pain levels became more manageable (and I’m so thankful they have been!) I’d just kind of pick up something and run with it. Now I see it’s not that simple because I’m still limited by my conditions and as I’ve dealt with healthcare and survival (including college, family drama etc in that mix) the rest of me got left behind in the scuffle. Some parts of who I am have grown greatly while other parts have remained stagnant, in a holding pattern until I could look past my physical health to pick up the pieces again, laying right where I left them nine years ago.

I’m in a time warp.
During the last nine years (I counted), when I’ve had brief intermissions (usually a few weeks to months) between one crisis and the next, I went back to activities and interests I liked as a young adult or teenager (such as rollerskating or swinging in the park) as opposed to exploring new interests that better fit my new reality and age (uhm…now I know why my parents weren’t rollerskating with me – falling and tight muscles hurts more when you’re older!). That isn’t so bad in itself. I’ve needed to reconnect to something I missed, find something familiar to bring me back into a world that isn’t tied up from end-to-end in HEALTHCARE. When I’ve done this before, however, suddenly I got hit with a BOOM – the other shoe would fall and within a few days or weeks I was back to using all my resources just trying to keep my body in working order. The short respite didn’t give me enough time to sort things out mentally/emotionally and realize how stagnant I’d become. So I never got the opportunity (that I’m aware of) to move forward in the last nine years.

In nine years I’ve obviously changed in many ways. My interests, however, haven’t yet matured or caught up with my present reality.

Or maybe my interests have matured, but I’m more familiar with a ’21-year-old in-less-pain’ version of myself and don’t know how to connect the two. After 21 I feel like I only know a version of myself ‘in-more-pain’ and there is no ’30-year-old in-less-pain’ version yet. For that, I must default to 21.

At 23 I was ready to get my career going and I enjoyed the passion I felt for my work – I loved it! I was interested in dating and getting to know people, but health failed and it all crashed to a halt.

Two general pursuits…
Now I see two very general directions I’m open to pursuing: marriage or career. The odd thing is that I feel like I’m back at square one on both accounts. At 21 I didn’t yet have a “useful” college education (2.5 years but no degree) and I didn’t know what field I wanted to study after changing my major. That’s how I feel right now, all over again, because I can’t do OT. At 23 I wanted to date but couldn’t while working AND going to school full-time. It’s hard to date now because of my limitations and not having a conducive social network.

To pursue a CAREER (and not just a job I can¬†do from home which I find tediously boring) I must either get more education or teach myself a marketable skill, which will take much time and diligence and possibly some money for courses. I have my doubts that I could manage my pain and dysautonomia well enough to go to school even part-time and actually have a brain that functions well enough to make use of the education I’d be trying to absorb. If I flare, studying and understanding lectures will be flying out the window. I must choose something that isn’t going to fail by default. I still need to give up my dreams of going back into the field of rehab/Occupational Therapy. Dr. Z told me I must plan to work from home and she’s told me to find things that are flexible enough to incorporate the reality of future flares.

HOW THE HE// DO YOU PLAN FOR ANYTHING IF YOU HAVE TO “INCORPORATE FLARES”?
Seriously! Flares are so horrible you can be stuck in bed for weeks and so weak you find it hard to talk, you can’t walk, you’re just praying to either die or miraculously survive the next 10 minutes of agony. Then dysautonomia gets triggered by lack of sleep on top of the pain. I have no need to exaggerate – that’s what a CRPS flare is like, in an extremely compact nutshell, without added emotional/mental strain being factored in. How do you work or go to school or serve your family if you’re in a flare-up? It’s like damned if you do, damned if you don’t! Doomed to failure if you try to follow your dreams, doomed to frustration and lack of vision if you don’t try and give up. (I’m not mad at Dr. Z, I’m just frustrated in general I think.) At my appointment with Dr. Z today, in answer to my question, she said, “You’re right; there’s not much you can do when you’re in a flare.”

I’m stuck in limbo. Plan for flares but also plan to move on with life…I don’t see how those two can cohabitate in the same reality.¬†

To pursue marriage I must leave my house and get involved socially with others, which takes a lot of energy and planning. I must improve my ability to ask questions and remember details in conversations, even when I’m tired and in pain. I have to stay involved and not disappear from friendships when flares/pain knocks me down, not give up because I feel overwhelmed with my health and don’t know how to handle anything else “on top of that”.

Truth be told, from the late 20’s and up, going to groups for “singles” kinda stinks. The guys left over who are around 30 are often divorced, have comb-overs and used to work for IBM but still use pocket protectors and wear fanny packs. You know? Ouch. I just CAN’T date a guy with a fanny pack or a comb-over! I’d be so tempted to shave his head! That spells “Slim pickin’s”. My current social life consists of no¬†opportunity to meet someone I’d like to date.

I tried the online dating thing a few years ago. Nobody was interested in me except for these sleazebags who are total skeevers. I prefer to meet someone in person, but that’s hard to accomplish when I’ve got to figure out how to work with the plans social groups often make spur-of-the-moment which I can’t participate in (“Hey, let’s go…” to the movies = migraines, bowling = can’t with CRPS in my arm unless I want to be a fly on the wall (not my style), walking at the park = fainting on a guy could definitely be dramatic but that’s not what I’m aiming for, dining out = wish you had told me sooner so I could have packed my cooler and I sure hope the place is Handicap Accessible!).

A lot of those online profiles single guys make request a “spontaneous” lady, and I’m definitely NOT that. ūüôā Correction: My mind can handle limited spontaneity and I can enjoy it; my body? not so much. People my age DON’T UNDERSTAND ME. It’s seriously annoying. I don’t know why, but I generally tend to fit in with folks in their 50’s and 60’s better than folks in their 20’s and 30’s. It’s like we have the same understanding about life or something. For better or worse, when my disability is visible (wheelchair, etc), men are often scared off and that significantly reduces those interested in me which may work in my favor because I don’t have to do as much of the weeding intentionally.

Failure Ahead!

Therefore, the two general areas I have an interest in pursuing (there used to be many more when I was 21 and 23) – marriage and career – seem impossible to me. No matter how much I want either nor how hard I work towards either, I see a big sign flashing “Danger! Failure ahead!”

Unlike the folks I first mentioned who seem not to care about pursuing much of anything that requires effort or hard work, I’ve put in the effort and hard work whenever I could, but I rarely saw the fruit of my work, if you will. Right now that feels like a sour deal to me. I’m sure that’s¬†based on this idea of entitlement I must believe deep down – that if I work hard enough I’ve earned whatever it is I’ve worked for. Life doesn’t always happen that way.

Oh my…I’m feeling trapped in so. many. ways. There’s got to be something I can do. *Clenching teeth.*

 

Picture of card which reads "Loved Beyond Measure"Mother’s Day.¬†

To couples and singles facing infertility, those words can sound like two atomic bombs. The air raid sirens begin to wail and everyone runs for cover as the date comes near. Those trigger words – babies, mommy, daddy, childless, single, pregnant – which sometimes fire blanks seem to be full of real bullets in the springtime¬†month of May. All systems are on “high alert” in anticipation of a national¬†“holiday” to celebrate infertility – oh wait, no, I meant to celebrate MOTHERHOOD. Whoops.

Actually, I really dislike the word “infertile” and “infertility,” so I think I’m going to stick to “childless”. No, I’m not sure that sounds much better. I guess it’s the same thing no matter what you call it – a stark reminder of what you don’t or cannot have and what it seems like you cannot give.

In this blog post you will hear some bombs that went off around me¬†on Mother’s Day, and you’ll also¬†feel¬†the gentle night breeze that wrapped me up in reminders of God’s sovereign care. Such is the bittersweet experience of a christian woman walking this road.

SO, HOW DID I SURVIVE MOTHER’S DAY THIS YEAR?

Preparation

As much as I wanted to stick my head¬†in the sand, I knew Mother’s day¬†was coming. Therefore, the date was circled in dark pen on my calendar as I counted down the days to avoid surprises. I wrote Mother’s Day cards to my Mom¬†and Gran and my Sister-In-Law at least one week beforehand so that I could think clearly and really give them the thanks they deserved, before the air raid sirens were deafening.

Remembering Others

I took time to reach out to other women who are in the trenches, some who have the trenches memorized and could crawl through them blindfolded, it seems, after years of¬†experience (if you’re wondering, I DON’T have a map of the trenches yet). While the emotional bombs may not be perpetually falling, something I’ve learned from these older women is that the desire to be a mother doesn’t just disappear with time. One of these women told me last week, “Even just recently, just yesterday, I thought, “What if I got pregnant?! I’m in my 50’s!”. It might not happen, but it could happen, though if it happened it would really be God, you know? The desires are still there.”

Remembering what she said, I wrote to my Gran (who hasn’t had children of her own – we are related through Christ) who has expressed the same sentiments at other times. I wrote, “Mother’s Day¬†is so bittersweet, isn’t it? During this day our hearts are happy to see mothers honored. During this day we can celebrate the blessings we have received through our biological and spiritual mothers. That’s the sweet. But then there is the bitter. The stark reminders of so many dreams, hopes and longings unfulfilled. How can a day of celebration be both so joyous and suffocating simultaneously? Though our personal experiences with this bitter-sweetness differ by circumstance and by our personalities and how we cope, I am so glad that we can behold the Cross together and say with the tenor of confidence that only the Holy Spirit can bestow, “Christ is enough!”. Because for all those dreams that died under the weeping willow’s shadow of disappointment there is an empty tomb testifying to LIFE and hope in our Risen Savior, who is the Redeemer of all death and darkness. In a miraculous way, we trust that every loss is gain and God will surely wipe away every tear, every pain. He will sustain us and He will be more than enough for us to maintain true joy. Thank you for sharing your journey and walking beside me on my own. Go and enjoy this Mother’s Day because it honors you! Meanwhile I will pray for the both of us that the sweetness of His fragrance will overpower the bitterness of loss and bring peace. Love, Sarah”

Prayer

This was the most important thing I did – I prayed. I wanted God to show me how I can enjoy the joy of others rather than¬†being entirely self-absorbed and swallowed up by wishing for what others have (coveting, right?). I wanted to honor those to whom honor is due and appreciate their sacrifices, as this is pleasing to God. I wanted to be able to hold the bitter and the sweet together and give both up to God with grace. I asked God to confirm in my heart my value as a woman despite my single and childless ‘status’ – my value as the woman He has made me to be in His own right, for His purposes and for His glory. I asked for broken, humble submission to be birthed within my heart. And I asked God to help me love others NOW with the love I desired and do still desire to give to my own family one day, rather than holding out on loving until the “perfect opportunity” comes.

I sometimes experience a deep ’emptiness’ and it drives me to God in prayer. I ask God to take a passion for Him and for the mission of sharing the gospel and to fill my emptiness with that passion. I ask for healing of the CRPS and restoration of my health in general. I ask for God to lead me to a man who is godly and who He is hopefully preparing to be my husband, but to also help me entrust this hope to Him and to fruitfully use this continued time of singleness which God has given me rather than spending (or wasting) it foolishly and frivolously. I just need God’s help. I’m weak. I do know, however, that my Redeemer lives and that He will have His way and I’m better off clinging to His promises, His hope, His purpose than to any other thing in this life.

As I have prayed, God has been faithful and gentle in His responses.

Fellowship

In the last month¬†a few more women who are living through infertility have come out of the woodwork in my church. I was at a women’s meeting last month and two of the three women who spoke had briefly mentioned God working in their lives through this very trial. It wasn’t easy to make myself vulnerable and expose my insecurities, but I did. Over the next few weeks I went to both¬†of them and began opening up a dialogue so that I could learn from them. I’ve benefited as I’ve listened to their stories – very different stories from very different personalities – and have received grace as they have patiently listened to mine. Knowing that they are praying for me is powerful, as they can pray for me in ways that others, to whom these trenches are entirely foreign, cannot pray. Though any conversations on the topic tend to leave me exhausted afterwards, I feel more assured that God’s goodness is displayed in His plans after I’ve spoken with these God-trusting women. They help me be a bit more patient with my grief and also encourage me to be honest with God, reminding me that God is big enough to take the weight of my emotions and to give me peace and contentment. Whether they know it or not, they remind me that I’m not alone. I see them as godly WOMEN. In my mind, I in no way put down their femininity because they could not have biological children, and as I give grace and compassion to them I’m able to better understand grace and compassion toward myself, which helps me extinguish Satan’s bullets and lies about my worth. Last week I asked one of these women if I could sit next to her in church this week. Just sitting near to someone who “got it,” even if nothing was said about “it” (and nothing directly was), helped me.

Do I Get a Flower Too?

I decided I would go to church on Mother’s Day even though I really wanted to skip. As I pulled into the parking lot I noticed more women – myself included – were dressed up in skirts with earrings than there¬†customarily are on an average Sunday. I said to myself, “I wonder how many women dressed up more than usual like I did today because they are feeling insecure or how many dressed up today because they are happy and confident (with children or without), celebrating?”

I know how my church celebrates Mother’s Day and I think it is sweet. Mothers are given a flower or a cute cookie cutter or a decorative card with some little gift inside. The moment my¬†wheelchair rolls through¬†the front door of the church as I head towards the auditorium for worship has got to be one of the most challenging moments of the day. I’m single. I’m childless. I guess I won’t get a flower/card this year.

To a woman who longs to have children, the simple gesture can look¬†like an otherwise invisible line of demarcation, a “no woman’s land” dividing “mothers” from “non-mothers”. Rationally, I realize the absurdity – a little card or flower makes no difference – but emotionally the link cannot be so neatly divorced. I tried (but failed) to avoid eye contact with the women passing out the cards this year, as if to pretend it did not¬†matter to me one way or the other (God forgive me for lying in church. Was that a lie? I’m confused.).

Dorsey, a joyful and personality-filled woman whom I’d consider to be a young “church grandmother,” was handing out the cards and bent down to tell me as she handed me a card, “Thank you for being a godly example to our young women.” I don’t think I said anything, though I may have tipped my hat. I quickly¬†slipped my card in my purse, almost unsure of whether I was supposed to have one or not. The card somehow felt like contraband. “Alright, that part is over,” I thought silently as I smiled a little because of the encouragement Dorsey had given me. Now I had a card burning a hole in my purse, however, and I wondered, “Does it have a poem in it about being a mother?” and vowed not to open it until I got home, and then only when I felt ready.

Typically something is said about mothers during the announcements and after worship or teaching, but the sermon isn’t usually given to the topic (for which I’m personally grateful – or I wouldn’t make it to church on mother’s day!). I give pastors and church leaders credit when they remember that Mother’s Day is both WONDERFUL (as it should be!) for many and difficult for some, and when the later point doesn’t escape mention. I knew some in my church were praying for those of us who found the day challenging for any number of reasons, childlessness (or “less-child-ness” for those who have a child/children but cannot have more) being only one of those potential reasons.

Ministry Should Happen Everywhere Christians are Gathered – Including the Bathroom…(but not¬†just in the bathroom)…

I’m always amazed at how much ministry happens from women to women in the ladies’ bathroom at church. I’m serious! That’s where the tears are shed and hugs are given and prayers are prayed. There’s this unspoken rule that “what happens in the bathroom stays in the bathroom”. (So, if there are any gents reading, now you know why we take so long in there and why the ladies’ bathroom needs to be twice as big as the mens’!) I’ve been on both ends of that ministry many times in the last six (?) years.

This Sunday it was the tears of those mothers who had lost children or who were grieving because their children aren’t walking with the Lord hitting the bathroom floor, but not silently, because other women were there with hugs, tissues and prayers. When I went to go “powder my nose,” one of the women who was sharing her tears took a few seconds to notice me and said, “I know it’s a challenging day for you, Sweetie, but thank you for encouraging us all by how you persevere.” The other women around her joined in. It was a moment that touched me because it served as a reminder that in the middle of our own pain, we can still look beyond ourselves (as this friend did) to encourage others. I want to be like that. Another woman told me specifically how something I’d done has blessed her little boy. These little encouragements went a long way for me, reminding me that while I may never “mother” proper, I can still love as Christ loved, and my love needs know no bounds.

Sometimes Strings Just Get Plucked…and There’s Not Much You Can Do About It

I came home from church and crashed on the couch. By evening I was emotionally and physically spent, having tried to get extra sleep in preparation for Mother’s Day but having found¬†myself in too much pain to get more than an hour of sleep the night before. I needed to get up and do my exercises as part of my doctor’s prescription to treat Dysautonomia and my chronically low blood pressure, and I needed to get out of the house before I went bonkers.

My friend, Mike, and I decided to go to the park to walk and as I started past my neighbor’s apartment I heard a whimper. My neighbor had found a kitten which she’d heard but hadn’t been able to locate for the last 48 hours. It had been crying¬†and abandoned and we assumed the mother cat may have been injured. She’d called animal control to have them pick up the kitten in the morning, but I knew if the cat survived the night it would be a miracle. I’m a sucker for animals. I don’t like to watch any animal suffer (almost not even a cockroach – I said ‘almost,’ as cockroaches aren’t even “animals” to me). As I started to feel my instincts to care for the kitten kick in, I said, “Mike, we better get going” and tried to change the topic because I didn’t want to think about it.

When we got home, I couldn’t get my mind off that kitten and I realized I had a dropper for milk that was probably the right size, so I brought it to my neighbor. I helped her feed the squirming kitten who was having trouble getting the hint. I didn’t even want to touch it – it was too cute. “Please do yourself a favor and don’t get attached to this thing!!” I kept yelling to myself in my mind. When I came back inside, I sent Mike a text message asking him,¬†“If you find out that the kitten died, please don’t tell me, okay? I’d be upset.”

At first I kinda beat myself up over caring about the kitten, but eventually I realized, “You’d care about this kitten and be sad if it died any day of the year. This happens to be exceptionally bad timing to be trying to care for a needy animal, however, so just take it for what it is and remember that sometimes things are just going to pluck those heart strings…and that’s life, and that’s okay.”

Just Gotta Get It Out

While Mike and I walked he noticed I was lost in my own thoughts.¬†“Why are you puffing (sighing)?” he asked. “Oh, nothing you could personally understand,” I answered honestly and kindly, not wanting to burden him with problems beyond his league.¬†We walked 5 laps instead of 4 today, but I still wasn’t able to work out the emotion through my exercise to the point where I found relief.

Instead, I remembered the years I’d worked so hard to improve my health for the purpose (though not the sole purpose) of being healthy enough to have children when I married. That was before I knew I had several other health conditions that make pregnancy very risky and before my health failed to an all-new low. After receiving my diagnoses and sorting through the implications with my doctors, I felt crushed. The years of hard work I’d put in with increasing hopes of becoming healthy enough to safely have children…didn’t work. And I remember feeling, well, “cheated” and learning that because God calls me to do something (take care of my body in a particular way) doesn’t mean he promises success the way I desire it or think He would give it. As I walked as fast and hard as I could, checking my blood pressure and pulse along the way while clinging for dear life to my walker, I prayed, “God, I know I need to follow this prescribed exercise plan, but right now it’s just reminding me of the times I’ve tried before to get well, and this time I have little hope that it’s going to help with MY goals. Help me. Everything hurts right now.”

I was glad when we were done walking and I went to the swing and swung for probably 15 minutes because I like the free flying feeling of the breeze on my face, then on my back, then on my face…. No matter how hard I swung on the swing nor how hard I prayed, the emotional aches and emptiness just wouldn’t leave. I wasn’t sad, really, and I could be grateful even as I told God how I hurt. One of the sayings I use which¬†Mike most likes is simply “It is what it is,” and that was my general attitude, trusting that God’s will is best.

After warning me more than a few times not to swing so high, I said, “Mike, there are things in life that make my heart hurt, and the hurt in my heart is worse than the physical pain I often deal with. Sometimes I like to think that feeling physical pain – or swinging with everything I’ve got in me – could distract or cover up the heart pain. I guess it rarely does unless the physical pain is very bad, however. So if I hurt from swinging too hard tonight, at least it was because I was trying to accept my life and God’s provision and to be grateful instead of striving for what I cannot have or give.” He looked at me like I had 27 heads, which is approximately what I expected. Smile. “You’re right… I don’t understand,” he admitted as he looked at the moon.

I began to tell him what I think heaven may be like, why I think God made the moon, pondering what music in heaven will sound like and what God’s voice will sound like. He listened to my excited considerations. Thinking about God and His creation was refreshing¬†– smelling the cool night air and noticing the blueness of the moonlight. “It’s amazing to me when I think that the same God who made that moon with the face in it and who knows all our thoughts and all our doings by day and by night, who made those starry big balls of fire, also made you and me. If He knew what He was doing when He made all of these, I’m sure He knew what He was doing when He made us, even with our disabilities.” My deeply philosophical moment was broken by Mike getting up and walking away with the flashlight, sweeping its beam from side to side across the ground. As usual in Mike’s company, levity followed as I joked, “What are you doing? Looking for doggie dung?” We laughed.

Whatever He Wants to Give Me

We got home and Mike said goodnight and went to his apartment. The card was still burning in my purse. I sat down on the couch with a deep sigh, staring for a few minutes at the purple and green stamped ink on the envelope. Then I opened it and read,

“Loved Beyond Measure….”We are women, and my plea is: Let me be a woman, holy through and through, asking for nothing but what God wants to give me, receiving with both hands and with all my heart whatever that is.” – Elisabeth Elliot”

I let the words sink in. I read it again. How fitting. By God’s design, I am a woman. I am loved beyond measure by the One who made the Universe. I want to be holy and I want my life to glorify God. I want what God wants to give me, whatever it is AND IS NOT.

Mother’s Day is for Women

Then I came to a comforting conclusion. Mother’s Day is a day to honor our mothers who God chose to give us life and to whom we should be sincerely grateful. It’s also a day to honor all women, God’s handmade life-nurturers and helpers. Mother’s Day is for you, and it’s for me too. Womanhood and motherhood were invented by God who gives good gifts. God notices the mothers who are barren yet who love all those whom God has put under their “tents”. See Isaiah 54:1-6, below. It’s not the title that matters, it’s the call to selfless love, serving others as unto the Lord.

Isaiah 54:1-6

1 “Sing, barren woman,
you who never bore a child;
burst into song, shout for joy,
you who were never in labor;
because more are the children of the desolate woman
than of her who has a husband,‚ÄĚ
says the Lord.
2 “Enlarge the place of your tent,
stretch your tent curtains wide,
do not hold back;
lengthen your cords,
strengthen your stakes.
3 For you will spread out to the right and to the left;
your descendants will dispossess nations
and settle in their desolate cities.
4 “Do not be afraid; you will not be put to shame.
Do not fear disgrace; you will not be humiliated.
You will forget the shame of your youth
and remember no more the reproach of your widowhood.
5 For your Maker is your husband‚ÄĒ
the Lord Almighty is his name‚ÄĒ
the Holy One of Israel is your Redeemer;
he is called the God of all the earth.
6 The Lord will call you back
as if you were a wife deserted and distressed in spirit‚ÄĒ
a wife who married young,
only to be rejected,‚ÄĚ says your God.

My Gran has been an amazing example to me of a woman who is a mother yet has no biological children. She’s loved many and has given her life to praying for and counseling several young women over the years. I praise God for her every day, for how she has richly blessed my life.

One Down and Recovering

So, that’s how I made it, between bombs and breezes, through Mother’s Day this year. And this blog post? It’s part of my recovery. Smile! I’m serious. It’s my “decompression” day where I unpack and unwind yesterday’s thoughts so that I can move on tomorrow. The kitten? I don’t know what happened, and I am not going to ask. Hopefully I’ll forget soon???

Thank you to all my friends for their support – my¬†friends who are childless, or who wish they could have more, my friends who are single and waiting or married and hoping, my friends who are grieving lost children, my friends who don’t want to have children yet are sympathetic, and my married with kids friends who are sensitive to all of the above. You make living sweeter.

Gutsy Girl

———————————————————————-

Resources:

If you’re looking for a way to bless a friend who is enduring infertility on Mother’s Day (or any day!), check out this link.

Looking for encouragement on your journey? This lady’s blog has really lifted me up this week with lots of wise and sensitive¬†posts on the topic, from one woman to another. For that matter, click through the hyperlinks within my post above – I think you’ll enjoy those too.

Finally, check out my friend Cindy Dake’s book, “Infertility – A Survival Guide For Couples And Those Who Love Them”. I contacted her through her website one day and her book has been the starting place in my lief for understanding infertility from a christian perspective. I cried through at least half¬†of the book, finding relief in hearing what I was thinking finally put to words and explained. (Thanks, Cindy, for your friendship!)