Life, sustained: Part 2

November 24th, 2017

She leaned across the table toward me in the little neighborhood pizza joint where we sat with five of my boys.  We had met only half an hour before, at the thrift store across the street.  She was a simple, comfortable sort of older woman who loved the Lord.  We had struck up a friendly conversation after she commented on the number of children with me.  She was visibly touched when she heard more about our family and asked if she could buy lunch for the boys and me.  As we made the arrangements, I noticed that she seemed to be distracted, vague, slightly confused, pausing often to search for words. She couldn’t tell me which highway she had taken to the thrift store.  She didn’t have a worrisome, Alzheimer’s sort of way about her at all.  In fact, her manner seemed oddly familiar to me, as if I was watching a video of myself.

Her eyes were serious as she told me of her husband’s disabling stroke years before.  She cared for him for seven years before he passed away.  For the first several years, she cared for him entirely by herself, as was her preference.

One evening, unbeknownst to her, she made a phone call and spoke irrationally with the person who answered.  But she doesn’t remember any of that.  What she remembers is waking up in the hospital, unaware of how much time had passed.

She also remembers the enforced weeks of complete bed rest.  “I could feel the pieces of my mind coming back together,” she said.

She realized that she could no longer stubbornly insist on handling all her husband’s care without help.

~~~~~~~~~~~~~~~~~~~~

Realistically, I could be a caregiver for the next thirty or forty years. We aren’t looking at a care-giving season of weeks or months. It is imperative that Joe and I craft careful strategies to address and balance everyone’s needs as the specific logistics of our family shift over time.

Even though God designed us and commanded us to work for six days and rest one day each week, in the past I disregarded that and tried to manage a grueling caregiver lifestyle without resting. I am never doing that again. It is not sustainable.  I have learned my limits. I no longer attempt to do everything or be everything that I or others might expect of me.

Yes, I am organized and hard-working, and I realize that I come across to others as being on top of all my responsibilities all the time, but I’m not made out of something different than others. I’m a normal human being with my own normal human limitations that must be observed and my own normal human needs that must be met in order to remain a healthy person while living an unusually demanding lifestyle.

I can remember living normal life in years past, before Verity was born. This is not like that. This is like living through the daunting type of season you might ask your close friends to pray you through…but then it never stops.  This kind of life cannot be handled accidentally. We must stay aware and purposeful to address the essential needs of everyone in our household, and that includes the mom.  I can’t go on indefinitely with all the oxygen sucked out of my life.

We Christians have too often unhelpfully spiritualized this side of a ministry life.  “Food?  Rest?  Very kind of you, I’m sure, but those won’t be necessary.  All I need is whiffs of the Spirit!” spoken in saccharine tones.

That’s absurdity, and it comes uncomfortably close to Manichean heresy.  And if it begins to sound plausible, let alone laudable, could we please step outside for a moment and take a deep breath of fresh air to clear our befuddled heads?  We must approach this with common sense based on the truth of how God designed human beings to function best, physically, mentally, and emotionally, as well as spiritually.

I thought of a simple idea this past spring that was helpful for me; maybe you would like to try it. I’d been thinking through the things we’ve discovered to be necessary for my overall well-being, either by being restorative or energizing, that I struggle to implement.  I made a list of the ten top items, rated each one on how well I was doing in that area on a scale of one to ten, then added up the ten sums to find the total.

The ten essentials for me, without which I suffer, are the following (in alphabetical order):

Adequate food and water
Authentic connection with people I love and trust
Brisk walking outdoors
Creating meaningful beauty, especially singing, homemaking, writing, and drawing
Drinking in beauty, especially music, nature, and art
Reading that stretches me and makes me think
Silence and solitude
Sleep and rest
Sufficient time with God
Teaching history to my children

My total this past spring (before Laura began working, I began rising at five each school morning, and we went from zero to ten regular monthly appointments) was 55 out of a possible 100. Right now, it’s at 34.  When Tommy was in our family, my total would have been under 10.  That’s insanity.  This isn’t a sprint, it’s a marathon, friends!  I’m not helping anyone around me if I splatter myself into the wall.  The goal must be a healthy and sustainable balance, making this life actually livable for the long run.

Notice I didn’t include helping others, tidying, planning, or organizing, although they are certainly essential to the life God’s called me to live.  I left them off my list because they’re my natural default and are demanded of me nearly all my waking hours.  They’re so very demanding that if we didn’t take deliberate steps, they would swallow all of life, yea, even the eating and drinking.

I’m doing badly in the Brisk Walking Outdoors area; in fact, it’s essentially been a big, fat zero for a long time.  I can see at age forty-five that I will have to address this lack at some point, so it’s coming, just not here yet.  I hate “artificial” types of exercise and I love walking, so I know that to be sustainable, exercise for me will have to be walking outdoors.

This list will vary somewhat from person to person, of course, and some items on the list outweigh others.  For a good number of my caregiver mom friends, exercise is their restorative agent of choice.  For some, it’s gardening.

I’m an intensely relational person. And I’m intensely attuned to beauty.  Those two things haven’t changed just because God called us to live our life on the far side of crazy!  But how can this possibly work amidst the demands of my life?  Despite the difficulties and the necessary sacrifices, Joe and I reject the idea that I’m a helpless martyr to my circumstances, and we are committed to making opportunities in each season to address my needs.

Back in the spring, Joe and I attended a Sunday evening concert of the Lancaster Chorale, in which they sang Vivaldi’s Gloria and Beethoven’s Choral Fantasy in their entirety, among other pieces.  Aching tears for the utter truth and beauty were wrung from my soul, and the passionate desire to sing again awoke within me.  I had sung such pieces beginning in my early teen years, but singing had lain forgotten inside me for over twenty years.  Thanks to the support of a few family members, my desire became a reality this fall as I rehearsed and sang the fall concert with the Chorale.  My voice isn’t great, but I can read music and sing on key, and there are no auditions required.  Joe was able to come and sing when he was free and willingly stayed home to care for the children when the others weren’t available.  It’s perfect.  Someone else organizes logistics; we just show up willing to learn how to sing the music.  I love spending time with older women and hearing their stories.  At the same time, it allows me to be comfortably lost in a large group and enjoy a complete break from the negative feedback and other stressful interactions that are part of my daily life.  I sing all throughout the day anyway, this just gives direction to my singing.  We get to dress up for the concert, which just adds to the fun for this stay-at-home mom.  And singing of this caliber allows me to fully be the intensely passionate, hard-working and purist person God created me to be without scaring or annoying any innocent bystanders.  Singing beautiful music has gone down into the cracked and dried places in my soul and filled them to overflowing.  See what a good gift this has been!  And it wouldn’t happen without commitment and teamwork within our family.  I was so touched that after coming to the concert, all the older kids expressed that I should sing again in the spring.  And Joe and I plan to dig out our Handel’s Messiah scores and make a date night out of a community singalong next month.


I think I was practicing a chorale number here, slightly altered to distract Josie from her stretching…”Lift your leg (I mean LIGHT), lift it high, high in the darkness…”

IMAG1846

 

How about connecting with the people I love and trust?  So many delightful people enrich my life with their friendship!  Five times a year, my wonderful adoptive moms’ group meets at a restaurant on a Sunday afternoon at 2 pm usually until about 9 pm or so.  This group has been meeting for five years now and is such a source of mutual encouragement, it’s like a mini retreat!  I have a weekly night off while Joe reads to the children; typically that is set aside to write, but I sometimes have a friend here for tea or meet a friend elsewhere.  About once a month during the school year, Hero Dad takes seven boys on a field trip for an entire day!  In the past, I’ve used this time to catch up on sizable organizational tasks, but more recently, I invited a friend for tea.  This may sound like a lot of socializing; out of the forty-seven weeks so far this year, I’ve had a friend for tea four times and met one elsewhere six times, if you count the one on the calendar for next week!  None would have happened without creativity, flexibility, and persistence.  Then of course, there’s texting!  Texting must have been designed for caregiver moms.  Within a few minutes’ time, one more real connection can strengthen the loving bond between a friend and me.

So much more could be said; some thoughts will wait for a future post!

But for now, here it is in a nutshell, folks, the reason we are thriving in spite of that unusually demanding lifestyle…

 

The more impossible it is to get rest and restoration, the more important it is to prioritize rest and restoration.

 

Some of you may remember that I was able to be part of the first planning retreat for the new initiative, A Mother’s Rest, back in the spring.  I long to see support spring up around every overburdened, overstretched, overwhelmed primary caregiver for those with extra needs, as long and as often as needed to bring them to a sustainably healthy place, just as we in Lancaster County, Pennsylvania see the Amish community surround every member of its own community who’s facing tough times.  Not one Amish person is left to struggle alone.  Until we get there, I am so grateful for the vision, know-how, energy, and commitment my friend Andrea Roberts is bringing to her new endeavor, A Mother’s Rest!  Andrea knows the need from personal experience, as the mom of Reece, her teenage son with the dual diagnosis of Down syndrome and autism, and she’s also connected with hundreds of families who have adopted children with extra needs through Reece’s Rainbow.

Are you a full time family caregiver?  Please join the official A Mother’s Rest facebook group!  Consider saving and planning to be able to attend one of these respite weekends!  It will be worth it!  If a respite weekend needs to be a longer-term plan, please ask yourself what changes you can make now toward a more balanced and healthy life.

Do you know a full time family caregiver?  Please consider how you could help lighten their load, from checking in with encouragement to taking them a meal to offering to take a few kids for the day.  Look through the A Mother’s Rest website to see what they’re all about and hope to become, and watch the video at the link below.  Please feel free to share these links through social media.

Are you unsure why this is so needed?  Watch the brand new video on the link below and consider becoming part of a new vision of caring for the caregivers among us.  I’m especially pleased at the possibility of a respite inn owned by A Mother’s Rest to be used year-round as needed by caregivers who may find it difficult to coordinate their schedules with group respite events.  The ones who need respite most by definition will find it most difficult to obtain respite. You can help in many ways, from naming A Mother’s Rest as your Amazon Smile charity to purchasing a respite weekend for a caregiver parent or couple you know to donating funds directly to A Mother’s Rest.

Click on the following link to watch the new A Mother’s Rest video:

A Mother’s Rest Charitable Respite Foundation Crowdrise Campaign

 

Coming up next, Life on the far side of crazy…hahahahaha...

 

 

Another question for our care-giving readers!

November 12th, 2017

[Note:  The post below was sent to me as an email, and I am copying it here with the author’s permission.  I will see that she receives all replies both here and on Facebook.  Please always feel free to email me as well!  susanna@theblessingofverity.com  Joe and I definitely noticed that those who make it to church felt comfortable sharing that publicly, while those who can’t attend church typically preferred to share that privately.    

Interestingly, I agree with the writer that if Verity was our only child with special needs, it wouldn’t impact my ability to attend church.  In fact, I highly doubt I’d think of myself as a caregiver.]

Susanna,

Thank you for sharing your heart with all who read your blog. This subject has come up a few times in my circle of friends over the last six months. I have been deeply impacted by the stories of those who are unable to attend church for reasons surrounding their children with special needs.

I am the mother of seven children, one of whom has Down Syndrome. I have had periods when I was unable to attend services due to sicknesses that took a few months to make it through everyone, bed rest and depression. Those times were normally brief however.

Like you, I don’t believe we are required to attend church services to meet with God. But I do know that fellowship with other believers is vital. So, my question to you (and I am asking my other friends who are in similar situations) is:

In what way could the body of Christ serve you during your times of isolation that would allow you to feel blessed and included instead of burdened and/or alone?

I am asking so that our church family can know how to reach out to home-bound caregivers in the future.

Again, thank you for your transparency.
J.

~~~~~~~~~~~~~~

Look carefully at this photo of Josie at her therapy center.  Can you spot what’s different?

IMAG1771

 

 

Life, sustained: Part 1

November 4th, 2017

From one adoptive caregiver mom to another…

I’ve been thinking over what you wrote all afternoon and evening. Remember that I have been to hell and back, and my perspective comes from having lived through the worst, so I’m going to speak plainly and not beat around the bush. I hear you about feeling caught between a rock and a hard place. If you make the decision that seems best for one member of your family, that can conflict with what seems best for another member.  You either go mad, or you learn to give and take and do your best to balance it all and leave the responsibility for the results with GOD. You are not going to be able to attain perfection in every area at once.

 

Katie looking at a book appropriately without assistance or prompting! 

IMAG1671

 

I do understand that feeling of drowning in a life that isn’t working, no breathing room to address the current problems before more come piling on, with no end in sight! If it had just affected me, maybe that would have been easier to bear, but when it seems like our parental failures to manage everything in life are negatively impacting our children, I hardly know how to process that, other than to leave the things I can’t control with God and trust that He’s working out what He intends to in our children’s lives as well.  We have seen God put right and heal and redeem situations I felt despairing about during the worst of the worst.  We naturally want our children’s childhoods to match the vision of ideal we carry in our heads, but God’s not interested in that.  He knows exactly what He’s doing in order to prepare our children for the life He has for them.  One of the truths about God that stayed with me through the extremities of anguish is His absolute, unshakable sovereignty over all.

 

Josie laboring diligently over her homework while I make supper.

IMAG1656

 

 

May I say bluntly, from experience, that your greatest need right now may not be for God to zap you with a miracle and make you able to do the impossible without any help from others.  If you keep holding out for that, you might very well die waiting for it.  Plus make your family miserable in the meantime. Your greatest need right now may simply be to accept the help He sends you in order to get your family to a thriving, sustainable place. God’s idea of a solution may look different than what you would order. I’ve learned that the hard way. We now seek out help, and if someone offers to take something off my plate, if it’s at all possible, I say thank you and accept it.  That new habit has helped put our family into a healthy place that’s sustainable for the long term.

There’s another essential for healthy caregiving that I once ignored but is now firmly established in my life.  A topic for another time.

 

Josie and I rise at 5 am on school days; she gets on the bus while it’s still dark outside.  Then I have 18-20 minutes for Katie’s morning routine before she needs to climb into her wheelchair and get onto her bus.     

That’s a pretty nice smile for 6:30 am, sweetheart!

IMAG1662

 

When I’ve observed disability-affected families who are thriving, I notice that they’ve all done the same thing…let go of what they can and do what it takes to keep a support structure in place.  Caregivers who insist on functioning the way I was trying to function eventually crash and burn, and it’s not pretty. Yes, sometimes making one decision will temporarily have a negative effect on another area, but it can be worked on. It’s not forever.  This may be a time when for the sake of the greater good of your family, you feel like you are sacrificing progress temporarily with some individuals in your family. We have had to do the same thing at various times in order to get our whole family to the place where the level of support we are receiving is equal to our level of need.

 

A little Saturday morning music~

IMAG1738

 

 

Joe and I have gotten the sense that for many of us who have welcomed children with disabilities into our families, our focus at the outset was more on becoming parents to children who greatly need them than it was on becoming caregivers to children with great needs.  The practical ramifications of the caregiver side of our role can take us by surprise as they unfold over time.  Add in the effects of trauma, such as abandonment, abuse and/or neglect, and as you know, it can require some intense and complex parenting from us.

 

 

IMAG1742

 

 

Adopting traumatized kids with special needs is hard! It’s always going to be hard in ways we never could possibly have understood before we experienced it. It’s going to impact our families in ways we could not have foreseen.

 

 

IMAG1745

 

 

I have walked this road with enough other friends now to see others also have to come to this place of accepting that special needs adoption has impacted our families in ways that formerly we would have thought were unacceptable. Joe and I saw this powerfully illustrated in the life of Charles Mully.  It takes eyes of faith to see that our “unacceptable” circumstances were chosen for us by God. But the circumstances themselves aren’t nearly as powerful in the lives of our children as how they see us handle those circumstances.  We have learned that our children will pick up on how we are framing things.  Often, they will feel negatively about a situation no matter what our words are, if we truly believe the negative perspective deep down, and they will be pointed to hope in God if they see our hope is truly in Him.

 

IMAG1750

 

The fact that it doesn’t always turn out all peachy the way we had envisioned it doesn’t mean we misheard God or that He has abandoned us, despite how we may feel at the worst of times. It means He led us to take on a very hard job, and now we are feeling and knowing and experiencing the hardness of it. He knows that if our hope and our trust are truly in Him and not in our idea of how things should be going, He can bring about an amazing thing in us and our families in spite of who we are, because of who He is.

 

IMAG1752

 

I’m using lots of words to try to say something much more simple, just because my bedtime has come and gone (and because of my annoying teacher personality)!  I hope my heart comes through, and that I don’t run roughshod over your feelings. Taking a deep breath and sending this with the hope and prayer that it will not cause offense in any way. I love you and care about you, and we are praying for you and your family throughout this very tough time!

 

IMAG1753

 

By faith Moses, when he had grown up, refused to be known as the son of Pharaoh’s daughter. He chose to be mistreated along with the people of God rather than to enjoy the fleeting pleasures of sin. He regarded disgrace for the sake of Christ as of greater value than the treasures of Egypt, because he was looking ahead to his reward. By faith he left Egypt, not fearing the king’s anger; he persevered because he saw him who is invisible.

 

IMAG1758