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.

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

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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! 

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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.

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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!

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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~

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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.

 

 

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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.

 

 

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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.

 

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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.

 

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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!

 

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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.

 

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There is freedom.

November 3rd, 2017

To every dear reader who responded to my recent questions by commenting here, and to the many who emailed me privately, thank you.

It is so humbling to know that you took time you really didn’t have and made yourselves vulnerable in order to add to this conversation.  We are honored by the confidences that you shared.  By opening your experiences, struggles, and thoughts to us, you have given us valuable help to sort through and clarify our own thinking.  I’m slowly working my way down through your emails and answering them (with time I also don’t have, so please forgive the delay).

We appreciated the practical suggestions that we figure out the logistics to enable me to listen to the recorded sermons of our pastor.  How had we not thought of that in all these years?

A few of you who responded are attending church regularly.  Interestingly, there is a significant proportion of pastor’s wives in this group.  We heard comments ranging from the mild, “Sunday is not at all a day of rest for me,” to the blunt, “I hate Sundays.”  Some of you stated that if you didn’t get a break from caregiving during the worship service, it wouldn’t be worth the effort to get there.  Some of you simply feel it’s your duty to God and/or to your children.  It’s how you were raised, and you feel it’s important for your children to see you get to church no matter what.  The following quote was typical for the majority of this group of folks.  “I got to church today by working like a crazed woman.  We go and come home and I crash.  The rest of the day is me out of commission.”

Most of the rest of you fell into one of two categories.

Many of you stay home from church when getting there and being there is stressful, exhausting and burdensome (some have been in this place for years) and have come to peaceful terms with that. “I used to feel guilty about it but do not at all anymore. Our life is not our own. God has built our home, and it will stand on Him and for Him. Our life is structured by God and not typical in any way. Absolutely nothing in my life is normal in any way.”

Or you (like me) have been making sporadic attempts anyway and wrestling with emotions such as loneliness/isolation, failure/guilt, and feeling judged by others.  “We haven’t been to church in months, although I am struggling with the right thing to do.”

As we read your stories, we often had to stop and remark, “It should not be like this,” or, “Something is really wrong with this picture.”  When we teased out the gist of what bothered us most, it went back to legalism every time.  Every time. Very telling.

We are concluding that legalism from within and without has been the crushing weight on my spirit at being unable to attend church.  It is the desire of my heart that those of us who are distressed over this issue learn to walk in life and freedom in the Spirit on Sundays, however He leads each of us.

For now, it is needful for me to rest in Him on Sundays as a home-bound caregiver.

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Jesus replied, “And you experts in the law [legalists?], woe to you, because you load people down with burdens they can hardly carry, and you yourselves will not lift one finger to help them.

For the letter kills, but the Spirit gives life.  

Now the Lord is the Spirit; and where the Spirit of the Lord is, there is freedom.