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! 



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.




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!



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~




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.






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.






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.




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.




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!




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.








Share it!

5 Responses to “Life, sustained: Part 1”

  1. Rachel says:

    Susanna. I love you. Thank you for sharing. Our lives were definitely changed in ways we never anticipated and the walk has indeed been harder and different in ways we didn’t prepare for. Learning to have faith when it’s hard has been a process. I’m grateful to be walking this road “with you” rather than alone.

  2. Jeannie says:

    Thank you, Susanna. ♡

  3. Tami says:

    Amen. How I struggle with the concept that my version of “acceptable” is far different from God’s. This road is definitely a trying ground for faith… I couldn’t have spoken the above truth better myself, and relate to every single sentence. At times currently, my faith feels like just this: “God, I am trusting You to keep hold of me and not let me slip away, when doubt washes over me and I can’t hold on anymore – trusting You to not let go of me when I can no longer hold on to You.” Sigh. He is a great God who does great things, but definitely not according to our plans or vision; His workings go far beyond our understanding and our comfort zone. It is a struggle often to continue to accept His plan, especially when there are seemingly “unacceptable” consequences. I am learning how very weak I am (I’ve always identified as strong and independent, so it is a bitter recognition to me). It feels terrible, but truly that is where His strength is made perfect. It so much messier than the story I would write, but if I’ve learned anything these last few years it’s how very little I really know or understand anything. May God bless us all to be honoring to Him when all is said and done, despite our weaknesses and struggles and failures. May He hold us safe in His hand.

  4. Cassandra says:

    I can’t imagine how your post could offend anybody. Chiefly because it is your version of your truth. Since it’s your blog, I expect to read things from that perspective :).

    It is so painfully true that humbling ourselves to accept help is our best shot at living our best life. (Whatever that looks like to somebody ). It still pains me every single time, when the tutor says something like, “Today I showed your child the easy way to do ____________.” As if I hadn’t preached that same thing for ten years in ten thousand different ways. Ugh. It is so tempting to be defensive and explain what we’ve done but I’m working on not feeling the need to explain myself when my answer is no or when somebody doesn’t agree with me or when I feel misunderstood. It’s not easy!

  5. Kris says:

    “But the circumstances themselves aren’t nearly as powerful in the lives of our children as how they see us handle those circumstances.”


RSS feed for comments on this post. And trackBack URL.

Leave a Reply