Where to Begin?

Sweet friends, where to begin? I’m in awe of how many of you have privately written asking how Ruby is doing and how I am doing. I am so very grateful for your love and concern for our beautiful miracle-girl.

Seriously. Only the Lord really knows how much each of your friendships mean to me – I truly treasure you. Thank you all for praying for Ruby (please don’t stop!).

Last week I was talking to Dw about how Ruby is doing and the myriad of emotions I have had. I commented that I wanted to write a blog post but was hesitant because I wasn’t in a good place but was instead crying basically all day long. He encouraged me to write anyway, suggesting that perhaps many of you could probably relate to our situation on some level in your own life.


So now, where to begin? I guess at the beginning and I will attempt to be coherent but heads up – my thoughts are still pretty mumble-jumble.

Sometime ago we had moved Ruby out of our bed and in with Birdie (which was our dining room converted to a bedroom). The only reason we were willing to move her out was because we now had a watch with a seizure detection app on it that she could wear. BUT it did not alarm the night of her stroke/seizure. I’m still trying to wrap my head around that aspect – I mean a seizure app that didn’t alarm? Horrible! And naturally I’ve struggled with some guilt that she was not in our bed where I could feel her begin to seize.

I found her seizing in her bed when I woke up January 20th. We didn’t know how long she had been seizing but could guess, from some realistic indications, that it had been going on for many hours.

Anyway, I will save the painful details, but suffice it to say that from the paramedics arriving at our home, to the days in the PICU and then the step-down unit – it was all truly agony. It was a very dark time in every way for me and it felt like a hellish nightmare.

While in the hospital the neurologist said that he believes Ruby had the stroke first followed by the seizure and that is extremely unlikely that it happened the other way around. So I wonder…what caused the stroke? [They have no idea.] Will it happen again? There was no warning this time.

I’ve mentioned it before, but for years and years Ruby has made us laugh multiple times daily. And truthfully, she is my wee-BFF. I talk to her all day long and she definitely talks to me. No, you wouldn’t understand her because you don’t hang out with her every day. However IF you did and you paused to listen, you would understand her too. She’s smart as a whip and oh my, she’s so comical and loves to instigate a little rousing-fun. She’s definitely one of the rowdiest and funniest of our 14 treasures.

Ruby is also my prayer buddy – we pray and agree together about all kinds of things off and on all day long. She loves to worship too!

So while in the hospital, with Ruby’s future uncertain, I was struggling with it all. At some points I wasn’t even sure if she would live. It was truly terrifying. The only thing I could think to do was to play worship music all day long and all through the night.

Ruby has also always loved to eat and in the hospital she wouldn’t even attempt it. Instead she had lost her ability to swallow and was drooling. Eventually the docs ordered a feeding tube and I’ve now learned to use that. Praise God her drooling has stopped and she is eating some (as well as feeding with the tube).

Being completely honest….with all Ruby had already endured after horrific, unconscionable abuse pre-forever-family, the stroke felt like a very cruel joke. If you have read Rescuing Ruby you understand what precisely I’m talking about.

Pre-stroke Ruby had, by God’s grace, overcome mountains higher than Mt. Everest and now suddenly she has taken a billion steps back. It’s agony for this mama’s soul. Ruby has seemed sad and even frustrated at times that she can’t scoot about or even get herself to a sitting position. Watching her frustration only adds to my sorrow and as I mentioned before, it feels like I’ve been kicked in the gut with steel-toed boots.

Our mentors/close friends checked in on me this past weekend to see how we were all doing. I feel safe telling them anything so I explained all I was feeling, and that as much as I hated to admit it, I felt angry at God. I also told them how guilty I felt for even saying that as I honestly don’t think there has ever been a time in all my life, where I have felt angry at Him. But I admitted it to them. And now I’m admitting it to you. It’s not been pretty.

Their words were so comforting, “Don’t feel condemned for where you are. The Lord is with you there just as much as He is when you’re on the mountain.” I cried hearing that and then I was able to be really honest with the Lord and tell Him how angry I was at Him. After all, He can take it! Besides He already knows what I am thinking and feeling and He still has been so gracious, kind and merciful to me. I asked Him to forgive me for being angry at Him.

First, we live in a very broken world. Second, bad things can happen to precious people who don’t deserve it but He is still good and I can trust Him, no matter what.

Although He could have stopped the stroke, He did not. I can still trust Him. He promises that He will use this for our good and His glory (Romans 8:28). And in the midst of the bad stuff, He is always generously kind, loving, merciful, and caring. All of that has been good to remind myself regularly. I have now come to a place where I can accept the stroke. Of course I will always pray for her complete healing and restoration of all that she has lost.

And friends, I know that I know that I know that it is your prayers that have helped me to navigate all this which have also been used to bring me peace.

Of course I’m human. I struggle just like everyone else. And personally speaking, it is easy to become filled with the fear of losing her. I have had to consciously take every single fearful thought captive (Romans 12:21) and give my fear to the God who not only preserved Ruby in the hot African sun when she was abandoned, but He alone rescued her and there’s no doubt He loves Ruby more than we could ever comprehend.

Another friend reminded me that Ruby is the Lord’s and there is zero I can do to add to her days. Of course I know that, but my friend’s words now prompt me to do this when fear attempts to consume me. I intentionally whisper to the Lord, : “Okay, Lord, you have Ruby’s days numbered and my fear will not add a single minute to what you have planned. Please give me strength and grace to not be overcome with fear but to just enjoy every single day with our miracle-girl.” That prayer has helped to bring me great peace.

Anyway, Ruby is still paralyzed on her left side. She has moved her toes a bit, moved her left leg some and has lifted her left arm up over her head a few times – all of which we wildly celebrate.

Throughout the day we move her left hand to her midline and raise it up so she sees her left hand. They told us that this will help her brain remember that it’s there. We also take her hand and place it on her wheelchair rim and help hand-over-hand move her all over her Make-A-Wish pad in our backyard. We ask her over and over, “Remember how you used to do this?”

Ruby’s PT comes to our home three times each week and she is very encouraging. She thinks Ruby’s amazing (she’s right!) and she is hopeful. Feeding, Speech and Occupational Therapy have either begun or will soon.

Overall Ruby’s spunky self is now starting to peek through almost daily – we are so grateful. A couple of nights ago Ruby was teasing Elizabeth and I but we didn’t know it. Maybe I’ll share sometime, but trust me, she got us so good. We were laughing so hard we couldn’t stop – it felt sooo incredibly good. We contend for more of that!

We praise God for sparing her life and allowing us to have a front row seat in the new work and healing He is doing.

Please continue to pray for her as she comes to mind – full restoration of all abilities and we will give ONLY God all the glory!

7 thoughts on “Where to Begin?

  1. Thank you for your honesty and transparency. Your faith inspires me on a whole different level. My husband is in then hospital with Covid and I needed to read every single word you wrote.

  2. Oh, Linny. We don’t really know each other, but I have followed your story for quite awhile. We are parents to 23 children — 19 of those adopted. You are walking the path that all we parents of children with seizures fear. We hold our breath, praying for the strength to face this path if God ever calls us to walk it. I read this post with tears in my eyes. Praying so much for your heart and for your baby. Thank you for making the time and finding the energy and courage to share your story and your pain and your personal heart-struggles. I know from experiences that those things (time, energy, courage) are always in short supply, and especially so during times like this.

  3. Still praying for little Ruby and your family, expecting another miracle from our miracle-working God. She is so precious to Him and to us. Be strong and courageous! He is very near.

  4. Most important of all, God has allowed you to be a conduit of His merciful love to Ruby. However long and in whatever way He allows her to live, you love her and that is priceless.

  5. Thanks for the update Linny and for being transparent. I couldn’t imagine not feeling those emotionally if I had gone through what you have. And God understands and knows ourselves better than we do. I’m praying for you all and for precious Ruby, for healing and JOY. Your family is often on my mind and in my prayers.

  6. Hi Linny & Dwight

    THANK YOU FOR YOUR HONESTY & TRASPARINSY!!! I write that in upper case letters as a way of shouting it from the roof tops if you will. As Christians, many are quick to quote, “God’s, got this.” as well as scriptures to give support and encouragement. While I deeply appreciate them both, there are moments I just what to scream…BUT IT HURTS SOOOOO MUCH GOD!!!! Just before Christmas 2017 my daughter, Bethany was informed the precious baby girl she was carrying had level 4 spina bifida. Thrust me, I identify to your feelings, the lengthy stay at Ronald McDonald House in Philly. The NICU & PICU stays, the multiple surgeries & every day life with a child on 4 machines, moving several members of our family out of one state to another so Zelda can receive better medical care, the exhaustion yes, the fear but most of all the TOTAL & complete BLESSING of our dear Zelda. She does far more for us than we will ever be able to do for her. Not only is her joy & laughter a gift, but that God chose to work so many things in and out of our lives through this journey is a gift as well. (although sometimes the pain of the refiners fire feels well…you know how it feels.) While I could go on to share many things, all I can say to those reading this is you will never know the strength your prayers bring. Like those holding up Mosses arms for strength in the battle, please never stop praying for us. And never forget we need daily help in this journey. One can never underestimate how far a meal, gift cards or a bag of some paper products can go. Special needs families is a mission field. Serving by cleaning our homes, mowing lawns, allowing us the time with our gifts…means more then you will ever know. By the way Linny, I am a former fellow Amherst Baptist member. Thank God for Pastor & Mrs. Porter’s faithful investment in our lives. It really helped prepare us for this call. Know you are in prayers & I wish we were in the same town so I could help in a physical way.

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>