Grace

Katherine Emilija (Emilia) Ashley, was born on August 15, 1997 in Chattanooga, TN. Only two years later she was born in her Mommy’s and Daddy’s hearts. When we signed up to be foster parents, she was the first baby offered to us. When she was taken in the state’s custody, she only weighed 11lbs and could fit in the palm of her Daddy’s hand. As soon as we laid our eyes on her, we were in love. Ah, yes, we were told she was severely neglected (it wasn’t hard to see), we were told she is a special needs child, she will never walk, talk, see, or follow commands. We were told she has severe brain damage, cerebral palsy, extreme spasticity, hydrocephalus with a shunt, and she suffered from seizures. No, we didn’t understand what each of the diagnoses meant; we just wanted to take her home, love her, and take care of her. We had days to prepare, with no baby shower, and a very little or no family support. Our family lived far away and several advised us against taking her. And so, it happened. We became parents overnight. The next year of our lives with our precious Katherine, was a roller-coaster ride. She cried a lot and refused to be comforted. She refused to take the bottle (and couldn’t eat with the spoon). When she finally took her formula, it would take over an hour to feed her, with many pauses and attempts to burp her, but only minutes later to see her projectile vomit everything. We were frequently cleaning walls, her crib, the floors, and often our faces, glasses, and hair… When she got her first seizure, my knees weakened and I panicked, I thought she was dying. She slept very little and cried until she would turn purple in her face, her hair would become wet, and her outfits would need to be

changed. Sometimes we simply cried with her, as we didn’t know how to help, and we prayed a lot…

The first year she was with us, we can count on one hand (and not use all the fingers), how many nights we slept. At the local T.C. Thompson’s children’s hospital, they called us frequent fliers, and always tried to give us the best room as she never stayed there without both or one of us. The ambulance was very familiar with our house. We visited many specialists, ran tests, scans, labs, MRI’s. We had 2 helicopter rides from Cleveland to the children’s hospital in Chattanooga because her seizures sometimes lasted an hour. And then, surgeries followed. Fundoplication surgery, G-tube (feedings via stomach), multiple shunt revisions, including shunt infection surgery. We stayed many nights in the emergency rooms, ICU’s and regular hospital rooms. We watched our new baby being poked, cut on, with staples on her head, and long healing journeys. She took it all like a champion! As soon as she could, she smiled and with each smile, she would melt our hearts and brighten the room… God put a deep love in our hearts for her, and yes, our journey was hard, but we have not once regrated taking our sweet angel. Even though family support was scarce, Pastor Jerry and Karen were always there for us and her.

Finally, our darling Katherine became stable, and thrived. We were able to take trips to Indiana to visit grandparents, to KY to visit parents, we had Florida vacations, we even flew to Germany together. Everyone who met Katherine felt an immediate connection and showed her affection. She was sweet, affectionate, loved to listen to her music, she loved to hear her daddy play the guitar and sing to her. She loved to snuggle with her mommy, enjoyed to be kissed on the cheek. She loved when people talked to her.

Katherine’s life had a purpose and a mission, and she fulfilled it! Her mission was to share love and raise her parents. The first was easy, the other, was a much harder one, and it took a lot longer...

Today we want to honor Katherine’s life and give God the glory and thanks! We could feel His hand of protection and His grace throughout the entire journey. God granted us time with our beloved angel for nearly 26 of her nearly 28 years on this earth.

Katherine developed a rattle in her chest a little over a year ago. We were concerned and made multiple visits to her primary care doctor. Every one of her regular specialists who saw her (neurologist, gastroenterologist, allergist and others) listened to her lungs and requested an X- ray. She had 5 of those in the last few months, and they all came back clear. She was constantly treated with antihistamines and we did a lot of suctioning of her mouth and nose. She became a bit puffed up, but everyone assumed it was weight gain. The last few months the suctioning became deeper, more intense, and her breathing more difficult. We stayed on the phone with the doctors. In our last doctor’s visit, I told her doctor that I am no longer asking, but SCREAMING for help. I shared that her oxygen was dropping and we were only able to keep her in her wheelchair for short periods of time. The only thing that helped raise her oxygen was if we laid her on her side. Still, no one seemed alarmed. We asked to be referred to pulmonologist, but got an appointment for August. We were worried and confused.

This past week, we decided to pack the hospital bag, we gave Katherine a shower, placed her in the chair, and as soon as her oxygen started to drop, we called 911. We thought they would help bring the oxygen up and send us home. Little did we, or any of her doctors, know that our darling Katherine had been gradually dying for a long time. She spent the night in the ER with many tests being done, followed by 2 nights in the medical Intensive Care Unit. As soon as we learned that her condition of neuro restrictive lung disease was irreversible, we asked to take our baby home with the support of hospice. They provided us with an oxygen machine, morphine, and we were visited several times by the hospice nurse. Katherine lived only 2 more days.

Two months ago, I had a nudge to leave my job of almost 20 years. It was hard, but I did. Now I thank God for pushing me to do that, so I could spend more precious moments with my girl. That was grace! It was also His amazing grace that we didn’t know she was dying for a long time, so we were allowed to live normal lives without worry. Our princess didn’t have to suffer long, that was grace! She passed away at home, surrounded by the ones who loved her the most, and that was grace! She didn’t die in the cold ICU, connected to multiple instruments and masks, catheters and needles, that was grace! Our loss is extremely painful; however, God is giving us peace that surpasses all understanding, and that is GRACE!

Though Katherine never spoke a word, there are lessons she taught us: be quick to forgive, you don’t need things to be happy, love deeply, and be kind to everyone! She was an excellent listener too. Katherine, being totally disabled couldn’t “do” anything for anyone, yet, God put so much love in our hearts for her, and with that God taught us that HE loves us regardless of our inabilities.

Today our hearts are broken. Our love for our sweet daughter runs very deep and our grief feels even deeper. We are not sure how we will do life without Katherine. We are also deeply grateful that God chose us to be her parents. It was the biggest honor and accomplishment of our lives. We are thankful for all the support of many medical staff, family members, our pastors, church family, and all who loved our princess.

When Jesus comes again, we know we will see her again in a perfect body! No more pain, no more wheelchair, no more crying or shortness of breath. We can’t wait for her to talk our ears off and to see her smile again. Jesus promised to wipe ALL our tears away and that He will give us reasons to praise Him, throughout all eternity! All Glory and praise go to our Heavenly Father.