Do you ever wish that your favorite people from all over the world could all live on the same street as you?! No? Ok, well, I’m weird and I do. And, Kerri would be my next door neighbor…and she would make me the “glow bars” recipe that she’s posted below…
This week’s guest post comes to you from one of my favorite people EVER. And yes, I truly wish we lived close by, but for now it’s hours apart. At one point though, my childhood camp friend, Kerri and I lived in quite close proximity – one room over! She boarded with my family while she attended college in my home town. It was there we got up close and personal. I can remember us having chats about our current budding relationships with boys (who are now our husbands). I can remember her reading over scripts with me and helping me learn my lines for a play I was in. I can remember wishing I was as cool as her, and loving the fact that she felt like my older sis. Our friendship is still going many years later, and we now have families and ministries to show for all the years, and we both have books in the works! Kerri’s writings tell of God’s faithfulness, and the hope that He extends in times of great darkness. When Kerri first sent this entry to me, it indeed was the “sliver of hope” that I needed at the time. I hope that you are encouraged as well, as you read, and are reminded that “The Overcomer” isn’t done with you yet…
Sliver of Light
Julia is our first born of our three children. She was a beautiful baby with a cute turned up nose, sweet dimple and infectious laughing eyes. She had been labelled to have “personality plus” by one of my mom’s friends. Julia was a brave little girl, daring to climb tall ladders and swing super high on my parent’s tree swing. Her personality began to change when she began to struggle with Infantile Spasms. Thinking back to this time is difficult. The feelings, the emotions, the knot in my stomach all returns. Infantile Spasms, one of the most difficult forms of epilepsy to get under control, took over Julia’s brain and also her petite toddler body. Permanent damage began to disable her brain. Eventually after different rounds of meds and a steroid treatment, her seizures stopped just before her third birthday. This was a chance of rebuilding, she was now able to be potty-trained, relearn how to speak, learn how to read, write and understand us again. She was clear of seizure activity and her brain was now able to retain information, it was awesome.
After four years of rebuilding her brain and being seizure free, new seizures appeared. This time, these were myoclonic, and complex partial seizures, along with constant seizure activity in her sleep, not allowing her to get to the REM state. With Julia not able to get a deep sleep, her brain could not retain the information that she was learning at school. Her development became even more stunted and strained. After several years of different meds, EEGs and neurologists, it was decided that her best option of becoming close to seizure free would be to have brain surgery. The portions of her brain that the seizures were coming from were going to be removed. The resection removed a portion of her brain that controlled the left side of her vision. Anxiety and nervousness invaded Julia’s thought process and the once outgoing child became withdrawn and quiet. Immediately, her seizure activity lessened and she was able to think more clearly and sleep more deeply. Julia has only had two seizures in the last six years, which is amazing since she was having hundreds a day initially. Since her seizures are contained with her medication, the surgery is considered a success.
Small steps have been made regarding her comprehension and academics, though the mathematical strain of education does not seem to want to make itself clear to her yet, and she continually struggles. Julia is developmentally delayed and academics will always be a struggle for her, but she has the sweetest, softest spirit. Julia is kind, loving and has a way with children and animals. Her sweet demeanour seems to put them at ease.
As we have begun the process of transitioning her from being a child to becoming an “adult” (she will be 18 years of age Feb 2018), new questions and unknowns have landed in our thoughts. What is she going to do? Should she go to college? Will she ever drive (she desperately wants to, but what about her lack of vision, her lack of understanding and the fact that she just had a seizure last month, which now puts it off for at least another year). Can she live on her own? These thoughts of doubt can hold my thoughts captive for days.
When this all began, back when she was a toddler, I struggled with nervous breakdowns every other day and depression. The thought of my daughter living a life that I did not expect her to live was difficult to grapple with. Not understanding why things happen and not being able to control things, can drive a person far away from Jesus. The misunderstandings and helplessness can also bring a person closer to Jesus. To be held, comforted and to accept the fact that we will not always understand is alright. I get overwhelmed when I know Julia feels angry and sad, but there is a hope. There is a hope that Julia is not forgotten. There is a hope that Julia has a future, “For I know the plans I have for you, plans to prosper you and not to harm you, plans to give you hope and a future” Jeremiah 29:11. There is a hope that God has not finished her story. I hold onto this hope dearly.
Imagine a long and very dark hallway. In the far distance there is a small, but bright sliver of light. This light draws you in, it pulls you towards it. You walk carefully, but with purpose towards that sliver of light. That sliver of light is hope. Hope draws you in and gives you a direction. Hope keeps you moving forward even when you do not think you can. Hope pushes you on to the next purpose. This hope is Jesus. I will continue to hold onto my sliver of light. I do not know what the future holds for our dear Julia, but I know it will be full of light.
Deep in the depths of my spirit, I know that he will use us, Julia, and our situation for His glory, somehow. So, day by day, I will continue to place my trust, my hope and my prayers in Jesus.
“I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world.” John 16:33.
Here are Kerri and I at a concert (circa 1995) that her brother and my (now) husband were playing together. Yes, we were “groupies” :). Below, Kerri is pictured with all of her current groupies – her husband Jeff, and children, Julia (far right), Reagan and Tate.
© 2023 Danielle Macaulay