I am Leah and I am a mom to a Pediatric Stroke Survivor. Purple has always been my favorite color since I was a little girl, today, it is my favorite color because it is the awareness color for a variety of neurological disorders – including the wide variety of issues that can result from a childhood stroke.
In the past year I have written and journaled life with our son – I will share bits and pieces of those writings with you today.
Hot August night, the prognosis is grim
In man’s understanding the “chances” are slim
Covered in prayer, God was with him there,
in the darkness of the womb,
in his struggle for life –
Nobody knew what God would do
Give it to Him – He would see it through
Baby boy born limp and cold
Didn’t know what the future would hold
Crying, praying, submitting it all
Trusting in the Lord for the impossible
Waiting, trusting, God was there
He gave us peace only He could give
Wondering and waiting, would baby live?
Tubes, machines, and sweet whispers in his ear
stroking his head, God was still near
“Jesus Loves Me” mom and dad daily sang to their son
Believing in God to continue the work He had begun
Healing, first cries, and breaths on his own
“your baby lives” the doctors told
A miracle God has performed
He chose Isaac to stay with us longer
Through it all God has made this family stronger!
Glory to You Jesus!
“for You formed my inward parts; You covered me in my mother’s womb. I will praise You, for I am fearfully and wonderfully made. Marvelous are Your works, and that my soul knows very well…and in Your book they all were written the days fashioned for me, when as yet there were none of them.” Psalm 139:13-16
This is our story of Isaac – his life began still inside the womb lacking oxygen, suffering a stroke, lungs filled with meconium, fighting for life. Seizures at birth, ventilator in the NICU, struggling to learn to suck a bottle… a beginning of a life of exercising perseverance for the common things that come so naturally to others. Isaac is 10 years old today!
So back to Purple…Purple represents strength, perseverance, determination, fight, for pediatric stroke survivors. When the brain has been injured it can affect many areas of a person’s life. I stand in AWE of the sweet, content, and well rounded young man he is – in spite of the fact that in most daily things-communication, school, focus, relationships, physical activities, – he rarely shows on the outside the great effort his brain is exercising to accomplish these tasks. Last year at age 9, he was diagnosed with a Global processing disorder, ADD, anxiety, learning disabilities. Report from the nuero phsychologist…”your sons right side of his brain took a good beating. I have never seen such slow processing in a child. I am really amazed that he is not an angry kid, keep doing what you are doing” Those words were hard to hear but also a gift to me. You see we have home schooled Isaac and his 8 year old brother from the beginning. Not by our plan, but God’s plan. At age 3 1/2, three speech pathologists from public and private insitutions strongly persuaded us that he needed to be in speech therapy and most likely for most of his childhood. In fact one pleaded with me to reconsider when I declined to send him off to preschool. “we are very concerned about your son”. As Christians , we took a step of faith trusting God in the conviction to not send him “we were, as his parents very concerned about our son”. This began speech therapy 101 in the Sellars home. We met him where he was at, saturated him in love, simplified his life to accomodate him, and watched his younger very verbal non stop talking little brother and him learn together. Still not easy, I would worry when I saw the light turned off in him. One day the light was on the next day a disconnect. I am grateful for my husband, who believed in my abilities to do this & would encourage me to keep going. I would panic, but I always went back to God’s promises and found peace. “You will seek me and find me when you seek me with all your heart.” Jeremiah 29:13 As he approached 9 he had come along way. Might I add he communicates quite well – Praise be to God for “nothing is impossible with God.” Luke 1:37. But there was still much that baffled me I just didn’t understand. “Call to me and I will answer you and tell you great and unsearchable things you do not know” Jeremiah 33:3 Through his diagnosis it brought new undertanding and helped us work through new issues that were arising. There’s that anxiety and anger they warned us about. His character has never been these things, but this past spring and summer I saw anxiety in Isaac at a level I hadn’t seen before – His moments of meltdowns were getting more intense with anger and inner depression & sadness. “keep doing what you are doing the psychologist said”. Using practical coping skills along with the Word of God, and prayer we took every opportunity to “train up our child in the way he should go” Proverbs 22:6.
WE continue to see God’s work in Isaac. He is learning to mangage his emotions much more effectively, learning how to recognize how he feels and what he needs on his own, how to verbalize it all, making more changes and accomodations on his own, using those coping skills. Sticky notes for reminders because he knows he forgets easily, making lists, as well as removing himself from situations when the noise is too much. And he let me know recently that any kind of school work needs to be done in pure quietness because “that chair that just scooted across the floor really “messed me up”.
He has many strengths – with an amazing attitude of wanting to do well. A great swimmer, loves to play ball with dad and brother and well yes, even his mama. Most important of all, He is getting to know God. And yes, he understand he is a sinner in need of a Savior. “for God so loved the world He gave His only son, that whoever believes in Him will not perish but have everlasting life” John 3:16. He understands that “apart from God He can do nothing” John 15:5, and that God has given him breath and life. He knows the promise of eternal life with God, accepting His son Jesus Who died in his place for his sins, and he knows the power of God – the power that raised Jesus from the dead, and by that same power God brought healing to his own life. “in 30 years of delivering sick babies in this condition, I’ve only seen 2 live, one other baby and your son” the doctor said.
We see the beauty the Lord is bringing about not only in Isaac, but as for me as a mom, God has taught me things and grown me in a way I never would have, had I not had this child in our life. It is making each member of this family into the people He created and planned for us to be as well. I was recently reminded by the Lord of perspective, as I was finding myself dreading the recent addition to our schedule of in an home brain integration therapy I do with him. You know those weary days. I was reminded what Jesus did for me on the cross, the example of the time here on earth as God Almighty, humbled Himself and gave His life for others – my attitude quickly turned to gratitude and thanksgiving and ready to serve with gladness as I humbly serve and minister to our son. And oh how God gives us joy in it – last night as I felt spent and began our brain training, one of those moments when I was so tired and everything seemed funny -we both ended up laughing so hard our stomachs hurt. Memories we’ll have forever.
I have spent so much effort and almost exhausted myself trying to explain Isaac to others – God has truly blessed me in this past year with amazing connections with other moms and kids who have special needs. We have friendships we never would have made, an awareness and understanding, and grace for others we would not have ever had back and forth to share with one another.
Isaac is considered a special needs child. Having a special needs child often means not fitting into the world and it’s man made systems. This was once an area of hurt for me, however turning my thoughts back to the Lord I am given a greater perspective, an eternally, Kingdom minded perspective on what really matters in His eyes. “we are not to be conformed to this world..” Romans 12:2. God works all things together for His good, using Isaac’s life once again to refine me in letting go of this world and it’s way of thinking, and looking onward to the eternal hope in Him! “One day our children will walk the new earth with our Creator, Lord and King, and there will be no division and it will be the way God intended it to be forever. “He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. All these things are gone forever.” Revelations 21:4
I will end with this. “pour out your heart like water before the face of the Lord. Lift your hands toward Him for the life of your young children.” Lamentations 2:19