Thursday, March 3, 2011

Seth's Story

"Most of the shadows of this life are caused by our standing in our own sunshine"
~Ralph Waldo Emerson

On June 22, 2009, a big, beautiful red headed boy came into this cold, harsh world. It was an easy delivery, a fast (and natural!) event - after so many months of waiting, we welcomed 9 pound 1 ounce Seth John Asher with happy, loving arms! Seth was perfect. He cried, he was pink, he ate well and slept well. He was such a blessing and a gift! Our daughter, Sydney, now had a baby brother, and we had a son! After a few very rough weeks for our family, we finally had our precious, beautiful boy...and for a moment, all was right with the world.

On June 23, 2009, roughly 18 hours after his birth, Seth was whisked away to the newborn nursery with what the nurse called "delayed breathing". Shortly after that, he was taken to the NICU with low O2 levels. Seth was placed on oxygen, and at this time it was discovered he had an enlarged liver & spleen. All they could tell us was that it meant he was fighting some sort of infection. "Do you have cats?" became a popular question. No, we dont have cats. Please dont ask us that anymore.

June 24th-25th were spent testing. Bloodwork, urine, MRI, ultrasounds - Friday, the 26th, Seth had an MRI of his brain, where they discovered extensive calcifications. We were told this was indicative of him having contracted CMV in utero. CMV? We had never even heard of it. By Saturday, the results were in and Seth was officially diagnosed with congenital human cytomegalovirus. Congenital means "born with". cCMV. Our son had contracted a virus while still in the safety of the womb, a virus that had ravaged his small body...and we never even had a clue.

The list of "abnormal" was long. Seth had breathing issues, low platelets, enlarged liver & spleen, severe kidney reflux, two holes in his heart & extensive brain calcifications, as well as a small cerebrum & cerebellum and underdeveloped optic nerve in his left eye. His prognosis was mixed. One doctor said he may have some learning disabilities, one said he would never be anything close to "normal". He spent 11 days in the NICU and then we took him a world of fear, anxiety, guilt, sadness, wonder. Google became our best friend as well as our biggest enemy. We couldnt understand it - here was this horrible virus that can wreak so much havoc on an unborn baby, and we had never even heard of it!? And what would this mean for our precious boy, what would his future hold? We wanted to believe cCMV would not define our son, that cCMV would not define his life. We still believe that.

Today, Seth is a joy. Each day is a gift, and we are so thankful for his presence in our lives. It's been a hard 20 months, and it has flown by. Seth has had multiple surgeries - two for the kidney reflux as well as placement of ear tubes. He has had a total of 11 urinary tract infections. He has been diagnosed with mixed cerebral palsy, optic nerve hypoplasia and cortical vision impairment. He is legally blind.

Seth has been dealing with infantile spasms - or West Syndrome - for a little over a year now. He has been on every medication possible in an attempt to control his seizures. Ninety-eight percent of the time, this particular seizure disorder will develop into another kind of seizure disorder. We are prepared for a life of seizure medications for Seth. It's hard to watch him spasm, it's hard to wake up in the morning to find blood on his sheets and his clothes, and know he bit something during a nighttime seizure. Sometimes, it's scary too. There are so many things we cannot fix, so many things we have to simply watch our boy go through. We love him and yet we cant "fix" him, no matter how much we want to. We cant take his pain and make it our own, we cant give him our eyes with which to see the world or our legs with which to walk. That just wasnt meant to be.

Seth has physical, occupational, feeding and speech therapies once a week. He rolls over both ways, claps, plays with toys. He laughs, babbles, responds to touch & the sound of our voices. He has perfect hearing - supersonic, we call it - and we are so thankful for that. We are working on getting him to sit up and to crawl, as well as eat solid foods. We have watched him gradually but continuously fall off the charts in weight....our once roly poly big guy is now quite skinny, he doesnt have any extra chub to spare anymore. But he's still beautiful. He's still precious. He still an amazing, wonderful gift from God.

God is bigger than CMV. He is bigger than seizures, CVI, kidney reflux. We know that with one wave of his mighty hand he could heal our baby. We pray that he would, but we know that God's plan for Seth's life is so much bigger than anything we could dream of. We are just thankful that he has seen fit to choose us for Seth...that we get to share our lives with this incredible boy.

"But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore, I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me".
~ 2 Corinthians 12:9

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