i should be folding clothes. i should be wrapping gifts. but i have to pause for a moment of reflection and thanksgiving- because tomorrow, Jude turns 5! this miracle boy- given to me three times over- has reached five. it's such a long story- a story that needs to be told- - a story of the layers of God's grace- a story of olde-timey miracle- a story of prayer -a story of me finding God- a story of a life begun- and an old soul born.
samuel jude came to us after four years of infertility and struggle, and there could be volumes written on this chapter of sadness and growth. he came to us after years of needles and hormones and hopes and disappointments. after doctors and ultrasounds and discussions of risks and benefits, and a miscarriage and one last cycle before IVF. then, there it was -2 pink lines- in the magnolia room of an atlanta hotel. oh the JOY! the first time i was given him.
and then at the 20 week ultrasound- i sat on the other side of giving bad news- and in that quiet dark room, time froze and the air was felt and his tommy bahama tie will be forever in my memory as he told us with his head down that the brain of our boy was no good. there was hydrocephalus- too much water on the brain- his head was big, his brain was thin and some of it missing. this was bad, he said, very bad. we needed to make decisions- he would be handicapped- we should abort.
heaviness set in deeply- like wearing lead. i don't remember getting home that day- or breathing much- just feeling his legs kick and his body moving- and feeling alone. mike couldn't touch my stomach for several days. he couldn't go there. the next morning i woke up, a bit confused, and then i remembered what was happening, i reached for mike and started to cry- again.
"dare you to move, dare you to move, dare you to lift yourself up off the floor- "
i had a dream the next night. there was a young doctor talking to me - he had kind eyes- he was Jesus.
i said to him, i can't handle this-
he said, you have no idea what you can handle
i said, i don't want this-
and he just said- i know.
and put his arms around me and we cried.
i woke up and was at peace
i cried everywhere i went- how could this seriously be happening?- are you kidding me? we've been waiting four years for this child- you want me to abort him? he's been moving for 4 weeks? for me there was no decision. he was mine - i loved him, no matter what. then some good news came- i had an MRI- his brain was whole and looked good- now it was just too much water- they couldn't be sure he'd be normal- they couldn't guarantee. i didn't want a guarantee or a warranty, i just wanted to be left alone to have my baby. i didn't want the long faces of every OB i saw- i didn't want their pity or their concern or their sorrow- or their confusion over our decision to keep our son- i wanted them to share the joy of my pregnancy- i wanted to be treated with the same enthusiasm that i had about our son. thank God for judith bishop our midwife. she made me feel normal. she put it back in perspective. the choice had been make- and she was OK with hoping for the best. after convincing the perinatalogist that we could try labor instead of a c-section- i was induced at 38.5 weeks and on March 9, 2005- samuel jude reid entered the world with his eyes wide open, ready to eat. he was beautiful. he was perfect. he was stable. i had been ready for anything, emergency surgery, a horrific - distorted child- but there he was- wide eyed and hungry- an old soul. that was the second time he was given to me.
a few weeks later he went for his first MRI outside the womb. he was put to sleep and swallowed by that giant magnet. the purpose was to see his brain, and to try to understand why he had so much fluid. i broke up this experience which we had about 10 times in the first 2 years of life, in to 7 bite sized pieces. first getting him to stop nursing 6 hours before the scan- trying to comfort a child who knows you're there with your milk leaking everywhere and denying him food. then the anesthesia- watching your tiny baby go limp and be taken away with needles and oxygen. then the hour away from him, knowing he's deep inside a magnet- and feeling like your own heart has been removed and is being examined, only perhaps worse than that. then the recovery phase after anesthesia- that awful, unbaby smell of OR gases and tape, and the unnaturally cold feeling of a baby who's been lying limp on a hard table with nothing but a sheet for an hour. the next piece is the waiting. waiting for the results of this test- which was always for us on a friday, waiting until monday- like easter weekend- Jesus in the tomb. and finally the last bit, getting the news.
Samuel means "because i asked the Lord for him". Jude means "praise God". for the first three months of his life, we called him sam.
when he was 6 weeks old, after his third MRI, we got some really bad news- over the phone. we knew after the first scan, that there was some "mass" in his brain that looked like it had caused the build up of fluid. i was in nursing la-la land with a thriving, smiling little boy, and basically felt like mass, shmass, if it's not bad, i don't need to worry about it. but the doctors were not so at ease. on the third MRI, the mass began to look concerning, it was also bigger. they wanted blood work to look for tumor markers. the blood came back- the tumor markers were high- really high. this was bad- really bad. it looked like a malignant teratoma- it would take over his brain- it would kill him- there was nothing they could do- surgery wouldn't help- chemo wouldn't help- it would be about 6 months.
the world stopped. i was home alone with zoe and sam- i called my sister to come get zoe. i called mike to come home- and i fell to bits. i cried like i'd never cried before, i cried out all the salt in my body until my eyes stung so badly i couldn't see. i forgot to breath- i was just milk and tears. and there was sam- grinning at me.
good friends and family came and called and cried and helped. they brought chicken with olives and dessert. they cried too. mostly they just were there, on the phone or at our side. and the prayer chain went out- like the dogs calling to each other in 101 dalmatians, it was barked all over the internet and on the phone and in writing. pray for samuel jude- he has a brain tumor- pray for healing- pray for strength- pray for his parents who are crumbling to bits.
i got emails from people who'd been praying- people i'd known when i was a really little girl- people i'd never met. i can't explain it, but the peace that i felt was like nothing i've ever known before.
then God showed up again. we were in the MRI suite, waiting for him to finish the test- part three of the bite sized pieces. i was so worried, so afraid- what were they going to find- how much had this tumor grown- as we paced and waited-i felt the presence of God, by my side- again, in a way i can't explain- except to say that i know He was there- we were not alone. for all the years since- i cry in church when i hear, "blessed be your name on the road marked with suffering, tho' there's pain in the offering blessed be your name"- because i'm transported back to that basement MRI suite of moffit long hospital in san francisco when i could say "blessed be your name"- even in that darkness- because we were not abandoned there.
and i was given him a third time. the tumor had shrunk, the markers went down. they didn't really understand, but now this wasn't behaving like a malignant teratoma. we'd have to wait and see. praise God.
when he turned 12 weeks we started calling him jude.
by the time jude was a year and a half, we had learned to live in the gray zone - we had learned that being unsure, was much better than being sure about something awful. jude was now getting scanned every 3-6 months, and on the day to day he was doing great. that fall, mike traveled with his dad to a remote village outside of mbale, uganda. they went to a little church there for the afternoon- it was the home church of one of the drivers that mikes dad had used on a previous trip to the capital of uganda- several hours away. mike and his dad were the first americans to visit this village church. when they arrived, the people gathered around mike and said through a translator, " how is your son? we've been praying for him." this floored him. this little ugandan village church, a community devastated by AIDS and poverty, was praying for our little son, on the other side of the world. they had prayed for his healing, they had prayed for our peace. they had cared and loved and had faith- for someone they'd never met- someone they probably would never would meet. and this for us was life changing.
the story of jude deserves so much more than one entry on a blog- it has so many layers and there was so much gained and found in those dark and stormy months. his life is such a gift- given over and over- and i wonder what else is left to unfold.
