What I Would Do With What I Know Now

Recently, I posted of the first believed survivor of Potter's Syndrome bilateral renal agenesis and now that I've had some time to digest the news I'd like to share my lay person's opinion on what I would do from her on if I ever heard the words "Potter's Syndrome" in my family again.  I emphasize I am a lay person, not a medical professional.  I'm just a mom who has carried two babies with Potter's Syndrome through to their full term births and then cradled them in my arms until their time on earth ended.

Based on precious Abigail's story here is what I would do.  I would ask for a second opinion (which I did do both times), but for the second level ultrasound I would request that my uterus by injected with saline so that the baby's anatomy could be better visualized.  Then, I would ask that a repeat ultrasound be performed one week later without saline.  At the repeat ultrasound I would ask to have my fluid levels compared with what they were the week prior after saline injection.  If it showed that some saline was retained in my uterus I would ask my doctor to perform another saline injection and repeat ultrasound to see if the saline continues to be retained and to carefully monitor my baby's growth and lung development during these weeks.  If there was progress I would request weekly saline injections as well as steriods to speed up baby's lung development as I believe the risk of premature birth would be even more increased by the saline injections.

I would print out any information I could find from John Hopkins doctors regarding Abigail's case (an official statement was released) and encourage my doctor to read it and give me a chance.  The prognosis for Potter's has traditionally been 100% fatal and now that there is a glimmer of hope I would ask the doctor to give my baby a chance for life.  I would be realistic and admit that I know it is a slim chance and I would still prepare for the absolute worst outcome and would make sure I was fully informed about all of the risks involved in the saline treatments (of which there are many, I'm sure) and I would also become fully informed as to what would happen should my baby be born alive and with functioning lungs.  I would make sure there was a medical plan in place to handle all possible anticipated outcomes.

We don't know if Abigail's survival thus far is a miracle or is something that can become a reality for many but I think that it's definitely worth our persistence with medical professionals.

Letting Go

I have a love/hate relationship with gardening.  I find it to be a very strong extension of the process of learning how to grieve, grieving and living with long term grief.   You see,  I live in a climate which has four very distinct seasons that are not always equal in length.  So each spring I wait for the soil to warm and then I get to see which of my perennials have made it through the winter.  Often, some of my favorites don't make it and others are unexpectedly prolific.  Plants die for no reason, die because of the season, some are expected to live short lives and others take a lickin' and keep on tickin'.  Sometimes there is just no rhyme or reason as to what goes on in my garden.  So I have to

Let Go.

Just like ten years and two months ago I listened as Wyatt's heart stopped beating and two years and five months ago I knew Eli's time on this earth would be very short.  Every fiber of my body wanted to hold on and never let go.  Yet I did.

Letting go was not just a matter of relaxing my grip.  It was a gradual process of relaxing my heart, relaxing my thoughts and letting the string unravel.  I still have that string but I don't need to cling to it to remember it's there.

My garden is my classroom.  It teaches me that I am not always the boss of things, even things that I feel are simple and well within my control.  No matter how many times I plant or replant, water, fertilize or pray, if that plant doesn't see fit to grow in the soil it won't grow.  Finding strawberry plants that I didn't plant in Wyatt's garden is proof that I am not the architect but merely a caregiver to nature's design.  My best efforts are just that, efforts to learn, grow and cultivate beauty.

Nature has been particularly cruel in my yard this year.  Wyatt's tree was ravaged by disease and was cut down.  The willow's absence has been a painfully sunny reminder of our loss this year.  Rabbits have ravaged our yard inside out it seems.  They have attacked my raised vegetable gardens and seem impervious to any deterrents.  But veggies are not enough for these furry fiends.  No, they have also stolen the beauty from my garden and kept entire flower species from blooming by chomping down the buds.  I can only hope the winter is long and food is sparse.

Yet even though so much is out of my hands and the unpredictability tends to drive me CRAZY, it is a daily comfort.  It still needs my help to thrive, even in ways that are unplanned.  I still have to work to let go enough to let go sometimes.  I've learned that sometimes letting go results in beauty growing in ways that I could never have imagined.