By Anne Fricke
*Here is one of my original blog posts from when Freya was newly diagnosed, with a new ending.
I learned with my first daughter that becoming a mother involves the ability to surrender. It begins first with surrendering your body to the growing of a new being, surrendering to the earth-shattering pains of childbirth, surrendering sleep, and other basic necessities. I thought this time around, I would have the surrendering part down. But Freya has taught me a new kind of surrender.
My oldest daughter's birth was one of the most empowering of my life. I birthed her at home, in the water, with my and my partner's hands. She nursed right away and continued to do so for 2 and a half years. I rub her leg with homemade herb oil when she gets growing pains. When she gets a fever, I give her a warm bath and herbal tea from the garden. I was ready to do this all over again.
When I walked into the birth center for the last resort external version to turn my breech baby, my first thought was, "I can't have my baby here." That was the first surrender. A few hours later, I was lying in a hospital bed, hooked up to an IV of pain medicine and a catheter, holding my newborn that had been brought into the world via the gloved hands of doctors and surgical equipment.
She was too weak to nurse, so they brought me a pump and a syringe. I began the tedious task of finger feeding, grateful for any mL I could get into her. By the time we went home 4 days later, she was nursing, but with the help of a nipple shield. A few weeks later, and too many ounces lighter, I gave her her first bottle of pumped milk. In 20 minutes, she gulped down 2 ounces! That moment was bitter-sweet. Finally, something had worked to get her to eat well, but it was not the sweet, mother-baby snuggle bonding time that it was with my first daughter. It was mechanical, and there were too many steps between my milk and her mouth. That was my second big surrender.
In January, we went for genetics testing. Freya was 2 and a half months and barely 8 lbs. They talked with a nutritionist who said we needed to add a little formula to her bottles to get her required calories. Surrender number three.
I expect they will keep coming, but with every one it is getting easier. Now we can't wait to get Freya to the doctor and start her hormone treatment. For now, every morning, she gets 1 mL of fish oil and 30 mg of CoQ10. We're waiting for physical therapy to start. Until it does, we give her tummy time and lots of stimulation. The tummy time is to help her strengthen neck muscles so she can soon hold up her head. The stimulus (involving brightly-colored plastic toys - another, albeit small surrender) is to increase her alertness and help with brain development.
I thankfully have no regrets so far. The cesarean was performed by caring, sensitive doctors, and though I didn't get to watch or feel her enter the world, I did see the joy on Andy's face as they lifted her from my womb. My hospital room was decorated by my friends' loving hands, and I was cared for by helpful, caring nurses. Though her feedings are not the ideal situation, I now know it is because of her disorder and what must happen. I'm grateful to still have the milk to feed her.
*Contrary to how I ended this post all those years back, I no longer feel like life with Freya is about surrendering. This life involves learning, adapting, creating, and accepting. I am not giving up things or ways of life, I am finding new paths, new solutions to obstacles that may arise, and beauty in the scenery along the way.
About the Author
Anne is the founder of BREATHE and mother to three daughters, one of whom has Prader-Willi Syndrome. Much of what she knows about herself, she has learned through writing. You can check out her "Journal Therapy for Parents and Caregivers" course on this website to learn more about it, or watch for any of her live workshops.