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Tuesday, 10 December 2013

Sally go round the sun

Welcome to the December 2013 Carnival of Natural Parenting: The More Things Change . . .
This post was written for inclusion in the monthly Carnival of Natural Parenting hosted by Code Name: Mama and Hobo Mama. This month our participants have shared stories and wisdom about life changes.

Photo by Douglas Blane
Sally had brought plenty of anxiety into our lives already, by being delivered five weeks prematurely to save her Mum, who had pre-eclampsia.

She was such a delicate wee soul, but she seemed healthy and she ate well. For a few weeks we had no worries and she appeared to be developing normally. She wouldn't breastfeed, no matter how often her mum tried, but she did take the bottle and she did put on weight.

After about four weeks however, little Sally's behaviour began to cause us concern. Several times a day she would go stiff and turn her head to one side. She didn't seem to be in pain but she wasn't happy either.

New mums don't know what to expect. Grandmas and grandpas have forgotten the details of babies' behaviour, and have experienced only a handful anyway. Development guidelines are useful but are all about averages. 

The health visitor was reassuring. She could see nothing amiss, she said. "But you don't have a contented baby," her mum told Marie when Sally was about four weeks old. 

"I know," Marie said. "There's something troubling her. But I don't know what it is. They tell me she's fine but I don't think so. I'm going to take her to the doctor."

At first all that happened was that the health visitor came more often. But Sally's little movements continued and within a week mum and baby had been given a room and a bed in the local hospital, for tests and observation. 

It was a tough time for all of us - mum, dad, grandmas and grandpas, aunts and uncles. Toughest for the parents of course, but not easy for the rest of the family, who had to wait at home for news, and could only visit for a few hours each day. 

Little Sally seemed unconcerned. She didn't like the needles, but they didn't make her cry for long. She slept a great deal and she kept on eating. 

We tried to reassure each other, but the uncertainty was hard to take and the too sympathetic expressions on the faces of the doctors had begun to worry Marie. "I've a feeling it's something serious, but they're not sure so they aren't telling us," she said when we visited on the third morning.
Photo by Shona Howat

That afternoon our anxieties increased when we got a phone call to say that mum and baby were being taken by ambulance to the city hospital for sick children, where specialists could do more detailed testing. 

Three long days later her parents got the results and her mum talked to us soon afterwards. She looked pale and her eyes were red.

"Sally has tuberous sclerosis," she said. "It's a rare genetic condition that causes growths in the body. She has one in her brain that's causing the seizures. She has three in her heart but they're small. They are not concerned about them. Her kidneys and lungs seem fine.

"Sally might have learning difficulties. She might be autistic. They don't know. She might be all right. They have to get the epilepsy under control, they say. So we need to give her drugs every day."

Her mum took her hand and squeezed.  "We'll get through this," she said. 

"I know," Marie said. "But only 1 in 6000 babies are born with this condition. Why me, Mum?"

"I don't know, sweetheart," she said and hugged her hard.

That was three months ago. Sally is now on four different drugs daily and the seizures don't last as long as they did. But she still has lots of them. Her arms and shoulders go stiff, her face turns red and her eyes lose focus. It passes quickly and she seems unconcerned afterwards, but she can have dozens a day. 

It is hard to watch her. It's even harder to watch her mum's face while she's having the seizures.

Photo Douglas Blane
Sally is still growing and has begun to make eye contact. She chuckles and follows the sound of her mum's voice with her eyes. Physically she is a little behind and has not yet got control of her head, which is a worry. 

The doctors are talking now about steroids and even surgery. So the future for Sally is uncertain. We look after her. We buy her presents. We watch and wait. 

She is still developing and making progress. But we don't know if it's fast enough and we don't know where or when it will end.

"We do know one thing," her grandma told her mum yesterday afternoon in her flat, as we watched Sally lying on the sofa and giving us big smiles. 

"She is the best-loved wee girl in the world and she always will be."

Since I wrote this a week ago, Sally has learned how to lift her head and turn it to the sound of her mother's voice. She can't hold it steady for long, but it is a good sign.

For more information

Tuberous sclerosis is a genetic condition that causes non-malignant tumours in various organs of the body, mainly the brain, eyes, heart, kidney, skin and lungs. Aspects affecting quality of life are mostly associated with the brain, and can include seizures, developmental delay, autism and learning difficulties. Many people with TSC live independent, healthy lives, however, and have challenging professions, such as doctors, lawyers, teachers and researchers. The incidence and severity of the various aspects of TSC can vary widely between individuals - even between identical twins.

Carnival of Natural Parenting -- Hobo Mama and Code Name: MamaVisit Code Name: Mama and Hobo Mama to find out how you can participate in the next Carnival of Natural Parenting!
Please take time to read the submissions by the other carnival participants:
  • Mature StudentAmber Strocel is embarking on a new adventure in 2014, by returning to a space in her life she thought she'd left behind - that of being a university student.
  • And then there were four — Jillian at Mommyhood learned how quickly love can grow when welcoming a second child to the family.
  • Handling Change As A Mother (And Why That Takes Things To A Different Level) — Jennifer at Hybrid Rasta Mama shares how she helps her young daughter navigate change and why it is so important, as a mother, to gauge her own reactions to change.
  • Without Dad-One Year Later — Erica at ChildOrganics shares how her life has changed one year after losing her husband suddenly.
  • Family Ties — Lori at TEACH through Love realized that her most significant, most painful wound paved the way for her to share her greatest gift.
  • Rootless — After Dionna @ Code Name: Mama's parents packed up their home and moved to Florida this fall, she is feeling rootless and restless.
  • A Letter to My Mama Self in the Swirl of Change — Sheila Pai of A Living Family shares a letter she wrote to herself to capture and remember the incredible changes from the year, and invites you to do the same and share!
  • Junctionssustainablemum explains how her family has dealt with a complete change of direction this year.
  • Planning, Parenting, and Perfection — Becca at The Earthling's Handbook explains how most of the plans she made for her adult life have worked out differently than she planned, but she's ended up getting a lot of what she really wanted.
  • Why First Grade Means Growing Up... for Both Me and My Daughter — Donna at Eco-Mothering discovers that her daughter's transition into first grade is harder as a parent.
  • First Year of Mothering — Mercedes at Project Procrastinot reflects on the quiet change that took her by surprise this year.
  • Building the Community YOu Desire — A recent move has Mandy at Living Peacefully with Children working toward setting up a new support network.
  • Slowing down in 2013 — A car fire and a surprise diagnosis of Down syndrome made 2013 a very different year than the one Crunchy Con Mommy and family were expecting!
  • The Seven Year Cycle — After 7 intense years of baking, birthing and breastfeeding 6 kids, Zoie at TouchstoneZ wonders, "Will I be enough for what comes next?"
  • Rebirth — Kellie of Our Mindful Life has found that each of her births leaves her a different person.
  • When a Hobby Becomes a Business — This year, new doors opened for That Mama Gretchen's hobby of writing and blogging - it has turned into a side business. She's sharing a bit about her journey and some helpful tips in case you're interested in following the same path.
  • 5 Tips for Embracing a Big Change in Your Family — Deb Chitwood at Living Montessori Now tells about a big change in her family and shares tips that have always helped her family embrace changes.
  • Ch-Ch-Ch-Ch-Changes — Ana at Panda & Ananaso ruminates on how having a child changed her priorities.
  • Homeostasis — Lauren at Hobo Mama is finding that even as elements shift in her life — in cosleeping, homeschooling, breastfeeding, & more — they mostly remain very familiar.
  • Sally go round the sun — A new baby brings joy and unexpected sadness for Douglas at Friendly Encounters, as she is diagnosed with a rare genetic condition.
  • Embrace it — Laura from Pug in the Kitchen muses about the changes in her family this year and how she can embrace them . . . as best she can anyway.
  • Big Change; Seamless but Big — Jorje of Momma Jorje shares how one of the biggest changes of her life was also a seamless transition.
  • Celebrating Change — Change feeds Jaye Anne at Wide Awake, Half Asleep's soul. And all the work that seemed like monotonous nothingness finally pays off in a clear way.


  1. How incredibly difficult for all of you! I'm glad to hear Sally's making some good progress and hope for the best for her and your family. Thank you for sharing!

  2. Oh that is so hard. I'm sure that your support is such a blessing to your children and granddaughter. I hope that her prognosis and condition improve.

  3. It's amazing how much a diagnosis of a syndrome can change your life...and yet also how "normal" life can remain even with medications and therapies. She's such a beauty, and having such loving parents will carry her far I'm sure!

    1. I'm sure you're right. There's a wee happy person in there - you can see it in her eyes - and we just have to help her to come out.

  4. She is a beautiful baby.... whatever the future outcome may be. Thank you for sharing this story.

  5. Sally looks adorable. I'm praying for the best possible outcome.

  6. What a very difficult time for all with so many emotions, a happy time tinged with sadness. I hope you can all make peace with the situation and Sally brings you joy for many years to come :)