Being brave


Summer has been a whirlwind of fun and sun! We’ve enjoyed our warmest summer (ever on record) up here in lovely Washington, with many visits to the beach and forests.

Over the last 6 months River has had her annual pediatric check up, her annual cardiac exam, and another GI and dietician visit. She is now sitting at the 8th percentile, a slippage from recent times. And although it isn’t thrilling to see that happen, her weight is what makes that number drop, what’s a tad more important is that her linear growth is consistent, and it is. As hard as it is to not see her grow by leaps and bounds, seeing that linear bone growth staying hard on it’s chart line at least assures us that she’s staying on Her track, if not going up the other tracks.

IMG_0690As far as her cardiac health is concerned, we are pleased to report we will not be going back to see Dr. P for two more years!! It’s so hard to believe that we’ve been only going once a year for years now, and now down to two years!! Her visit was very uneventful, she was the most cooperative ever, the echo room almost made the parents fall asleep, and that was that! No news is good news at this place! We will see you in two years NWCHC!

Since a run of really bad colds over the winter and spring, finally when May hit and she had another cold, I decided to try adding some serious healthy additives to her blended food. We had to get her immunity stronger! And even though it coincided with the coming of the warmer weather, I can report she has been virus-free since then! I may alter my recipe some more for winter, looking for even more natural supplements to boost her immunity. So far I’m adding in turmeric root, water kefir, apple cider vinegar, ginger root, fresh lemon juice, and always either spinach or kale, black strap molasses, pumpkin seeds, chia seeds, hemp seeds and virgin coconut oil. These on top of a few other necessary foods for an all over picture of nutrition, like some quinoa, an additional protein source, and seasonal veggies. I don’t add fruit, or other foods that we know River will consume on her own. I think I’m going to start including manuka honey, echinacea and garlic as we move towards the cold season.


I had a long conversation with a really amazing mom recently. She told me about a program in Denver, and Portland, that is a feeding program for tubies. Dr. P wanted me to consider looking into this program, and I got to hear firsthand from this mom all about it. They managed to take her 100% tube feeding son to about 50% tube feeding, which is a huge accomplishment! But I was not thrilled to find out that they spent about 6 weeks in this program. I was not onboard when Dr. P was telling me about it, and I was not onboard when the mom was telling me about it. We tried so hard in the beginning, like SO HARD, so very very hard. And although we made a huge difference in her life, I have become a firm believer in River. River is the force that propels her life, and now at five there is just about nothing we can do to convince her to eat and or drink anymore than she already does. And I’m confident that when she is ready, we will all see this and know it. I am not going to any life-ripping-up programs anymore to see if we can get her off her tube a year or two sooner then she’s ready.

We are not ashamed of having a tube-fed daughter. River is not lesser than any other. She is not more. She is her wonderful self, that fought hard as a baby to get where she is now. And where she is now is where most five year olds are. Enjoying her playtime to the fullest every day. Enjoying tackling her brother, smooshing play dough together, making mud pies, running through the woods. She literally doesn’t have time for that extra bite or drink! She’s too busy! One day, when she’s a little older, she will be ready for the next step. We are following her footsteps in the sand to that day.


I have made a new piece recently, in honor of River, here is where you can view and purchase it:


And this piece was finished earlier this year, not sure if I included it before.


Peace, love, joy



First World Problems

River Belle is a beautiful soul and we are so fortunate that she is here with us. She is home recovering from her spinal surgery in the same fashion as she has recovered from previous surgeries: with flying colors. Nothing she, or we, couldn’t handle. Now trying to teach her to sleep in her own bed all night and fall asleep without our presence is a whole different issue.

Looking a little drugged, but still has a smile for us

Lately my husband keeps touting about our “first world problems”. Yes, it is true, we live in an upper class country where we are gifted with so many services and privileges and rights that many human beings around the planet do not have. One of those being access to incredible medical advances. Clean water we just take for granted. He laughed at me as I was having wi-fi connectivity issues at the hospital, this “first world issue” that I was experiencing. It made me giggle and agree that, yes, it was an interesting problem that probably 2% of the world’s population can relate with. The other thing that’s been on my mind lately is the greater issue of River’s feeding disorder and how all the parents that I’ve connected with online experience loads of unanswered questions, undiagnosed disorders, unsolved problems of how to get their child to eat. It dawned on me that this is a first world problem. Even though River has a solid basis for her feeding problems, her underlying heart and prematurity conditions, the development of her oral aversion and feeding tube dependency just doesn’t happen much in underprivileged societies. In those places a child such as River, or Haven, or Tiernan, or the many other children I have come to learn and care about that have problems similar to River, would simply not have survived. The ongoing condition of feeding tube dependency and getting them to eat enough to live, and finding the proper methods and medical intervention is so baffling because it’s new. There is many programs and specialists out there that we have found to help us along, but I keep seeing so many parents seeking answers, seeking help and solutions, us among them. There is just no solid answer. It simply doesn’t exist. It’s different for every kid, and every kid has a different timeline.

Loving some chocolate ice cream at Vancouver Aquarium

Our tubies first world problems, a byproduct of their first world survivable conditions, has another side-effect: the parents new problems. It pretty much goes without saying, but I’ll say it anyway: we suffer from anxieties and stresses that are of course difficult to cope with, and difficult to find relief from. We search for footholds on our issues and emotions all the while trying to get our children through the day with their scars, healing incisions, weeping stomas, constant puking, trying to get enough nutrition down them, and hope that they are growing enough. Each and every day we try to do the right thing, advocate for our child’s care, make sure that they are getting everything they need, all the while trying to develop their very normal baby personalities. Making sure they are stimulated and educated and learning behaviour, having fun, and getting decent sleep. Not too mention, but I will, raising their siblings. And top it off with the fact that some of their siblings also struggle with other special needs. As a current sufferer of lack of sleep, extra stress and anxiety, I can say it’s a challenge I never thought I’d be facing. There is no right way to find your way through it. I am so thankful that I have at least found other parents that are in the same spot.

Enjoying a few bites of her new favorite: pasta in tomato sauce

My answer for these first world problems is this: each other. We connect with each other, we learn from each other, we discuss and brainstorm with each other and share our findings. I have to forgive our caregivers sometimes for not being all-knowing, for they themselves are faced with the newness of these problems.  Thank god for the innovation of the internet, Facebook, blogging, and help groups and organizations. Without them I’d surely be on the road to a mental institution. They have provided me with answers that my healthcare providers cannot. These tools give me connection, give me hope, and give River the chance to grow into the best person she can be. Helping Mommy means helping the children. Also the occasional alcoholic beverage provides assistance.