Thursday, July 29, 2010

We need a hand!

We planted a good sized garden this year in the spirit of health. The best food for you is the kind you grow yourself. Unfortunately I'm having a hard time keeping up with the weeds. Lots of people have asked if there is anything they can do to help us and now I'm asking for help.

Please if you have an hour or two come help me with some weeding! Call me at 250 509-0593 or send me an e-mail at maraglow at gmail dot com. ( I have to write it that way to avoid spammers getting my addy)

Wednesday, July 28, 2010

Wednesday July 28, 2010

I'm reasonably certain that as soon as I sat down to type she woke up. I can envision her laying on the pillow, mouth slowly opening and closing, blind eyes darting around the room. I'm not entirely convinced that she can't see anything. I think perhaps her ability to focus is gone, but perhaps she can see light and shadow. Maybe auras. Who knows?

Monday the 26th was Anaya's 11 month Birthday. It was also my close friend Penny's Birthday. I decided to celebrate with them by inviting some of Penny's friends over for dinner and suprising Penny. It was quite lovely. We had a turkey dinner outside on the lawn - but the cake was the real winner. Micheal at the Procter Bakery made a triple layer callebaut chocolate cake and then I iced it with callebaut dark chocolate ganache and decorated it with pink icing and edible flowers. I had fun doing that :)

Anaya has been having difficulties with her secretions the last few days and we are just trying to help her stay comfortable. She needs me now. I must go.

Friday, July 23, 2010

Friday July 23, 2010

This morning is one of those blue-sky days. The kind where you wake up and look out the window and can't wait to experience the day. From my vantage point at my milk-pumping station right now I can see only one small cloud hovering over the mountain. The forecast is for SUN SUN SUN and I'm overjoyed. There are a variety of Sun loving things that need to be done today.

1)Mow lawn
2)Walk dogs to lake
3)Pull some weeds
4)Jump in pond
5)Dip baby in pond
6)Pick Raspberries
7)Water everything

List subject to baby's cooperation. Maybe I'll get some help with the mowing part :)

Joanne is coming today. Yesterday she was not here, as she doesn't work on thursdays, but we have a new girl that comes to help on thursdays. Her name is Kali. She's a Care Aide and a nursing student. She's also very meticulous and she helps me keep the house clean. She washed some windows for me yesterday and WOW! They are so clear now you can't even tell that there is glass there!

Despite being overcast and rainy yesterday I had a great day. Anaya had a bit of a gurgle most of the day but it was manageable. She was pretty content to be close by while I cleaned and refilled my herbs and spices containers in the spice rack. I played Mozart for her and she seemed to like it. Penny came over to visit and we sat and chatted and just hung out in the bond of our friendship. I like being with people where silence is acceptable. Where you don't have to speak every second. I served Penny a glass of red wine from the box my dad left here a few weeks ago and she almost gagged. I guess it's off now. Time to toss it!

Once Penny left I went to see a new friend of mine who is a pottery instructor at KSA. Her name is Lisa Martin. I took Anaya with me and we journeyed to her house for dinner and some pottery demos in the studio. Lisa showed me some tricks I did not know and I pulled my very first mug handle. Lisa looked at my first works that I had taken to her house to fire and she said something that really excited me. She said that I have a natural talent for potting and that I'm "Gifted". WOOHOO! I felt like jumping up and down and throwing my hands in the air. I'm good at something that is really fun! With everything that goes on in my life it's sure nice to feel like a have a tangible, valuable skill. I'd really like to take Lisa's pottery class in September, and if Anaya can spare me to be away one evening a week I'm going to do it! Lisa gifted me with a beautiful mug and bowl to take home and I left feeling inspired and motivated and happy.

Anaya is still sleeping in bed right now while I pump and write. Her cherubic little face is cradled peacefully against the pillow. Her chubby fingers stretched out towards where I was laying. She is so warm and snuggleable. I'm so glad to be her mother. I'm so glad that she chose to come to us. She is teaching me more about myself and about life that I ever thought was possible in such a short period of time. We are blessed to have each other.

Wednesday, July 21, 2010

Wednesday July 21, 2010

Yesterday Anaya and I had an interesting day. It started out with Anaya sleeping in a new set up beside the bed, instead of sharing my pillow. We didn't sleep quite as awesomely as I had hoped. I think it will take some getting used to. I kept waking up to check her and make sure she was warm enough, and that her head was positioned properly to allow good breathing. She awoke with a gurgle in her throat, which progressed into a full on mucous bubble attack later in the morning.

Anaya and I travelled to Nelson, where we met Joanne for a bite to eat at "Bent Fork". It wasn't my morning for 50's memorabilia and bland eggs so I left rather dissapointed. We went to Joanne's beautiful abode where we set up Anaya's nebulizer machine and tried to get a handle on her secretions. Joanne stayed with her while I ran errands.

I went to the childrens consignment store to drop off some old sleepers and had an emotional meltdown. As I was labelling them with my number I came to Anaya's froggy princess sleeper. It's always been one of my favorites. It fit her for months. Suddenly I couldn't breathe, my eyes teared up, my heart split open and for a moment I saw myself sobbing my eyes out in front of other startled customers. That did it! I mentally grabbed the halves of my heart and forced them back together and sewed it up with self-assurance. She's still here, she's still alive, focus on the now - leave the past and future where they belong. Once settled I decided to keep the froggy sleeper, and bought Anaya a couple new warm-weather outfits. I headed over to Katie Sawyers to drop off milk coolers and proceeded to allow my emotions to flow. She leant me an understanding ear and gave me great hugs. We sipped spicy ginger tea and I allowed the warmth to seep into my aching heart and rejuvinate me.

I went back to Joanne's House and found Joanne and Anaya seated in the rocking chair still trying to get a handle on those nasty secretions in her throat. We decided that we would not take her to her scheduled chiropractic session. I went alone, still in an emotional space.

After the adjustment I picked up some blueberries to share at our planned group meet up in the park. We were to meet Anaya's milk donors or "Milky Mom's" for a blessing ceremony. Again I returned to Joanne's House. Anaya sat in a calm space and had cleared up considerably. I gave her a feed over the course of an hour and then we took her feeding tube out and put her hair in pigtails.

We walked to lakeside park and set down our blanket in the lush grass with the other mamas. We were joined by Rosalyn Grady, a spiritual elder, who led us in a ceremony of blessing for the mama's and their children. We each made a SEED BUNDLE TO REPRESENT OUR HOPES AND LIFE for the next generation. Then it was my turn to speak. I thanked the mamas for giving Anaya the gift of their milk. I explained how much it helps her, how much we appreciate their contribution to her health. Tears poured down my face as I relayed my gratitude and love. I then led the circle in a brief meditation on Presence. Katie gifted Anaya with a necklace from Divine Mother Ama- the woman who hugs.

We were joined by Jean and Claire - beautiful musicians who played music for us. It was beautiful. In all it was an incredible experience. I danced with a very healthy chubby baby and delighted in her joy. I danced with Anaya too, who seemed to love the music. Here are some more pictures and a video is to come.

Friday, July 16, 2010

Friday July 16, 2010

Penny and Anaya Wednesday evening.

Anaya has been having an excellent week. Her secretions appear to be well balanced and she's getting bigger. I'm also doing well this week. Smiles and laughter have reentered my life, thank god for the sunshine!

I promise to write more next time.

Sunday, July 11, 2010

July 11, 2010


The sun this past week has been amazing. Anaya enjoys the sunshine on her skin. Her and I danced in the grass. I held her up and spun her around in moments of joyous celebration of life.

I have come to know that she is a part of my life's greatest work. The legacy and mark that I leave on this world. The lessons that she teaches me, and teaches through me, the lessons that she teaches others, they are her life's work. It is so amazing how a little baby can be such a profound influence. Her innocence and sweetness touch everyone around her. Her beauty captivates my heart and inspires me to love more deeply than I have ever loved before. Her fragility reminds me that all life is a blessing and each moment is a miracle manifested.

When I kiss her cheek, and each finger on her hand, the softness of her skin is like rose petals. Her pudgy baby rolls yield beneath the touch like softened butter. It is part of her illness to be unable to metabolize fatty acids on a cellular level, thus she is becoming a pudgy baby Buddha. She is so cute, and it makes me smile, but I know that these fats are poison to her, that instead of giving to her life force they are stealing it away.

My rosebud has slept most of the day away. Last nights festivities at the community hall did not break through her sleep. I danced to the band while Anaya slept in the arms of trusted friends, and in mine. Amazingly, in the midst of the festivities, my brother Christopher and I spent quality time together and talked about life. The choices I make each day revolve around Anaya. My whole life revolves around Anaya at the moment. I am unable to see past the present into the future. I am unable to decide now what I will do after she is gone, for indeed it continues to seem that she is slipping quietly away from us.

The thought of missing her breaks my heart. For I already miss her voice, her smiles, her funny laugh and looking into her eyes and having her really see me. What will I do when I no longer have her baby cheeks to kiss? How will my life continue with the center of it missing?

Today I have kissed each finger and each toe in turn, attempting the memorize the wonder of it, the feeling of having my heart overflowing with love, and with gratitude for the gift of her presence in my life. I am reminded of how much love she has brought to me. How she has answered my prayers in so many ways. She has brought to me a family of community, a family of friends, hearts open wide and honest. We are loved and we are taken care of. We have a safety net of love supporting us and when we fall I know it will be there to catch us. I fear the vastness of my grief and I only hope that my fears are worse than the actuality of it.

"Believe in the Miracle" I've been told recently. I do believe in miracles. I hope for one everyday. It seems that the real miracle here is in what she has brought, and how she has connected so many of us in love and compassion.

Thursday, July 8, 2010

Thursday July 8, 2010

Anaya had a fantastic day. Penny came by and took care of her so that I could clean the house up for my family visit. I got the dishes, vacuuming and laundry done! Seems like an achievement in my world. My close friend Grant is visiting from Calgary and my father and brother are going to be here as well.

Anaya had her second dip in the pond today. Shelann and her boys and Amy's kids all came over for a swim in the pond. We had a sunny, beautiful afternoon. I think perhaps Anaya is becoming used to cool water. I got it on video again. It's soo cute. She didn't need to be suctioned at all today. I'm so glad. I hate making her gag.

Anaya has been seeing chiropractor Remi Champagne and she seems to have more mobility in her neck. I pray the things we do to help her benefit her in some way. She is my little love and I would give anything to make her better, or relieve her discomfort. The chiropractic seems to help as much as seeing the healer at Coyote Springs. I continue to give her homeopathic remedies to try to increase her comfort and maintain her health.

we're not certain but we (nurse and I) think she might be having seizure episodes. Remember a week and a half ago when I thought she might be dying? That may have been a seizure.

Not such a pleasant thought on such a lovely day.

Solara is looking forward to visiting relatives in Calgary and will be gone for most of July. I hope my little girl will have amazing growth experiences, though I will miss her dreadfully.

I'm always striving to maintain Presence and I hope with all my heart that I'm doing right by my babies.

Tuesday, July 6, 2010

Tuesday June 6, 2010

This is a picture from yesterday of Joanne using the nebulizer to help Anaya manage her secretions. Anaya is doing alright the last couple days.

We just returned from a family walk down to the general store. It is such a beautiful evening. Nice and warm with a light breeze. Solara found a snake on the road and we helped it get off the road and into the ditch. Hopefully it will stay off and continue to slither another day.

I love all the purple and white flowers growing in the ditch. I love Procter. I love Kootenay Lake. I love seeing all the beauty around me. Anaya enjoys going for walks. She really seems to relax and take it all in. We usually take her for at least one walk a day. I'm tired now and my creative energy is ebbing. Tomorrow I am meeting with Lisa and Rosalyn to plan a group tea for the moms that help feed Anaya with their milk.

Saturday, July 3, 2010

Anaya pre-Krabbe Video

Before Anaya became ill she would smile and coo. She could see and she could move. She used to copy the funny sounds I made. This video is our only video of Anaya when she was healthy. It is a very special moment to me. I have decided to share it with you.

She's so cute and vibrant.

Saturday July 3, 2010

The past few days have been filled with the task of managing Anaya's secretions. She's either been too wet or too dry in her throat. We spend quite a bit of time with the nebulizer and the suction machine.

The stress of it has me emotional and I'm producing less milk today than usual. We still get milk donations from nursing moms in Nelson and we sure use them! Anaya is fed with so much love. Last night I came up with a strategy to make the feeding pump work. The sensor hasn't been detecting the breastmilk in the tube because it is translucent. I colored the outside of the tube with a marker and fooled the sensor. Anaya got full feeds last night.

She is so gurgly this morning. It's like her medicine isn't working. I'd better go suction her again.