Things Were Going Well Until They Weren't

Something happened.
It isn't good.
In fact it's very bad.

The truth is that I usually cry about 5 out of 7 days a week because I miss Camille...but now I don't have time for my grief for Camille because I need to do research and find answers and find hope for Harlow.

She has been amazing, growing and learning. She is 7 months young today...my little chicklette is the bright sunny spot in my days. She screeches and sits up, she can finally roll over in both directions but just barely. She is the most calm, congenial, mellow little girl. She is so soft and bald and super squishy.

We started on food around 6 months. Rice cereal, banana, butternut squash avocado. A couple weekends ago I gave her some rice cereal mixed with breast milk, about 3 hours later she started vomiting profusly, she was pale, lethargic and than the next day she was her usual self. I thought my breast milk had gone bad even though it was only 4 days old. It didn't taste bad...but I figured it must be that. Than a week later I gave her some rice cereal again with freshly expressed breast milk, 3 hours later the same progession of events... I knew she was allergic to rice cereal...but what baby is allergic to rice cereal? I called in to the on call service for my pediatrician...I told the nurse everything I had researched...We got a diagnosis on the following Tuesday after a lot of research on my part...She has FPIES (Food Protein Induced Entercolitis Syndrome). It is a very serious food allergy. It is cell mediated which means she doesn't get a rash or anaphylaxis. Her intestines sees food proteins as foreign.

She is fine unless she eats a trigger food. The problem is there is no set pattern, every child is different and we won't know what food she is allergic to until we feed it to her. It's like rush and roulette with food. It may not be the first time I give her the food, it may be the 5th or the 14th.  She is already allergic to rice and so all grains should be avoided. If a baby is allergic to rice, they are most likely allergic to soy and milk and so those are to be avoided. We will have to trial food for up to 3 weeks to know if it is a safe food for her.  Our family has no allergies so I don't know where this came from. I was allergic to wheat when I was little and grew out of it. The good news?? she MIGHT grow out of it in 3-4 years. I have to hold on to that hope. I am scared about the potential ER visits because of one bite of food, or an accidental ingestion of a piece of cracker....

It is a rare disease, like 1 in 100,000 babies. I don't know how I keep drawing this shit luck number. I can not begin to tell you how scared I am, how overwhelmed I am. I have had a bit of a pity party but mostly I am just sad. Sad for her. I know this will drastically change our family...I am just not sure how yet. It is all so new. I know so little. I am waiting to hear back from our pediatrician about resources. I have joined forums and read information in scientific literature, I have signed up with international associations and read blogs. I am trying to educate myself. I have stopped giving her food. Strictly breast feeding and wondering when I should start on that first scary bite by bite process. Should I strictly breast feed until Harlow is 1 or should I start trialing food sooner. I know she won't pass all the trials and at some point she will need more food than my breastmilk can provide.

I have aniexty and stress, I am right back in the throws grief and why me, her, us. I feel almost paralyzed by my fear. What I need to do is find my hope again. I hope she will outgrow this, I hope her path will be easier than harder. I hope we find foods she is not allergic too. I love her with all of my heart. My rainbow baby. My love.

Here is some information about the disorder:
International Association for Food Protein Entercolitis
FPIES foundation
Expert Reviews Article

What A Difference A Month Can Make

I was on a walk this morning with just the small baby. I was thinking to myself... Who am I anymore? I really don't know. I have lost all concept of who I am currently. I can tell you very clearly who I used to be or who I have been in the past...but now I am only a mother.

I lost so much with Camille's death, Many of the things I loved left too.
I could list them: Athlete, reader, chef, driven career woman....I am non of those things....I am interested in them but non of them define me anymore. My main focus is keeping my children alive which is no small task when viewed from the eyes of those who have failed at that job.

I did cry while I walked because I don't even know if it is a choice...or if these things are gone like my daughter is...not by choice.

It is hard bumbling through life, so unlike "me" whoever that is. I liked having an "identity" or being so "_______"
a statement like "that is so Renel"

I can't even do that and I live in my skin. I accidentally made a peanut butter and jam sandwich the other day and found it the next day inside the bag of bread....fucking hell, I know I am functioning on less sleep, working, not blogging and not going to therapy....those combine into a morning walk with tears for sure. Sometimes I try and test myself to see where I stand... How am I without a month of therapy, a month of not blogging. Well not great. I need them both but I have little time with work and babies and realistically the lack of sleep is very dysfunctional.

I am trying to lose weight so I can regain some semblance of self...will I find who I was or a whole new me? I kind of wonder...will it be an epiphany or will I wake up someday living a completely different life and wonder how I got there. Nothing seems particularly conscious and that feeling is not a good one. Sometimes autopilot is necessary but I wish I had more direction.

Sleep...I need a lot of it and am getting very little. I think to myself: I put a sandwich back into the bag with bread and I am working on people's broken hurt bodies at work....EEEEGADS! the lack of sleep is affecting my relationship with D. Short fused and short on patience. No one else can need me right now. I have nothing to give anyone. I am all used up. I try and remind myself that this is short lived. I will get more sleep soon. I never take it out on the baby. I know better, so everyone else gets the shrapnel of fatigue and exhaustion.

I remind myself:
We loved each other.
We loved each other so much that we had Kai.
We loved Kai so much we had Camille.
We loved Camille so much we had Harlow.
Where will our love lead us next?

Because sometimes I forget about my love for anyone but the babies. I feel like a Foo Dog standing guard over them, mouth open, teeth barred. But the fierceness does not need to be focused on all people. I have to remind myself: They are not the enemy.
I have to remind myself.
I am not sure who to blame anymore...I am too tired to figure it out...and so I lash out at anyone who gets within striking distance. I have no patience for you I say. My heart is still bleeding behind my love armor.

The truth is: I cried almost everyday in the month of January. I don't really know why. Maybe my return to work and taking Harlow to daycare has me all emotionally taught. Trying to find the balance between working a job I love and being away from my baby....it makes me want to vomit. I hate working even though I like being there....I hate being away from her. I trust no-one. No matter if Harlow is in good hands, they are not mine. I have the best of both worlds. I have a great job with a fabulous schedule, I make good money, Harlow is up the street. UGH I just want to be home to have her nap on my chest.

Kai turned 4 years old last week. He is giving me a run for my money. Smart kids do this. He doesn't throw fits, he will rationally discuss with me the reasons for his disobedience or bad choices. It is exhausting. He is brilliant and funny, loving and sweet and stubborn, obstinate and loquacious with words. I know his vocabulary stems from me. He can talk you into the ground. I tune out. I feel guilt for wanting just a little quiet. I love him. He is so grown comparatively to the not quite 2.5 year old that carried my heart on his shoulders when Camille died. He is mine and not mine at all. I remind him that I grew him. He loves to hear stories of things I did with him while he was in my belly...like a far away adventure novel. He knows 50 site words and loves to read what he can. He isn't even in preschool. He has a kind heart that oozes out onto our meditation floor. He says he has 2 sisters and that he loves them both and it makes me love him even more... and when I see him giving his sister kisses and parroting in a high pitched voice what he hears me say to her, or to watch Harlow shriek with laughter because her brother is just SO funny... my heart swells with love for him.

So this past month we got the plague and recovered, I went back to work and put Harlow in daycare, Kai turned 4 and I have loved bigger and missed more. It seems a lot for a month.

The Profound Things We See

Have you seen the movie "The Words" with Bradley Coo.per? I'd been wanting to see it ever since it came out, but I never go to the movies. No one told me that someone's baby dies in the movie. It isn't the main theme but it is an essential component. How is a baby's death anything ever but an essential component? You see, the main character pretends to write a novel that he found. The novel was written by a man after his daughter dies. At one point Bradley Coo.per asks the man who is now old....what happened ie. to writing, to his marriage, to him etc... the old man replies "life happened".

I am watching a movie about a family inextricably broken by the death of their child. They are so shattered that their marriage falls apart. The old man says he had always imagined his wife being desperate and broken after their split but than he recalls accidentally seeing her several years after they separated, he was on a train and she on the platform. She was with another man and they had a child. He said she actually looked happy.

She had her rainbow baby and the man had never been able to move on, or rather, forward. I don't think either one of them was unscathed...she just found a way to try and find happiness in a way he never really could. He spoke of finding a sort of peace. This is something I haven't come to. I think it is much too early in my process. I'm too close to Camille's death. I am still broken, wondering, floundering, flailing, angry, sad, missing.

This was a really good movie. I actually really enjoyed it. It is strange to watch something like your life play out before you on the screen. But here's the thing....It's only a good story when you're watching it on film or reading it as fiction, not when it is your own tragedy, unfolding before you with no ability to change the words or know the outcome beyond what has already played out. The long nights staring out into the night time sky, the stars that no longer hold the luster they once did. The days spent wondering of the other path, the one more often traveled it seems by almost everyone but you. The path that leads to complete families and no dead children. The pleasentville neighbors and their hidden demons that couldn't hold a candle to your pain. The sidelong glances at the families who have the right number and matching genders of the children you gave birth to but are not represented by the number of bagels ordered at the cafe.

Camille is not my tragedy, her death was.
"Life happened"
Death happened
and my life kept going.
(and so besides the movie details that don't match up to mine exactly)
I find myself on that train station platform
with my husband, son and my rainbow baby girl.
My past can not be changed or rewritten.
I can only watch it, like the train, moving father away from me.
I hope for happiness
maybe someday... a measure of peace
but  I know the missing will never go away.

My Peaceful Place

Last year on New Years Eve day and New Years day we were outside, We also conceived Harlow.

What a difference 1 year makes....A whole baby....living and everything.

This year we were in Santa Cruz and once again we were outside. I think it is a good way to end and start a year, being in a space and place that makes your soul feel more at peace. We went to the beach and although it was slightly chilly, it was beautiful, radiant, clear, fresh and it felt really good. 



A beautiful winter day at the beach



The Boy



All my babies together...if only in a photo



Camille would have turned 1.5 on the 30th of December. I can imagine her walking around on the beach all blond and tiny and I just miss her so much. 18 months of missing...



Harlow turned 4 months on the December 31st. here she is at midnight!

The next day we went to Fall Creek state park. I grew up on Fall Creek road, yeah really.... with a creek and redwoods in my back yard, a horse pasture across the street and the street dead ended at the state park! WOW! I spent my entire childhood running around those woods. Ferns, moss and water, mushrooms, redwoods, thick dark soil, leaves and that woody smell of all things natural.

I strapped Harlow onto me and our family trekked into the very chilly woods. The overgrowth of forest makes for very cold winter conditions, wet and slippery. I can not tell you the joy that fills my heart when I get to see Kai exploring the woods I grew up in. Jumping and climbing, finding sticks and toadstools. This is my peaceful place. I am not religious but in the woods and nature is where I feel my most spiritual.



Isn't this just beautiful




glorious



leaf skeleton



Me and two of my babies

 

When I hold my breath under water, I walk across this log in my mind.
Holding my breath is the ONLY thing I can beat Daryl at...
2 min and 52 seconds is my record.

 

The boys, hands in pockets...It was really cold.

 

Magical


There is a poem that my friend has on her wall. Now it resonates with me on a whole new level. I read it everyday, multiple times a day. This poem fits my state of mind and brings me to a place of calm.

The Peace of Wild Things

When despair for the world grows in me

and I wake in the night at the least sound

in fear of what my life and my children's lives may be,

I go and lie down where the wood drake

rests in his beauty on the water, and the great heron feeds.

I come into the peace of wild things

who do not tax their lives with forethought

of grief. I come into the presence of still water.

And I feel above me the day-blind stars

waiting with their light. For a time

I rest in the grace of the world, and am free.

-Wendell Berry

The forethought of grief....oh man. I have such a hard time with this. The worry of what if... I worried about death of those I loved before Camille died, now it is a haunting that I have to consciously stop thoughts about. To be in a peaceful place where I feel calm and relaxed is just what my soul needs. I have to go to these places in my mind since I can't be there physically all the time.

another day on a hike overlooking the ocean

2012 was filled with hope for a rainbow baby. I worked for Harlow like nothing I have ever worked for.

 I hope in 2013 to regain some fragments of who I once was....I hope for rays of sunshine to pour into my soul and help warm the cold parts of my heart.