Thursday, August 27, 2015

Love in the Dark

   I have been thinking over a few random memories the past couple days one of them being a dinner we were invited to sometime last year.  We accepted our invitation as we needed to regain "normal". When we arrived at our friends home, children scattered off into the yard with friends and Chris and I stood in the kitchen each holding a baby and chatting. I'm not sure why I have so many feelings about that one evening but it seems to be burned deep. We had a good time, the kids were well behaved but as we sat there passing the salad bowl there was a gaping wound that laid bleeding as we ate dinner. It was as if everyone knew about this wound but ignored the bleeding.  I remember hooking Henry's tube up to start his feed and he instantly started to vomit everywhere. I remember the race of my heart the shake of my chin, the fake plastered smile as I cleaned him up.  We were hurting in a way that nobody could see, it was a dark difficult place to be. At home with our children our normal daily routines unfolded there was peace and joy, but social events would steal the very breath out of my lungs. I was miserable trying to be who I remembered myself being.  I resented every normal conversation, nothing about who I was felt normal.
As months went by I decided I had to find contentment in the puke, in the mountains of dirty sheets, and stained carpet. I had to find a way to peace in the journey,  even when the wound bleeds a little and no one seems to notice.
The truth is medical mama's balance all the normal motherhood things plus some.  We juggle therapies, appointments, meds, doctors, nurses, travel for specialized doctors and for the large majority of it we rock this stuff.  We are the moms of complexities.

Here's the thing we learn on our journey's as we juggle our medical mysteries, some people are jerks and it sucks but.... and this is a big but there are far more FANTASTIC people out there!!! Your friends who have no clue what your days feel like but show up at the drop of a hat. KEEP THEM! They are gold, and they help you remember who you are.  Find your tribe of other medical mamas that get your new found lingo, where there is no explaining for the millionth time what something means.  Keep that nurse that you connected with like you have been best friends since 7th grade and don't let her go.  Love these people! Because these people are the ones that are going to let you bleed all over the place. They are the ones that are going to clean up the blood and put the bandaid back on and they will do this over and over and you will do the same for them.

 That child the medical mystery, the child that you can't imagine life with out, your fighter,  the house of cards you build everyday over and over. They are ridiculously cute, and they have a determination for life that is inspiring. Look at them, soak every bit of their sweetness in. Smooch that G-tube button on their tummy, run your finger over their scars and remind yourself that you were chosen for this child. There is no one in this world that could do what you do in the most perfect way for him.

Thursday, August 13, 2015


 My goodness it's August, and school is just around the corner. The air up here in the mountains is starting to slowly change. In the morning the coolness of my bedroom reminds me the days are going fast.  As September creeps around the corner plans of wood chopping are being made for the weekends, and fall activities are being scheduled out. I don't know if I am fully ready yet. Every year when I notice the air change it brings about a slight panic to hold everyday tightly, and remind myself that the warm autumn days are still ahead. We've been busy around here. We spent sometime up in northern British Columbia with friends and came home to our living room carpet gone and new floors in.  This was such a huge burden lifted off our shoulders. With the amount of vomit that we deal with from Henry I just couldn't go any longer. My dad said when he pulled it out the smell was terrible.  We are just so grateful to have that small problem taken care of.


Monday, July 27, 2015

The Dance of Acceptance

I never expected the feeding GI issues that would follow with CHD. I was told about the potential feeding problems but not this... not what my treasure lives with day in and day out.  As Henry's mom this roller coaster is one with many loops and turns and places where it levels out just long enough to catch your breath. This is the roller coaster of acceptance. Today I was texting with one of Henry's nurses and another heart mom I was explaining how difficult it is to come to acceptance of where his little life is right now.  How one day feels so hopeful to the next feeling utterly defeated.

Slowly as we wade through these waters I am seeing that acceptance doesn't look like one would think.  Shock, Guilt, Why? Anger, Sadness / Loneliness and this fuzzy word Acceptance...
I think I have felt all of these things a billion times over in no order and sometimes all at the same time.
Guilt that we can't figure out the cause or the cure. Guilt that a baby has vomited daily three, four, five times a day sometimes more and still is the most happy child.
The Why? questions, I have laid in bed awake for hours asking this question. The problem with this  is it can rather quickly spiral into sadness and anger.  It's completely normal to want something or someone to blame when your child has complex needs. From being angry at yourself, God, doctors, friends pretty much everyone around you sometimes can feel your frustration. The thing about anger is your truly never upset at the person receiving it and it all boils down to feeling helpless to change the situation for your child.
Today after two great days Henry has been vomiting like he always has. My heart was heavy with sadness today.  He didn't seem to notice the change... retching, vomiting cycles. Wiping up his little chin and drying those teary brown eyes he was off playing.
Today as I sat on my sofa in a daze watching the kids play together I realized there is no one path to acceptance,  just as there is no time on it.  Acceptance of your child's medical needs will come and go. You may find you have achieved acceptance on certain aspects of your child's condition while others leave you breathless.
Some days are simple and for moments you get to forget, and some days are painful and difficult. And that is exactly the roller coaster of mothering a child with special medical needs. Heart moms like all moms that deal with big stuff need to be given permission to feel it all, that wide range of emotions that seem to be inevitable through this journey. If you know a mom that is dealing with life threatening medical needs with her child be sure to walk gently in her life.

Monday, July 13, 2015

   If there is one thing heart families battle it's the stress of how to spend our money. Every little thing becomes a balancing act and a "what if we need it for something else". The "what if's" that entangle us each pay day, each coffee out with a friend, each activity our kids want to do is a wicked inner fight.  Since the twins were born we haven't had a ton of time for fun as a family.  This weekend we put our worries aside and decided to do a day trip with our tribe. We realized our time as a family with all our children under one roof is coming closer and closer to an end. I can't believe we are almost there, the time when kids prepare for collage and plan to fly the nest and build lives of their own.

 Three Valley Gap is a ghost town nestled in the cannon of Revelstoke British Columbia. There is a ton to do there, a huge Railway Round house complete with steam engines, railway coaches and one of the largest covered turntables in North America. Mini golf, a beach, helicopter rides through the Rocky Mountains. Essentially it's an outdoor museum of fully furnished buildings that have been gathered from around BC.

No matter what we do, siblings of a child with complex issues really need complex care too. Raising healthy, happy siblings needs to be as deliberate and planned as drawing up medications for your child with medical needs. And sometimes that means taking a break for the daily routine to go do something fun laying all your worries down.

Monday, July 6, 2015

Ten Things...

1. Summer day camp with happy kids running to the van to tell me all the exciting things of the day and new friendships growing within our little community around the lake.

2. A sweet little sister lost with out her tribe, trying to pass the hours while babies nap watching her favourite afternoon cartoons. With five of them gone today the house was very quiet, even though I still had four at home I too felt a little lost.

3. Gaining a new sister. A beautiful wedding weekend. Catching up with family from afar making memories looking over a beautiful lake with a summer breeze.

4. Wedding celebrations.

5. A new friend for our gal Greta. This gorgeous Nubian was here as a guest while her family was away but as it turns out she is going to stay and help eat some of the long grass.

6. This smile on our girl Greta, she really needed a friend. She no longer cries for the kids to come outside to play.

7. Our one and only rooster.  He really is the most gentle rooster, we recently separated him from our hens I feel a little sad for him.

8. Hot summer nights. Bedtime with these two is becoming quite the juggling act. They no longer are content to snuggle and lay still.  Climbing, kicking you name it they want to be everywhere but in bed. In these moments when their tiny sweaty heads are peacefully passed out swoon that they are mine.

9. Simon, our faithful dog. It took some convincing for us to bring a dog into our family, one of those reasons being some of my children having an encounter with a cougar last summer. Boy am I so glad we caved, he is just wonderful.

10.  Friends. Friends that see your ugly side and still stay.  Heart mom bonds are like nothing I have ever experienced. Your bond is over fighting for your child's life,  I'm not sure there is anything deeper than that.

Sunday, July 5, 2015


Hello! I thought I would reintroduce myself since it's been a number of months since I last blogged. 
I am Miranda Brown and this guy here is my husband Chris, we have been married 17 years this summer (we were babies when we married, I was 16 and Chris was 19) we have nine fantastic children - Austin, Zachary, Natalie, Presley, Rachael, Jude, Hannah, Henry, and Seamus.  

Four years ago we bought a house way too small for us up in the mountains of British Columbia with dreams of digging our hands in the soil and learning more about homesteading.  We are a homeschooling family for 12 years and we are gearing up to graduated our oldest. In this blog you will find many topics from homeschooling, homesteading, family life, and my walk as a Christian. I started this blog in 2008 to keep track of our days. My children read everything written it's become like our family journal. In fact it was them who encouraged me to start writing again. 

absolutely love hearing from you! I read every comment and email that comes in, and will do my best to reply to questions within the comments at the end of that day (so check back there if you've asked a question).  The words you share bring me such joy and encouragement. And very often, they lift my spirits and make my day - and encourage me to keep writing and sharing in this space. 

I hope you enjoy getting to know our family outside of Hope for Henry.

XoXo Love the Brown's

Tuesday, May 5, 2015

   We are in full science mode over here! Why? Well because we didn't do it any other time this year. LOL The joy of homeschooling. Today we tested  sound and how it transmits through matter.  We found that sound is transferred by particles slamming into other particles. We tried solids, liquids, and gasses, the closer the particles were to each other the louder the sound.