Friday, October 17, 2014

Capture Your Grief- Day 16

Day 16--Retreat

I did exactly that today.  I took my dear husband and we spent the day together.

And now?  I want that every day.  It's been 15 months since we said good-bye to Kale.  And today when we were expecting exciting news we once again received an announcement that a sweet little baby I've been carrying for the past 20 weeks has Potter's Syndrome.

We're doing this again.  We're walking this road of grief and pain all over again.  Only this time we're already carrying a boulder of grief with us down this road.  I can't even put into words the emotions I'm feeling right now, the pain my heart feels.  My brain can't even wrap around the concept.  It's not real, it's a horrible nightmare, a joke someone thought would be humorous.

Shock would be a good way to describe it.  I'm in complete shock.  My thoughts are unfocused, but I need to talk.  Lightning striking our family twice.  The odds...it's unbelievable.  We saw the perinatologist that we saw with Kale, and she was just as shocked as us.  No kidneys, no bladder, no stomach.  It's a 1 in 100,000,000 chance of it happening twice.  Unless there's a genetic link, which apparently there is.  We speculated before, but were always reassured that it was a fluke.  However, now at this point, it's no longer a fluke.  Both myself and Matt probably have some sort of recessive gene that when put together causes this.  There are about 14 different types of 'genetic variations' that could cause this.  And those variations?  They raise our odds in having a Potter's baby to 1 in 4. Twentyfive freaking percent.  The fact that we have two happy, relative healthy children is amazing, as odds are generally NOT in our favor.

I'm getting side-tracked.  There are many details that really don't matter, as they don't change the situation any.  The point is, we are having a second baby with Potter's Syndrome.  Unfortunately we have walked this exact path before, we know the steps that need to be taken.  We know what we would change, and we know the final outcome.  We know any time we get to spend with our sweet baby is through the grace of God being willing to give it to us.  We know that our dear child could pass away at any moment.  There is only so much room in there and with the added complication of a cord possibly being laid on, the risk is great.

And while progress is slowly being made in regards to treatment for Potter's, and there is a miracle baby out there, we aren't fortunate enough to receive such treatment.  Our precious child is missing more than kidney's, which makes the treatment (a saline solution to help lungs develop, and then hope for dialysis until a kidney transplant is available) impossible.

Our hearts are broken.  I don't think it matters at what age you loose a child, every dream you imagined for them, being stolen away so quickly and replaced with heartache is unbearable.

So here we are again.  Preparing for a baby that we don't get to keep with us.  Katryn's response broke our hearts: "Dang it.  I wanted a sister".  And I wanted to give her a sister.  Martin doesn't understand yet, but he understands that Kale is in heaven and so I think he'll grasp this quick enough. Having done this before, we can anticipate this baby being born around Christmas time, about 2 and 1/2 months early.

And so we're retreating.  We're taking steps to protect our hearts right now, as they are VERY fragile.  We're drawing our family in closer than before and cutting out the excess as needed.  We know that God has a reason for these babies to be called back to Him so quickly, and I wish we could know the reason too.  I've said it before, and I'll keep saying it.  Going by faith alone is HARD.

And there it is.  Potter's Syndrome take two in our house.  Preparing to bury another child, to have to say goodbye too soon, to have to deal with 50% of my children not being here with me.  It's a heart-ache I can't even begin to describe.

Wednesday, October 15, 2014

Capture Your Grief-Day 15

Day 15--Community

Day is National Pregnancy and Infant Loss Awareness Day.  At 7pm, everywhere around the world, people will be lighting a candle in memory of their baby, and all babies.  Each in their own time zone.  In a way, this creates a wave of light across the world, each group after the other, lighting their candles in remembrance of our babies.


I set up a little corner in our living room for Kale.  One of my sisters in law crocheted this little blanket for Kale's 1st first birthday and it's perfect.  it's the perfect size, and would have fit him just right too.  Another sister in law gave me the little candle and candle holder in the middle.  I didn't have the chance to tell her, but it's so perfect.  I have been on a sort of hunt to find something I could use each year for the Wave Of Light.  And this is exactly it.

And so tonight, at 7pm, I'll be lighting that candle and thinking of Kale and all others who are no longer here with their families.  I have a list of of names in my head and heart of those I'll be thinking of, but at the risk of accidentally missing one I'm not going to post them all here.  Just know, that I am remembering your sweet babies with mine, and my heart is hurting with yours.

Capture Your Grief-Day 14

Day 14--Dark/Light

I don't have a picture for this.  I don't know how I could represent it appropriately.

But I do want to discuss it.  Because there are light and dark sides to this 'after-life' of having a child die.  A before and after.  There are moments when I'm totally at peace with what happened, and then there are moments when I am angry at everyone and everything, when I honestly want to yell at God and tell Him that He was wrong, that my boy should be here with ME.  When I don't understand that there's a purpose behind it all, and a great plan in place.

There are moments when I feel like I'm living a dream, that this life, the life I'm living without one of my children, is really my life.  I wonder how on earth we got to this place.  10 years ago, when Matt and I were dating, I never would have thought something like *this* could happen to us.

There's a quote going around facebook right now, in the baby loss community that says "1 in 4 in not just a statistic, it's me".  And that's how I feel sometimes.  Sometimes I feel like a statistic and that makes me angry, but it's true.  It's me.

It's like living on a yo-yo.  Going back and forth between the good moments and the bad moments.  The light and the dark.  Yes, the dark times suck, but I get through them and enjoy the light times.  I imagine it will be like this forever, and because I'm in a light-time, I'm ok with that.  When I'm in a dark time I probably won't be pleased, but right now I understand that this is how it is.

Capture Your Grief- Day 13

Day 13--Season

I remember the day we drove to the hospital and Kale was born.  I remember thinking that this wasn't happening, I couldn't believe that I was actually in labor, because I wasn't ready for him to come.  I wasn't ready to say goodbye.  As we drove I distracted myself from contractions and feeling my heart break by watching the sunflowers on the side of the road.  It was fairly early in the year for them to start, but yet, there they were, already blooming.  There weren't a lot of them, but I loved seeing them.  It was a nice symbol, a good reminder for me to face the light in spite of what troubles I was going through.


For that reason, I made sure we had sunflowers at Kale's graveside.  I almost put them on his headstone, but in the end we decided not to.

We also planted a grouping of sunflower-type flowers (a cone-flower I think) at the foot of Kale's tree this summer.  When we were tree shopping, we visited 2 local nurseries to pick the exact tree we wanted.  After purchasing some other things at one of the nurseries we were offering our choice of a free plant, and 1 of our choices was the sun flower type plant.  So we planted right in front of the tree, and it's done wonderful this summer, and it's been so nice to look at it and be reminded of Kale.

I call it sunflower season.  It's really summer time, but whenever I see the sunflowers start popping up all over it makes me happy, and makes me think of Kale.

Capture Your Grief- Day 12

Day 12--Music

I can't say there's something specific in regards to music that just gets me every time.  It completely varies from day to day.  Some days I can't listen to the radio at all, because so many songs make me miss Kale and make me cry.  Sometimes I'll be sitting in a church meeting and the song will just hit me and I have to stop singing.  I just never know.



Always though, Tribute by Jon Schmidt will get me.  We played that song as Kale's graveside service and it will always be very meaningful to me.  I actually haven't even attempted to play it on the piano since he died.  I don't think I'd be able to get through it.  The first part of the song is very lonely sounding.  And then it pauses and it's upbeat and happy.  It's rejoicing.  I picture the first part as life without Kale.  Life without any of those we love, when we're lonely.  And that pause. That pause is us dying and going through to the other side.  And then we're rejoicing, we're reunited with those we've missed and those we've loved.  Just picturing that moment makes me cry.  Some days it's all I can do to not wish that time would just BE here, and I could be reunited with Kale.  But I know it will happen eventually, so I just keep going, and imagine that sweet moment when my family is whole and together again.

Capture Your Grief- Day 11

Day 11--Altar



I remember talking with Matt at some point while I pregnant with Kale, or shortly after he was born.  I wanted to make sure we were on the same page in regards to how we display Kale in our home.  I felt there was a fine line of what to do to make sure we didn't have a shrine, and we were tactful in how he was represented here.  We certainly have plenty of items all over our house that remind us of Kale, but most people wouldn't realize it.

For example, the orchid plant on our end table.  Last year I bought the orchid because it was a beautiful blue color. The color reminded me of Kale, the orchid reminded me of my grandpa.  Kale headstone wasn't set yet and so I took one of the flowers and carefully stuck a toothpick through it and placed it on his grave.  The flower hasn't bloomed again, but it sits there and reminds me of him.

We have a blue paper lantern that hangs in our living room room.  It's always lit.  I could walk down in the middle of the night and our living room would have a very soft blue light shining. I love it.

And we have little things like that all over our house.  And I love it.  I wouldn't change it.  And we have things we're planning on adding too, projects that are half done and I need to finish.  I want to make a shadow box with his blanket, the outfit his wore, some pictures.  Lots of things.  As time goes, I'm sure I'll add things all over.

Capture Your Grief- Day 10

Day 10--Support

I have received support in so many places during this journey.  The best support, hands down, has been my husband Matthew.  I hear too many stories about marriages that are ripped apart when a child dies, and it breaks my heart.  And makes me so very grateful for my relationship with my husband.  I have been able to turn to him during all of it and not feel like I'm crazy for feeling a certain way, or reacting to something unexpected.  I know that at any time, I just can turn to him for a healing hug, or when I break down he knows he doesn't have to try to say something to 'make me feel better', because he knows it won't make a difference.  He helps me realize that when people say insensitive things that their intentions are probably good, they just don't know what to say, or realize that it could hurt (note: never start a sentence with "At least"). It helps me so much to have someone by my side who understands exactly what I'm going through, because he went through the exact same thing I went through.



I have also received support from so many family and friends.  They acknowledge Kale, and talk about Kale, which means the world to me.  They've let me share stories about him, even if they've heard them all before.  They've donated to the causes we've participated in his memory, giving me flannel to make bereavement items, or buying a tshirt for our Running With Angels event, joining with us as we do things to remember him.

And yes, we've also received a lack of support from people as well, which is hurtful at times, but I try my best to overlook the pain it can bring, and focus on those who genuinely support and care about us and Kale.  It's not always easy, and it is certainly painful, but I realize I can't let myself be affected by others that way.  I need to surround myself with those who will buoy me up.  And it helps.