Category Archives: Special Needs Caregiver

#CaptureYourGrief – Day #29

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What Heals You

#CaptureYourGriefDay29

So I must give credit for the basis of this quote to Walter White.  While I loved his quote, it’s language maybe wasn’t quite #CaptureYourGrief-esq.  I changed it a bit to fit me and the topic today.

Letting go of fear has been helpful in my healing.  After we lost Clara we spent a lot of time scared.  Each activity, pregnancy, birth, day brought out some of the worst fears.  I remember the first time Damon and Mason rode with someone else.  I wondered what I would do if they died too.  I just wanted to control every situation.

It didn’t take long to realize that wasn’t possible.  I couldn’t let those fears rule my life.  If I did I would rob my boys of the life experiences they deserved.  We were missing out on activities and memories that could be made because we didn’t want to risk anything.  Some “risks” are worth taking!

In the image I captured this summer, I saw my hesitant daughter fall.  Did she get cry? A little.  Did she get back up?  Yes!  She tried and tried until her fear was small enough that her confidence returned.  I chose not to step in and stop her from falling.  Instead we encouraged her to keep trying and to not be scared.  Eventually she did get it and she had so much fun.  If she had given into that fear she would have missed out on an afternoon or memories!!

Grief is much the same way.  We fear how birthdays and holidays will be.  If you ask most parents the anticipation is far worse than the actual day.  Grief is never easy.  We struggle to hold on yet we struggle to let go.

We fear the passing of current or future children.  What if they make a bad choice that hurts them? We worry about everything.  The thing is we can’t do that all the time. Yes, it is natural to worry a bit but not about EVERYTHING.  It will consume you!  It robs you of making memories or allowing them to make their childhood memories.

Throughout my journey I am constantly working on releasing fear.  There are days when I fall and have to get up, brush off, and start again.  The best days are the ones where I leave worry and fear in the shower drain and let the memories be made.

#WhatHealsYou

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#CaptureYourGrief – Day #28

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Reach Out

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Reaching out applies to grievers and everyone else.  I have been in the position where “let us know what you need” doesn’t get answered. I honestly didn’t know what I needed or what I needed that person couldn’t provide.  I was thankful for those who just brought food and paper plates and plastic spoons.  Someone even brought us toilet paper.  Others took the time to spend evenings with us.  I especially appreciated those who remembered us months after our loss. Those are the ways of reaching out, that were helpful to me.

Sometimes reaching out is simply reaching to your partner.  There were many times when the two of us connected and felt comfort.  I also remember reaching out to my husband and not feeling his hand hold mine (and vise versa). We were at places where we couldn’t be there for each other.  For me that was when I decided I needed to reach outside my comfort zone.

Social media has opened the doors for finding others who can help.  I liked the anonymousness.  The women I met never appeared to judge me and we grew together.  We leaned on each other in our difficult times.  Those moments are what sustained me when friends, family, and my husband couldn’t help me in the ways I needed.

The journey is long and along the path isn’t straight. As grievers we can get so lost in our sorrow that we can’t or won’t reach out.  This is especially true in the very beginning and, then again, when the world thinks we “should be healed”.  Remind yourself that it is okay to take a timeout in the trees but if you get stuck in mud, call out for help.  And friends, family, and outsiders… take the time to reach out when you are called to.  Sometimes it takes every ounce of courage we have to call to you.

#WhatHealsYou

If you have some free time listen to this song that reminds me of reaching out.
I won’t let go – Rascal Flatts

 

 

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#CaptureYourGrief – Day #26

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Gratitude

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Gratitude is more than being being thankful for the people who have helped me along the way. It is also about being thankful for the situations and small things that have been found in the storm clouds.  The most helpful thing for me during my times of suffering has been finding something good in the day, focusing on that, and being thankful for it.

After we lost Clara those good things were small.  A hug, not throwing up, kind words were things I started with.  They redirected my attention when by body reminded me that it was time to feed the baby that was no longer in my arms.  It was through finding things to be thankful for that I found a way to be thankful for those “feed your baby” reminders.  It gave me an opportunity to share Clara’s milk with others babies who were in need. We sent 356 oz of her milk to the Rocky Mountain Mother’s Milk bank in Denver.  (When Lincoln’s allergies were diagnosed I experienced a similar circumstance and we knew right away we would donate.  With him we drove 2,222oz to the University of Iowa Mother’s Milk Bank.)  There was great comfort and thankfulness found in helping others instead of dumping it all down the drain.

When I went back to work finding things to be thankful for became extremely important.  People made off-the-cuff remarks or condolences that weren’t exactly comforting.  I needed something, other than these, to hold.  Each night I would sit down and find my good things to set my heart on.  I tried to focus on how thankful I was that each person thought enough to stop by and remember Clara and less on their comments.   It was through this process that I was able to let a lot of things roll off my shoulders.

This kind of being “thankful for” is one I offer to many along the loss journey.  For those who dedicate time each day for their heart, there is comfort.  It won’t fix everything but it will help set your heart on a path to let go of the bad and cling to the good.

My husband and I have turned this concept into a bedtime routine for our children too.  Each evening we sit and pray thanks for the things we are “thankful for”.  Sometimes the kids are thankful for things, other nights it is deeper.  It depends on their age and the type of day they’ve had.

We have learned a lot about our kids through the prayer time.  We see what makes them happy or sad.  We hear their pain when they ask if they can pray for someone else.  The best thing is they go to bed and wake happier.  We get to see little pieces of their big hearts.

My experience with setting my heart on the good has helped me in other situations in my life as well.  As we deal with Lincoln’s health, it helps to focus on the good things.  When we heard the news that Lincoln wasn’t ever going to be able to use the bathroom like a normal boy, it was devastating.  When we started doing clean intermittent catheterizations life was in turmoil.  By the end of the first week, we noticed a huge change in our little boy.  He was calmer and better behaved.  For the first time in his life his bladder was empty after he relieving himself.  It was in that good that we found comfort in the sadness. He was actually happier!  That is what we chose to focus on.

Today I don’t need to set aside as much time for this but I still use it to help me through so many situations of life.  I am grateful for the changes and comfort my family has gotten by actively being “thankful for” things in our lives.  Sometimes our gratitude is small, sometimes big.  Either way filling your heart with good things leaves little room for the bad to get in there and fester.

“Fill your heart with what’s important…
and be done with all the rest.”
Unknown

#WhatHealsYou

 

 

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#CaptureYourGrief – Day #25

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Earth Remembrance

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Earth remembrance is geared toward planting a tree or plant in memory of the baby lost. It helps as we watch it grow in a time when we are no longer watching our children grow. I think it is a great way to heal.
 
When we lived in South Dakota, we had many flowers and a tree planted in memory of Clara, our miscarriage, and my brother. A lot of thought when into selecting just the perfect one. We had “Baby Love”, “Superhero”, and “American Beauty”. Of course, we also had her tree. It was sad when a rose bush died and had to be replanted but every time they bloomed it made me smile.
 
This year planting a tree or flower really isn’t in the cards. I thought about planting something indoors but we just don’t have the space. I guess I had a lot of excuses for why I “couldn’t do it”. The more I thought about planting seeds to more I realized that sowing seeds and seeing them grow isn’t just an physical thing. Instead of planting something to bring me comfort, I hope to plant a seed of hope for someone else.
 
Every deed is a seed. I really like the idea of planting seeds of hope. The hardest part of planting those seeds is you don’t necessarily know where you are planting them or how they are growing. Unlike the tree we plant outside, these seeds grow in so many different ways. Often we think we are witnessing those seeds grow but so many more times, we do not.
 
I think this project is a seed of hope for many whether they are participating or simply following others through it. We aren’t all equipped to share our lives and hurts. Even if we can’t share it can be comforting and healing to read other’s stories. For me sharing helps water the seed inside me. I know from some of you that it waters others’ as well. Those reminders make this project worth every bit of extra time it takes each day.
 
We will never know how many seeds of hope have grown without our eyes seeing. I am hopeful that those participating and following the #CaptureYourGrief project find a place in their hearts for that seed. I hope they find water to grow it, and in their time, are able to share it with others. That is the seed I hope to plant today, throughout this project, and the rest of the days of my life.
 
#WhatHealsYou
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#CaptureYourGrief – Day #17

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Secondary Loss

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Who doesn’t want a fairytale?! When we first find out we are pregnant we imagine the journey. It is one of glowing, and growing.  We put together a beautiful nursery and a calm, yet perfect, birth plan.  We expect a happily ever after.

Things don’t always go as we plan.  Some suffer from terrible morning sickness, others from any myriad of conditions that can affect pregnant women. Then there are the losses of our precious babies.

Sometimes your loss happens before it begins.  We struggle with getting pregnant or staying pregnant.  We endure tests and procedures.  Needle pokes and medication regamins and in the end we still walk away with an empty womb and aching arms.

Maybe your loss happens very early on.  We go to the doctor anticipating our first peek only to find out our baby is no longer growing. For some a loss happens later along the way.  Maybe you have gotten a fatal diagnosis at your 20 week ultrasound.  Going home to decide where to go with your pregnancy.

Maybe your baby arrived too early.  Even if you baby survives the first few days, navigating the process of a NICU baby is extremely difficult.  It has lasting effects on your idea of pregnancy and motherhood.  Whether your baby survives or is too small to, mom goes home empty handed (at least for a while).

Maybe your past those “risky” parts.  You are well into your 3rd trimester. You are playing with your baby as he kicks through your growing belly.  Then one day baby isn’t moving like normal.  You visit to the hospital.  You listen to the other babies cry while pleading with your baby to.  You leave with an empty belly and empty arms.

Maybe you find out at birth that your baby is sick or has a congenital or genetic condition. Your whole world is changed. You don’t get to hold your baby like you thought you would. You spend time talking to doctors and watching you baby get poked and tested. You listen to diagnosis’s and life expectations and futures that might not be.  You might go home with empty arms or you might go home with a baby in one arm and equipment, paperwork, appointment lists, and expectations in another.  Each illness you worry that this could be the one that can’t be fixed.

Or maybe you brought your baby home.  He was healthy and thriving. Then one day they are gone.  They go to sleep and don’t wake up.  Or maybe there was a missed medical diagnosis or a tragic situation.  One day you return to the hospital only to leave alone.

In any of these, our dreams of “Happily Ever After” disappear.  Evaporate!  No first steps.  No first day of school.  No graduation.  No sports or dance.  The loss of our “happily ever after” becomes a secondary loss to the original loss of our babies.  It simply becomes our “once upon a time”.

I loved my little world where everything appeared perfect. I loved the world of writing happy memories in a baby book. When Clara died I was unprepared for her loss and even less for the secondary loss.  I didn’t realize just how many babies didn’t make it to their first birthday. So many baby books left unfinished.

Today instead of having a baby book full of memories it is has less than 10 pages filled.  Many pages have a line or two filled in and dozens more that will never be written. On the shelf with her baby book sits 3 other books completely filled.  The thing is they aren’t of the memories I dreamed of writing.  They are filled with three years of #CaptureYourGrief projects.  They are my “once upon a time” books.  Once upon a time I held this baby in my arms.

In a good way the books remind me that there are no happily forever afters but the once upon a times can be beautiful too.  The journey, the people along the way, those are the things I want to remember.  It reminds me that maybe it isn’t always about the happy ending, maybe it is about the story.   A story that brings comfort to others.  One that reminds them they aren’t alone.  Their fears are real.  Their dreams are missing.  But their children will never be forgotten.

#CaptureYourGriefDay17

 

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#CaptureYourGrief – Day #16

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Creative Grief

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To so many “rainbows” refer to children born after the loss of another.  In that respect I have 2 rainbows… Lincoln and Haleigh.  I honestly have never referred to them as that though.  I never wanted them to feel second to the loss prior to them.  Not that that is how they might feel, I just really never felt they were a rainbow although they certainly brought joy and happiness.  My rainbow just came in the form of something else.  Cakes!

It was after Clara’s passing that I really got into cakes.   On her 1st birthday that I realized how lucky so many of us are to reach this milestone each year.  It was on her second birthday that I made a Barbie cake in her memory.  Each year I create another Barbie cake with a different dress.  It often reflects my ideas of what she might be into or have asked for.

In the loss I felt for both Clara’s life and the dreams I had for Lincoln an outlet grew.  I found the creative outlet for my grief and stress.  I had no idea that these cake skills were buried deep within me.

I have always suggested that the more stressed I was, the more heavyhearted, the better the cakes turn out.  Many of my most favorite cakes happen to also be 1st birthday cakes.  They remind me of just how special each of those families are.  I love seeing parents share pictures with their grinning birthday kid and their cake.  Those are memories they will keep forever!

I often get asked why I opt not to do many weddings.  It is, on all accounts, where all the money is.  I guess as my children get older and the thought of Clara’s missed wedding get closer I might shift my heart toward them.  Today though she would only be six and birthdays would be her big days.

Creativity will always be my rainbow.  My sunshine after the storms, my expression of love and grief.  I am forever grateful for the gift that was buried deep inside and for the opportunity to see it open and blossom.  It has become a way to share Clara’s memory with others.  It is a way to share in the celebrations of many that I miss out on with Clara.  It mends my heart.

“Rainbows introduce us to reflections
of different beautiful possibilities
so we never forget that pain and grief
are not the final options in life.”
― Aberjhani

#WhatHealsYou

Day #17 Birthday-Anniversary

The 1st Barbie cake created in memory of Clara.

Clara's 6th Birthday cake - Jan 2015

Clara’s 6th Birthday cake – Jan 2015

Clara's 5th Birthday cake - Jan 2014

Clara’s 5th Birthday cake – Jan 2014

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http://happycakebaker.com
https://www.facebook.com/happycakebaker

 

 

 

 

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#CaptureYourGrief – Day #13

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Regrets & Triggers

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What might have been…the trigger of all triggers.  The little girl dancing on the playground.  The first day of school each year.  Seeing girls scouts and gymnasts.  They all set off emotions for me.

For the most part enjoy watching others reach these milestones.  It is bittersweet.  I wonder about what Clara’s likes and dislikes would be.  Would we have Lincoln, would our lives be that different?

Yesterday as I was thinking about today’s topic I looked outside at our slide and immediately knew the image I wanted to capture.  The backpack and doll suddenly dropped near the empty slide.  It reminds me of the suddenness of Clara’s passing. How quickly she entered and exited our arms.

The empty slide are all the memories of a toddler and preschooler we missed.  Her first words, first steps, first sentences, exploring, running, playing, preschool papers, coloring, and dress-up.

The backpack represents what she would have been now.  A first grader.  Would she be a righty or lefty? We missed her first bike ride, first bus ride, first day of school, school pictures, doll time.  Would she be a dressy girl or sporty one?  Would she love dolls or balls?  Who would be her best friend?

While triggers pull at the heartstrings, regrets bring on guilt. A kind of guilt that can be so overwhelming it can consume our lives.  It can lead to relationship problems, self worth issues, and even self medicating troubles.  It can also be used in a positive way to help us make changes in our lives for the better.

I think like most people, I have regrets.  Both Chris and I spent a lot of extra hours working.  I found myself less patient.  Her passing changed our outlook.  Chris became less content with 60 hour work weeks, myself of working 12 days in a row.  When our next child was born reality set it that we both needed to make a change.

We can look back and think about the what if’s but the best thing we can do in memory of our little ones is change the regrets that we can for the future.  While we can’t change these regrets for the child we lost, we can use them to positively impact our daily lives now.  By doing that we turn the negative feeling of regret into a more positive feeling.  We see our child’s memory live out in a way that we can look ahead and say, “Their lives continue to be a part of my future.”.  In a way it helps us heal.

I am not saying that a trigger won’t come along and make us feel regret or bring bittersweet tears to our eyes.  It just means that those regrets won’t eat you alive because they will if you let them.  Today I made a list of regrets and changes.  It is good to see the changes our family has made to our regret list.  I see some places where I would like to see more changes and a few that I simply cannot change.  In that list I feel Clara’s memory alive and ever present in our daily lives.  It is just one way I feel her life impact mine six years later.

#WhatHealsYou

 

 

 

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#CaptureYourGrief – Day #12

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Normalizing Grief

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Normal: Adj – conforming to the standard or the common type; usual; notabnormal; regular; natural.

While grief itself is a normal part of death, the death of a child is not normal.  I messes with the delicate balance of life.  We as parents are supposed to outlive our children.  There is nothing “normal” about them dying first.  No matter the mother you speak to, the country they live, or how many children they have seen pass, one thing is certain… the death of a child is never and should never be considered normal.

When I read today’s topic I bucked the “normal” part right away.  I feel like it is the wrong adjective to describe grief for me.  To me a better description is “accepting grief” or “acknowledging grief to the fullest”.

This morning as I searched my heart (and google) for the quote that most fit how I felt about this topic I found it hard to put words to.  C. S. Lewis wrote in his book A Grief Observed, “No one ever told me that grief felt so like fear.”  So true he is.

As parents we will acknowledge our children’s fears. Sometimes those fears are founded and other times they seem so insignificant.  After a while, and as our children grow, we feel they should be growing out of those fears. We will try to squash the fears, telling our kids there is nothing to be fearful of anymore. I am guilty of this with my own children.

As I look at grief, it is accepted in the days, weeks, months, and up to a year or so after a child’s passing.  After that, people are less likely to acknowledge or accept your grief.  They feel that it is something that should fade into the background.  To so many, grief shouldn’t last forever.

With a fearful child we often try to protect them by never mentioning their fears.  We avoid the topic as much as we can.  We wait until the last minute to tell our children that they may have to face a fear today.  Maybe it is because we are trying to protect them, maybe to protect ourselves, sometimes it is just to prevent tears.

Grief is much the same way.  People avoid talking about the missing child.  They are afraid to bring up heartache.  They don’t want to feel awkward.  They don’t want to bring tears.

As I have dealt with the fears of my five year old during his countless doctors visits, medical procedures, and surgeries, one thing is certain.  We must acknowledge AND accept those fears. It is in accepting that they are real that we truly acknowledge them.  It is the most important step in healing.  My views on Link’s fears has changed along the way and as they have so has his own comfort level with them.  Today he is not afraid tell us he is scared.  We are not afraid to tell him of an upcoming procedure or appointment or surgery.

I think the same goes for grief.  When we know that our grief is accepted and acknowledged we can move forward.  We can feel free to share our child’s memory.  We are more open and honest.  We feel more comfortable and loved for who we have become along the way.  We feel less judged.

As we walk through our fears and grief, one thing is very true.  Both will change over time.   Acknowledge that our grief is real and intense and varies from person to person.  Accept that we will have bad days and good days.  Acknowledge birthdays and special moments of our children no longer with us.  Accept the tears of love when we talk about the little ones we no longer hold.

Acknowledge that unlike most fears, grief never quite goes away. Grief simply changes over time.  Accept that grieving mothers will never quite be the same as they were before their child(ren) left their world.

Grief changes us.
The pain sculpts us into someone who
Understands more deeply,
Hurts more often,
Appreciates more quickly,
Loves more easily,
Hopes more desperately,
Loves more openly.

 

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#CaptureYourGrief – Day #11

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Light in the Woods

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My life in the woods was Bri.  We received a care package from Lach’s Legacy soon after Clara’s passing.  That year she held a the first annual Run for Their Live’s run.  Started in memory of her son Lachlan, she opened the door for families to connect and remember each others children lost too soon to SIDS.  That first year the run happened just a few short weeks after Clara’s loss.   It was during that run that I realized our children were lost on the same May 12th day a single year apart.  I felt so connected.  In particular, I felt connected to a family member of hers who began running along side me around mile 1.  He asked me questions about Clara.  He encouraged me to keep running even though I was so tired.  I literally got off the couch and ran a 5K that day.   Together we finished together in around the 28 minute mark.  His comfort and encouragement became the second light along my path.

Grief doesn’t have a finish line like the race.  I often remember the man who encouraged me to keep going.  Not only did it give me strength and courage that day, it gave me that through my loss.  I remember the first time I had to call another mom and talk to her about the loss of her sweet Paxton.  It was this mans words that helped me.  It was a prayer to for God’s wisdom that gave me the right words to give from my heart.  It was because of Bri that these lights came into my life.

Today social media makes it so easy to connect with others along our journey.  Sometimes we seek out those lights, other times they seek us out, once in a while we are connected by those around us who see a positive connection.  Connecting grieving friends can be a positive way for someone who is outside the infant loss community to help their friend or loved one.

Grief doesn’t come to each of us in the same way.  There was a time when Chris and I were not in the same place and my needs couldn’t be met by him. It was through social media that I met another light in my journey.  It was Sara’s light that kept mine lit through some pretty rough patches.  Her little Eli was born just a day after Clara.  Together we have shared many words of frustration, comfort, and friendship. We experienced another pregnancy together and shared our fears and comforts.  She is one of the lights whom I have never met but wish I could.

Some of these lights are there forever on our journey. Others for just a few steps.  Sometimes we simply watch the light, feeling it’s warmth.  It fills us in the way we need.  Other times we reach for the light.  Communicating with that person.  Once in a while we get to meet that person.  We embrace.  It is an amazing feeling when we feel that light that has gotten us through our woods.

Don’t wait for other people to be loving, friendly, giving, forgiving, or compassionate… lead the way.  You never know who you will touch along the way.  Be a light in the woods.

Praise be to the God,
 who comforts us in all our troubles,
so that we can comfort those in any trouble
with the comfort we ourselves receive from God.
2 Corinthians 1:3-4

#WhatHealsYou

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#CaptureYourGrief – Day #5

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Empathy

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One thing I have learned along the way is that acknowledging bereaved parents feelings is so much better than saying “you will be okay” or “It will get better”.  As bystanders we often want to do anything in our power to make someone feel better.  It is a challenge to say that a child dying isn’t okay without insisting that it will get better.

I have heard the cries of a mother holding her child and screaming.
“This it isn’t fair.”
“God why my child?”
“Why this way?”
“God Why?”

It reminds me of the numerous times I have read the words
“My God, My God! Why have you forsaken me.”

There are several times in the bible where these words are written.  Even Jesus spoke those words as he suffered at the cross.  In his pain he questioned why.  Did Jesus too feel forsaken at a time when he needed God most?

We know that when Jesus cried out, “Why have you forsaken me?” it was because He was experiencing a brokenness in His relationship with God the Father that they had never before experienced. He knew that God had not finally and ultimately forsaken Him, and He knew that He would be raised again in three days, but the cry of Jesus from the cross is not about those things, but about the separation from God He experienced for the very time in all eternity.

When we cry out in our loss we too are feeling a brokenness in our relationship with God.  Loss, especially the loss of a child, is a time in life where so many question God’s love.  We feel deserted by God, isolated from others, desolate in our hearts.  We often just need someone to recognize that we feel broken.  We need that reminder that even Jesus asked why.  We need to have time to feel angry, sad, and to question.

Just as Jesus wasn’t forsaken, neither are we.  However we need to be allowed to feel what we feel.  Deep down we already know that someday our hearts will hurt a little less. Eventually we might even need that reminder that God has never left us.  Somedays though, we just need to have someone stand beside us and acknowledge that today things aren’t okay.

“There are no quick fixes to grief. No easy answers.
Every expression of grief that wants to be felt and honored and given space, must be allowed…
in order to heal.”
Tim Zuba
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