“Brave little soldiers” and “taping the door shut” . . . where do I fit in in all of this? (having a sick sibling, through the eyes of a child)

I have a very young friend who hurts, she can’t really talk so she doesn’t use words to describe her pain, she just says, “Ow.”   Little emilyannelove has childhood leukemia and she is only, barely two years old.

“We all know that she is uncomfortable, even in pain. Her body is covered in bruises and she rarely eats any solid food. She has periods of high spirits in which we all get to laugh and play but in the back of all our minds, we know Emily is a very sick girl who is fighting so very hard to get healthy.”  Emily’s Auntie Plum writes for her, Auntie Plum uses words that Emily can’t express.

Auntie Plum wrote today and my heart aches for emilyannelove and my heart aches for her mommy and my heart aches for her daddy and my heart is sad for her brothers and sister.  If I could just scoop them up and mend their wounded, worried hearts . . . If I could surely say, “It’s gonna be just fine and Emily will get well.”

Can you image being a parent of a critical ill baby?  That’s really what Emily is, a baby, ok, a toddler.  Can you feel the pain that Emily’s mommy and daddy had when they heard their last born baby girl has leukemia?  I can’t even imagine, my heart can not absorb the depth and drowning feeling that my baby is sick and in order to have a fighting chance she will need chemotherapy – and there are no guarantees that medicine will “cure” my baby of cancer.  Can you empathize with them?  Have you felt their pain?  Have you had a critically ill child?

I am so sorry for Emily’s discomfort, Mom and Dad’s weariness and brothers’ and sister’s “bravery.”  I was so moved yesterday by the most recent post that it brought back childhood memories.

“This effects no one more than Emily’s immediate family. Her siblings, who may not fully understand what is going on, definitely know that Emily is struggling. When Emily and Christina had to go to the hospital at the last minute this past Thursday, Adam taped shut the front door and made a sign indicating the hospital was in the back bedroom – his own quiet way of saying he is tired of his momma and sister having to go away so often.”

The italics are mine because I know Adam’s pain and in reading that sentence my memories were triggered.  There is a need and an importance in informing caring adults about the siblings of a brother or sister who is critically or traumatically ill.  As children, we have a voice and we want to use our voice but in our lack of understanding and the need to be “big girls and boys”, we hold back our fears and worries.  Maybe this post will bring to the attention to the adults that surround the siblings the importance of coming alongside them, too.

the Love family on a little get-away

the Love family on a little get-away

I wrote to Auntie Plum . . .

“I really wish I could say it is going to get better soon.   Sometimes it seems darkest before the sunrise and day light.  I am hoping that this proves true for the Love family.  I just can’t imagine having a sick little one with cancer.  As an adult, it was rough.  I could use my words to describe my pain and the nurses would work with me in finding the right relief for the pain.  I could also describe my worry and fear, my weariness and weakness; all of you have to fill in the blanks for Emily.

I am very empathetic with the siblings.  I didn’t have brothers with cancer but I had critically ill brothers.  My brother, Scott, was diagnosed with severe asthma when I was 5 years old.  From that age until around maybe 12 years old, life was hectic, sacrificing and at times, confusing.  As the oldest and big sister and as the “well” one, my little kid way of “helping” my parents was to keep my worries and “this is unfair” feelings to myself.  I became the big girl, self sufficient and self entertained sister and daughter.  As a girl I didn’t understand.  (I was going to finish that sentence with what I didn’t understand but that is about it, I simply didn’t understand.)

I had to give up many things and the one love that broke my heart and the memories can still make me cry today is I had to give up my horse, Lady, my tie to my dad.  I was at an age where my dad and I could start riding together but because my brother’s asthma was so bad, I had to sell my horse.  I’ll never forget that day.

All this to say, the Love family is so blessed to have aunties and uncles, cousins and grandparents surrounding them and living right there close by.  Please I’m not trying to meddle but I understand why little brother “taped the door” shut.  I encourage all of you to spend time with your nephews and niece – alone time, one on one.  Even if they can not express themselves because they think they need to be brave little soldiers, give them the opportunity to talk about their fears, worries, “it’s not fair”ness.  They don’t understand, just like I didn’t.  We need to put up brave little fronts and all the while we don’t understand.

I totally understand Mom and Dad Love are tired and all their attention MUST go to Emily but all of the extended family members’ attention can go to the siblings.  Take them on “dates”, make them feel not forgotten in the midst of chaos.  Validate them as an important family member.

I didn’t have extended family members to give me what my little girl heart needed, I was all alone.  I was a good daughter, I learned to play by myself and “go with the flow” of emergency trips to the doctor’s office as my brother could hardly breathe or receiving the news as a “matter of fact” that my brother was spending another birthday in the hospital.  (I just can’t imagine how my parents dealt with this . . .)

So love up those siblings!!  They are treasured and valued and important!!

Please know, my prayers are with all of you.  I think one of the most frustrating aspects of cancer is those who haven’t had it or had to deal with cancer  in their family does not even know what you are going through; I feel the only time they will understand the gravity and “aloneness” of cancer is if they should have to personally experience it.  That seems so crass to say, but I am finding that true.  If I could, I would have every one of my readers take up the cause and fight for Emily – some how, some way.  But if they can’t empathize, their compassion and understanding just isn’t there.  Many shy away from cancer, they don’t want to get too close and they hope it never, ever happens to them.  I know, because that was me before cancer.  I would say, “Isn’t that too bad, I feel so sorry for them.”  But now I know and I am 100% behind the Love family and little Emily.

This topic needs to written about, if I can help just one family . . . My mom reads my blog and I know this will hurt her as I share my story and she’ll think she is to blame but she is not, nor my dad.  My parents were young and they did the best they could with what they had and what they knew.  We were not a young Christian family so the purpose and peace was lost, but maybe now it is found in that I can write about it bringing enlightenment to family members who are traveling on this “twisted and bumpy” road and hope to siblings who follow along because that is all they can do.”

So, to anyone who reads this and is in a similar situation, ask the adults who support and surround your family to help you.  In a sense, ask your children’s aunts and uncles, grandmas and grandpas or very dear friends to “adopt” your children.  You haven’t failed!!  You are exhausted, worried and never know from one day to the next what will happen; nothing is secure or dependable, the calendar is thrown away, you have no control and control is equated with confusion and perhaps chaos.

You haven’t failed!!  You are doing your best with what you know and with what you have!!

“None of us can understand why Emily has Leukemia. Why a child with so much life and spirit is struggling and suffering. But it is clear that God continues to watch over Emily and her family. He has surrounded them with family, friends, and strangers who provide meals and childcare; donate blood and platelets; offer financial support or the gift of a weekend away or a night out; who constantly are praying and lifting the family up to God; who give hugs just when they are needed most.”

little emilyannelove

little emilyannelove

And for those who care and wish they could do more, reread the last paragraph.  Even though you can’t quite empathize or completely understand the pain and struggle your family member or friends are experiencing, you can help!  Surround them, surround them with your love!  And relieve them by investing your time and self in the siblings that are trying to find their place and role in such uncertainty.

God bless the Love family and may Jesus continue to hold little emilyannelove in His everlasting and eternal arms.  And my love to her brothers and sister, you are good and brave little soldiers!

1964 – when both my brothers were sick. One was “wheezy” and the other had a “hole in his heart.”
More recent and very happy times!
I love my brothers very much . . .

1966, eight years old.
My horse, Lady.

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3 comments on ““Brave little soldiers” and “taping the door shut” . . . where do I fit in in all of this? (having a sick sibling, through the eyes of a child)

  1. peaceforthejourney says:

    Powerful words of encouragement. When one family member has cancer, all family members do to! We cannot forget the great need that rests on all of these families. Thanks for sharing.

  2. gabrielle ingram says:

    Thank you Cyndi. As I lay hear reading this, I can hear Emily’s brothers, Ethan, Adam and William, working on a puzzle in the living room, and Emily’s sister Sophia, softly snoring in the bed next to mine. They “moved in” yesterday with Jason working and Chrissie in the hospital with Emily, and are far from the original excitement of a new house. Last night was filled with a lot of questions and clarifications on what is going on right now and just what it all means. You have been so helpful in reminding us that sometimes sensoring things, trying to protect them from reality, lends their minds to work it out on their own which is often scarier than just being told. They are such troopers, so wanting to help in any way possible. The boys carry around a small video camera to record the special things in their day; at the various babysitters houses, at my house, at the grocery store, to show their mom when they see her next.

    Your post brought tears to my eyes and I thank you for tackling this topic, a tough one indeed. The sentence that stands out to me is the message to the parents, ” You haven’t failed!! You are doing your best with what you know and with what you have!!”

    Thank you,
    Gaby – another Auntie 🙂

  3. auntieplum says:

    Thank you for this Cyndi, I pray we all take up the cause – not only of Emily, but of every sibling also affected.

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