Happy Thursday everyone! Hope the last two weeks have gone well for everyone. We have been enjoying some sunshine the last few days. It has been a wonderful gift!
I’m just going to jump right in here. I had a whole blog about expectations/ unrealistic exceptions that I wanted to write but that just isn’t what is on my heart tonight. So bare with me as I divert here and share about an experience the boys and I had today.
The boys and I met my dad at a local bakery not far our house. If you live in West Michigan, you have probably heard about Marge’s Donut Den. It’s amazing, not just the donuts but the atmosphere itself. Very welcoming and full of life. Anyway, we were there in the afternoon, so it wasn’t very packed. We enjoyed our donuts and the boys started to wander the shop. Checking everything out and talking up the locals. As I followed behind them, I heard a gentleman bark . “What’s wrong with your face?” Declan happened to be directly by this man, so I went over and kindly told him that Declan had clearly devoured his donut and that was chocolate smudged everywhere. He frankly told me that it wasn’t this son of mine that he was referring to but rather Ollie.
I’m going to be real here. The mamma bear in me surfaced real fast as I kindly tried to explain how Ollie was born with a Lymphatic Malformation. The man couldn’t believe that we had let Ollie suffer for so long and told me to just find a plastic surgeon to take care of it. I tried my best to share with this man and finally opted to gather the boys and leave.
To be honest, I cried my way back home. How dare he talk to my son in such a way How can we live in such a world where malformations and birth defects are so prevalent and yet not have the tact to ask questions in a kind manner? I am all for answering questions and sharing about the bubbly kid I call my own. But I despise the rude and hurtful comments that fly out unchecked.
The world I want for Ollie is one that accepts him for who he is and not what he looks like on the surface. This is an unrealistic expectation and one that I battle every day but I will keep battling. I will keep telling my kid that he is smart, kind and handsome. I will not let simple minded people get in the way of my brave, confident little man.
That was a bit of a rant and I am sorry for that but it was something that I needed to get off of my chest. Writing is truly a way for my soul to heal. Honestly, Ollie and Declan are happy, outgoing souls that find joy where ever they go. As of right now, they aren’t bogged down with negativity or thought to be self- conscious. The negative people are few and far between but the after effects are still felt by this mamma.
We have found wonderful places to go that the boys can just be boys. One of those places is the Children’s Healing Center, in downtown Grand Rapids. It is a place where every child is affected with an illness or malformation or they have a sibling that is affected. We have loved getting to be a part of that community and the boys have learned so much.
So here is to choosing our words wisely. To realizing what unrealistic expectations are but never giving up hope. Keep enjoying the sunshine when it comes and embrace the negativity that is bound to pop up but never let it fester! Release it and move on! Thanks for letting me share this moment with all of you. Have a blessed two weeks!
We love your family and we will keep praying for kindness to surround this sweet boy. Count on our friendship!
Love,
The Barbers
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BREATHE ~ hold your little family with tenderness !
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I’m so sorry yo u had to endure such insensitivity. Your little guy is so precious as are you and your whole family. Hugs!
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Thank you!
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I am so deeply sorry to read this. I don’t think you know me, but I’ve worked with Ollie before at church. He’s such a fun, silly, talkative, sweet, beautiful little soul. Please don’t let this insensitive man bring you down. Ollie is absolutely adorable and a precious child of God. XO
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Thank you Amy!
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I luuuuuv your bubbly kid and have been so blessed to have been touched by him. Thank you for being an Ollie Mom!
TBH I was always thankful, grateful God never made me have to be an Ollie mom, struggling through childhood illnesses, genetic issues, translocations or visible differences. I used to think it was because I was small that way and God does not give us more than we can handle. And I knew I could never handle THAT sort of thing.
And then God does His thing in my world….. through the nasty ugly imperfections that wounded and cut my baby boy deeply from the inside out. He was so beautiful on the outside, but in 15 years, became so mean and selfish and ugly on the inside……not the beautiful Ollie kind of personality I thought I was blessed to raise.
I look back on the last 20 years of sacrifices that made no sense to even myself. I review the raised eyebrows and hear the judgemental comments. And through all the anguish, hurt, uncertainty, was I was doing the right thing in so many of every situation, I can finally stand today and say “I did the right thing!”
Every time!
I did the right thing.
I am me and God chose ME to be the mom for this boy because He knew I was the one who could love this kid unconditionally, especially when nobody else could stand him.
I could go on with nasty circumstance after ugly experience, of my fragility and faith in this journey. (Trying to keep short my words here but need to heart sister hug you).
I have not trekked my walk with the grace and dignity of Ollie’s Mom. But I have learned from you and been strengthened by you.
I did not have the visible battles that Ollie moms face, but the physical, emotional, spiritual, financial tolls bankrupted each of those areas in me over and over again.
Today, I have pride without guilt, without shame or pain in God’s miracle I call my son. He has more to work on, as does every soul. But I am so grateful I have always seen him through God’s eyes and can smile when I say “this is my son, in whom I am well pleased”! I am peaced and blessed by how God turns stuf into awesome…. every time.
(I feel sad for that man that maybe he did not have an Ollie mom.)
I Love you Ollie’s Mom!
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Thank you!
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Our Declan has a sibling with lymphedema too! Immy, our daughter, has it in her left leg
Keep fighting the good fight, Mama Bear! Some days are easier than others but know that other lymphie moms understand and are behind you.
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Thank you Heather! Its so nice to have people who understand!
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Hello. I came across your blog and just felt led to reply. God Bless you and your family. I have Lymphedema as a result of cancer surgery. I belong to a FB group called Lymphie Strong Inspiration Group. It’s full of wonderful, encouraging people from all over the world, including parents of children born with Lymphedema. Just sharing in case you’re interested. Take care and God Bless.
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Thank you for reaching out LuAnn!
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