Finding the “right” pieces…

Does anyone else feel like they have been chipped and sloppily super glued back together? Then as the next trial comes, that glue slowly starts to weaken so you slap some more on top but never really fix that chipped area. Leaving to fissure and spread? Anyone? Just me? Ugh…

Well my chips are multiplying and the super glue is trying it’s hardest but it just isn’t working anymore. Time for some real repair work in the next few weeks. What was the breaking point? Well not necessarily a breaking point but just another trial. Ollie woke up on Monday from his nap with a large lump in his malformation back by his ear. This has never been an area of concern and has never had any kind of infection present so we were definitely thrown off. It wasn’t presenting like cellulitis, which has been the case with every time he has had an infection. On Tuesday we called his specialist and they immediately got us in for a clinic visit as well as an emergent ultrasound.

Now this might get a little medical but I will try my best. Within Ollie’s cheek there are microcysts (small cysts), macrocysts (large cysts) as well as a vascular component (blood). We honestly kind of forget about his vascular component because there isn’t very much of that within his cheek. Well good old vascular decided to join the party. The ultrasound didn’t show infection which we are super thankful for. It did show a macrocyst filling with blood, pushing the rest of Ollie’s malformation forward, making it larger.

This kid was a pro. The area she needed to press on was extremely painful for Ollie. He never made a peep.

Can I be honest? I was hoping for infection…… why would I ever hope for such a thing? It’s known. His doctors know how to handle it, heck, we as parents know how to handle it. It’s a “simple” fix and something that he has had a number of times before. This, this is a such an unknown that it completely scares me, wet my pants, scares me.

Ollie is scheduled for an MRI under sedation next week Thursday. If you could add us to your prayers, that would be greatly appreciated. For right now, we are keeping an eye on the area. The way we do that is to use a surgical marking pen. We have used it for all of Ollie’s past infections. It helps keep an eye on the redness and possible progression. This time it’s harder because there is no redness, just an increase in the lesion underneath. But we are trying our best. That being said, in some of the pictures, you might see marker on his cheek.

Every time something new comes up for Ollie, I feel like I handle it with less and less grace. I’m not sure why, other than the fact that I just wish there were no steps back in his treatment. We were really hoping to see more of an improvement with his surgery in Boston and for a minute there his cheek was looking really good. With this new issue, I feel like it has put us right back where we started. Like we put our child through a surgery that did nothing for him. Now there really is no way to tell if that’s the case or not, just sharing from the heart.

So I guess I am cracking a little more these days. But instead of trying tirelessly to keep putting the pieces back, I am letting them fall. Because maybe those pieces are falling away for a reason, being pushed out of the way so that the right piece has room. Instead of holding on to past hopes and dreams that are simply unattainable, maybe it’s time to create new ones. Ones that coincide with the life that we have been blessed with and ones that will be truly fulfilling. The process might look a little scary and the recovery time long, but one day this girl will be full of all the right pieces.

6 thoughts on “Finding the “right” pieces…

  1. Awwww…..I love your perspective on letting the pieces fall and letting them go. Giving it to the Lord. Prayers for Ollie that this new health issue will be dealt with and resolved .

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  2. So sorry you have to go through this. Will definitely up the prayers for you all!

    Life is like a puzzle…hard to piece together, but beautiful when all the right pieces are put together! (author unknown)

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  3. Hang in there! I love your “cracked falling pieces” way of describing what you’re feeling. Our family is 19 years (as of tomorrow) in the “journey”. So many times we’ve road the crazy roller coaster. So many times we’ve had to mourn what could’ve been the life we expected for our child and our family. It’s never easy. We will pray for you and your family, for peace, grace and healing.

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  4. Prey for this brave little man n family. Who R so very brave n strong with a heart so full of love n kindness. Please prey to JESUS in the name of our god please reach to this little guy n hold him tight n heal his little self n the loving family please continue to prey !! Love you little man. 👼💖

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  5. Hi. I think it’s fair to say as Moms we are fixers. And when it comes to our kids we are relentless fixers. We will never ever stop. No matter how old our kids are. Whether it is a medical condition, an injury, disappointment or even a broken heart – our instinct is to protect and make it all better. Ollie is lucky to have you. When our kids hurt we hurt twice as bad. My daughter’s issue wasn’t something someone could outright see. She had a Neuroma in her right foot that came on at the age of 17. So incredibly debilitating and painful – her grit made her just deal with the pain so she could participate in her life and not be held back by it. It was so hard to watch. Her pain was heartbreaking. She was determined to snowboard, go on 3 Mission trips to Alaska, and even hike the Tetons. I however was in the background becoming an expert on Morton’s Neuroma. With only less than 40% success rate for surgery with lots of side effect complications – I was determined not to have her foot cut open and have her endure the consequences that might make her situation even worse than it was. We consulted with many Ortho Surgeons, tried orthotics, threw out all the “cute shoes” for arch support shoes, tried acupuncture – and even went to a very very old (cash only) podiatrist… A 3 year journey that finally led us to a chiropractor that gave my daughter the relief she has enjoyed now for over a year. Moral of the story – keep fighting for the answers. Keep looking for the answers. The path we took led to the result we finally found. I know you feel like you are gluing the pieces together and it’s all so overwhelming and makes you feel so helpless and frustrated and impatient because you just want to fix it for them! It’s that overwhelming love and compassion and empathy that is a Mom. Hang in there. Keep the faith. Your son is amazing and I can’t even imagine what his precious little self is feeling and going through. I know our kids expectations are so that the disappointments hit them so hard we ache for them. Y’all will be in my prayers.

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    1. Sandy, thank you for sharing your story. We all need to know that we are not in this (our individual situations) alone. I’m sure I speak for many others when I say that I feel you have definitely given us more hope. We just need to keep the faith and keep fighting. Blessing to you and your daughter.

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