Quality of Life

Our Thanksgiving week was an absolutely wonderful one! We had several friends stop by to see the boys this week, many of them haven’t had the chance to see them in several months. Malachi was giddy with the company and Levi morphed into the tour guide/boss/man of the house.

Levi has been hijacking my phone and taking about 300 pictures a day. Most of them are of his foot but every now and then he has a hidden gem in the mix. This photo was this week’s.

Our very special friends that babysit the boys for us came by Tuesday and let Jake and I sneak away for a date night. It still feels so unnatural and alarming to be out and about without either child, but also so refreshing to be responsibility free for a few hours. Even when I am sleeping I am listening for seizures, feeding pumps, and vomiting so there never really is a chance to shut off the mama medical brain. I cherish those breaks.

Jake’s family came into town this week and the boys loved having the company! Malachi and Levi spent most of the week playing with cousins and fighting over the attention of grandparents. And they slept GREAT this week because of it.

I am still working as the church secretary but we don’t have established office hours anymore due to COVID. I do most of the duties from home, and end up in the office 3-4 times a week for quick tasks. When Jake is off I take the opportunity to go to the office for a few hours and make sure everything is running as it should be.

And now we are on to Christmas season! As each year goes by Jake and I continue to evaluate what we want Christmas to look like for our family. One of the non-negotiables each year is doing a family Christmas service project. I always want my boys to prioritize giving to others in need rather than focus on “getting”. In year’s past we have been in hospitals for the holidays and seeing and experiencing the darker side of holidays has been an eye opener. We typically try to come up with a project for the local NICU but this year we have such a unique and special project picked out!

A few months ago I had a high school friend reach out to me asking about the possibility of getting a wheelchair for a 5 year old boy with special needs in a remote village in Uganda. The more I researched Uganda the more this story tugged at my heart. If you want to have a heart check moment read this article for reference:

https://www.irishtimes.com/life-and-style/health-family/the-hidden-disabled-children-of-uganda-1.4370676#:~:text=Disabled%20children%20rank%20among%20the,out%20of%20sight%2C%20or%20worse.

This little warrior boy seems to be very loved by his family, and they do not currently have any equipment or resources to help with his care. Jake and I spent some time in prayer on how to help, and we feel very strongly that this is meant to be the Carroll Christmas project for 2020.

There are a few details that complicate things slightly. We can’t ship anything overseas to him, so the equipment needs to be compact enough for our missionary friend to take it with her on the next trip in February.

The wheelchair specifically has to be compact enough to fit in the trunk of taxis or they will refuse to transport it. It also has to be able to go off road and we will need to send extra tires for the rough terrain.

We have made our wish list and as we always do we want to open it up to you all as well if you feel led to donate towards a specific item. You can message us for an address if you want to send a check, and paypal is always an option at jacobandleah@gmail.com

So far we have fully funded a bath chair, a portable seating option, an exercise ball, and some small toys that will be helpful with his cerebral palsy limitations.

We are still working to fund the wheelchair stroller and have $100 so far.

We are also hoping to purchase this tree branch swing for him as we know how much Malachi enjoys swinging!

On the cheaper side we have Easy Holds to help him with utensils.

And the final item on the list is some of the super cool bibs we have custom made for Malachi! Our Uganda buddy is also a drooler and we hope it will help cut down on outfit changes and laundry.

There is no pressure to donate, but we thought we share this unique opportunity with you all! I love that we can enrich the quality of life for this boy and his family with some simple pieces of equipment. We are also planning ways to make sure this family realizes how much God loves them through this project.

I have a love/hate relationship with the phrase “quality of life”. It has come up in conversation in meetings with doctors more times than I care to count. For each child it was focused on different things, but I can tell you that with both boys the phrase was used with a negative connotation.

The phrase almost had a haunting nature at the beginning of our journey with Malachi, playing in the background of my thoughts during each big medical set back.

For Levi the phrase was used as a weapon by dozens of doctors and nurses as they pressured us towards putting a trach in Levi’s airway. We were told that it would enhance his quality of life.

Even typing that last paragraph caused reflux to brew up in my throat. I guess the love/hate relationship I just mentioned is actually more of a hate relationship.

It took me many years to realize that “quality of life” is so unique to each child and family. Someone could easily look in the windows of our life and pity us for our trials. They could deem Malachi’s quality of life as very poor. But when I see Malachi, I see one of the happiest 7 year old boys I have ever met! He is loved and cherished, and with those two elements combined I can’t imagine anyone’s quality of life being poor.

And I look at Levi, sweet and resilient Levi who is thriving. Yes, the journey has been a hard one with over two dozen surgeries but oh what an amazing quality of life he has!

We have learned that it isn’t the diagnosis, the outcome, or the journey that dictates quality of life. Instead it is all about the tiny, beautiful moments you collect along the way. When we put so much value and stock into “normal” we put blinders on for finding quality in differences.

Different can be so, so beautiful!

Psalm 139:13-16 “For you formed my inward parts; you knitted me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them.”

I like to take this verse and insert my children’s names into it to remind them of how special they truly are. Lately I have been talking to Malachi about how unique and amazing he is, and watching his eyes brighten and a side smile form when he hears those words makes me tear up.

My prayer is that each of us develop eyes that can find “quality of life” in even the darkest of situations. And when we can’t easily find it, I pray that God will give us the courage and abilities to create it, always seeking to enrich the lives of those around us.

Much love,

Leah

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