Two of my kiddos have special medical needs; my oldest son has Cystinuria and my youngest daughter has Congenital Adrenal Hyperplasia. As time goes on, I’m kind of getting used to being a “special needs mom”. All the appointments are becoming routine, the kid’s medicine alarms and medication schedule have become second nature to me and I can tell you all about their diseases at the drop of a hat.
My two “rare” kids, Ruby and Kilian
But lately, I’ve heard some things come out of my 7 1/2 year old’s mouth that have caused me to pause and reflect and have even broken my heart a little. A few things I’ve heard him say in the past week or so:
“Mommy, is that the last surgery I’ll ever have to have?”
“Mommy, when will my kidneys work better?”
“Mommy, will I always have to take this medicine for the rest of my life?”
My son was diagnosed with a rare form of kidney disease called Cystinuria almost two years ago. It’s incurable and chronic, which means it will always be there and potentially give him issues. He just had another surgery to remove kidney stones about four weeks ago and another minor procedure to remove a stent in his urinary tract a few days ago.
I think my son is coming to an age where he realizes he deals with something most children don’t…and that it will always be that way. Which just shatters my heart into a million pieces. I want to protect him and take away his hurt. I want him to live as normal a childhood as possible and we try very hard to make that happen. But, his disease is relentless, and even when we are doing all the “right” things, his body still makes kidney stones.
So, I thought I’d write a tribute to him/something that he could read later on, maybe when he’s going through a difficult or painful time or feeling down about this all. Maybe it could help someone else out there, too, who is walking through a difficult season medically or maybe has a child of their own with special medical needs.
To answer those questions above…
No, my son. This is not the last surgery you’ll ever have to have. Chances are you will have to have procedures in the future because we want those stones to get out of you when they form. But I promise that Daddy and I will always be there to support you during your surgeries, appointments or hospital stays. We will be your advocates. We will speak up for you and make sure you’re taken the best care of and as comfortable as you can be. We will fight for you.
No, my love. Your kidneys will not work better or differently. But you know what? You are an amazing little guy. A fighter. You’re strong. You’re brave. Your ability to have kidney stones, to have surgeries and still carry on with life, to still run and play, to still bring a smile to everyone’s face regardless of what you’re facing…you amaze us. You inspire us to do better and to be better in our own lives. You remind us that whatever we are dealing with that we need to smile, because it’s really not so bad.
Yes, my sweet boy. You will always have to take medicine. Maybe not this particular kind, but your medicine helps your kidneys work to their best ability. It makes those pesky stones have a harder time building up, which prayerfully means less frequent kidney stones. We want to keep you as healthy as possible. I know it’s a pain having to take your medicine multiple times a day. I know it’s a challenge to drink more water every day than most adults do. But you never complain. You are so compliant with it all. Like your Doctors say, you are a super patient! You are incredible!
So, yes, you’re a little different. But you’re also smart. You’re creative. You’re inquisitive. You’re thoughtful. You’re kind and compassionate. You’re opinionated and spunky and passionate. You’re funny. You have a great smile and laugh. You’re energetic. You would do anything for your family and friends and even those you don’t know. Truth is, I admire you.
Above all else, I want you to know how loved you are. You made me a mother, Kilian. No one could take your place in my heart. We share a bond that could never be broken or replaced.
Even so, your Heavenly Father loves you more than I ever could (which is a lot for me to imagine, because I love you and your siblings and your Daddy with all that is in me!).
He loves you with “an everlasting love”, and is “ever faithful and kind” to you (Jeremiah 31:3).
He tells us we do not need to fight our battles (2 Chronicles 20:17) because He will fight for us.
He tells us that He will go before us and will be with us, and we do not need to be afraid or discouraged (Deuteronomy 31:8).
He loved you and I so much that He sent His only son to take our place, to die with our sin, that we might believe and trust in Him and receive everlasting life (John 3:16).
He hears the cries of His people and He is concerned with our suffering (Exodus 3:7).
He encourages us to cast our cares and anxieties on Him, because He cares for us (1 Peter 5:7).
So, no matter what kind of trials or pain you face in this life, I pray you will always remember how loved and cherished you are. I pray that even in the darkest times, you will cling to your faith. You would remember you were made in the image of the Creator and that He does not make mistakes. I pray you would remember He has a very distinct purpose and plan for you, even if you can’t make sense of it or see what it is in that moment.
You make me so proud. And you are so loved.
With Love, Courtney