So, I have avoided this post for a few days but this blog has really been my way to digest what’s been going on with Lollipop so…here I go! We have eye appointments every couple of months to check the progression of her disease. I knew it had gotten worse based on little things I’ve seen at home so I went in expecting to hear “bad news”. Only a few days before the appt we celebrated my nephew’s 3rd birthday in a room that was fairly unfamiliar to Lollipop and she was having so much trouble walking from room to room (from the carpets onto the floor because of the color changes, she can’t tell if there is also a change in depth). She eventually followed my dad and watched his feet as he slowly took one step at a time and slid his feet across the floor to show her..and even then she put her hands down to check and basically crawled across. Unless she’s been there before and knows exactly what to expect this has become the norm.
While we were at our appointment she did great for the first part and then had a small meltdown when they were trying to measure her eye drift. So, of course I whipped out an entire canister of raspberries (my secret weapon) and our nurse, who has been at every appointment with us said, “we’ve officially named you the raspberry mom. All the moms come in with bribes and you’re the only raspberry briber.” And all the other moms are definitely right because raspberries are not a great travel snack with a toddler..unless you like wearing red stains and seeds all day, which that could totally be your thing. But hey, whatever works, right?
As our Dr. finished I could tell that I was right. He said he wanted her to start wearing her eye patch for 6 hrs a day (she was previously only having to wear it for 2) and that he wanted to see her back in 8 weeks, not 3 months. He said at our next appt he would like to get a better reading but we are looking at surgery.
I’ve spoken with our doctor in great lengths about what surgery entails and also with friend whose child has had a similar surgery and visited every site on the internet that gives information and opinions and stories. And so now that I’m equally freaked out as I am reassured that this will be the best thing for her I just need to apply Deuteronomy 11:18-19
“Place my words on your hearts. Get them deep inside you. Tie them on your hands and foreheads as a reminder. Teach them to your children. Talk about them wherever you are, sitting at home or walking in the street; talk about them from the time you get up in the morning until you fall into bed at night.”
His word is all the confidence I need to …..
just be a mom.
Honesty time… she hates the eye patch. HATES it. And with her nap she’s not awake for 6 consecutive hours a day so that means we wrestle that stupid thing on twice a day. And its kind of a horrible feeling making your kid do something that is miserable for them twice a day “for their own good”. I know I’m a parent now but that still doesn’t seem like a good enough reason. And I know all of the specific reasons she needs to wear it but I just want to say “I hate it too! Let’s take it off!” …parenting is hard, and super lame sometimes. We heard our parents say “I’m doing this because I love you” about a million times but now I understand. I Love my little amazing adventure so unbelievably much that I’m going to force her to do something she hates…see? lame.
Every single day I worry about her. Drew & I watch her struggle with something or be fearful of unfamiliar surroundings but each time I find myself in that place of worry I remember all the blessings along the way. The fact that she is walking! And her beautiful, joyful spirit! The way Lollipop and Ollie get along and love each other! My kiddos are playing right now and I heard Ollie a few minutes ago saying, “Come with me sweet girl”…That moment right there is enough blessing to be thankful and praising God for!
I love the Message version of Phil 4:6-7 Don’t fret or worry. Instead of worrying, pray. Let petitions and praises shape your worries into prayers, letting God know your concerns. Before you know it, a sense of God’s wholeness, everything coming together for good, will come and settle you down. It’s wonderful what happens when Christ displaces worry at the center of your life.
TRUTH. When you find yourself in the place of worry – force yourself to stop and pray. . .it’s in those times that I’m reminded of what God has done for me, of who He is and I’m able to feel the worry turn into trust and strength.
As I continue to let Christ displace worry at the center of my life I would love to chat with other parents who have done patching therapy with their kiddos. If you have – message me or if you know someone who has please send this along to them and have them message me. It’s definitely gotten a lot harder over the past few days and I would love to chat about it and hear what worked and what didn’t.
kiss from her big brother