Feel the awesome.
26
Sep 2010
The Beginning
We’ve been having a lot of fun spending time with family in North Dakota, and I’m way behind on posting pics from our time together, but I just wanted to make note of something that happened when we got here because I can’t stop thinking about it.
When we first got here we had to get Asher’s treatment started. His two 2.5 year old cousins, Micah and Mason, were in the same room when we started pulling out all the equipment and getting Asher hooked up. When the mask came out and the machine started, the boys got pretty hysterical and needed to leave the room. I totally understand why everything would scare them. It still scares me sometimes, and it’s certainly not fun to watch him all hooked up and shaking all around. I get that.
The thing that made me start crying was after the boys left. I was sitting on the couch next to Asher and he was watching his show for a couple of minutes, then turned to me with his mask on, smoke rolling out of the mask, and his little vibrating voice and said, “Micah and Mason scared. My mask scare ’em.” I said, “Oh buddy, they just don’t understand that your treatment is good for you.” He kept watching his show, and I just sat there crying. I felt really overwhelmed at that moment. This is the beginning. This is the beginning of all the questions I’ve been dreading. This is the beginning of Asher realizing he is different than other children. This is the beginning of all things I’m completely not equipped to explain to my son.
I’m not sure how we be honest with Asher in explaining what Cystic Fibrosis is so he understands the importance of all his treatments and meds, but not overwhelm him. I’m not sure how we continue to fundraise and create awareness about CF, but not make him feel like he’s fighting a loosing battle with this fatal disease. I’m not sure how we encourage him and help him to not be bitter when there will be parties or activities that he’ll miss from being sick or in the hospital. And, I’m not sure how we explain to him that God is completely in control of every aspect of our lives and that He allowed Asher to have CF, but we hate CF.
I know we’ll figure it out as we go, and I know we won’t have all of these thrown at us at one time, but it’s coming…and this is the beginning. And, I can’t help but think how many times over my life I’ve majorly stuck my foot in my mouth, said something hurtful or stupid that I don’t mean, or have just flat out communicated something that’s incorrect. I feel like Asher is going to hang on to every word we speak to him about this disease, and that’s a lot of pressure. I know that Asher’s attitude about CF is greatly going to be effected by our attitudes, and that’s a lot of pressure. It’s just a lot to handle and think about. Certainly not the conversations I’ve dreamed about having with my son. We pray for God’s direction and His wisdom in explaining things to Asher. We pray He would give us the words to build him up and encourage him. And, holy cow, we PRAY for that cure!!!!!
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this post makes my heart hurt. I’ll join you in prayer.
Thanks for sharing your heart and emotions. You are an amazing women and mother. Praying for you…
You & Jeremy are full of hope, strength, determination and joy–even in the darkest hours. Even at not yet 3 years old, I am amazed how evident those same characteristics are in little Asher. I know you will continue to cultivate these traits in him & that he will continue to be an inspiration to many. Praying for you often, my dear friend.
Rachel-Thank you for sharing all of this. I agree with everything Krista said! You are allowing yourselves to be intentional with these conversations with Asher just by thinking about all of this now. Wow…I can see how that was really hard to see. Funny that just today, I had a conversation with Graham about why Rowan has so many therapies. I told him that he will be Rowan’s best friend. God made him to be Rowan’s big brother on purpose, and that he gets to care for him! Praying for a special bond between Paxon and Asher….and praying for so many, many other things too….Love you!
I second, or third, the previous comments. You guys are amazing parents. When I think about those dreaded conversations I cling tight to the hope that, even though I may not have the right words in mind right now, that I will be able to hear the words God wants me to say at that time. I’m right there with you putting my foot in my mouth… I can get up to my ankle! I still do!
Just this morning I was thinking about a Twitter friend with CF who has been having issues with bleeding from his lungs. It was overwhelming to think “Are we ready for this? It’s completely unfair that we have to think about this. What do I say when it happens? NONE of us signed up for this…” Thankfully it’s not here for us just yet and we will deal with it when it does happen. And like you, we pray for that cure!
Please don’t worry about these things as I know you WILL find the right words&the right time to explain all this to Asher.All our Love
Ok so I “fourth” the previous comments. You truly are amazing parents and Asher and Paxon are so blessed to have you as their parents. My heart hearts just reading this post and I can’t even imagine having to process the things you’re processing right now with both of your precious boys. We will continue to pray for your boys, a cure for CF and for wisdom for you and Jeremy. Love you all!
Sigh…my heart hurts reading this. Tears are flowing knowing the pain you feel over this. Rachel, like everyone above said, you are amazing and Christ-filled parents, and we will pray that all of your wisdom and words come from Him and that He allows Asher’s little heart to fully trust in Him. This journey is not ours to decide…thankfully we don’t have to walk it alone. Hugs, hugs and more hugs…to little Ash-man too!!!
I know that exact momment….I remember it so clearly, it was a cousin situation as well. I reacted the same way, crying. Lots of crying. We need to talk soon. I think of you so often! Xoxo
Oh Rachel. This post affected me more than all the others (and I’ve read them all) for some reason. I think because Asher just looks and acts so incredibly healthy that I forget what he is up against. I’m sorry you had to have that moment. We continue to pray for you all. With so much love. L
As you give Asher grace for his misdeeds, and model God’s grace in your marriage and with others, Asher will give you grace when you hose something up. Children seem to be much bigger offerers of grace than adults are, and we often forget this. A few misplaced comments won’t “ruin him” when they’re surrounded by the hope, love and support that your kids feel from you daily.
Thank you for sharing, Rachel. My situation pales in comparison but I was relating to what you were saying. Trusting God to prepare Taylor’s heart and our words when she starts asking about her adoption. I just read Isaiah 26:3 and Psalm 112:7 this morning. The message I got was “trust”, when we trust God, He provides and I our hearts and minds can be steadfast, at peace with no fear. God is trustworthy!