Ok bare with me, this might get a little bit ugly.
AAAAAAAAAAAAAAAAAAAAHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!!!!!!!
Ok I feel a tad better. Lets start over shall we?!
Ok hello, it’s Monday…pajama Monday as a matter of fact…a tradition we started when Connerman was just an infant. Doesn’t matter if we’re staying home, cleaning, running errands or whatever…we stay in our jammies all day long. I love PJ Monday! LOVE LOVE LOVE!
We’ve entered a weird phase of Cystic Fibrosis recently. In the form of headaches. Really sounds like no big deal…until you realize that headaches in end stage CF are caused by a lack of ability of the lungs to remove the excess CO2 from them…causing the body’s PH to become acidic resulting in Respiratory Acidosis. Phew…thats alot of cf talk. So yes headaches. Conners having them off and on now. Usually a good dose of ibuprofen makes them disappear, for now. So I won’t get all panicky just yet. But yuck. We’re there now. His lungs are becoming unable to properly exchange his oxygen and carbon dioxide. Which will eventually lead to coma and/or death.
In other “bright and shiny” news…Conners handmade casket arrived to town last week.
I’m not sure how best to describe my feelings and emotions on that one. But lets give it a try shall we?
It’s beautiful. Handmade by a wonderful gentleman in Vashon Island area (Washington). He donated it to our family. Which was a HUGE burden lifted from our shoulders. Not sure if any of you have priced caskets but oh my…they are in the THOUSANDS of dollars range. My friend is going to stain it a medium brown color and then another dear person is going to paint a beautiful picture on it for us, and when the time comes, our family of 5…well 4 will leave our handprints on it for all eternity…so we’re always there with our connerman. But until that time comes I don’t want to see it. Or touch it. Or smell it. Or talk about it. I know where it is right now, and I won’t drive anywhere near it. Odd isn’t it? It is the most kind hearted, PRICELESS gift anyone could have ever offered our family…but I hate what it stands for. I love it. and I hate it. It will be perfect for our family, Conners personality will shine on this beautiful gift unlike the cold, sterile ones we’ve looked at that are so ridiculously overpriced it’s unreal. We are blessed. And we are cursed.
Conner sleeps more. He breaths harder. He panics more…oxygen related that is. It’s so tough on his body to travel. I’ve removed the high back on his booster seat, and recline his seat back in the van and put a airplane pillow (which MAY have come home with us on his make a wish trip in January…) behind his back so he can be somewhat comfortable. It really sucks. The time we can be out of the house is less and less.
and here we sit, defenseless. Helpless. Backed into a corner with nowhere to turn and no way to escape. I just can’t believe this is all real. I really cannot believe how much I felt like he’d make it. When we had these talks with the Dr’s a few months back, I kept saying and thinking…”if we can make it out of winter and into summer he’ll be fine!” because we all know how hard winter is on CF lungs. Lots of disease going around…but here it is…summer (well despite the WA rain…) and he’s not getting better.
He won’t get better.
I’m just not sure what to do. where to go. how to help. what to say. how to feel. how to best enjoy all of this.
each night when he sleeps next to me, i hold his hand and just watch him for what seems like forever, until my eyes are forced shut by sheer exhaustion. I keep thinking in my head how oneday I’m going to look back on this time and simply WISH I could do these things again. The little things we all take for granted. holding hands. hugging. kissing. laughing. loving. watching him breathe. all of it. i simply can’t imagine my life w/o him in it. i can’t. and i don’t want to.
Piper said something in one of her latest posts that really struck me hard. She said something along the lines of “I wish for all the CF’ers who are awaiting new lungs, or who will never want new lungs could feel how wonderful it feels to just breathe…”
wow.
How horribly true is that? You and I (most of you i would imagine) can breathe just fine. No need for oxygen supplementation. No need to take breaks from just walking up a hill. No need to lug o2 tanks everywhere you go. To go out in public wearing o2 proclaiming to the world just how much your lungs hurt. how lucky are we? I would do anything…ANYTHING for all of you with CF to simply breathe. It should’nt have to be a struggle. Breathing is supposed to be something involuntary that we don’t even have to think about, it simply is…
it’s so unfair that it’s not. for you. for conner. it’s not. it’s unfair that there are so many people in this world who do horrible things, but are perfectly able to breathe. It just doesn’t make sense. Like Josh said “don’t let your broken body lead you to a broken soul”…so SO true…
Anyway…don’t really know where I was going with this, or if there was any point I was trying to make. I’m just simply sorry. So sorry so many of you can’t breathe. So sorry there’s nothing I can do to help you. I can’t even IMAGINE what it feels like to not be able to breathe. I’d trade my lungs for yours. I would. I’ve seen too much of the horribly CF sufferings…and I know for sure that it’s horribly unfair. and unacceptable. And i’d gladly take it all away…and give you my lungs…
Breathing apparently isn’t a RIGHT…it is a PRIVILAGE!!!!
I think of you often. My heart hurts thinking what you and Brad go through as parents and for poor Conner struggling. I know you don't want to think about what the future holds, but it is a precious gift of the casket for sure. Yovan's great aunt and uncle live on Vashon Island. They are a close knit and charitable bunch. I love the idea of the hands of your family being with him always.
ReplyDeleteOur thoughts and prayers are with you daily.
It's crazy because I never really knew of people with CF or much about it until I found out about girl in Canada named Eva and her struggle and eventual passing. Ever since then I've found out about you and now Piper. What strikes me is how little is known about this and the lack of awareness. I'm glad you voice your struggle about your little one. It's taught me about the strains and adjustments and the actual CF condition. ♥s
ReplyDeleteThank you for sharing your thoughts and feelings. You really put things into perspective.
ReplyDeleteIts okay, say exactly what you're feeling, if it gets ugly that okay. Life isn't always happy, sometimes its full of pain and loss. Conversations with God, pleading with God for answers to all the questions that begin and end with, why? Why? And there is no good answer, none that I can find from all those painful times in my life, accept to cling all the more to Jesus.
ReplyDeletePraying always...
Sarah, I too wish that all those with CF could know what it was like to breathe, really breathe. How wonderful would that be. I cherish your words. thank you for sharing in your journey as a Mom. I understand how heart breaking it is, but will never completely know what it's like. I applaud you for being so selfless, so loving, and so giving. I am very honored to have met you, Brad and Conner. I know we were able to meet for a reason last summer. Conner is the reason. He is such a sweet boy, so innocent and so carefree. He needs to be able to just be a boy. And you helped him do that every second of every day. You made that happen. I truly look up to you and your strength. Sending HUGS!!
ReplyDeleteI am visiting from Phoenix's blog. Thank you so much for sharing your feelings. Your son and family are in our prayers.
ReplyDeleteMy son does not have cf but has chronic lung disease and everyday is a struggle.
To us, nothing more is required of you, then to just stay strong, and to be there for Conner & your family. You need not make sense, you need not form coherent sentences...you need not do anything more, then what you absolutely must at this point....unless you want to. So babble away. vent, scream, cry, just talk...just do what you want. We're all here for you, and for your family, in the best way we can be right now...which is just to listen & let you know we care.
ReplyDeleteSo much love, and so many prayers...