This morning was the first morning in a long time that I woke up and didn't feel like I was going to cough up a lung. Ahhh, whats that feeling again?...its the feeling of getting air in my lungs! Turning the corner on my oral antibiotics. But this is just temporary and when I am finished with them it will only be a short period before I would need more orals...hence the needed tune up. But its been since December that I have needed to go into the hospital so I feel its a pretty good accomplishment.
I got some good advice from a wonderful person who knows just a little about what I am going through (I say little with much sarcasm....he is 14 years out of a double lung transplant and battles CF everyday too!) "...life sometimes needs to be put on hold to handle this illness to fight the battles, and to win the war." I am not sure anyone could say it better, thanks Ryan! He is 100% correct, but its is much easier said than done (and I know he would agree too!) Its hard to pick the moment you can skip in your life, or your child's life, in order to make sure you are here for more of those moments.
With that said, once I sign up for a transplant and one day, hopefully, get that call, the life of the 3 people in this house will be put on hold, not to mention many people on the other side of pond in Michigan. My mind races everyday on scenarios on how all this will go down. Both who to call and when to call, all the way to what happens if I never make it out of the hospital! What if it is 2 am and Laila is sleeping...who will wake up and rush over to make sure somebody is here? And that Laila needs to be comfortable with that person. Do I have a bag packed so we can rush out the door? What is I am far away and can't make it back? What if I do make it back and the lungs are compatible? What if my family can't be there in time to say goodbye? How do I say goodbye to Laila in fear that I may never see her again? My emotions are getting the better of me right now because I don't know...yeap, the fear of the unknown.
The weird thing is, I am not scared for the actual surgery. Yeah so they cut my own and place a new organ in my body...sounds scary, but its not. I am not scared of the work I have to do right afterwards. I will do anything to get out of the hospital as fast as I can :) I am scared of not knowing how to get to that point. Or the plan of action once it happens. I want Laila's life to not be turn as upside down as it may be. I want her to be happy and run and play and eat white rice (its her favorite) whenever she wants. I want her to know that her Mom is doing this for her! I want her to know that even if I don't see her for weeks that I didn't abandon her!
I am excited that one day I can show her my scars and tell her that its proof that you never give up and fight for what you want. I fought a battle in order to have her and not going to give up being her mother without a fight! But scared about not being able to keep up that fight. My little girl cries when I go anywhere without her, because, as she says, she "needs me," but I always tell her that "Momma will ALWAYS come back." But what happens if I don't? The fear of the unknown.
Cassie, You don't know me but I read your post and it immediately brought me to tears. I too battle CF, somehow I have managed to get lucky and I am quite healthy, but there are still fears EVERDAY! My daugther is 19 months old and we recently found out we're expecting again which is a wonderful joy but somewhere deep down there is this uncontrollable fear that what if someday I'm not as healthy and things aren't as easy? What if one day this disease decides to take over out of the blue and turns my kids world upside down? Until my daughter I had always been able to sit down and know that someday I might not be as lucky as I have been but I could deal with that, my family could deal with that, but my kids, now that's a different story entirely I don't want them to HAVE to deal with it, I just want them to be happy healthy kids, so most of the time I just have to ignore it because otherwise it is a disasterous day of balling my eyes out and at the end of it I come to realize I can only be what I am right now and take care of myself the best I know how and hope that its enough. I'm sorry I didn't mean for this to get all sappy but I can relate in a lot of ways to how you feel, and your story hit really close to home as I've been thinking about these things a lot lately, that and I'm from Michigan so it all made me realize I'm not the only one and that there are other people out there who get it. I hope you have a great day and keep on the road of feeling better.
ReplyDeleteKayla
Kayla...look me up on Facebook, would love to talk!
DeleteDear Kayla, I will add you to my prayer list when I pray for sweet Cassie.
ReplyDeleteI have utmost respect for the truth that you both have major health and life issues staring you in the face every day. I pray that God keep on comforting you and giving you peace despite that reality. I hope it helps a little to share that even moms withOUT severe illnesses like CF entertain similar thoughts and worries about our children. By our nature (as you know!) Moms DO imagine or even plan somewhat for the possibility that they won't always be there for their children. I could enter heaven via a car accident tomorrow. "If I die" conversations with our children are solemn but necessary ones, and we've been having them with ours since they were tots. We talk about being sad, but knowing Jesus won life in heaven for us; about being able to be happy again even though we miss someone dearly; about who would take care of them and where they might live, who would hug them and tuck them in at night... not all at once, necessarily. But I have hope that it helps them prepare for loss and even tragedy. We remind them that above all, God is always with them. He promises to never leave them or forsake them, and that we ALL will be with Him in heaven someday, where LIFE is even MORE REAL than it is here. It gives me peace to know God's promises for my children, even if I may not always be here for them. He really is trust-worthy.
With love, Lara