Traveling

Traveling with my son who has CF is always worrisome and challenging. Just packing is a huge chore. It feels like we take half the house when we just go to New Orleans for his cf appointment for a day. So, you can imagine how my stress level has risen as I'm getting things ready to be away for 5 days. We are going to my dad's for 4th of July and I'm very excited about it. A lot of worry comes along with that excitment though.

We will be about 10 hours away from Kaleb's CF center. I am armed and ready with his cf doctor's cell phone number but still this makes me paranoid. I have looked up the closest CF center where we will be and put the number in my cell phone just to ease my mind a little. I have also called my cousin who has a seven year old and got the number to their pediatrician. I don't think anything will happen but if it does I am ready.

I am calling his CF doctor today and letting him know we are going out of town. I figured he should know and I know he will make me feel 100% better. He is always very encouraging and I think he'll put my mind at ease.

Sick people are always another endless worry. I've already told my family ahead of time, if anyone is sick we cannot bring Kaleb. I've also reminded them about washing hands and that he cannot be around any smokers. It may sound harsh but it's necessary. Sick people in stores and public places are the normal for us. Smokers standing outside of a place we are going into are sadly, normal as well. All we can do is take Kaleb away from it. I know I sound like a worry wart but I really don't believe I am. Kaleb does anything a normal child does when it comes to fun and play. I don't want him to miss out on anything but at the same time if someone is coughing their head off, we leave....I think that is the smart thing to do. If we go to the playground and a kid's nose is running with snot down to his mouth...it is definetly time to evacuate! Abandon ship! lol

Packing. Oh the joy of packing half our house... Vest machine, machine for his nebulizers, enzymes, Tobi, the dreaded applesauce, vitamins, zantac, syringes, nebs, bowl to sanitize nebs in, vital junior, gatorade, salt, lots of salty snacks, sponge to clean only his stuff, his cups, children's ibproferin, a few hand towels to lay on counter to dry his nebs on, toys, clothes & extra clothes, his pad thing that folds out and I change his diapers on, lots of diapers, wipes, food for him that I think my dad won't have, culturelle almost forgot it, his shampoo, toothbrush, gas medicine, oragel cause he's got the last of his teeth coming in, his puppy, blanket, pillow, extra prescriptions just in case, zip lock bags, plus all of our stuff. Whew! I think thats it but I always forget something lol

While there is quite a bit to worry about I think it's well worth all the trouble. I am so excited for everyone to see Kaleb! I'll survive! :D I don't think any of these reasons are good enough to stop us from traveling. It might take a little more effort than usual but if Kaleb sees CF stopping us from doing things just imagine how that would effect him. I don't even want CF to stop him from anything! Dream big, the world is his!

What I've Learned

I feel like I have gained a whole new perspective and acquired a mountain of knowledge. I have been through hell and back when Kaleb was brought into my life. It was a bundle of joy mixed with uncertainty and quite a bit of fear sprinkled on top, that entered my world. People say I'm a strong person...I just say I did and do what any mother would do for their child. What else can you do? Failure is not an option and I hope that is how Kaleb will feel someday.

I think I found out what I'm capable of when it comes to my son and the capabilities are infinite. I learned that I would do anything for him. I know my love runs deep and that his life is truly more important to me than my own. The times that his life was in the balance were my darkest. I must say holding my son to my chest in that small narrow room and waiting was antagonizing. Actually handing him over to the surgery staff and watching them walk away with his small little life was killer. I did it alone might I add, my husband was on his way from work. (Someone had to work or then where would we be) I don't believe I was strong. I was alone, scared to death and I cried like a baby. I think I learned it's not so much about being strong but more about love. Nothing makes it easier, I can give no advice. It's horrible, there are no profound words someone can say to help someone else going through it. It's just digging in, doing what needs to be done and trying to keep yourself together long enough to sign the papers for your son to go into surgery.

A nurse told me one day in NICU, "The babies that have their parents here a lot always seem to do much better." That was all it took for me to completely throw myself into being there at that hospital for the most insane amount of hours anyone has ever been at a hospital. I stayed there all day, held him, "kangarooed" with him, sang to him, talked to him, stroked him, kissed him, held his hand, changed his diapers, helped bathe him, learned how to do all his medicines, changed his bedding, learned what all those machines did....I did it all, anything they would let me do. Find something that helps to throw yourself into is my greatest advice, thats what
I learned.

Something very important I learned from everything I have been through is the importance of encouragement, lifting someone up and love. I entered this world of parents whos children are fading away before their very eyes. I met plenty of parents in ICU, PICU and the Peds ward that will always be in my heart. These beautiful, amazing children who have these horrendous diseases... It is absolutley heart wrenching, it will tear your heart out to hear their stories. I will always carry them in my prayers and I'll never stop hoping for them.

My heart has grown through all this. I feel like it is everyones job to encourage others and I've taken on this job. I just want to make other cf moms, family, anyone going through a rough spot, strangers, friends to feel uplifted. I just think it's important to be there for someone whether you know them or not. A nurse who was a complete stranger to me did this for me. I was watching them get Kaleb ready for his first surgery and I had to walk away. I was crouched in a hallway, having a panic attack and crying. She wrapped her arms around me and prayed for us. Then she told me,"Get back in there honey your son needs you." I did, a little taller and braver. I thanked her whole heartedly later but at that moment I truly needed her. A stranger, I needed her encouragement more than she'll ever know. See...a lesson...Sometimes it's not how strong you are but how strong someone can make you! Maybe, just maybe I will get the chance to be that for someone else and I will never miss the oppurtunity. I hope you won't either.

Life has changed for me. It's not about me and probably never will be again...I'm totally fine with that. I was probably way too selfish anyways. Life shouldn't be about us anyways, if it was we'd most likely be alone. I think I've learned to just be in the moment. That it truly is not about "things" you have and more about the love you have. Life is ever fading...love, live and keep the important things into perspective so you don't waste a single moment of it. My son changed my life and filled me with the strongest love I have ever felt. He is my heart and I have never known love like this.....now that is the most signifigant thing I learned. :) <3