One day at a Time

So I found this video on Nathan Lawrenson's Blog and I found it very moving. It could have just moved me because this is what I have to face with Luke and even though it is a very scary reality I gives me hope.





Someday in the future Luke will need new lungs (if a cure isn't found) and seeing someone that has gone through it and is living a full life makes me have hope. I am having a day today where I would like to throw in the towel. I want to have a pity party and ask 'why me'. My sisters have perfectly normal children and lead perfectly normal lives. I am scared to even volunteer to play the piano at church because we may be in the hospital that day! You know it is bad when they take you off the nursery schedule at church because your life is too unpredictable.

I would love to say to my husband "let's have another baby" but I can't. I have to think "What will I do with the baby when Luke is in the hospital. Which baby will be neglected. What will I do if the next baby has CF. How can I handle 6 breathing treatments and 2 hours of Chest therapy every day more when they would be sick." I know that it is sinful but I am envious of mom's that only have to worry about buying formula, diapers, and clothes for their babies. Luke has hospital stays that run into the tens of thousands. I envy moms that only have to take their babies for well visits and then only take them to the dr if something is really wrong. We have to go to the dr's once sometimes twice a month and have to go to the er if he doesn't stop coughing or if he is running a temp over 101 degrees.

I feel like giving in. I can't believe that I am saying this but sometimes I want to run from it all. I feel like I should wake up and we will have a normal, healthy child. Some mornings I forget. Then I get thrown up on because he is coughing so much he vomits or then I am awakened with him screaming from pain because we need to up his enzyme dosage. There are times I wonder what it is like to sleep though the night. Are there mom's that don't know how to administer iv antibiotics? I thought that it came with the territory.

This may sound cruel but sometimes I envy cancer patient parents. They have hope. They know that someday it may be gone. Someday it will be in the past. Someday their child will be home. Their children may die though and for that I am truly sorry. My child will die young. There is no way to get around it.

I carried Luke for 9 months. I felt his first kicks and had huge dreams for him. I even thought about the day that I would have grandchildren. I didn't really enjoy my pregnancy as much as I wanted to. I took for granted that I would have more pregnancies. I took for granted that this child would be healthy and would grow up like all other children. I never expected hospital stays and iv's. I only saw the glamorous side of parenting.

Now I have seen the hard side. The side where you mourn what your child won't know- a normal childhood. They tell me that he can do everything everyone else is doing- that we can make it normal but it will never be normal. Even a 3 yr old knows that the other kids don't have to have enzymes or breathing treatment or BD. He will never know what I knew. Maybe he will know more than I knew though. Maybe Luke will understand things I never understood until I was an adult.

I guess that I started on this pity party because he is getting sick again. I know the cough. It's a juicy cough that shakes his whole body. I know the white discharge that comes out of his nose every time. I guess I will tell myself what I tell myself every time he starts getting sick "We can make it go away this time, I am sure of it". In 3 months he has been in the hospital 3 times.

I don't mean to sound bitter or resentful. I would never trade my son for 100 healthy boys. I love him and sometimes I get so happy and grateful that God gave him to me that I start crying. He is the most lovable baby and he is so beautiful. I feel so unworthy to be his mother. I wonder if there is another mother out there that doesn't doubt herself, that doesn't want to run away sometimes, that doesn't lie when everyone asks how she is doing.

I do know that God is Sovereign though. He gave Luke to Dan and I and he allowed him to have CF. I will get through this sickness like I have the other times- one day at a time. I will increase his BD and breathing treatments. I will wake up to do one at night. I will fight him to take all his meds on time. I will love him. I will cherish him. I will soothe him. I will be his mother.

I have a charge and that is to take care of him. Although life hasn't happened how I pictured it on my wedding day, it has been awesome so far. God had a better plan for me and I am learning that it can be magnificent. So even though sometimes I want to give up and sometimes I want to run away I never will. I love him too much and together we will fight CF. Together we will give Luke a 'normal' life. We will enjoy the good times with him, will celebrate with him, will cry with him, will mourn with him, and will grow with him.

Isn't that what life is all about? Growing? Because I am growing. One hospitalization at a time. Don't pity me. Even if I do complain sometimes, it's more like a vent against my selfish self. I know that I am selfish and know that I tend to be self-centered. God is using Luke to break me of that..... One day at a time.