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Food- Fights -Failure!

The alliterations continue…frustration, follies, fears, feeding tubes and fatigue.  Some days the fight for food is almost more than I can bear.  There are parts of CF that are difficult and there are parts that are scary, but then there are parts that are dull, daily, and draining.  Getting a child that hates to eat and must eat an exorbitant amount of food is one of them.  The last few weeks we have battled daily!  And at almost at every meal to get Rachel to eat.  She has absolutely no desire which frustrates the crud out of us.

This is part of our follies.  We hound Rachel for almost every single bite of food that goes in her mouth.  Often times WE are the ones shoveling it in her mouth.  She is seven years old!  It is ridiculous, and frustrating.  But, we feel the pressure from the Dr.’s every time we go for our 3  month check ups.  Many cfers have feeding tubes.  Almost every appointment we are reminded of these facts.  There is a clinic that has the highest average cf ages in the US, and one of their keys to getting to that high average life is their patients all have BMI’s that are over 50%.  The number of their patients that are on feeding tubes is somewhere around 40%.  I know I have said it before, but the only factor that the cf dr’s have been able to come up with prediction to length of life is BMI’s over 50%.  They strongly believe that weight and life expectancy go hand in hand.  Feeding tubes are one way that they accomplish that.  While I understand that is a valid option, we have a major problem with that.  Rachel is still allergic to much of what they put in feeding tubes.  She can tolerate small amounts of foods that she is allergic too, however if that was a constant…pretty sure that we would have many other problems to contend with on the back side of that.  We have looked into the formulas several times and her allergies then become a major issue.

Unfortunately, the child feels our stress and anxiety over food.  Yesterday, I saw that crushed spirit again.  Rachel is such a fighter.  It is one of her God given traits that I appreciate about her the most.  She has an indominable spirit that works hard at whatever is before her.   She doesn’t quit.  However with eating it is so constant and her spirit was crushed!  I know that she feels that pressure every day.  EAT, EAT, EAT!!  No relief. No days off.  Add to the amount of food she must consume the time factor is an issue too.  Enzymes only work for around 30 minutes or so, then we must give her more.  However, we can’t constantly give her enzymes, there is a loose maximum a day before it causes other negative side effects  down the road.  Wether she feels like it or not, food is constantly being shoved at her and it takes so much effort.  (This is such a difficult concept for most of us to understand because much of America has the opposite issue, we can’t stop eating.  We wish this was our problem.  But the amount of calories would be tough for any of us on a daily basis, and add to it that food makes many cfers feel crummy because the lack of absorption.)  This last month has been particularly difficult.  She was on an antibiotic (abx) that destroys what little appetite that she has.  To top it off, it is an abx that usually works great for her lungs, but  that seems to cause her to have more trouble swallowing somehow (we have seen it before where she gets huge gag reflexes with her food).  So she has contented with that for several weeks.  We have watched bite after bite of food go into Rachel only to observe her inability to swallow it, so difficult.

We have gone to food therapists and allergist and specialists.  And yet, here we are tired, frustrated, fighting over food daily.

Yesterday morning we came to another crux in the road.  We sat to eat breakfast and the failure continued.  First nothing sounds good to her.  (She does not have a favorite food other than chips.  Praise the Lord for chips, but she can’t eat chips all day.)  So she sat there with food in front her being hounded in the most gentle, firm way that I could muster again (by me-which I HATE, but don’t know what else to do).  Finally, she broke down in tears yelling she hated eating and buried her hands in her face.  Failure…again.  I hate cf!  I hate watching my sweet girl struggle daily with food.  I have tears now thinking of how hard this aspect of the fight with cf is.  It is exhausting in a way that is so hard to even comprehend!  I feel like there are so many parts of cf that are hard.  The treatments, the constant worry over germs and sickness, but the food battle is relentless.  Daily I feel like we must push.  It is an uphill climb.

Finally, yesterday morning, out of sheer frustration I just looked at Rachel and told her I was done.  She knows the feeding tube issue and we have threatened, and bribed and guilted and done every single folly, and fopaux that you could think of in regard to food.  Yet, this is truly a battle that only she can fight.  I can push food, and even feed it to her, but it is only by her will that she chooses to swallow it.  So…I must let go.  I told her it was up to her now.  I am done feeding her, and hounding her.  Being the mom of a cf child has changed me.  I don’t think I was this controlling before cf entered our lives, but I am now. =( I see it clearly with the food fights.  So, I made a conscious decision yesterday to put (and work to leave) this in the Lord’s hands.  If Rachel falls, she falls.  But, I know that God will make a way somehow.  Maybe it is a feeding tube, or maybe it is her choosing to finally eat on her own.  I don’t know, but I choose to trust.  It is funny the things that we seem to trust God with and yet the many things that we only kinda trust Him with.  Somehow food and her weight is one of those.  I trust Him, and yet I feel like it is my responsibility to make it happen.  BUT, I have put Rachel and the food situation in God’s hands, and I must choose daily to leave it there.

Rachel needs somewhere around 2,800 calories a day to get to where she needs to be right now.  After our breakfast failure (she only ate a couple of bites), lunch came around and everyone else ate their food.  I ate a salad which is often my normal.  Rachel looked at her food on her plate, then sweetly asked if she could have what I was eating.  We don’t often let her choose, she usually just eats what is put before her, but honestly most meals are tailored for a higher calorie ability.  However,  she loves vegetables tomatoes, and celery are among her favorites.  While that is great for vitamins and nutrients, there are little to no calories in them (hence the reason that I consume so much of them=0).  I think she half asked to see if I was serious about letting her choose what she wanted to do.  So I made her a salad complete with her one her favorite foods…tomatoes.  But freedom, she picked up her fork, she ate it.  She was happy.   Success??  Kinda.

The story of Daniel in the Bible comes to my mind, and I pray that God can use the fruits and vegetables to His glory through her little body.  He was able to make Daniel strong and healthy without the finest foods.  I know that He is able.  We have her appointment in 2 weeks and I know that the fear will creep up on us with that.  However, I will continue to lay this situation and Rachel’s food before the Lord daily .  I must!  Pray for me and dad to be able to let go and let her take care of herself, and for us to really just love and encourage her through this difficult part of her disease.  I feel my anxiety build with the what-if’s.  But, I need to remember that I serve a God who is in control of ALL of the what-if’s!!  There is freedom in that fact!

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