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Gymnastics Folow-Up

Why do emotional situations exhaust your soul? I don’t know…but they definitely do. =)

I haven’t had an update on the gymnastics issue, (and quite honestly I was just hoping that it would just go away).   We didn’t go for two weeks.  Then a friend observed that the mom with cf didn’t come the last few weeks, we thought we would try going again with the knowledge that we would just leave after I talked to her on a day if they were there.  We cautiously went to class one day last week.  She was not there but I was able to get an email address from one of her friends.  Her friend also said she rarely comes. So feeling a little hopeful, I wrote her a note kindly asking if she was planning on coming to gymnastics, to protect both her and Rachel, to let us know and we would just attend a different day. I tried to explain the situation as if she was educated about cf (somewhat knowing that she was possibly not).  I also clearly said that we would be more than willing to just choose a different day to come to protect both of them.

A little back story, this mom has been pretty healthy all of her life. She Has only known about her having cf in her late 20’s (so clearly did not grow up with the same difficulties that we or SO MANY that we know have already encountered.  Maybe thought she had asthma? Little harder time getting over colds [however, no digestive/weight issues which is a tell-tell sign for 80%-90% of those with cf ]). She has not educated herself very much since diagnosis, and is not regular with her treatments AT ALL according to her. However, she has been hospitalized as recently as this spring over “a cold she couldn’t get over”.

So the rest of the story. Tonight we showed up at gymnastics. I was aware and watchful for the kids and mom. (Remember, I didn’t really know who I was looking for since my mother-in-law took my kids last time and gave a brief description) Class was about 20 minutes from being over and I casually mentioned to the cf mom’s friend that I had sent her an email asking to let us know when she was planning on coming so we could go a different time. She said, “Ya, she is sitting in the car. She’s kinda really mad and totally doesn’t understand the big deal! She said she has NEVER heard of any issues with people with cf bring near one another!” Instant tears came to my eyes. 😦 first that I had unintentionally offended her, two that cf can throw such curveballs at you, and three this is one of the first times that I have encountered someone in the cf community personally that didn’t “understand” the gravity of cf.  I just spoke with a mama with an grown cf son on Sunday at church.  We were encouraging one another and identifying that the struggle is real and the many, many layers that are present in dealing with cf and how it affects everyone in  your family and so on.  It was encouraging to know someone understood the pain and heartache of this disease face to face since so much of our support it online due to the issues of cross contamination.  So to now be faced with a person that just had no idea and was angry at me for trying to protect my child, was hard.

I have said it many, many times.  Cf is difficult on so many levels.  The workload, the medicines, the worry over finances, the constant worry…but then to not be able to be around anyone like you feels kinda like icing on a icky cake sometimes.  I don’t know any other disease where you can’t be by people that are like you (I’m sure they are out there..but I dont know of any.)

I asked my friend to bring my kids out and to pray for me as I went out to talk to the mama. (I tried to pull myself together a bit first as the tears were hard to hold back.) I went to her car door and introduced myself and the bitterness and irritation poured out from her. That of course increased my already heart heavy burden. I apologized for possibly offending her. She went on to say that she has never heard of it being an issue to be around others (she also has siblings with cf, so I wonder if that also colored her understanding).   As I tried to just again reiterate the fact that we were more than willing to just stay home if they were planning on being there she kept saying she is very mild (however, does not know her mutation). I went on to tell her that Rachel is not considered mild! Her cf started out TOUGH!  Nothing about her cf has come easy.  The doctors on several occasions have referred to her cf as moderate to severe category (Cf related asthma has not helped). I also explained that Rachel has staph and that she could as easily pick that up from Rachel, or pass unknown bacteria to Rachel. I could tell she totally did not understand, and that what I was saying was completely foreign. That broke my heart!  All I could think about was the many that I know TODAY that are in rough spots and this woman was either in complete denial, or had been blessed greatly and did not really even grasp how blessed she was.  She told me that she even called the hospital today and they didn’t know anything about cross contamination. I was like really, because I can give you lots of information on it and the current cff’s standards to protect patients. (I honestly think she was fibbing with that.  I mentioned, that I personally know and have worked with Dr. Murphy on a panel as a parent advisor, and I couldn’t see him saying that.) She continued saying again that she just had not paid much attention to cf.

At that point my tears came flooding out!  I just looked at her and said, “Count your blessings! There is not ONE SINGLE day of my sweet girls life that we have not had to deal with cf! She came out fighting…and has had to so many days since! Every day we battle to stay well.” I apologized for the strong emotion, but I told her when you watch your child struggle so hard sometimes, as a mama you can’t help but wish life was different, easier! I have hope and faith that Rachel will grow very, VERY old…but there are so many days when in the back recesses of my mind…the fear is still very present that maybe, just maybe the struggle will get too heavy for her body to bear. The bulk of the cf community understands the fight.  This week we have our cf appointment and our weight is horrible and still wondering about diabetes.  But to know that we have had it easier than some.   This week alone we have prayed for many friends and acquaintances in the cf community…a friend whose precious 10 year old has had a 2014 chalk filled with hospitals and iv’s and surgeries, a mama I know was thrilled that she could do home iv’s instead of weeks in the hospital away from her family, a friend whose sweet girl is in the hospital and mama can’t visit because she has a cold,  and another whose kiddos just got feeding tubes, and a sweet 9 year old passed away… and…and, and it’s JUST TOUGH!!!  I told this mama seeing her sitting in her car, “There are more days that I can count that I just pray to God that my baby GETS the opportunity to GROW UP!” I think that truth hit her.

I am not sure she knows just how blessed she is. I told her much of my tears were simply because our journey with cf has been HARD.  There was also a profound sadness and reality that our two journeys with cf were vastly different! We ended our conversation as the kids came out. I wished her well and she agreed to kindly let us know when they were going to be there.

My friend was there with my kids as they came out.  Thankful that they were playing with their friends because I truly feel apart when she asked me how it went. It seems there are SO many layers of the emotion of a disease sometimes. Seeing Rachel playing with her friends as we talked…made the tears continue to flow. I don’t often talk about the possibility of her not getting the opportunity to grow up, but the reality is, despite our best efforts cf stinks! It steals lives every.single.day! We fight like crazy to do what we can…but we simply don’t know the future. Things don’t always work out like you had hoped or wanted. I am motherless child…and I CERTAINLY did not want to be!! God called my mother home, and I know it was for her benefit, and that there is good in it for me somehow through the pain.  However, it is also a constant reminder that God’s plans are not ours. He is bigger and knows how everything is to work for our good and His glory. Death and sickness is something He allows. 😦

My heart hurt for Rachel. She knew I was crying because of that conversation. I have heard older people feeling really sad sometimes watching their parents struggle and cry because of cf.  The cf mama’s friend (the one that gave me her email) stayed around and chatted with my friend and me afterwards.  She was very sweet and encouraged me that her friend really needed to hear the seriousness of this disease.  She has seen her sick and stated that it “was NOT pretty”!  She also said that she has had to work pretty hard to ignore her cf too.  All I could say was…truth is, she is STILL ALIVE!  Many in their 30’s are not!  She asked if I could bring or send her some information sometime. Not sure if the cf Mama is ready for that or not, but certainly for tonight she had to walk away with a bit of a different view having been exposed to our live and struggles.

The ride home was somewhat quiet, although I tried to cheer it a bit. I also tried to remind the kids that God is ALWAYS in control! He has a plan and a purpose for all He allows. His plan is perfect and how it was good to finally get to chat with that mama. Tomorrow, I may just pull Rachel aside to check on her and to talk with her a bit more. Also to let her know that God was at work even tonight. Maybe we will even pray together for this mama and specifically that she finds Jesus.  For tonight, I am beyond exhausted. This was a super busy day and I was spent before gymnastics…and after all the emotion of bringing cf front and center…I am BEYOND tired now. Thankful and praying for a good night of sleep.

**Just to be clear, not often do I let the emotion of my “cf warrior mama” come out they are there, just hidden beneath the surface most times.  HOWEVER, when it does come out, it is emotionally exhausting! Consequently, it also seems to be the times I most blog about too. That deep emotion that only words on paper and a prayer in my heart can soothe. So sorry that It may seem like life is always hard…it is certainly not! We are blessed in the most amazing ways, and by the best support group of friends!! My blog is, again, my processing medium and tool so often with cf (someday, I may make it private again, but for now there is a healing in sharing the struggles).

Celebrate the struggle…for there is growth and a deeper
dependence on the Lord if only you look for it! Heavy black heart

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