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Very Thankful for Where We Are!!

Having a child with a serious disease is something that is with you ALL THE TIME!  There are many, many wonderful moments when life just rides.  It is busy, and crazy and very much like everyone else’s.  But there are so many hidden moments that remind you that your life is different.  While I am so very thankful for the place that we currently are at with Rachel’s stable health (other than the constant up and down with weight).  This week there have been a few of those heart saddening moments.  As I have said so many times before, I write to process my own emotions.  Some of those emotions are heavy and this is truly the best way for me to do it.  So…again while I am so grateful for the health that we currently have, I also know that I can not be lulled into thinking that we will always get to stay in this healthy spot and hence why these moments this week have been hard.  CF is a monster of a disease!  But God is good!!  ALL THE TIME!

Giggles and smiles.  Love her outlook on life!  God is so good.

Giggles and smiles. Love her outlook on life! Thankful for these smiles!

So here goes.

Sometimes there Are Phrases That… Make you cringe!!

Today we experienced one of them.  As we were riding home from a school activity Rachel chimes from the backseat, “Hey, Mama, when I die do you think that you could give this necklace that I got from my grandma to one of Shiloh’s, or Nathan and Caleb’s kids?”  As I tried to hide my gasp I said, “…Ummm what?”.  “Well, you know when I die I want to give people special things so they can remember me.”  Nathan interjected, “Well what about giving them to your own kids?”   Rachel went on, “Well, you know if I don’t live to be a grown up.”  UGGGG, with a heart of hidden sadness, I said yes, but affirmed the fact that we pray that all of our kids live to be very old, wise adults!

Now, I know that much of her thinking about this is due to her Great Grandma recently dying.  However, I also think that there is sometimes about the reality of living with a chronic disease.  She has wisdom far beyond her years in many ways, and thinks about things in a much deeper way than my other children.  With CF we are reminded that the day to day normal events are blessings.  We are so very thankful for the ordinary!!  Then there are times like today that it hits you hard that this is not just a child, but one that has already had to endure hard things; and, many more that yet are unknown to her, as she ponders life.   Of course conversations like this one would be hard with any of  my children, but somehow when it comes from one that will most possibly need to face these choices far too young, it is really hard.  And it stings!

As much as we try to guard Rachel, she is getting older and truly understanding life.  A couple of weeks ago we were watching this spot with a highlighted story.  It was about an amazing man in our CF community and how he has defied odds, and done so with such vigor and tenacity.   https://www.youtube.com/watch?feature=player_embedded&v=sLLS1W8nddg Here is a link to the story if you want to watch it.  (Since CF is such an isolating disease, it is not often that she sees others doing life as she must.  She has never met another CF person face to face, due to the cross contamination issues that they share. So when we see things about CF, we tend to gravitate towards it to show her amazing people like her.)  The story chronicles Jerry Cahill’s life and the many challenges that he has faced.  The first minute of it, made me wish that we had not called the family in to watch it.  The title was Courage in Sports, but I didn’t think about him actually telling the “ick” of life with CF.  Or how his parents were told that he would only make it to… I nearly jumped up in front of the tv.  We want to show Rachel people that are doing amazing things despite CF.  However, we somehow want to guard her from knowing all of the possibilities of awful realities that come with this disease.  I know that we can’t forever.  BUT, as long as she is “not there”, we really don’t want her to have to carry the heavy load (yet) of knowing the difficulties that may or may not be in her future.  We tried to buffer the ick of the video and chose to watch the remaining part of the story, because we have watched Jerry’s life and story for years as he is very inspirational on so many fronts in the CF community (after all he is over 50!!! He has been running with an oxygen tank for a very long time).   While we knew that the story had a great ending, it was still hard to watch.  Rachel was course loved seeing him do treatments on tv and all of his bottles of pills.  Then he started talking about the age expectancy.  I nearly jumped up in front of the tv again.  I don’t want Rachel to know what is “expected” of her life.  I want her to know that the sky is the limit and that the Lord has each one of her days numbered!   We talk alot about this with all of our children, but it is somehow different with her.  CF has taught us to cherish each of those moments!  The hard part is, as much as we guard, we also try to be very honest with her and I do think that bits and pieces are starting to make sense, sadly enough.  For example each Dr. appointment that we go to, they are still so surprised that she has yet to be hospitalized (since birth).  Each time we give glory to the LORD!

One other moment from this week.  We were all talking about what we want to be when we grow up.  Rachel said she wanted to be a military person.  She also thought she might like to be a fighter pilot.  She has an incredible amount of bravery in daily situations (as well as CF), but the truth of the matter is, she will never be able to be a military person or fighter pilot.  CF is an automatic disqualification on any branch of military service.  But…we let that dream live on for a while, as I am sure she will change her mind several times before we really need to worry about it.  But it is another one of those things that I currently carry, but someday she will too have to carry. =(

Horse happiness.  We met some amazing people that give ridding lessons.  It was a huge blessing to see the joy on all our kiddos faces.  Rachel is horse crazy though, so it was amazing for her!

Maybe she will be a horse trainer.  She loves them!!  Horse happiness. We met some amazing people that give ridding lessons. It was a huge blessing to see the joy on all our kiddos faces. Rachel is horse crazy though, so it was amazing for her!

One last reflection.  This morning one of our CF people posted about a 9 year old that is really having a hard time.  All he wanted for Christmas was letters.  I quickly got out paper to write to him.  Signed it fellow CF family fighting for life and breath.  As I sat looking at that envelope, I prayed.  I prayed hard for that family that may or may not have another Christmas with their young boy.  I prayed for comfort and strength for all of them as they traverse this path ahead.  I prayed for the family to know Jesus.  It brought tears to my eyes as I also prayed for my seven year!  CF is such a heart wrenching disease.  While we are in a really good place currently, we have also experienced times when Rachel’s health has been so low that you start to wonder when and if things are going to get better.  Although, I do not know this family, my heart breaks for them.  We prayed for a God’s mercy for them.  All the while, in the back of our heads, knowing that our healthy, current situation can be shaken at any moment.  We rejoice in the goodness of the Lord’s grace and mercy for today!!!

Love this picture!  Rachel and her cousin enjoying life and this picture shows it.

Love this picture! Rachel and her cousin enjoying life and this picture shows it.

Precious kiddos.  We enjoyed a fun time at the park the other day (65 degrees in late November is amazing)!!

Precious kiddos. We enjoyed a fun time at the park the other day (65 degrees in late November is amazing)!!

Thankful for where we are at today!!!

Rejoice always and pray without ceasing!


4 Responses

  1. Dear, DEAR Tiffany. I write with a lump in my throat, thankful beyond measure that God knew exactly what He was doing, giving your precious Tiffany to you and Paul. You are as strong and wise and kind and tender as you need to be, and oh, how very fortunate are all your children that they were blessed with you and Paul as their parents! Marcia

    • Marcia,

      You are such a blessing and an amazing encouragement to my heart! Thank you for taking the time to respond. As you well know…God is amazing and there is nothing like watching Him work in and through life’s good and tough places.

      Think and pray for you often.

      In His Strength~

  2. My heart hears you…praying for Rachel and you, always.

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