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Finding Hope

As I write this, 20 year-old Jordan Ulrich is hanging on to hope and life. She, like my daughter, has cystic fibrosis. She has watched friends lose the battle to the very disease she has and she has lived. She has had a double lung transplant only to suffer from chronic rejection a year later. She has been told by her doctors that she is dying and that there is no hope. But she and her family have made their own hope. They have changed the story that doctors placed before them. They refused to let NO be the answer and to simply welcome death with open arms. Her mother Lesa works tirelessly to keep her daughter alive. She pushed and pushed and found a hospital and a doctor that have said, YES. Jordan is on the top of the list for another transplant. It has been weeks, yet she still hangs on.

Is having such strong hope inborn or can we learn to create it in times when we need it the most? I think both. I have hope that my daughter will outlive me, and even as I hear of people dying at such a young age from the very condition that she has, I force myself to hope.

Hope is easy to find when things are going our way. But when things take a turn for the worst, it is easy to find reasons to doubt ourselves, to doubt our decisions, to doubt our strength. But even in the toughest of times, there is life to be enjoyed. Make the most of it. Celebrate the good that is in your life, instead of focusing on the negative. It can do wonders to lift your spirits.

Don’t search for someone to blame like God or a doctor. Even if there is someone to blame, and usually there isn’t, it won’t get you anywhere. It might feel good in that moment, but in a week, a day, or even an hour, you will return to the despair. Accept your current situation as it is and move forward.

Trust in yourself and in God. Trust that there is a reason behind everything and believe that it will be okay. Trust that tomorrow will be new day with new promises and new joys and new hope.

Learn from your past experiences. Life takes us in directions that we never expected, but we can always learn from our mistakes and move forward. Lessons from the past can help us deal with the tragedies of the present and prepare for the unexpected future.

Follow Jordan’s lead. She and her family know all of this to be true and have managed to fight against the strong current, and they are winning. When a CF patient takes a lung function test it is referred to as “blowing numbers”. While awaiting her first transplant Jordan did just that and the numbers were low but she was able to do the test. Her mother asked her how she was able to do it and she responded, “I didn’t know I couldn’t”.

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About Nancy

I am a freelance writer focused on parenting children with special needs. My articles have been featured in numerous parenting publications and on www.parentingspecialneeds.org. I am the former editor and publisher of Vermont HomeStyle Magazine. I am a wife and mom to a two daughters, one with cystic fibrosis and one who is a carrier for cystic fibrosis.