Two of my Passions, Front and Center

Ironically in response to my last post on having more children when you are knowing carriers of a disease, last night our local paper featured an article put out by the Associated Press on just that. If you care to read this article you can find it here:

http://seattletimes.nwsource.com/html/nationworld/2011099346_gene17.html

I couldn't leave it without advocating, first for life and then for the Cystic Fibrosis Foundation.

Here was my response...
Editor, Daily Union:
I am writing this letter in response to “Tests curb some genetic diseases” by the Associated Press as featured on your front page. The second paragraph caught my eye: “Births of babies with cystic fibrosis…seem to have dropped since testing came into wider use…” As a mom to two children with cystic fibrosis I was thrilled to see those two words appearing on a front page newspaper article. We had never heard of the disease before our children were diagnosed so to see it in the “lime light”, I have to admit, was quite glamorous. But as I continued to read my excitement slowly diminished to anger then to complete outrage. While I can not speak for the other diseases mentioned in the article, I do know enough about cystic fibrosis to articulate what the reader was misinformed about. The focus did not highlight the amazing work of the Cystic Fibrosis Foundation, namely that it has raised life expectancy from 5 to 38 years in its 50 years of existence or that the foundation is considered one of THE best non-for-profits in the country donating 90 cents of every dollar directly to research. The phrase “severest form of cystic fibrosis” also puzzled me. From my research and very extensive education I have read and been told time and time again that each of the more than 1,000 mutations of cystic fibrosis affect persons on an individual basis. The most common mutation, the gene both my husband and I carry, Delta F508 is not a “one-size-fits-all” gene. It affects my son differently than my daughter, and differently than other patients we know with the exact same copies of the faulty gene. It is exactly the same in the case of different forms of cancer affecting each person differently. One patient may go into remission while another loses their battle. The only shred of decency in this contaminated article was the last paragraph on newborn screening. When our son was diagnosed in 2005, Wisconsin was one of 3 states that required newborn screening. Now 5 years later all states require it has routine infant health care. That should be the real headline because that is what truly is saving lives. Contrary to my values and beliefs, the article gave credit for this new decline in genetic disorders to abortion. Really? Saving lives? Do we not see an oxymoron in that concept of “saving lives” through the means of abortion? Our nation’s solution to this problem has been genocide. America is considered one of the more advanced countries in technology yet we continue to take the short cut to find a solution to what we deem a “problem.” We can and should hold ourselves accountable to the utmost dignity for all human life in medical advancement. Yes, I may be completely biased in my opinion because I care for children with a genetic disease, but when was the last time you heard someone tell you their “real” thoughts on caring for their special needs child? They don’t see the DISEASE they see a son, daughter, a sister, brother. Before our children were born I could have never imagined my life caring for special needs children. But now, I can’t imagine my life without them. They have taught us compassion, how to truly live each day to its fullest, and brought many people into our lives that we would have never been allowed to know had it not been for their illness. We would have never become involved in raising money for advancement of research, and for valid reasons since we didn’t have a personal connection. In all humility it is because of our children that we have been allowed the privilege of raising nearly $90,000 for the foundation in the past four years. My heart aches for those parents in the article that did not choose life, but rather death for their unborn child. They are really the ones missing out on an amazing experience. As a pro-life advocate and cystic fibrosis mom I want you to know that regardless of the way in which we “destroy” this disease we are not moving forward. We are only setting a path of self-destruction for the future generations. In an interview with Blessed Mother Teresa, a modern –day saint, was asked why God hasn’t sent someone to cure AIDS, cancer, etc. She said without hesitation that he probably already has but that child has been aborted. Who are we to say what these children could have potentially been? What they could have accomplished? My kids will hopefully live to see the day that cystic fibrosis is cured. In an article featured in USA Today in 2006, Pamela Davis, a professor at Case Western Reserve University who specializes in cystic fibrosis reported: "This is an exciting time. We're almost at the point of changing this from a fatal disease to a nuisance.” In more recent years, cystic fibrosis has been coined by researchers and doctors of the “medical miracle of this century.” The real headline should have been “Tests destroy people with genetic diseases.” Without living patients how will we continue to advance the lives of those that survive with diseases daily so that the medical field can continue to find better treatments and potentially cures? We won’t and we will have allowed ourselves to be sold again on the lie of abortion. Death will never bring life.



Tiffany Topel

My Addiction

Confession: I have a new addiction.

It's with the Pioneer Woman (aka Ree Drummond) blog. Especially her section on cooking. If you're not familiar and not afraid to become a fellow addict, I highly recommend taking a peek. I didn't realize how bad of an addiction it has become until dinner tonight when I realized I had made a 4-piece meal with three out of the four being Pioneer Woman recipes. But seriously they are way amazing (totally fattening-I'm pretty sure it accounts for 20 lbs gained since I found the blog in June besides my pregnancy weight gain).

On the menu tonight:
Crispy Yogurt Chicken-http://thepioneerwoman.com/cooking/2008/08/crispy-yogurt-chicken

Potato Salad-http://thepioneerwoman.com/cooking/2009/06/fourth-of-july-week-perfect-potato-salad

Buttered Rosemay Rolls-http://thepioneerwoman.com/cooking/2009/10/buttered-rosemary-rolls

Pioneer Woman has the greatest, sarcastic humor EVER. At the end of one of her fabulous bread recipes she writes "now, quick run to the treadmill!" She is also a woman of deep faith, using her God-given talent to the fullest.

Back to reality...
I celebrated my 25th birthday yesterday. It was fabulous, except that Chris was missing. He left for his new job in Brillion and we're doing OK. As in the opposite of great or terrible. I had an amazing night at youth group with ten awesome middle schoolers. I had FINALLY gotten them deeply concentrated in prayer about Lent with their eyes closed. SILENCE. Then I broke out the cans of silly-string. They were totally shocked! I felt like such a little kid. I'm pretty sure they did too.

It seems like Lent always comes at a perfect time in my life, spiritually speaking. I need to clarify that last sentence: I actually feel VERY spiritually full right now, but I can feel the weight of temptation to doubt creeping in. Namely about Chris and I's decision to welcome new life into our family. Just for example, I always feel awkward "telling" or rather "waiting" for the doctors at the CF clinic to know that we are expecting. It has always bothered me. More so because I didn't know WHY it bothered me at all. Two years ago I read the beginning of "The Life of Alex" a story about a young girl who died of CF many, many years ago when she was just 7. The author of the book, Alex's dad, made a startling statement that sent shivers up my spine. He said that people who choose to continue having children knowing that they are carriers of the CF gene are ignorant. Confession: I stopped reading the book right then and there. Granted this book was written when a CF patient's life expectancy was 10 or 15 I felt his finger pointed directly in my face. Shame on you!

And now I understood why it was so awkward to tell the staff at the Children's Hospital with a cheerful heart that we were expecting. For me, ignorance equaled carelessness. And it's not that I care what other people think or even if they judge me (ok, so I do!). A long, long time ago at the beginning of this journey Chris and I made a very large decision not to let CF define us. We have decided to live our life, for the most part, exactly the way we had planned. Chris and I always talked about a large family. At least 4 kids and maybe more. But our hope is to someday be able to adopt. It has been something pressing on our hearts more and more in the past couple of years.

Reading my Magnificat tonight, my eyes fell on the page for Thursday's Mass. The reflection read "Jesus declares, 'Whoever loses his life for my sake will save it.' This is sacrifice, handing our imperfect self over to the One who responds by handing us back our true self through his gift of self on the cross. The Lord sets before us life and death, and asks us to "choose life" by obediently taking up Christ's cross of death. 'Without dying,' without the demise of what is simply our own, there is no communion with god and no redemption." -Pope Benedict XVI.

I continue to pray for Christ's strength especially facing the new life we have been asked to care for. I am so grateful to have our Mother Mary to attach my worries and fears to. She endured so much. She desired God's honor and salvation. Regardless of the cost.

Swimming in the Deep End

Remember being a little kid and wanting so badly to swim in the deep end of the pool? I do. Oh, to patiently wait for your turn to go under that magical line dividing the shallow from the deep. At the city pool where I grew up you had to swim so many laps and tred water for so long to cross over.

This weekend I took 5 amazing kids to our diocese rally, Resurrection in the Dells. The theme of the weekend was "Put Out into Deep Water" based on this Sunday's gospel of the account of Jesus beckoning Peter to cast out his fishing nets. If you're not familiar, here's the gospel according to St. Luke:

While the crowd was pressing in on Jesus and listening
to the word of God,
he was standing by the Lake of Gennesaret.
He saw two boats there alongside the lake;
the fishermen had disembarked and were washing their nets.
Getting into one of the boats, the one belonging to Simon,
he asked him to put out a short distance from the shore.
Then he sat down and taught the crowds from the boat.
After he had finished speaking, he said to Simon,
“Put out into deep water and lower your nets for a catch.”
Simon said in reply,
“Master, we have worked hard all night and have caught nothing,
but at your command I will lower the nets.”
When they had done this, they caught a great number of fish
and their nets were tearing.
They signaled to their partners in the other boat
to come to help them.
They came and filled both boats
so that the boats were in danger of sinking.
When Simon Peter saw this, he fell at the knees of Jesus and said,
“Depart from me, Lord, for I am a sinful man.”
For astonishment at the catch of fish they had made seized him
and all those with him,
and likewise James and John, the sons of Zebedee,
who were partners of Simon.
Jesus said to Simon, “Do not be afraid;
from now on you will be catching men.”
When they brought their boats to the shore,
they left everything and followed him.


As I reflected on this during Mass prep. time using an ancient form of prayer for praying with the scriptures, Lectio Divina these thoughts came to me:

The fisherman had disembarked.
On a second read of this passage, it struck me that the fisherman were done for the day. They were cleaning their nets. Finished. That's when they were commanded to go back to work. How many times am I feeling "done," "finished" with my day or even the challenges I am given and say to God..."I'm done!" when He beckons me to go back at it.

And then, there's Peter's response:
Master, we have caught nothing, but ok I'll follow your command.
Peter's obedience is inspiring. He says OK at the command of Christ even if it seems silly.

They filled both boats.
And when we do obey Christ's command we will be abundantly blessed. More than we could have ever imagined or hoped for. The return is great.

Peter is ashamed.
In his humility and sinfulness, Peter feels unworthy of being called by this extraordinary man filled with extraordinary grace. But weakness aside, he leaves EVERYTHING he knows, EVERYTHING he has hoped for, EVERYTHING that he desires for Christ's hopes and Christ's desires.

I too feel like I am being called to put my life out into the deep water. The unknown of having a healthy baby has been a complete surrender of my own will, my own desires, and hopes. In turn, I pray that Christ will through his mercy and grace bless us even more abundantly than we could ever imagine!

But by the grace of God I am what I am,
and his grace to me has not been ineffective. St. Peter to the Corinthians (Chapter 15)

Turn Back to Praise!

Every blessing you pour out I'll, turn back to praise! (
Blessed Be Your Name, Redman lyrics)

Sorry for keeping everyone in suspense for the past few days. We received awesome news late yesterday that Trinity did not grow pseudomonas in her latest culture! No more 2 a day nebs!!!

This is a big deal, really, but right now it REALLY is a big deal. Our family will be starting a new chapter on February 15th (my 25th birthday) when Chris goes back to work out of town during the week. I keep thinking to my self..."I am so glad God didn't think I could handle psudomonas by myself!" Thank you Jesus and Mary for answered prayers. Thank You for praying hard. Please continue to pray for this new transition for our family to be a smooth one full of much support from family and friends.

With Patience

Without patience, we will learn less in life. We will see less. We will feel less. We will hear less. Ironically, rush and more usually mean less.
— Mother Teresa

Tomorrow we will find out Trinity's culture results. We are asking for prayers that she did not grow pseudo. again and that we can stop TOBI (God willing...). She had a good check-up on Friday; doctor and dietitian were very pleased with her pound weight gain in just 3 short weeks. Cayden needs blood work to check his white blood cell count since he has been on such a high dose of antibiotics for such a long period of time. Friday is day 28 and all the medicines will be finished! More later when we get the results...