Tuesday, June 13, 2017

Dear Senator

Y'all. I can't even. Healthcare reform is slowly killing me. Half the time I can't bring myself to turn on the news and half the time I can't look away. I get a knot in my stomach every time I see an email from the CF Foundation urging me to contact my representatives about the dire impact the proposed healthcare legislation will have on the CF community. It is easy to feel insignificant, to feel like my voice can not possibly be heard in the current stream of continual political nonsense. This is a battle I did not ask for and do not feel equipped to fight. But Caleb is counting on me.

Here is the letter I wrote to my senator today:

June 13, 2017

Dear Senator,

I am writing to you today to express my concerns about the proposed healthcare legislation currently begin considered by the Senate. My concerns are many and very personal.

My seven year old son Caleb was diagnosed with cystic fibrosis when he was three weeks old. As you may know, CF is a genetic condition that affects several body systems and has a current life expectancy of forty-one years. In the 1950’s children born with CF were not expected to survive long enough to attend elementary school; now people with CF are living into adulthood, having families and careers of their own. These incredible improvements are the direct result of improved access to preventative care and cutting-edge therapies.

There are only 30,000 people currently living with cystic fibrosis in the United States. As you can imagine, the financial cost of keeping Caleb healthy is very high. In fact, without insurance, my husband and I would be completely unable to cover even one year of Caleb’s medical bills with all of the savings (including retirement) we have been able to accumulate since entering the workforce almost twenty years ago. Even basic preventative care for Caleb would be impossible outside of health insurance and one hospital stay, an inevitability in the lives of most with CF, would bankrupt us.

Caleb is currently very healthy and we have tremendous hope for his future. Without access to his daily medications and treatments, however, CF becomes a death sentence. While Caleb remains healthy, my husband and I can both continue to work and Caleb can attend school. Changes in his access to quality healthcare threaten more than just his health.

I will be honest, Senator; I am afraid. I can’t imagine knowing it is possible to extend and improve the quality of my child’s life and not be able to afford it. High-risk pools for the chronically ill are not the answer; even the most generous subsidies would not make the cost of Caleb’s medical care within our reach. Lifetime limits scare me to death and I hope we never go back to the dark days of pre-existing conditions.

My husband and I are both educated professionals, working hard to support the economy of this great state. We are conscientious in our decision-making, save for the future, and try very hard to “play by the rules”. We did not ask for our child to arrive with these special needs. We pray for a cure, and in the mean-time, we do all we can to keep Caleb healthy.

Please consider carefully the decisions you are making in the coming days. Your actions will have the greatest impact on your most vulnerable constituents. We have no way of protecting our son’s access to affordable, quality healthcare. For that, we are counting on you.


Caleb’s Mom

Tuesday, January 31, 2017

The 49-Hour Experiment

Last weekend we officially lost our minds. For years we resisted the temptation: we made excuses, we changed the subject, we bargained with our children, we ignored their pleas. Finally, we could take it no more. We threw in the towel, we gave up the ghost.

We got a dog.

Joshua first asked for a dog before he could form complete sentences. For a while we were able to put him off with all the usual excuses, but then Caleb came along and they ganged up on us. The pressure became so intense, we finally took leave of our senses and began the hunt for the perfect dog. We preferred to rescue a dog but had some limiting requirements: small, hypoallergenic, housebroken (because who has time for that?!), and good with kids. With these severe limitations, we felt pretty safe that such a dog does not exist.

We were wrong.

With the help of an adoption specialist at a local shelter, we located a dog that seemed to fit the bill. On Saturday we went to meet her. The shelter was crowded, small, and very smelly, so you know Joshua was ready to leave about 2.4 seconds after we arrived. We were escorted into a small room where we met a few dogs, including the one we came to see. While it was not love at first sight, we liked her enough to choose the "rent to own" option the shelter offers - pay a small fee, take the dog home for a two week trial-run, and then either complete the adoption or return the dog with no strings attached. In hindsight, I think we would have agreed to just about anything to escape the confines of that tiny, stinky, hot room.

We came home to prepare for our new addition. Beds, crates, toys, food, collar, leash, treats, blanket. Fellow shoppers at Petsmart congratulated us like we had just given birth. I had no idea there were so many different varieties of dog food to choose from and stood paralyzed on the dog food aisle until someone took pity on me and told me what to get.

MANY dollars later we were all set. I took the boys to get the dog from the foster family on Sunday afternoon around 4:00. We were continually amazed at her sweet disposition all evening. She played fetch, she sat by the door when she needed to go out, she was quiet and unobtrusive as we went about our evening treatments and chores. I couldn't believe our luck. When Darrell got home from work, we chuckled when she growled at him before quickly submitting to his doting attention. She curled up in my lap while we watched TV and slept in the chair in our room that night as if she always had done. I tried very hard to ignore the allergic itch in my nose and the tickle in the back of my throat. This dog was a keeper!

Monday was an exciting day of sharing our news with friends at school. We wondered if she would truly have no accidents during the day and we looked forward to her greeting us when we got home. Once again we marveled at her training as we swept the house looking for "surprises" and found none. I intentionally dismissed the return of the itch almost immediately upon entering the house. Our new dog seemed excited for her afternoon walk and eagerly explored the small park close to our house. We heard her ferocious bark for the first time when we encountered a neighbor, but felt only grateful that she was already protective of our family.

You can imagine my surprise when she tried to eat Caleb just a few hours later.

I was sitting in bed reading a book, our new wonder-dog curled in my lap, when Caleb came in the room to tell me goodnight. Without provocation, her lip curled back and she bared her teeth, the hackles rose all along her back, and she let out a vicious yelp that shocked us all into paralysis. Caleb's startled sock feet found no traction on our hardwood floors and as he went down, the dog launched herself out of my lap, snapping and snarling, fully intending to attack my second-born. As he scrambled to his feet, his terrified, blood-curdling scream bounced off the walls and broke the trance. Darrell grabbed Caleb while I grabbed the dog. Scolded, she instantly went silent but the damage was done.

From his room, Joshua said quietly, "I told you we shouldn't get a dog."

Thanks, kid.

Less than an hour later, she threatened the same behavior when Joshua came into our room while we were watching TV. Nope.

I thought it best to have her sleep in her kennel that night but she would have none of it. Darrell was worried about her being loose in the house while we were trying to sleep and I had to agree with him, but after a half-hour of whining, whimpering, and barking, I relented to let her sleep in the chair in our room. Darrell and the boys barricaded themselves in their rooms, leaving me alone with the dog. She wasn't content to sleep in the chair, however, and wound up sleeping curled against my back. Did I mention the dog snores? Loudly? Even the bathroom fan and a pillow over my head couldn't completely drown out the noise. I found it darkly hilarious that we were being held hostage in our own home by a small, four-legged despot. 

Caleb and I returned the dog to the foster parents' house (and their five other dogs) this afternoon around 5:00. The dog was happy to see her former doggie friends. Caleb was happy to say goodbye to the dog.

While texting the foster mom our sad news that the trial period had come to an abrupt end, I told Darrell how sad I was to waste the money on this experiment in pet ownership.

"Oh, no." said my wise husband. "That money was not wasted. That money was a worthwhile investment in the 'we don't need a dog' fund."

How right he is. We won't hear another word about getting a dog anytime soon. 

Parenting win.