Gratitude

Last night, we attended a Benefit Dinner/Auction in Avery's honor. Over the last few years, we've had people offer to have some sort of fund raiser, but we've always declined. Recently though, my sister decided that she wanted to have one, and she received a lot of support from friends. They put together a spaghetti dinner and bake sale/auction. It was a lot of work, and we felt so humbled by the efforts made on the part of so many people. I tried to help as much as I could, but most of the work fell on others. There were well over 200 people who came out and were so kind in their giving. We've never experienced anything like this, and we were amazed at how Avery's story has touched so many lives. Once again we were reminded of all the special people God has placed in our lives.

Some of the most amazing friends a person could have!

What a crowd!

Just a few of the items donated to the auction.

The guest of honor. :)


Phillip sharing a little and attempting to express our deepest thanks.



Again, I want to say THANK YOU to everyone who was involved in last night.

God bless!

Life's No Fairy Tale

“Once upon a time in a land far, far away there lived a beautiful princess.”

Fairy tales. We’ve all read them or had them read to us. And one thing is for sure, regardless how the plot unfolds, we’re absolutely guaranteed a happily ever after. And sometimes it becomes difficult (at least for me) to separate fact from fiction.

And then all of a sudden life happens, and that fantasy is shattered.

Am I the only one who struggles with disappointments? Somehow I doubt it, but I may be more susceptible to it due to my “life is all rainbows and roses” philosophy, as my husband so keenly describes it. I can’t help it; there’s something deep inside me that has always expected the best out of life. After all, you get out of things what you put in, right? And I tried my best to put all of the right things into it. I approached life with caution and careful planning, making sure that I set goals for myself and did my best to achieve. And then I fell prey to Phillip’s relentless wooing (and regardless of what he says now, there was some serious wooing involved :)), and a new piece of my “life plan” fell into place.

Here I am growing older, and hopefully wiser, and yet I still am sometimes struck with the contradiction of how things are supposed to be and the reality of what is. And it is in the middle of these occasional pity parties that I remind myself that despite the fact that my life isn’t a fairy tale, there are fairy tale moments along the way that if I don’t live in the moment, I may just miss. It’s easy to fall into the trap of worrying about the past and the future and in the process, neglect the present. I’ve told Phillip before that sometimes I feel like we say, “Someday, we’ll do… ” or “When we have the money…” or “When things with Avery stabilize…” The painful, non-fairy tale truth is that those days may never come. We’re even reminded throughout the Bible that we’re not promised tomorrow.

There is a lot of truth in the cliché: “It’s not about waiting for the storm to pass; it’s about learning to dance in the rain.” And of course there is, “Enjoy the journey” and “It’s not about how fast you get there; it’s about the climb.”

I didn’t write this blog to depress anyone; I actually hope I can encourage someone. Because if you’re like me, sometimes you just need to be reminded. Unfortunately, disappointments are going to come, and sometimes it seems like some folks get more than their fair share. Here are the words of Jesus, “In the world ye shall have tribulation: but be of good cheer; I have overcome the world.” John 16:33

While I certainly wish I were living in fairy-tale bliss each and every day, I know that if I keep trusting God, my happily-ever-after will come. It may not be on this earth, but it will come.

If you’re feeling discouraged, just remember, God is working even when we don’t see how. Keep the faith!
~Bethany

P.S. When I speak of disappointments, I’m not in anyway disappointed with my husband, family, friends, and certainly not God. I’m just speaking of life in general! Just wanted to clarify.

For My Valentine

All dressed up, sitting in a dimly lit restaurant, eating a delicious meal while engaged in witty conversation, and gazing across the table at my handsome husband...well, a girl can dream, right?

Instead, my handsome husband is at work, and I am gazing at my house that is in need of some serious attention. My delicious meal this evening has been a yogurt and caffeine free Coke, and I'm currently wearing my pajamas, looking more like a frumpy house wife than ever.

Although we don't get to celebrate our Valentine's Day in the style I might wish, I do want to say a few things for my Valentine.

Elizabeth Barrett Browning said it so well in her sonnet.

How do I love thee? Let me count the ways.
I love thee to the depth and breadth and height
My soul can reach, when feeling out of sight
For the ends of Being and ideal Grace.
I love thee to the level of everyday's
Most quiet need, by sun and candle-light.
I love thee freely, as men strive for Right;
I love thee purely, as they turn from Praise.
I love thee with a passion put to use
In my old griefs, and with my childhood's faith.
I love thee with a love I seemed to lose
With my lost saints, --- I love thee with the breath,
Smiles, tears, of all my life! --- and, if God choose,
I shall but love thee better after death.


My favorite line is:

I love thee with the breath,
Smiles, tears, of all my life!

The last few years have been rough, but I can't imagine surviving it without you! Somehow, we have withstood pressure that could have broken us; instead, I think we're stronger for it. I love you and miss you this Valentine's evening, and maybe, just maybe, someday we'll get to have the quiet dinner.

Happy Valentine's Day!
Bethany

Our Trip to Baltimore

Most of you who know me and my family know that the last few years have been quite a journey for our family! Our son, Avery, has many rare and complicated health issues that have been increasing in severity. So after having our doctors here in Dayton (who, I might add, are excellent physicians) tell us they were "puzzled," we were referred to specialists at Kennedy Kreiger Institute and Johns Hopkins University Hospital. The doctors there have amazing credentials, huge research budgets and research teams, and have exposure and experience with conditions that "normal" doctors just don't have. When our doctors first asked us how we felt about going there for help, we didn't hesitate to say yes. Yes, it was expensive and inconvenient, but we want to offer our child the best chance in life that we possibly can. So, it was with guarded optimism that we took just one more step in our journey to seek answers for Avery.

Avery's first appointment was with neurogenetics at KKI. We met with a doctor who is both a neurologist and a geneticist, a professor at Johns Hopkins, and is responsible for an impressive body of research. His colleague was also a neurologist with a Ph.D. pursuing another specialty in genetics. They were incredibly thorough going through every detail of Avery's medical history, which is quite extensive. They looked at nearly every inch of his body, making note of the shape of his head, length of his fingers, width of his pallet, and taking pictures of his hands, toes, and face. After three and a half hours spent scrutinizing him, they told me their observations and plan for the future. They wanted some additional records sent, specifically the disk of his brain MRI to look at the shape of his brain. They also are going to take some blood samples to look closely at some specific cellular changes. The doctor told me that he had some leads that he was wanting to pursue. He didn't give me any names or specifics so as not to put us on more of an emotional roller coaster, but he said he's going to look closely at the X chromosome and do some step testing, testing genes one at a time.

Avery's other appointment with with two oncologists that lasted around four hours. They said they heard of Avery about a year ago and had been looking forward to meeting him. They were surprised at how social he was because he was of course smiling and clapping. They agreed that many of Avery's symptoms were classic Diamond Blackfan Anemia; however, he also has other symptoms that are not typical of DBA. So, the next step is to identify if he has DBA plus something else, or if he has another larger issue all together. Our greatest concern recently has been Avery's platelet levels. Over the last year and a half, his platelet counts have dropped lower and lower. This is not typical of DBA. Avery's labs at JH revealed that his platelets dropped to their lowest point yet (24), but it seems like he's been setting a lot of record lows lately. The oncologists sent us home with a collection kit to be sent back after a bone marrow aspiration with specimens for them to study. We are going to schedule a bone marrow aspiration very soon to look for the oncologists' at JH biggest concern, MDS, also known as full bone-marrow failure. This is rare in kids, but since everything about Avery is rare, that isn't comforting. It's important to check for MDS and signs of leukemia, since DBA puts Avery at greater risk for both. If his test results reveal that this is the case, we will start talking about a bone marrow transplant. If not, then we're going to need to discuss a treatment for the thrombocytopenia (low platelets) as well as the anemia.

Another issue that came to light is that the doctors noticed a prominent heart murmur that they heard in the front and the back. The one doctor expressed concern that the blood vessels around Avery's heart may be too small. Ironically, when I was pregnant with him, I had two echocardiograms because the specialist I was seeing said there were some heart defects, including a major artery that was too small. We haven't pursued any cardiology testing since Avery's dismissal from the NICU, but that is probably going to happen in the near future.

One last issue we addressed was his nutrition. Avery's feeding is very poor, to say the least. We work very hard to get the proper calories in him, but as he gets older and the calorie need rises, this is going to become increasingly difficult. So, we're going to try to get some feedback from his doctors here and decide if we need to pursue an alternate feeding method like a tube. It's not ideal, but we feel that him getting the proper nutrition is too important to neglect.

Baltimore was a fascinating city, but we really didn't get to enjoy it. I'm so thankful for the opportunity to go there, though. Even though we didn't get any concrete diagnosis, it was encouraging to meet with doctors who have some new ideas and are going to continue researching and following his case. I think it was just one more step toward the answers that we've been trying to find. We're returning in September for follow-ups.