Musings on Motherhood :)

There are some moms in the world who seem to have it all together. Unfortunately, I'm not one of them. Don't get me wrong; I love my children with every ounce of strength in my body and try everyday to make sure all of their needs are met and they feel loved, but there are many times when I wonder what in the world I'm doing wrong and if my children will indeed grow up to be the God-fearing, productive citizens I hope they will become. This separation over the last few months has only complicated things.

Bryson has grown more and more independent...which of course, is a good thing considering he is away from his mom and dad a lot of the time, but it can also be a problem when I say "No" and he has ideas of his own. Emerson seems like a new baby every time I get to go back home with her. Her sleeping habits and schedule are different depending on who has been watching her and how she's dealing with whatever new phase she's in (and you know with babies, it's always something new). What worked to calm her down the week before may or may not do the trick a week later when I see her again. I always feel like I'm struggling to catch up with her and keep Bryson on the straight and narrow. Don't even get me started on Avery; he is in a league of his own!

And I think one of the biggest battles I fight as a mom is guilt. I'm not sure if that is normal or if I just set really unreasonable expectations for myself and then react poorly when I can't achieve them, but I often feel like I've just not done enough or handled the situation well enough. I think if only I knew the trick to disciplining a 5-year old. Am I too firm? Too relaxed? Not consistent enough? Am I damaging him somehow that will affect him forever? What about my little girl who I just feel heartbroken to have to leave her and miss so much? My sister and mom sent me a text of her licking a potato chip and then eating mashed potatoes, and I started bawling. She just seemed so big, and I wasn't there giving her those first bites.

Yes, I realize that I might sound like a raving lunatic. I promise, I try so hard "not to sweat the small stuff" as some parents advise, but that's difficult for me!

The other day as I was getting on an elevator at the hospital, I witnessed something that made me laugh and wince at the same time. There was a father with his hands full of bags of food and two little boys, one who was much too big to be riding in an umbrella stroller (considering he clearly could walk) and the other who was trying to push his brother in the stroller. The one in the stroller wasn't buckled in and wasn't cooperating. He was whining and begging for something as he stretched forward in the stroller. His brother kept pushing as his brother fell out of the stroller onto the floor, taking the stroller and his brother down on top of him. Then the yelling and screaming really started. There was a line of people waiting to get on this elevator, and a few like me, chose to wait for the next one rather than attempt to ride a few floors with them. I actually winced as the crash occurred and then watched in amazement as the dad really didn't even seem to notice. He just stepped over them, got on the elevator, and waited for his wild boys to join him.

My first reaction was to think, "Come on, Dad; get your boys under control." And then my next thought was, "Don't judge, Sister. Yours aren't so great either." I saw some of the folks standing around show expressions that clearly were condescending toward this rowdy bunch, and I couldn't help but wonder if they were from the group I mentioned earlier...the ones who have it all together. Perhaps their children are calm, well-behaved, and good-listeners. But as for me, I have learned to never say never. All those times before I gave birth when I saw children do things and vowed mine never would...I'm recanting now! Instead of being frustrated at the screaming child in the restaurant or grocery store, I usually just feel sympathy. I have been blessed with the fact that Bryson has never been a fit thrower. I'm not sure why, but he has never put himself in the floor or screamed or kicked, but even when I see that occur, I don't judge.

Now if you know me well, you might think it's strange that if I were able, I'd love to have more children. I'd like a house full! No, I'm not a massacist or a glutton for punishment. I read the other day a comparison to parenting that really struck home with me. It compared parenting to mountain climbing, and the absolutely grueling, life-threatening, and dangerous experiences that a climber places him/herself in as he/she trains for the climb and then actually climbs. Along the way there may be great perils, but there are also some amazing views. Finally, at the top of the mountain the climber has reached a point that allows him or her to feel such exhiliaration and sense of accomplishment, and it isn't long until the climber is planning and training for the next harrowing climb. The crazy days of being a parent are similarly offset by the joys that come along with it.



But until I figure out the secret or find a magic wand, I guess I'll just keep on climbing, enjoy the joyful moments, and endure the not-so-joyful ones. :-)

~Bethany

Good Riddance 2011; Hello, New Year!

Well, we made it through Christmas, and it was a lovely day. Phillip and I were up early (around 7), creeping around, trying to get everything ready for our Christmas morning. He had to slip out to the van and get "Santa's" gifts since we were limited on hiding places in our room at RMH. Then, around 7:30, Phillip and I sat on the couch and listened to our babies snore. Finally, around 8:15, we started being exceptionally loud on purpose, trying to rouse them. Bryson sat up and rubbed his eyes, still half asleep. I said, "Bryson, Santa came last night," because there was some concern the night before that he wouldn't know we were at the Ronald McDonald House and not at home. He said, "Yeah! I knew he would find us!" Then chaos ensued. Bryson got to "help" open all of Avery and Emerson's gifts as well as his own. Our little room was a wreck! The best part was just having all three of my kids together. *Bliss*

The next morning, Avery started having blood in his stool. After the second one, we called the BMT doctor, and they had us bring him back to the hospital. He was readmitted for 5 days. His bleeding got worse that evening; at one point, he was just passing straight blood. Then, the bleeding stopped, and after a few days, he was discharged once again.

Now we're creeping up on a week since his last discharge. This is by far his longest time out of the hospital, and I'm hoping it's an indication that he is on the mend. Right now, I'm at the Ronald McDonald House with Avery. My other two kids are at my house with my mom, and Phillip went back to work this week after a month off. Avery has appointments almost daily across the street at the hospital that take up much of the day, and then my time at the RMH stays busy prepping and hooking up his 18 hour TPN, giving him 2 IV infusions of cyclosporine daily, and 5 meds through his nj in the am and 4 in the evening. He's still not eating or drinking much, but I sure spend a lot of time trying to feed him.

I have to say that this year has been difficult for sure. Besides the birth of my precious Emerson, my year has been filled with much stress and many disappointments. The separation from family has been so tough for me. I'm not sad to see 2011 come to an end. I can truthfully say that God has gotten us through...miraculously, because there is NO way Phillip and I could bear this on our own.

I'm looking forward to marking the next few months off my calendar of 2012 since one thing that has kept me sane is looking ahead. Surely, this year will be one that life starts to regain some normalcy and Avery's health begins to improve! I'm ready for a new beginning. But, I've learned that you never can tell what lies just around the corner for you. Thankfully, God knows. He's already there, and I'm trusting that He will provide the grace we need.

Happy New Year!
Bethany

All I Want for Christmas...

In a world where people pepper spray unsuspecting shoppers to keep them from getting in the way of a bargain, I think it's safe to say that many have lost sight of the important things in life. I think I've been guilty as well...not of pepper-spraying, but of just getting caught up in life. This year has certainly put things back in perspective for me though.

Last night, a young girl only 3 doors down from Avery in the BMT unit lost her fight for her life. As I watched that family huddled together crying, I couldn't help but feel like crying myself and realize how much I have to be thankful for.

If all goes well, Avery is going to be discharged today to the Ronald McDonald House. He's getting a red cell transfusion as I write, and his ugly rash has been seen by 3 specialists who still have no clue what it is, but all agree it isn't GVH, THANK GOD! With his history of the last two times being discharged resulting in a quick readmission, I'm simply hoping that the third time is a charm. I'm OVERJOYED at the thought of my family being together. I'll admit...I'm nervous. Avery is pretty high maintenance these days. He's fussy, likes to be held, and requires several iv meds, oral meds, and 20 hour TPN throughout the day. Not to mention the fact that all the extra fluids means more than usual diaper changing among other things. I'm also nervous about the germs he's going to be exposed to, even though we're in isolation at the Ronald McDonald House, and you better believe I'll be taking that temp pretty often. But I just can't wait to get us all together, chaos and all.

Christmas for us is simple this year. We've been separated, and I've not done much shopping. But the gifts and decorations, although lots of fun, aren't what it's all about anyway. We have a little Charlie Brown tree with a few presents waiting, but above all, we have each other.

May we cherish the moments we have together and remember that day so long ago when Joseph and Mary were far from the comforts of home when baby Jesus was born in a lowly stable. I'm sure they were frightened and worried, but also so thankful and in awe of the precious baby they were blessed with.

It may sound cliche', but seriously, the only thing I want this year is to be able to spend time with my beautiful family, and see my little Avery enjoy the day pain-free.

I'll update you with the details of what I pray is going to be an amazing time with my family and hopefully, a turning point for Avery's health.

Love to you all on this Christmas weekend!
Bethany

My Middle-of-the-Night Prayers and Worries

Well, it's 4:30 a.m., and I should be sleeping. Instead I'm lying here worrying and praying. There are some who say that worry and faith can't co-exist. All I know is that I'm trying so hard to trust right now. But my heart is heavy thinking about my little man lying a few feet away from me. For the last hour or so my prayer has pretty much been something like this: "Lord, get us through this. Please, Lord, just get us through this." It's certainly not an eloquent prayer, just a sincere and desperate plea from a weary Mama.

Between whispered prayers, my mind turns to the question I've asked often...when will it ever end? When can I stop just surviving life and actually start living? When will I be able to look into my three precious kids' faces and just feel happy we're together, not feel the need to cram as much quality time as I can before sending them off again or feel like I'm choosing between who needs me the most at the moment. Sometimes I look at my husband, and even if we're in the same room, I feel so separated, and then the days and nights when we're apart, which is most of the time, I just miss him. Phillip and I have only actually stayed under the same roof 5 or 6 times over the last 10 weeks; Bryson has only seen Avery once in 10 weeks, and my family of five has not been all together at all during this time.

I know I sound so whiny right now. I also know that things will probably seem some better in the morning. But I'm growing impatient with this process and when my mind starts wandering like it has tonight, I feel a little overwhelmed with the journey that lies ahead.

Please pray that the skin biopsy that they're going to do today will give us an idea of what this awful rash is and how to treat it. Please pray that it's not GVH. Also, please pray that Avery will start growing stronger, the fevers will stay away, and that he'll star to eat a little. It would mean so much to start seeing some improvement and be able to have my family together some. I'm so thankful for those of you who pray for us.

--Bethany

Update

I know, I know -- incredibly boring title. Sorry, friends. I'm fresh out of anything creative or interesting.

For those of you who read this blog simply to keep up on Avery's progress, I'll not keep you in suspense. He is still in the hospital. Last time I posted, he had been readmitted only 12 hours after his discharge. After four days in the hospital, he was once again discharged. Phillip, Emerson, Avery, and I had almost 48 more hours before he once again spiked a fever, and Phillip made another midnight trip to the ER, where he was immediately admitted. That has been nearly a week ago. We're hoping that perhaps tomorrow he will be discharged once again. His temp was borderline this evening (it's not really considered a fever until 100.4...he was like 99.9), so I'm sure hoping and praying that he doesn't heat up. As far as an explanation for the fevers, the best we can figure is that his immune system is still so weak and being suppressed with anti-rejection drugs that any bug at all is causing him to run a fever. His blood counts have been a little lower than they had been, but that could be caused by whatever bug he is fighting. He also has a nasty rash that seems to be getting worse. It almost looks like chicken pox, but it isn't, but it's that kind of blister-y rash. And one of my most worrisome concerns is that he will NOT eat at all. The docs think that his esophagus has closed up again, but since his counts are too low to do a dilatation without putting him at risk for infection, it's just going to have to stay that way for awhile. They placed a new nj tube today to try to keep it open and help with oral meds. I'm just so worried that he's not going to eat again. You just have no idea how much effort we have put into getting him to eat as well as he was prior to BMT. I really hope that he is able to find his way back to where he was.

As you might imagine, life has been just crazy for us. My stress level seems to be almost as high as I possibly think it could be...and then it seems something happens to just increase it. I don't know how many times people have told me how strong that I am, and how they don't know how I do it. Honestly, I'm not strong, and I don't know how I do it either. But I do know that when I am weak, He is strong. Surely God is providing the grace to get through one day at a time because I just don't have the strength on my own.

I'm sure some have quit reading by now...I can't say I blame anyone. My blogs have got to be the most boring and depressing thing to read. Unfortunately, there aren't a lot of bright spots right now to focus on, but I'm hoping that that turns around soon.

Just when I think I've got it bad, I'm reminded of so many others who are hurting and facing their own trials. The other night in line for dinner at the Ronald McDonald House, a new mom standing behind me was talking about her one-week old baby who had almost died the night before. She said that they were giving the baby just a couple of hours to turn around, otherwise they were going to start comfort care. I see other kids come and go from the BMT unit, little bald heads and green masks just like my Avery, and I know that I'm not the only one hurting. There are hospital rooms filled with kids who are literally fighting for their lives and parents who are praying for a miracle.

But, something I must remind myself often of is that God is sovereign. He saw this coming long before I did, and he has a plan. He saw our beginning, and he knows our end. It's easy to feel like life has become a series of random events, but I recently found comfort in this passage of scripture.
Psalms 37: 23-26 The steps of a good man are ordered by the Lord, and he delighteth in his way. Though he fall, he shall not be utterly cast down, for the Lord upholdeth him with His hand. I have been young and am now old, yet I have not seen the righteous forsaken nor his seed begging bread. He is ever merciful and lendeth and his seed is blessed.

Not only does God see where I am, but he is ordering my steps. I'm so thankful for that!

Tonight we had a small Christmas get-together with my parents and Sarah and Rodney. It was strange with so many missing: Rebecca, Brandon, Ava, Phillip, Avery, and my grandparents. But, we wanted to do it for the kids more than anything. In the morning, the kids and I are heading down to Cincinnati. Since Bryson is out of school on break, we'll probably stay there for a couple of weeks.

This year, I'm not doing Christmas cards. I'm running short on time and Christmas cheer, but I want all of you to know that I'm thankful for each one of you. If anything, this year Phillip and I have learned what an amazing group of friends we have. We wish you all a Merry Christmas!!

Back in the Hospital

So it was 8 weeks ago Dec. 8th exactly that we walked into the Bone Marrow Unit with so many emotions it would be impossible to describe. 8 weeks later we finally walked out those front doors and loaded all of our belongings and Avery into our van. I don't think I've ever been so glad to leave somewhere, and Avery looked around and smiled as we pulled out. The evening kind of went downhill from there. The home health nurse arrived to help us hook up his night iv meds and TPN. Avery wouldn't eat anything and wasn't acting like he felt great, so we turned in a little early. Around 1:30 a.m., he had some belly issues that required both Phillip and I to change him and strip the bed. I thought he felt a little warm, so I took his temp. I took it 5 times to be sure, and yes, he was running a fever. A phone call to the BMT doctor on call confirmed our fears; he had to go back to the hospital. So we made it outside of the hospital for a whole 12 hours!

He's back in the hospital with a fever going up and down and clearly uncomfortable. He's refusing to eat although he's got to be hungry. His little belly is just growling away. I think he knows if he eats, it's going to make him sick. He's just been curled up in a ball in his bed or sleeping as we rock him for the last two days.

I went home last night and got Bryson, so he and Emerson are staying here at the Ronald McDonald House, and Phillip and I are trading out with Avery. The plan was for us all to be together this weekend, and Bryson was so looking forward to that. It was the first thing out of his mouth the last few days, "Is today the day Avery gets out of the hospital?"

Right now, I'm just feeling really worried and stressed. I'm obviously worried about Avery. I feel like my happy little boy has been gone for so long, and I worry that he's not going to ever be the same. We worked so hard for a year and a half in feeding therapy, and I think we've just thrown all of that hard work out the window. He's just weak and lethargic, and I need him to start getting better. That sounds strange, I know. He probably wants to feel better more than anything, but I feel like I need it almost as badly. But I'm also worried about Bryson. Although I've had great support from my family and friends, and my sister has been keeping him a lot, I just feel like he has gotten neglected through all of this. That's one of the reasons I went home last night to get him. I just want him to know that we're all still a family. So after a lot of worrying, I think I"m going to meet my mom and send him to Indiana for a few days. He's going to have to miss school, but I know while he's there, he's the center of attention, he's not being exposed to germs like he is at school, and he has to behave.

My mind is just running in a lot of paths right now that I don't want it to. This post is probably full of grammatical errors and awkward sentences that I wouldn't otherwise use, but I am definitely a little stressed right now and pressed for time. Please keep my Avery in your prayers. This road has turned into a longer and more difficult one that I think either Phillip or I ever imagined. I knew it would be tough, but until you're here, there's just no way to comprehend it.

Thanks so much for your prayers. We're hanging on to every one of them!

Bethany

And the Journey Continues...

The past couple of weeks have continued to be quite an adventure, although calling it an adventure sounds too glamorous. I'm not sure what to call it exactly. Most days, I don't know whether I'm coming or going, whether I should be happy or sad, and what day of the week it even is.

We're now at day 38 post transplant and entering week 8 in the hospital. So far, Avery's blood counts are pretty stable...low, but stable. He has needed two red cell transfusions since his transplant but no platelet transfusions, which is pretty amazing! All of his labs are showing that the new cells have engrafted and that the cells being produced are still 100% donor cells. He had about a two week period with a high viral count (adeno virus), but at one point last week, that count was zero. It is back but much lower than it was. His biggest issue right now is eating and digesting food properly. The transplant process itself is hard on the digestive tract since the chemo destroys the lining of the intestine, and it takes some time for it to heal and get back to normal. Transplant patients also complain of changes in their tastes and their appetite. So when you take a kid like Avery who has been a reluctant eater all of his life, struggles with oral aversions, and has an esophageal stricture inhibiting swallowing, the normal eating issues become much worse. There are days when we even show him a bottle that he starts gagging or vomits. We have to be a little pushy with food but not so pushy that he gets sick. Of course, some days, his tummy issues result in a ridiculous amount of diaper changing as well. One day in particular I felt like I had been participating in an athletic event after I lifted him out of bed, wrestled him to change and clean him, put the proper barrier cream on his skin, rediapered him, changed his bed, and lifted him back in bed only to have to repeat the process 15-20 minutes later. One day he ruined all of my clothes, and I actually had to wear scrubs for awhile until I was able to get my clothes washed. The doctors have said that kids with DKC1 tend to take a little longer to heal. The tube feeds have been stopped completely since they were literally going straight through him. He's now getting TPN (total parenteral nutrition) through his central line. It's not the preferred method, but it works best for him. About a week ago, I got him to eat applesauce for the first time in weeks. I was so thrilled, and with each bite, I found myself saying, "Thank you, Jesus." His eating has been hit and miss depending on how he's feeling, and definitely below normal, but I'm glad that he's at least beginning to eat some.

He's off the pain pump and doing pain meds PRN now. He has been pretty grumpy and uncomfortable for the last few days, and then last night started with a low grade fever. He also has a rash that comes and goes, but the skin biopsy came back negative for Graft vs. Host disease, which is a common cause of rash in BMT patients. Despite his bad days, I am so thankful for his progress so far. A few days ago, a little 2 1/2 year old girl passed away following complications from her BMT. She had Diamond Blackfan Anemia, which is the same diagnosis Avery was given at 1 (which has since changed to Dyskeratosis Congenita). She developed Graft vs. Host in her liver and also had a severe adeno virus. This all has struck just too close to home, and my heart just aches for the grieving family.

Last week the team of doctors started talking about a discharge plan for the first time. They said possibly this Tuesday we could be moved across the street to the Ronald McDonald House, so we started the home health education on running his TPN and giving him his meds. I'm really not good with all of that; I prefer to let Phillip do it, but I have to know how to do it for when he's not around. I'm looking forward to getting out of the hospital, but I'm also really nervous about it. You might think that's weird, but I've always had the security of knowing I could push the nurse call button and have someone come check him out or bring additional medication when he's uncomfortable, or the security of knowing his vitals are being taken regularly and recorded. Not to mention the fact that on his high maintenance days when the laundry from multiple bedding changes piles up, the house keeping crew will come in and take care of that. With Avery's last few days being pretty rough, I'm not sure the doctors will feel comfortable discharging him to RMH or not.

Phillip started FMLA on the first of December, and he's off the entire month. I am so glad! It makes things so much easier with him available more. His sister spent the night with Avery last night, which made it possible to spend our 3rd night in nearly 8 weeks under the same roof. It was so cute how Emerson spent so much time just staring and smiling at Phillip like, "Who is this funny man who keeps talking to me?" She has changed a lot in the last two months, and I'm not sure she quite knows who all her family consists of right now! Speaking of Emerson, here are a few snapshots of her now at 4 months old.



Emerson and Ava

Now, to switch gears just a little, last night was the "Christmas for Avery" benefit dinner that some friends and church family planned on Avery's behalf. Phillip and I were really in the dark on most of the plans, and since we haven't been able to attend church regularly, we were even more out of touch. But we were so overwhelmed last night by the event. It was beautifully decorated for Christmas, and there was great food, some donated by local restaurants, and the beef and noodles were homemade by Lydia Duane. The In One Accord girls sang Christmas songs, the little kids sang some classics, and Rodney, Jeff Ward, Andrew Blevins, and Jeff Liette did a lip sync to the Chipmunks songs. There was an auction with donated items, and Richie Sutherland did a photo booth with a holiday background complete with a sleigh and lots of snow. It was truly spectacular! Clearly, much work went into the planning for the night. Phillip and I spent a lot of time talking about how undeserving we felt, and how we didn't even have a clue how to properly say "thank you" to everyone for what was done. To be honest, the last year has been extremely challenging for us in many ways, and it means so much to know that there are so many people who love us and just want to lighten the load a little. We are so touched by every single thing that has been done for our family, and as insignificant as it sounds, we still want to say thank you!!

In case you haven't seen it already, here is a video that my sister made for Avery's benefit. I think it does a good job of capturing his resilience and strength despite his difficult times.

God bless,
Bethany