Tuesday, December 22, 2015

Winter Solstice


We just endured the longest night of the year. Winter solstice. How appropriate for it to come at this time. 

Christmas isn't always all peace and joy. For many it is a dark and lonely time. Very like that first Christmas. God had been silent for hundreds of years (how's that for a long night??). 

The world was a dark place (do you feel the same of our world today?). Jesus came in a messy and painful way (giving birth isn't all magical-it is messy and painful and hard). It wasn't a perfect, "silent" night. All was not calm and bright. It was dark and lonely and hard. 

Can you relate? Yet, in the midst of such a long and dismal darkness, one tiny glimmer of light can be so bright. Did they see it? Do you see it?

I know so many are enduring hard things. You are lonely, anxious, sick, scared, broken-hearted. It has been a long night. But I'm praying that as you wake this morning, you see the glimmer of light. 

When Jesus came, He didn't make everything perfect and right just yet. He made a way. He brought redemption. And although that redemption is not fully known in our world yet, it is promised to us, just like He was promised to us before His birth. He is coming again! (Oh please come quickly!) This night will not last forever. The Day will come. Take heart. And be ready. Hope and Rescue. 

Thursday, December 10, 2015

Back in PICU




Well, after waking up this morning at 4:30 and vomiting blood and running a high fever, we took her to the ER and she's been admitted to the PICU with possible pneumonia. She had a bunch of seizures this morning but then sort of stabilized once her fever came down and perked up a bit. She's starting to feel bad again, and wouldn't settle down this afternoon until I picked her up to hold her (last picture). Please pray for her recovery and for our strength. 


Wednesday, December 9, 2015

Sick

 

This sweet girl is sick with a respiratory bug today. She started having lots of secretions last night and ended up aspirating. She's been on bipap all day today and running s low grade fever. Please pray that we are able to clear her lungs and prevent a hospitalization. She's also been dealing with recurrent UTIs that we can't seem to get rid of. Pray for healing and strength. 

Wednesday, December 2, 2015

Bitten


When your child is grinding her teeth like she does incessantly every single night, don't get cocky and think you can put your fingers in her mouth and not pay attention and escape unharmed... 

Thursday, November 12, 2015

The Race

I know I have neglected this blog for a while. Honestly, it gets hard to update when it's just more of the same. More UTIs. More seizures. Lots of good days for her, some not-so-good. We have just been kind of doing "normal" life over here, which looks like a lot of crazy and chaos, but it's normal for us. It involves lots of medications, calls every month to at least 4 companies to reorder supplies, calls to the pharmacy to reorder medicines, follow up appointments with doctors here and there, school once a week, therapies, etc. We are in the process of ordering a new wheelchair, the beginnings of a little project in her room to install a sink and cabinets, continuing to work on the house since we still have plenty of work to do here, keeping up with the older kids who both played soccer this fall, and other normal family stuff like school activities, church, etc.

And me? I've been processing. A lot. And for a while, I would do that here, "out loud". It helped. But I tend to be a private person, so all processing on here was somewhat out of character for me. But the past couple of years, I've gone "back in" to myself. I was busy with working full time for a while, then starting my own business and working hard at that, and honestly (and admittedly), staying busy so I didn't have to think as much. The days of the initial diagnosis, of the shock and grief, of the learning and diving in, the days of fighting just to keep her breathing and alive, left my brain reeling and in need of getting it all out. But as time has gone on, and the days have spilled into weeks that have spilled into months that have spilled into four-and-a-half years now, I think I just grew weary of all the feelings and hard things that we had to think about on a daily basis. So I turned it off. I had to go into survival mode.

Four-and-a-half years ago I found myself thrust into a race I did not know about but had been trying to be prepared for (trials). I didn't know the course or the distance or the method. I was literally dumped at the starting line, the gun sounded, and I was running full force ahead. The pain of the sprint came immediately, and lasted until finally, I was numb. I was still running, but just going through the motions of the race. I would fall sometimes, scrape up my knees, hurt my ankle, stop to wrap it up and then jump back on the course and keep going, as fast as I could. I would take nourishment out of necessity, just before I would pass out, and often because it was rather forced on me by others on the sidelines or at the rest stations. But I would keep on running. The numbness lasted for a while and got me through some of the race.

And then it started to wear off. I started to feel the pain again. But this time, the pain was different. It's more of an ache, with some sharp pains mingled in. And it's more of a mental race now. My struggle now is the breakdown of the muscles and tissues in my body, and the breakdown of my mind as I start to doubt the race and my ability to finish well. Part of the struggle comes in still not knowing the course or the distance. But I have realized that I have needed to slow down for a while now. I was still trying to sprint, and I simply cannot sustain that pace for an indefinite period.

I have no idea what that looks like for me. It's something I've been pondering and praying about for a while now.

Will you pray with me? I don't know if it's more of a mentality than anything, or if there are actual steps to take as well, or just the pace of things. Because I still have no idea the course of this race (it seems to change almost daily at times!), or the distance. I know that at certain times, the pace has to change out of necessity. But there are still many unknowns. That is the part that I both hate, and for which I am thankful. The child in me wants to know all the answers right now. But the parent in me knows that that is rarely the best thing for anyone.

So I will trust my Father. I will trust that He will sustain and provide, for whatever course this race follows, for whatever distance this race is. And I will continue to run.

Sunday, November 8, 2015

Four-and-a-half



Four years ago, we had a huge birthday party for this little girl. It was her half birthday, and we celebrated big. Because we didn't know if we'd even get to celebrate her real one year birthday. Today she is officially four-and-a-half. And this is the best pic I could get of her. Because apparently, four-and-a-half-year-olds can't be bothered to sit still and smile for pictures. I don't have the right words to say what each milestone means for our sweet girl. But I do know that we are blessed beyond measure to have her sweetness every day. We learn so much from her, and she points us to Jesus every day. For not ever saying a word, she sure speaks volumes to us. We love you Waverly! 

(Yesterday, she did not want to take a nap. Five minutes after I picked her up and rocked her, this is what she looked like.) 

Thursday, November 5, 2015

UVA appointment

We traveled to UVA this week for a routine neurology appointment and an EEG. No news really to report. We enjoyed the day together and her doctor is pleased with how she's handling the new medication. We stopped in the bookstore afterwards to plug her in for a breathing treatment. Totally normal, right??





Tuesday, September 22, 2015

Physical therapy

Waverly was not too impressed with physical therapy last week! 



Wednesday, September 16, 2015

Confession

We've been on this journey now for over 4 years. So you'd think that we are pretty used to dealing with the daily life that is ours. And for the most part, we are. However, today I experienced something that I haven't for a while. 

Usually, I am amazed at my ability to speak of our lives and all we go through with a stoicism of sorts. I can explain how we have to deal with our daughter's mortality with a straight face, and wonder if people think I'm weird for not bursting into tears. I guess it's just something we are used to at this point. 

But every so often it sneaks up on me. Today, it was in talking to my daughter's teacher. I felt the tears start to form and my throat got a lump. Where did that come from? 

It reminds me that even though this is "every day" common for us at this point, it's still hard and a struggle to have to reiterate yet again the seriousness of her condition to someone new and what that means for her and the family. 

So, that is my confession for today. 

Wednesday, August 26, 2015

We are home!


Sorry for the blurry pics, but just wanted to update that we came home from the hospital yesterday late afternoon! She had been having a fairly good day, so they gave us the option to leave, knowing that we'd still have our work cut out for us at home. Because we missed our family, and aren't afraid of hard work, we of course said yes. Unfortunately, later that evening she had a really hard time for a while that left us second-guessing that decision. But after some more breathing treatments, we got her relatively stable, and she stabilized even more after falling asleep.



So far today we have been continuing with aggressive breathing treatments, antibiotics here at home, and she's been on her bipap most of the day to help give her breathing support. We appreciate all the prayers, calls, and texts. We couldn't walk this journey without your love and support, and without the grace of our Heavenly Father sustaining us!

Monday, August 24, 2015

August is NOT Awesome


So, August just seems to be a crummy month for our girl.  One year ago at this very same time of the month, we were in the ER with Waverly with pnemonia. (We were able to avoid a hospital stay that time.) Two years ago she was also in the hospital, a very sick girl. Three years ago we were dealing with ear infections. After battling a UTI for two weeks (due to the wrong treatment the first go-round), she woke up on Friday morning struggling to breathe and very junky. So, after a visit to the ER Friday afternoon, she was admitted to the PICU for pneumonia. She's had a fever, low sats, trouble breathing, and not tolerating her food. In Waverly fashion, she's making some improvements, with some setbacks along the way. She seems to be doing a little better today, tolerating a few hours on her nasal cannula with 3 liters of oxygen, but needing her bipap most of the time so she's not working so hard to breathe. We just started her feeds back today, at a very slow rate, and are working on weaning her off the bipap use to being on her cannula more. Please pray for her, that she would continue to improve, and that she'd be able to come back home soon! 







Great Wolf Surprise!



The last weekend of summer, we surprised the kids with a weekend trip to Great Wolf Lodge! The older two had been wanting to go for quite some time, so it was so fun to wake up on Saturday, pack the car up, and watch their faces be surprised as we pulled into the parking lot! (They had no idea!)

As you can see, it takes a LOT of packing to bring Waverly along! We certainly don't travel lightly with her! 



This was our setup with her. She slept on the pull-out couch bed and had machines and tubing hanging all over the place. Sometimes, being a special needs mom is all about innovation and engineering!


Waverly enjoyed swimming in the pool, and even got to do a few slides! Big sister was there to help catch her!




We were all tired after a long weekend of tons of fun!



Tuesday, August 18, 2015

Another UTI


So, we are battling yet another UTI here. After a few seizures last weekend, her nurse texted me on Sunday while we were at church that she had just had a lot of blood in her urine. I was already planning to take a urine sample to the lab that Monday because of the seizures, but that of course confirmed that. I called first thing last Monday, got a sample to the lab, and started antibiotics. It grew pseudomonas again (Yuck, that's a bad one!). We didn't get word that it was pseudomonas until Thursday night, and she saw her urologist on Friday. He does not agree with that antibiotic to treat that bacteria (which I questioned 3 times last time she had this and was assured it was fine), so we took a sample to the lab on Friday to get retested to see if it was killing the bacteria. After a SUPER frustrating time at the lab, they still did not follow the orders to culture the urine, so we had to take another sample back to them this Monday. I spent hours on the phone trying to figure out the issue (still not sure what happens each time we need a urine culture and why it's so hard to get one actually done). So, we should know tomorrow if it's clearing up, and where to go from here.

In the meantime, we had a BLAST this past weekend taking a family vacation trip ALL TOGETHER to Great Wolf Lodge! Pics from that to come...!

New School Year, Same Message

And, the crummy part of a new school year: informing all the new teachers about the special conditions at home and how stressful it can be on the family and what to look for in the kids. I remember meeting with another special needs mom here locally when Waverly was really young and her saying how hard it was every year to tell the teachers that this could be the year her son's sister died. (Too harsh? It's reality for us, and many others.) That sweet girl is now 26, so there's hope! But it's still crummy! However, I am SO thankful for our amazing school and how they love and shepherd our children through all they face! Such amazing kids we have, and a wonderful school as well!

Wednesday, August 12, 2015

Been a while...

I know, I know. I've been even more terrible than lately with updating here. I've missed updating about her seizures (or mostly lack thereof!), her birthday, the summer. I'm sorry. And then I got overwhelmed with catching up. So, instead of continuing to wait and not update, I'll just jump in now and maybe catch up later!

Anyway, here we are! After the terrible bout with new meds and seizures back in April, she's done great! We had weeks and weeks of her being seizure free and happy, which was SO nice! In fact, she hasn't been this stable, in, well, a LONG time!

We've seen a few seizures here and there the past few weeks, the latest ones being due to a UTI that she just started antibiotics for this week. We've been relishing this time with her being so happy and healthy! Thank you for your continued prayers, and for checking in even when I've been so terrible to not update! I promise to try to do better! :)

And now, here's a picture of her on her birthday (May 8th)!

Tuesday, April 28, 2015

Update for this week


After last week's update, things have improved. She finally slept some on Friday morning, and has been sleeping at night and napping some during the day since. We stopped the Onfi completely, and it's working its way out of her system. So far her seizures haven't returned either, although the past few days she's been more twitchy, so I wonder if they are finding their way back possibly.

I also got a call last Thursday that she has a UTI as well, so we started antibiotics for that. Her urine grew pseudomonas, which is a very bad bacteria, and it's always a bit scary when it's a bad one like that. She's been junkier with lots of secretions and needing extra oxygen too, and working a little more to breathe (but not struggling), so we are keeping an eye on that as well.

My body shut down this weekend. I got a terrible migraine on Saturday that hasn't seemed to want to go away completely, and I've just been so tired from the past few weeks. Johnny is also tired, and our house is just weary. Please pray for rest and refreshment for all of us, as this can take its toll on our family.


Wednesday, April 22, 2015

Medication Changes Not Going Well


We are needing some prayer here. After fulling getting Waverly off of her old medicine (Banzel) that landed her in the hospital, we got her back to where she was before starting that medicine, which was still having too many seizures. So we went with Plan B, Onfi. It's similar to another medicine she's been on for a while, but was growing tolerant to. We started the Onfi on Friday. She went with no seizures on both Saturday AND Sunday! We can't even remember the last time she did that! It seemed to be working, and she was smiling a TON. But, the smiles were a little too much. Like she couldn't STOP smiling. And then it just got worse and worse. 

She now has not slept in 2 days. She's bursting into crying fits at the slightest noise, touch, or stimulation. She's literally laid in her bed all day, and can't stop moving. When we try to pick her up or talk to her, she cries. She's still super smiley too, but it goes back and forth from extreme smiling to extreme crying. And she can't.stop.moving.

Her brain is just waaaaaay in overdrive. It's like there's a terrible neurological storm happening. Her bottom lip is swollen because she keeps biting it. Ya'll, it's bad.  


I have been in touch with the doctor, but we just are unsure what to do. Obviously, the Onfi has helped her seizures, but she can NOT be like this all the time either. She's exhausted. We're exhausted. It's breaking our hearts. This is a medicine we can't abruptly stop, so we are working to see what we can do. We wanted to give it time to work but she is miserable and I just can't let her suffer like this much longer.

I snapped this picture last night of her meds while I wondered, "Am I poisoning my daughter?" The way she is reacting to these latest meds, it seems like it. We are at a loss of what to do. Without medication, she is seizing so much. With it, she's still seizing too much. And with the new ones we've tried, she's having terrible reactions.
Please, pray for her. Pray for her brain to calm down and let her rest. Pray for the doctors and for us to have wisdom. Pray for mercy. 

Friday, April 10, 2015

Home!



We are so thankful that we were able to come home this afternoon. Waverly continues to have lots of seizures, but they aren't constant, so we felt it best to bring her home as we wait to try a new medicine. We ended up discontinuing her newest one that we started last month, as we suspect it may have actually made her seizures worse. But we still need to do something about the ones she's having, since they are still more frequent than we'd like. So, back to the drawing board. 

Please pray that her seizures would be manageable here at home until we can start a new med. Just tonight, she had over 30 minutes of hard seizures. (And had 10 minutes of seizures earlier today, just minutes after we were given or discharge papers, before we even got out of the door!) 

We are pretty tired from the "seizure watch"-feeling like we need to have eyes and ears on her constantly for every little sound and move. So prayers for our strength are appreciated too. 

Wednesday, April 8, 2015

Too many seizures = hospital stay


Waverly's seizures have had a sharp increase since Friday, which also happens to correspond with the latest increase of her new medicine, Banzel. On Monday evening she had a cluster of 7 tonic-clonic seizures in 20 minutes, and then woke up Tuesday and had about 10 in the first 1.5 hours of being awake. We knew she had to been seen, so we loaded her up and took her to our local ER. They checked her over to make sure she didn't have some sort of infection causing the increase. All that checked out fine, so they admitted her to the PICU to help break the cycle of seizures and work on adjusting meds and a plan. They have been consulting with her neurologist at UVA on the plan. She's had some pretty hardcore meds in the ER and late yesterday afternoon to try to stop the seizing, which knocked her out. As soon as she woke up, though, she started seizing again. Today, she's seized pretty much every time she's been awake, but has slept most of the day (from the seizures). She woke up for about an hour around 5:00pm today, but had a big 8 minute seizure at 6:00. She almost needed more rescue meds but stopped, and is back to sleeping again.

Please pray for wisdom on which medications to start/stop, for her brain to respond, and for the seizure cycle to break. Pray for rest for me here in the hospital with her, and for the rest of the family with the added stress. Pray for her doctors and nurses and other caretakers. Pray for the others here in the PICU. I don't often get the chance to talk to other parents or people up here much since everyone is in their own rooms with their kids, but pray that I would be able to reach out to those who need it, and just in general for those here.

Sunday, April 5, 2015

Happy Easter!

On a day like today, where Waverly struggles so much with hard, hard seizures, I am especially thankful for Christ's resurrection. He defeated sin and death and all the pain and sadness that comes with that and promises new life. Without that promise, this life would be hopeless and void of meaning. But thanks be to Him and His indescribable gift. We long for His return when He will truly make all things new. Our prayer this Easter is that you would know the one true God, His love for you, His grace and His salvation. 
Still beautiful, even after just having several hard seizures. 

With her little chick from Great-Grandmom. 

Tuesday, March 31, 2015

Twice Born


Wow, there is so much on my heart right now, but I'm unsure I'm able to process it all. See, today is the day before "it" all started. Four years ago, my appointment for a regular OB check up was on April 1. That was the first time a doctor voiced concern over our child. So this time of year brings all of those memories back very vividly. Four years ago today, I thought I was carrying a healthy little baby. All that changed the next day and we started a journey into this new world for us. A world of brokenness, sadness, and heartbreak, but of incredible love, joy, and blessing as well.

As we began to learn more and more about our little one, we prayed and begged God to shine His light in all of this. We prayed for Him to use us, in whatever way He wanted, to bring glory to Him and for others to know Him better because of this.

We decided to be very open about our child, and our story. I started this blog to not only give medical updates on Waverly, but to include my Heart Thoughts as I process through this life as well.

One day, our friend from college Bobby called my husband and shared how he and his wife had been praying for us. He shared with Johnny what our story had meant to them, and how God had used in in their lives to call them into ministry, to reach out to others who were broken and hurting. We were amazed at how God was multiplying our prayers in that way! But that was just the beginning of their story....

A couple years later, Bobby and Shelly would find out that they were now being called to walk in this path as well, as their unborn daughter was diagnosed with Spina Bifida in utero. They opted to undergo fetal surgery to help their baby, and are now being featured in a PBS Documentary called Twice Born.

The show airs tonight, and we will be watching, likely with many tears. It comes on at 8:00pm (eastern). You can see more on the show here, as well as previews.

God is working. We do not always know what He is doing, or what His purposes are. As I mentioned, this is an emotional time of year for me, as each year I reflect on life. But I know that He is good. Still. Four years later the pain remains, but our Hope is greater.

Monday, March 30, 2015

Stinkin' Seizures


Please continue to pray for our sweet girl as she battles daily seizures. Some days she has as many as 6, and there could be more that we aren't even seeing! I know compared to others, that may not sound like much. But with these seizures she is shaking/convulsing and it really takes it out of her. She often sleeps for several hours after having them so she can literally be in a seize/sleep cycle all day. We started a new medication two weeks ago and are working on increasing her dose slowly to the full amount. We aren't sure how much it's helping yet so please just pray for a solution and for wisdom, as well as strength for her little body. I'm thankful for the days that we still get to see her sweet smile though!  


Wednesday, March 11, 2015

Heart Thoughts: Ongoing


I just read the story of Tiny Tate a few days ago, a little guy with Miller-Dieker Syndrome from Australia who just lost his battle at only 8 weeks old. And I was struck by the article at the outpouring of support and rally cries for his family. And it hit me-this is our every day. Not to take away from his story and his family. The reality is, that for many people, this is their every day.

And then again this evening, I read the blog of another acquaintance who is pregnant with her first sweet baby, and there are many concerns with the baby. And I cried. Because I can so identify with her thoughts and prayers.

I realize I have been more quiet on here for a while now. It hit me tonight that one reason is because: nothing is really changing for us.

We live this life every day. It's become our normal, but it is so far from normal. There are days that the thoughts and concerns of my heart are almost too heavy for me to bear. There are days I mourn all the things we can't do with her, the things we can't see her enjoy. (Did you know I've never heard her laugh? I've heard laughing-type noises, but I've never heard an actual, true, full-on laugh. That breaks my heart.) There are days I am just so exhausted from all it takes to be a good mom to her, and my others, and wife, and friend, that I can hardly stand it. But then I can't sleep, because my thoughts are too numerous and my heart is too heavy.

Yes, I am SO grateful for the things that she CAN do. For the almost-4 years that we have been blessed with her! For the tiniest of victories that seem SO big to us!

But certain times, I am reminded that everyday life for us is a struggle, an on-going day-by-day struggle. We have much to bear, and are faced with it daily. And when the day comes that we do NOT face this on-going daily struggle will not be better. For our struggle will remain, only it will be in the form of grief and loss.

So for now, we praise Him. Because no matter the circumstances, He is good. His grace is sufficient and His mercies are new every morning. (Oh how we cling to that!) He is strong to bear with us, and His grace is all the greater for us.

Monday, March 2, 2015

Siblings


I love these pictures of the kids being siblings and loving each other. Can you spot Waverly in the first pic? 

Thursday, February 12, 2015

Doing Better


After a rough night Sunday night, with sats only in the upper 80s/lower 90s with 8 liters of oxygen in her bipap, I took Waverly to the doctor on Monday and in for a chest x-ray. She was wheezing so badly that you could hear it just walking into the room. I was nervous they would send her to the hospital, but her x-ray actually looked ok (for her). We increased pulmicort (steroid) nebulizer to twice a day to try to help her lungs open up some, and increased the Robinul to help dry up her secretions more, and that seemed to help. She's still quite junky, but doing much better, and was even able to be off oxygen a little bit yesterday. Thanks for praying for her, and please continue to pray that she recovers more and gets back to baseline for her!

Monday, February 9, 2015

UVA update and sick





Sorry I didn't update after our UVA visit. There wasn't a lot to update with that, other than the doctor and I discussed a few medications, and he basically said to research which one we wanted to try and let him know. So, I've been working on that this week. After we got home from the trip, she got sick the next day with respiratory stuff. She's struggled all week, but hasn't been too too sick. Over the weekend, however, she's needed even more oxygen and last night her sats were only in the low 90s with 8 liters of oxygen on her bipap. So, this afternoon we are heading in for a chest x-ray and doctor visit. Please pray for wisdom, if she is ok to come back home or if she needs to head over to the hospital for more treatment. Thank you!

Saturday, January 31, 2015

UVA on Monday

Just a quick update to let you know that we contacted the neurologist this past week about Waverly's continued struggle with seizures, and he worked in an appointment for her early Monday morning. Please pray for safety on the road, and for wisdom for the doctors and us as we try to determine the best way to help her. She's been having hard seizures several times each day, and many more "smaller" ones as well.

We Moved!!

Sorry for the silence lately. We have been SO busy working on our new home, and last week, WE MOVED! That first night, we were able to wheel Waverly from her bedroom to the family room, and it was awesome! I have to admit that I did cry when I took her from our old home to the van to drive to the new home though. It was very emotional. While it is exciting to be in a new home, the reason behind it, that we HAD to move because of her condition, made it very emotional. Not to mention that our old home was our first home together, the place where we brought all 3 of our babies home, etc. We are praying for the perfect family for our new home, when the time is right. If you know anybody in the area looking to rent or buy, please send them our way!

Friday, January 9, 2015

Mundane Faithfulness

As I read this, I was holding my daughter, who should be running around like crazy playing with (or fighting with!) her siblings. Instead, she had just had a hard seizure, and was continuing to twitch. But even in that moment, there was such beauty. Snuggling all 3 of my children on the couch. A warm home. Time together. Holding that very child who has already outlived her diagnosis. Such beauty in the midst of such pain.

"How is your brokenness meeting you? Are you avoiding it? Can you see how it can be made beautiful? Can you see how the pain in your story could be redeemed to something beautiful? It’s a fight to see the grace through the fog of the pain- but it’s there. It’s there. Are you looking for it?"

http://www.mundanefaithfulness.com/home/2015/1/7/how-are-the-kids

Saturday, January 3, 2015

New Year


Here we are, in a new year. For many people, New Years is a time of renewal, resolutions, fresh starts. For the parents of a child with special needs and a terminal condition, it is such a bittersweet thing. It is the promise of yet another year that their child has survived.

But there is also the fear of "What if this is THE year...?"

Oh, the nagging reminder that lives with us each day. Sometimes we can go days without thinking about "it". But other times, it threatens to choke me with the weight of it.

Will this be the year we have to say goodbye to her?

Even when things are going "well" and she's been healthy (for her) and been out of the hospital and relatively stable, there is always that nagging fear in the back of our minds. The holidays are also a hard time for that, and a constant reminder.

What if this is her last Christmas with us?

The pressure to make it all as perfect as it can be, just in case there isn't another one...

So, will you please pray for our hearts? It is a lot to handle. And yes, I know we shouldn't worry about such things, but it can't be helped. It's there. It hit me the very first Christmas, especially as I took down the Christmas decorations. I began to cry and wondered if she'd be around to see them again the next year.

Of course, we have been blessed now with FOUR Christmases with her, and pray for many more. But the next one is never a guarantee, for any of us really. We thought last year that she wouldn't be with us at that Christmas, but she pulled through and we had her then AND this past one. And we are thankful.

On another note, please pray for her health. There is SO much sickness going around right now, and we've had several close exposures to the flu in particular, and our oldest is currently sick with a low grade temperature and sniffles. It is once again a reminder that even when she is doing well, she is just one sickness away from serious complications. Thank you!