I remember...

I started writing this on Friday, August 24th and never went back to finish or publish it to the blog.  I was "remembering" too many things and couldn't finish.  I read this now over a week later, and I'm not crying, but am wanting to.  Emotions have been very high recently.  Not in the way that I'm walking around weeping or anything, more like I'm just more sensitive to everything around me.  Ok, so maybe a few tears.  Not just Cayla stuff.  Anyways, I might just add another paragraph at the end and publish it, but this is just a drop in the bucket of memories that constantly flood my brain...


From Friday, August 24th

Well, today, Cayla Joy would have been 4 months old.  Also, today marks 9 weeks since she died.  That sounds like an eternity, yet it seems like it was this week.  Funny how our minds work. 

I started last Saturday night, August 18th, rereading the blog from day one.  Tuesday, I got to June 22nd's entry and had to stop.  I was feeling the excitement, uncertainties, joy, nervousness, peace, anticipation, unknowns, and all the emotions all over again as I read.  It was very overwhelming to relive those months again.  I so remember the feeling as I wrote about being able to hold her the first time.  I remember the smell of her when I wrote that I just loved to breathe in the smell of her.  I remember kissing her as I read about it.  I remember feeling like I needed handcuffs when they told me I couldn't touch her or stimulate her with my touch or voice after surgery.  I remember gently rubbing that sweet little head whenever she needed comfort. I felt and remembered every emotion from the beginning.  I remember sitting with my friend Wendy Hollon when I found out I was pregnant on October 21, 2011 and crying tears of disbelief, joy, and amazement that God had opened my womb after 16 years.  I remember earlier that same morning, Lowell asking Samuel what he thought about the possibility of mom being pregnant and what Samuel's answer was.  Without any hesitation with this whole possibility posed to him for the 1st time, he said, "Two things.  It's a little late, and if something happens to you guys, I'm stuck with the kid."  :o)  Oh my!  What a laugh we had at that.  He quickly added that he was kidding, and that it would be very cool, and then looked at us with his head to one side saying, "Really? You could be pregnant?!"  Love him.

I've remembered all the people I've met along the way as I reread.  So many nurses.  So many doctors. So many friends.  So many babies.  So many moms.  It's been nice going back through and remembering so many people.

I remembered the feeling as Samuel and I met Dr. Rajabi the first time and heard him tell us that Cayla had a major heart defect called hypoplastic left heart syndrome.  I remember looking at him, at Samuel, the nurse and then back to Dr. Rajabi again as they were waiting to see how I responded to this information.  God had prepared my heart to hear this news and I remember thinking, "I'm ok. God's going to help us through this and made Cayla's heart exactly how He intended it to be."  I remember trying to focus on what Dr. Rajabi was saying about her heart and how hard it was.  My mind kept wandering.  He was so good, and I believe repeated everything he said at least 3 times to help me process it all.  I remember getting through the rest of that doctor's visit and setting up a time to go see him in his office at Hillcrest Hospital that following Wednesday.  I remember the feeling as Samuel and I stepped outside of the hospital and let out a huge breath and just a few tears fell then.  I remember pulling up to our house as Samuel was driving and not having really cried.  He stopped the car and we both just sat there.  I remember the precious moments as we held each other and prayed asking God to help us accept His will in our little baby's life.  It was as we prayed that the dam broke and we were both weeping before the prayer ended.  Such memories.


I'm back to today, Sunday, September 2nd.

I remember carrying Cayla up the stairs and losing my balance one time.  From then on, anytime I carried her up the squeaky stairs, she would cry as if she remembered the feeling of almost falling.  There are times I cry going up those stairs wishing I could hear her cry and comfort her.  I remember going upstairs to get her when she'd woken up from her nap, and open our bedroom door to the sights and sounds of Cayla Joy.  Almost every time I walk into our room now, I find myself automatically looking at the spot where her crib was.  I remember those eyes looking up at me wanting to be picked up when I got there.  I remember taking her to our bed and falling asleep across it every morning after her 7am feeding.  We would take our time falling asleep and talk sometimes.  Many times she was crying, and I couldn't figure out why.  I completely remember feeding her her bottle and how she would just stare at me the entire time.  She was precious.  I can write all this without crying.  I just want to talk about her.  I just want to remember her.  I just want everyone else to hear and know just how precious she was.  I don't want to ever forget her.  Ok, now I'm crying... :o} 

I feel like this was just a dream.  She came and she went pretty fast.  It's like it really was too good to be true.  It was too amazing to be pregnant and having a baby again and I told myself I knew it wouldn't last.  I had such a hard time allowing myself to believe she'd live, we all did, that when she died, it was as if I was expecting it.  But, there was also a point in time that I let myself dream of her actually growing up.  She was doing so well.  I guess I lost sight of how fragile her life was and wasn't jumping every time she did normal baby things like cry, have a diaper rash, spit up some, or fuss.  I needed to stay alert to all that, but I got comfortable and thought she was doing well.  So when it all happened that Friday, I think I was just slow catching on to what was really happening.  It wasn't until shortly before she died that I realized what was happening.  So, I am still waking up at night remembering this and dealing with guilt again.  It's been weeks since  this had happened and now these last few days, it's all coming back again. That awful guilt.  Those "Why didn't I?" thoughts are plaguing my nights.

I guess I'm remembering the good the bad and the ugly... I'm finding I'm not praying like I was either.  I'm now reading His Word so much more, but haven't been praying much.  I haven't been talking to God like I have been.  I can't seem to get things right.  It's all related to my sleepless nights, the feelings of guilt and all.  On top of it all, I just plain out miss my baby girl.  I just miss her.  I just want to hold her one more time and rub that little head and kiss that little mouth.  Oh man, I'm crying again.  I came home from church tonight after having a good day today and laid down on the couch and cried.  I don't even know what provoked it.  I made myself get up, and I did the dishes in record time, made the jello and scrubbed the potatoes for tomorrow and did one load of laundry.  It's now after 11pm and I need to go to bed.  So for now, this is it for this crazy post.  It's sopping with drama and emotion.  Sorry about that.  I can't help myself.  I'm feeling the need to analyze myself, figure out what I need to be doing, and make some changes.  We'll see. 

Thanks for the prayers.  I think at times, I'm doing so well and am starting to be able to move on, then I feel crippled all of the sudden like now.  Well, overall, I am doing well, I'm just still working through this.  We all are and are so grateful you're praying for us all.  Thank you so much!!!

ps... I'm adding a note this Labor Day morning.  I just need to say, pms.  Boy does that make me feel better.  I forgot about this and I know it's tmi (too much info), but explains the extra tears and emotions these last few days.  Feeling better already this morning... in an emotional way, not physically... :o)

Cayla's Homegoing Service (playlist)

Well, it's taken me long enough to do this.  Part of me was not in a great hurry, but I guess I'm done procrastinating.  :o)

This is Cayla Joy's Homegoing Service.  She is at home in heaven already having met Jesus 1st of all and has been places I have never been.  She's walked on streets paved with gold.  Not knowing exactly how heaven works, she might have already been before God in His throne room.  Maybe that's where she started.  She's seen things I have only dreamt of.  She's met people I can't wait to meet.  She's met my mom... woah, that makes me cry.  She's doing great!  It's just us here on earth missing her that are having a hard time. 

I know I will see her again because God's Word, the Bible, says so.  I am going to heaven because I believe that Jesus took my place in dying on the cross.  He shed his blood to take the punishment for my sins.  He did it for all of us.  The verse in I John 1:7 that says, "...the blood of Jesus Christ his Son cleanseth us from all sin."  My sins are covered.  Yours can be too.  In Romans 6:23 it says, "For the wages of sin is death; but the gift of God is eternal life through Jesus Christ our Lord."  Since eternal life = heaven, if I accept God's gift of salvation, I will go to heaven for eternity.  The only other choice is eternal death = hell.  You know, you may think me arrogant or whatever for saying that, but it's true and if you knew the truth, wouldn't you want everyone to know too?  Why would anyone knowingly choose eternal death.  It's real.  Not because I said so, but because the Bible does. So please, take a minute and think about it.  Take longer than a minute.  Our lives are just little blips compared to eternity.  When are you going to start planning for the biggest trip of your life?  We spend a lot of time planning for each day and for a week of vacation, what about eternity?  Eternity lasts a long time, but it's not long in coming.  Please think about this and prepare yourself for it.  Email me.  lindasowry@gmail.com  Thanks for those who've already "talked" to me through email.  I'm praying that you take the gift God's handing you today.  It's one of those things in life you never regret doing.      

David Brown, Elise's dad, let us use his video camera to record the service and has done a lot to edit and set them up online for us.  Thank you so much for doing this for us.  They couldn't be longer than 15 minute segments, so it's broken up into 5 videos.   The last two are after the service, of people coming up to talk to us and see Cayla one last time.   I would guess that I put them on there more for us, but others might like to see who was there as well. Many came for the calling hours before but could not stay for the service.  Pastor Emery spoke to each of our hearts that day.  His message is what we needed to hear.  There are parts where the camera didn't pick up the words clearly, so I am working on typing them out.  Maybe another post.   And the opening piano piece, "Jesus Loves Me and He Hideth My Soul", is being played by Elise's mom, Erin.  Thanks for a beautiful song!



Mother's Day... Love this picture.



6 weeks old.  Love this too. 




Cayla in her cocoon made by Grandma Pat.  Love it.



Answered Prayers

It's midnight this late Monday night... I've been wanting to write since last Friday.  I figured now is the time to write since the rest of this week looks way too busy.  I wrote last Thursday night asking for prayer.  I was having a hard week in every way.  I know a big part of it was that my monthly cycle started last week for the first time in a year...TMI (Too Much Information) I know, but it helps explain some things.   Physically, I do need help.  Not quite sure who to see about that since I haven't been to a doctor here in Ohio outside of the OB/GYN's.  I am drinking more water.  I am not taking my vitamins yet.  I'm not sure where they are, although I haven't really looked for them.  I am still losing a good bit of hair, but I'm reassured that between the baby and stress, that's somewhat normal.  My joints still feel stiff, but I'm forcing myself to move around. Lowell, Samuel and I have been playing disc golf (it's not technically called frisbee golf I've been told), every other night.  I plan to start walking/running in the mornings again.  We'll see, don't hold me to it.  :o)

For all the prayer I asked for, God answered.  I had a great day Friday, and have had great days since. I had woke up Friday morning feeling like I could conquer the world.  I was able to start my dishes and get most of them done outside of pots and pans.  I know I've counselled others to reach out to those around you when you're discouraged, upset, depressed, etc.  It helps get your focus off yourself and really lifts your spirit helping others.  It finally hit me that this would be excellent advice to give myself.  I know my friend Kim Hunsicker helped me so, so much with the yardsale, that I got the opportunity to go to her house Friday and help clean there.  It worked wonders!  I kept telling her to not tell Lowell that I cleaned her house with mine looking as it did.  Samuel pulled some weeds and trimmed a few bushes in the heat too.  But, it felt so good cleaning someone else's house that I was inspired to keep working on mine.  My mother-in-law came over after work to help me with my house around 4pm.  While I worked on the rest of the dishes and pots and pans, she did counters, cleaned out a cupboard that I'd sprayed Raid in because of those yucky teensy-tiny little sugar ants, put stuff away and then she and Samuel attacked the dining room table.  It got completely cleared and washed, although I'm still wondering where it all went... still looking for a couple of things... Samuel.  We trimmed dead leaves off planters from Cayla's funeral and watered them.  Amazing how quickly plants perk up when watered. ;o)  Lowell came home and we all talked a while.  Before she left she swept my kitchen floor too.  She's so good to me.  Lowell took us to Steak and Shake since the kitchen was now clean and he didn't want to mess it up.  :o)  If I knew that's all it took to get him to take me out... Oh well.  :o)

Saturday we had our church picnic up on Lake Erie at Saybrook Township Park.  So pretty with a nice strong breeze off the lake.  Such uplifting fellowship, friends, fun, and food.  Plus a good day at church.  Convicted to spend more time in my Bible to keep my heart trusting Him and not worrying and Sunday night, to pray, pray, and pray and don't underestimate the power of it.  Such a good reminder of what I forget to do.  God is good and I love Pastor Emery and my whole church family. 

My boss at Basic Ingredients, Cathy Lovas, invited me over to her house since she's closed on Monday's.  It was Mary's birthday, the other lady who works there, and we had lunch and played cards.  I learned how to play Minnesota Canasta (don't know what the difference is between it and regular Canasta) which was a lot of fun. Came home and dishes were still getting done!  We went to play disc golf, but it ended up with the boys playing while I sat on a long swing with Tina Siesel enjoying Lake Erie.  So peaceful and relaxing, and great company.

It's now Tuesday night and it's 12 minutes after 1am... I think I need to go to bed.  Today was a great day.  I mixed up my gluten free flour mixture and made some cinnamon raisin bread for our little excursion this weekend to Philadelphia with the teens and young adults at church.  Looking forward to it, but just wish Lowell could come.  I washed the dishes as I dirtied them.  Yay!  I did 4 loads of laundry.  Yay!   I didn't have to work this afternoon since the truck didn't come until closing time. Right now, my kitchen is clean, every dish and everywhere else is picked up.  This feels so good.  God has given me strength I didn't know I had. 

All through my pregnancy and up until now, I've heard stories of miscarriages and heartache and they all hit a chord in my heart.  It made me realize how much I have to be thankful for. This was my facebook post this morning...

I am so grateful that I got my little girl for 2 months.

Many babies with multiple problems like she had, don't make it out of the womb.

God allowed me to not miscarry Cayla,

but to have a chance to see her, love her, hold her and kiss her!!!

Definitely something to be grateful for this morning! :D

  

 I've said this before.  Perspective can change it all.  When I look at this way, it's such a happy thought.  I've enjoyed studying God's Word with Samuel.  I love seeing him grow up and mature in so many ways.  I'm blessed.  There's just no 2 ways about it. God has blessed us!  We miss Cayla, but God is working in our lives because of this.

Still trying to figure out how to get the video of her service to work.  I know I keep saying this, but hopefully soon, it will be posted!  :o)

Goodnight all!  God bless your day tomorrow!     

Prayer

Just sitting here tonight typing out the words spoken at Cayla's homegoing service, trying to get it ready to post.  I've been putting it off and not wanting to do it.  It's actually been helping me though tonight somewhat.  I've been weepy these last couple of days and am concerned with myself in a way.  I don't know what to say.   I guess I'm going through a gradual realization that I'm depressed.  Many have told me so, but I'm just grieving in my own way I thought.  I know there's depression weaved into my life right now.  I don't wash any dishes after dinner and don't care until we run out and then I wash just enough to function a few more days.  Of course that's not a tell-tale sign, I did that before Cayla... ;o)  I've just got to the point now that my counters are never clear. I need to clean my bathroom, but I don't.  I need to get spiderwebs out of the corners and do my floors, but I don't.  I guess the problem is that I don't care.  Apathy.   At least before when I didn't get my house cleaned, it bothered me.  It doesn't right now. 

Physically, I'm gaining back the weight I lost from having Cayla. Not good.  Makes me feel awful, but not awful enough to stop eating. I'm not being super careful with my Celiac Disease. I'm not eating bread or anything obvious like that, but it's the little things like not caring to look into what mayo, soy sauce, etc. was used in something I'm eating.  Before, I wouldn't eat it if I didn't know.  If it's not something major, I don't seem to care.  I'm finally starting to feel some effects from this... not good.  I'm not drinking water.  I was drinking a big mug of 24 ounces of water every hour or so.  I've gone days without a drop.  I'm not drinking soda or anything else either.  I'm just not drinking.  Just milk with my cereal. I have an almost full bottle of prenatal vitamins I was still taking to use them up and help me out, but haven't been taking them or anything else.  My hair is falling out quite a bit.  I am cleaning my brush every morning.  All of this is leading to me being tired with achy joints.  I feel like I've gained 10-20 years in the last 6 weeks.  I was feeling so, so, so good when I was home with Cayla keeping me on my toes.  I had a great reason to stay healthy.

I don't know.  I'm reading the Bible and God is speaking to me and I am so encouraged, but I'm obviously not listening too closely to Him right now.  When I'm out or around people, I can try and be the same old Linda, but deep down I know this isn't the same Linda.  I don't want to be where I'm at because I don't think God gets much glory from it.  Actually, I know God doesn't get glory from me when I'm like this.  When I cry, it's not a despondant cry, just missing my little girl in my arms kind of cry. 

I was telling the ladies at work that I haven't thought myself depressed because I seem to be somewhat fine most of the time.  But when I started listing and thinking about all the physical things I'm doing or not doing, how can I say I'm not.  So, I guess I am depressed in some way.  I could go talk it out with a professional counselor, but why do I need to when I'm talking it out and putting myself out there to the blog and the unknown audience. :o)  I don't know.  I do though know I need prayer.  I'm super tired, going to bed, hoping tomorrow will be a good day.  Today was good overall.  It all depends on what you're looking for. 

Appreciate the prayers.  I think I should be over this, and I'm not.  I shouldn't say that because I know it's not been long and it's ok to not be over this and I know I'll never be over this.  But I said it anyways.  :o)  Gotta go to bed.  Hopefully her service will be ready to be posted soon.  :o) 

Good night all.

Dr. El Gammal

Last Friday I called and got ahold of Dr. El Gammal, Cayla's pediatrician, in the morning and then went to see her at 12:30pm.  I have to say again that just driving down Route 20 and passing Lake Avenue where the hospital is, makes me remember that Friday and want to stay away from anywhere near there.  I would say the feeling is lessening, but still there.  I just knew that I needed to go see her.  She was there and saw Cayla the last 2 days of her life.  She was with her during her final 4 hours.  I wanted to talk to her and talk we did for about 45 minutes.  She gave up her lunch break for me.

I've been hung up on these immunizations and beating myself up over them, Lowell too.  So after a warm greeting, one of the first questions I asked was about the immunizations.  What effect did they have on her death?  Well, being the completely, medically, uneducated person that I am, I was surprised by her answer.  They had nothing to do with her death at all.  So she explained since I guess the look on my face was still pretty doubtful.  The vaccines Cayla had were all non-living pieces of a specific virus.  If they had played a part in her infection, the area where the needle was inserted would be showing signs of redness and a reaction.  She said you don't get the shot in your left arm and break out with an infection in your right arm.  Makes sense.  Then she said that the first signs of infection from the vaccine are redness at the injection site and a fever.  Cayla had perfectly normal skin where her shot was given and had no fever.  She also said that if there was a reaction, it wouldn't just be an infection randomly in her body such as her bottom, it would be the disease that was actually being immunized.  The point being that the infection in her bottom had been there brewing under the surface just waiting to show its ugly self and did so all by itself without any help from the immunizations.  So, ok.  I guess that clears that up...

Now then my mind jumps to her bottom.  Now I'm going back to where I started with all this.  That day as we were waiting in the ER, all I could see in my mind was her bottom from the morning.  Purple, red, swollen, and what used to be her scabs over the rash were now open, white and pussy around the edges.  Sorry for the details...  My first thought then was why didn't we put her on antibiotics to clear this up.  Dr. Magnuson had just seen her the previous Thursday and said there was bacteria building up in her bottom and she was most likely going to have to have a colostomy bag put in until surgery.  Then he said to put this prescription cream on, see how she does and come back in 2 weeks to see about the colostomy bag.  I don't know.  I do know that Lowell asked if the cream he was giving us was an antibiotic cream and when we got it, it wasn't.  I'm not sure what Dr. Magnuson was thinking.  He did say that she can't be on antibiotics for 6 months, thus the bag.  We thought though that he could have given her some kind of antibiotic to clear it up before the bag, but for some reason, we didn't pursue that thought.  Thus the guilt of why we didn't follow through.  He had also given us rods to stretch or dilate her bottom to relieve some of the pressure building up.  We were supposed to do it once every day.  It took 2 people.  We were doing it at night.  Wednesday night when we did it, a lot of pressure was released causing it to spray everywhere and make a big mess.  Well, that next night, Thursday, we'd forgot to do it and remembered later when she was all settled in and thought that we'd get it tomorrow.  It was just for the purpose of stretching, so missing one night wouldn't hurt.  Well, you know where the guilt is now.  What if we'd gone back and dilated her bottom?  Would pressure have been relieved enough to put off the infection building from it?  I would say yes, but even if I could 100% pinpoint the exact reason for her death and how it could easily have been prevented, would it change the course of events?  Not if it was her time to die.  I've not wanted to tell anyone about not dilating her bottom the night before she died.  That would be admitting fault for what could be the cause of her death.  I don't want that on my shoulders.  But, it's there.  So many What if's.  I want the blame to be on someone else, but in our minds, it very well could have been that simple.  I know blame is not an issue at this point and we need to move past this and not worry about what actually caused her death because we will never really know with all that was going on with her.  Let me just say it's harder than you may think.  I know that we can't carry this blame.  I know there were a bunch of other factors with her little body.  I know we have to give the whole thing to God.  I know a lot of things.  Just tell the rest of me to catch on... 

The whole destructive path of "What ifs" is something I've known about since day one after she died.  I've managed to work through this off and on these last 5 weeks.  It still rears its ugly head at times.  If I find myself starting to cry and lose it, I have been able to stop and ask God for victory over my thoughts.  He's been faithful, but the thoughts will come back periodically, especially after last Friday's talk.  BUT, I'm doing better with it.  I know deep down if it wouldn't have been then, it easily could have been at any point down the road.  She was apparently a lot more fragile than we realized.  I would say Lowell is having a harder time than I am with the What if's.  So pray for him through this.

Well, these are thoughts that came after Dr. El Gammal said it wasn't the immunizations.  I didn't voice all of this to her, because before a few minutes ago, I was planning on not ever telling anyone about not dilating her bottom the night before.  I'm not sure why I did put it out here for the world to see.  I don't know that it even makes me feel any better "confessing".  I just need to write my thoughts, so I guess I needed to just write it out more than I needed to hide it. 

She and I talked about how we've been in the last 5 weeks.  She did go for her 3 week vacation back to her family in Egypt and said the first week was hard to relax. I told her we'd prayed for her knowing it was the start of her vacation.  I hope she knows how much I appreciate her and all she did that day.  She let me talk to her about how God has helped my family through these last weeks.  How God has been everything the Bible says He is.  How I know I'll see Cayla someday because I believe the Bible and Jesus's death on the cross for my sins.  How I know because of Him, I'll see her again, not because I'm good or anything.  I don't hope I will see Cayla someday.  I KNOW I will see Cayla some day because of Jesus Christ.  She listened to me share about how God has been our strength.  She told me she was a different religion and I understand that.  When something is as real as Jesus is, you just want everyone else to know and understand that.

She also asked me if I'd noticed Cayla's color after she'd died.  I didn't particularly, but I do remember thinking she looked better than I thought she would.  She said that during those 4 hours, her skin was many colors from yellow to blue to purple and mottled on top of it.  Once she had died, she said all those around the table noticed her skin turn back to pink.  They hadn't seen that before, and they all stood there quite amazed at what happened.  I don't know why God did that, but I do remember thinking she didn't look too bad.  Just an interesting side note. 

She was a very special little girl. I've talked to God about why He allowed her to die.  It brings me comfort to know that many have seen a real, living, and faithful God through this experience in our lives.  I've thought that God knew that maybe her impact could be greater after only 2 months while so many were still closely following her precious life story through this blog. When I posted on the day she died, there were over 2,000 hits in less than 24 hours.  If that's all part of His plan, I accept it.  It's not my choice, but I accept it.  These kind of thoughts are what make Cayla's short life worth living.   I've talked to God about giving us another one...  He can do whatever He thinks is best for us.  I'm torn.  I want another baby in my arms to raise so, so badly, but I also know that I'm older and is it really best right now?  It's up to Him.  He had to specifically open my womb after 16 years of being completely closed for Cayla to be born, and He can do it again if He thinks it best.  I truly am ok either way.  The prayer that never fails... praying that God's will be done.

Well, I have to close this out.  Lowell and Samuel want to go play Disc Golf at 8:10pm so off we go.  I am needing to practice my song for Ralph Ball's funeral Wed. morning and make a salad and more for it too and I have a Concerts of Prayer meeting at 7am at Steak and Shake tomorrow morning with grocery shopping afterwards and I work half a day tomorrow and then wanted to go watch Olympics at my inlaws tomorrow night.  We'll see what gets done.   (Lovely run on sentence...)  Bye for now...

Staying busy

I started writing this a week ago after our yard sale on July 21st but never published it...

God is more precious to me than ever.  God's Word, the Bible, is more precious to me than ever.  Samuel is more precious to me than ever.  I know it's only been 4 short weeks since Cayla died.  I feel like I'm changing.  I just wonder if I'll ever feel like I did before.  In some ways I guess I'll never be the same, but in a good way.  The closer to God I am, the stronger I am.  I still find tears popping up when I least expect them, but that's just how it's going to be.  I just feel things deeper than before.  I think about things more... could just be because I'm more tired than before.  :o)  Ok, so it's more than that.  I look and hear children around me being yelled at and parents so frustrated, I just want to tell them to step back and get the big picture.  Take time to enjoy the children you have while you have them and they're still close enough to kiss and hug.  Please keep doing this.  I wish I could with Cayla and I do all the time with Samuel. Just don't take them for granted.

I want to go see Dr. El Gammal.  She was Cayla's pediatrician.  That Friday was the last day before her 3 week vacation started.  What a way to start it.  She stayed by Cayla's side the entire time in the ER.  She was so focused on Cayla.  Another Dr. came and told us Cayla had died.  She came in later somewhat hesitantly, and I just went to her and hugged her for all she was worth, thanking her for all she did to try and help Cayla that day.  Pastor Emery said a little bit later when they left, that there were some doctors crying out in the ER.  I just feel like there's a loose end here.  I want to see her and talk to her.  I want to ask her if this was a reaction to her immunizations.  I don't really know what or how she's feeling or if she still thinks about that day, but I just want to talk about it.  I went in to her appointment the day before acting confident about Cayla's care but really not sure underneath it all.  Bottom line is that once again, God could have prevented her death, but chose not to.  I just feel strongly that I need to close this door that's still open and go talk to her.  I kind of dread going anywhere near the hospital again and her office is in the hospital.  I think I'll call Monday to see when I could come in and just talk to her.  It may be hard in different ways for both of us. 

I just want to put out a very special thank you to Kim Hunsicker. She has spent 4 out of the last 6 days at my house for the sole purpose of our yard sale. On Monday when she came, besides helping organize and price stuff, she managed to wash every dirty dish in my house. There were few clean ones still in the drawers and shelves when she started. This is huge because I know she hates doing dishes as much as I do, and I don't have a dishwasher... She came Thursday and wouldn't leave until we had everything priced and ready to go. She came Friday at 7am to help set up and stayed all day! She even brought lunch that day and fixed chili cheese hot dogs for us all. She came this morning at 8am and helped set up and stayed all the way until everything was put away and cleaned up. She not only helped with the yard sale itself, but just as importantly or maybe even more so, she talked, laughed, cried, hugged, held, listened, and was an incredible friend to me and all of us today and this whole week. I am blessed. Thank you Kim for your wonderful friendship! Something she said today has stuck with me about her remembering some extremely painful times in her life and what a difference people made who reached out to her during those times. She told herself and God that she would be that person to others going through hard times and that is what motivates her. Showing the love of God to others. So through her pain, God has been able to use her greatly in the many lives she's touched. She has definitely shown the love of God to me and all of us this week. Thank you Kim. Love you. ♥  

Our yard sale was a success from a yard-salers viewpoint, but I'm glad it's over.  It was a great distraction the whole week.  I need distractions.  I need to stay busy.  If I'm not having to do something where someone is expecting me, I don't get much done. Busy is good right now... Some yard sale pictures.  Kim and I both got a good bit of sun.


Kim and I



Kim, Gary and Samuel discussing...?

Lowell and Samuel riding scooters during the yard sale's slow times. :o)

Bernadette and I.  She set up a couple of tables of stuff too.

Kim was left alone for too long without any supervision.  She organized the Precious Moments by year.  :o)  The ones we still have are all the dated ones such as Baby's 1st Christmas 1994.  We have some dated from the 80's.  It's nice to see so many gone with just these few left over. 

Now we're back to Sunday night July 29th.  Actually it's July 30th since it's now almost 1am.

Ok, moving on from the yard sale.  I downloaded some pictures of Cayla's plot at the cemetery.  I took this first picture of the clouds the day after her funeral.  We were outside that evening at my in-laws house just enjoying the beauty of God's creation.  The kids were out back and I just laid down in the grass.  As I looked up at the beautiful sky, I thought about Cayla in heaven.  She's not back in that hole in the ground.  She's with God.  So I pulled the camera out of my pocket and took this to remind me.  There's also some of her special little place at the cemetery.

Since I'm going through pictures I've finally downloaded, I'll add some of my brother Jim and his family.  They came up from Berryville, VA for the funeral.


Jim and Marla at Lakeshore Park the day after the funeral.

Jim, Marla, Meg, Chloe, James, Micah, Clara, Julia and Matthew
(click on pictures to enlarge them)

At Lakeshore Park



Matthew  :o)



Meg, Chloe and Clara with Sheylyn, our other niece at Grandpa and Grandma's house.

Chloe, Julia and Clara



Jim, Samuel, James and Micah the morning they left for home.


I have so much more to write, but it's late.  I did get to see Dr. El Gammal on Friday, but will write about it later.  It was good for me to go and hear what she had to say.   Oh, and I also have Cayla's service to put on too.  I haven't looked at it 2 weeks.  Now David's almost getting the rest done.  I need to look into it this week.   Stay tuned... it shouldn't be long now.  :o)

I'm doing ok.  Still having tears hit me when I least expect it.  Still missing our precious Cayla Joy.  Jesus is giving peace.  Jesus is sustaining us.   He's everything.  Everything we need.  Everything He says He is in the Bible.  The Bible is true from beginning to end.  If you have never experienced God's salvation, you're missing out.  The 3 of us have all personally experienced Jesus Christ alive and working in our lives through this time with and without Cayla.  There is no denying it.  Once you've experienced its reality, you want everyone else to as well.

Well, till next time.  Maybe tomorrow.  We'll see.  :o)  Thanks again for the prayers so many are still praying.  We need them.  Thanks.

Perspective

"Blessed be the God and Father of our Lord Jesus Christ,

which according to his abundant mercy hath begotten us again unto a lively hope

by the resurrection of Jesus Christ from the dead,

To an inheritance incorruptible, and undefiled,

and that fadeth not away, reserved in heaven for you,

Who are kept by the power of God through faith unto salvation

ready to be revealed in the last time.

Wherein ye greatly rejoice, though now for a season, if need be,

ye are in heaviness through manifold temptations:

That the trial of your faith, being much more precious than of gold that perisheth,

though it be tried with fire,

might be found unto praise and honour and glory at the appearing of Jesus Christ:

Whom having not seen, ye love; in whom, though now ye see him not,

yet believing, ye rejoice with joy unspeakable and full of glory:

Receiving the end of your faith, even the salvation of your souls."

I Peter 1:5-9

My perspective has to change to God's perspective to be able to rejoice

with joy unspeakable.  Love these verses. 

My life needs to be all about Jesus Christ.  He's done so much for me!



My sister-in-law Lisa sent this picture to us that she took when they visited.
Cayla was about 6 weeks old.  Love that precious little face.  She's almost smiling here.  :o)

 I am so convinced that everything we're going through right now comes down to perspective.  I would have to say that I have let myself become depressed these last 3-4 days.  I know this is normal to happen with situations like this, but I'm trying to figure out what has led me to this point.  When I'm still or quiet, I rethink everything that happened.  I relive it all.  I question it all.  I wonder, Why didn't we... Why did we... Why didn't they... Why did they...  I go through everything the doctors had told us.  I go through everything I observed and thought.  I try to picture myself figuring it all out before she died and preventing it.  Then I get depressed thinking this could have easily been prevented.  I still cry many tears for the baby girl that is no longer in my arms, but that is different from the depression I'm talking about.  Tears will be there for years to come and are healing and ok, but this depression from the wrong perspective should not be continuing on and on. So, I'm facing it and talking it out.

I have convinced myself that the catalyst in all this was the immunizations.  When Dr. Lorber asked me a week ago what the cause of death was, I said the death certificate said it was her heart.  Her heart was doing great, so what was it that caused her heart to quit?  I told him that there were so many factors, we really don't know exactly and that is so very true.  But I've been thinking about it all so much this last week that this is what I've concluded.  Not having any medical background, my thoughts can't help but blame the immunizations since she was doing ok, not great, but ok before she had them and then in a little over 24 hours she was gone.  We were encouraged to get the immunizations because she was slated for having a somewhat weaker immune system with most of her thymus gland missing.  Getting any sickness like that would have done her in. So, you think of all babies, she really needed her immunizations.  There was apparently enough going on in her body at the time to allow these to cause an infection in the rash on her bottom from her bottom issues, which gave the infection a place to get into her blood stream and then it was just a matter of time for her heart.  I don't know.  I could be completely wrong. This is just my theory, and I'm not medically minded and don't know how the body works.  I am writing all this because it's where my mind goes all the time these days.  I've been told that her heart, even with it's issues, should have tolerated the shots.  Then when you add the DiGeorge issues, you think that she definitely needs the shots.  So, what else was there to do?  That's what made sense at the time and that's what we did. 

Looking back is painful.  Who would have known?  Really though, we don't know what exactly happened.  This is all how I've put it together.  Nothing scientific.  Nothing sure.  Nothing proven.  SO, with all these uncertainties, I really don't know what caused her heart to quit.  My mind likes to think it's all figured out, but deep down I realize I really don't know exactly.  I can make my uneducated guesses, but look where it's getting me...  Down the road of depression.  This is a perspective that leaves God out, so of course it's going to lead to depression.

I must keep God's perspective.  It's hard when human emotions get in the way.  I find myself going down these paths I've mentioned with my thoughts and am really trying to stop and realize the real truth.  Nothing in the 2 previous paragraphs is sure or proven, yet I dwell on that, thus the depression.  I've realized that I must dwell on what IS sure and proven, the Lord Jesus Christ, and the depressing thoughts flee.  God's perspective is that He can use something painful and turn it into something good.  I know He could have prevented those immunizations from being given, not that there's any guarantee that that is all it was.  But whatever it is that truly caused her death, God could have prevented it if it was His will because He is God, and He chose not to.  He is a perfect God.  Perfect.  That means He sees a bigger picture with eternity in mind.  I must look at this through God's eyes.  If I don't, I will continue being depressed.  I write this to organize it all in my mind and solidify my decision to dwell on the Bible, God's Word, instead of what will never change in past circumstances.  Plus, He has used this for good.  If even one person has believed that Jesus died on the cross for them, rose again, and lives today, because of the life of a very precious little girl named Cayla Joy Sowry, then yes, tremendous eternal good has come of it all!

I don't know how all her future surgeries and other corrective procedures would have turned out with the DiGeorge Syndrome and unknowns going on in her body.  Future surgeries could have become full of complications and life-threatening issues every time she had one.   She was facing a good number of them.  We would have fought through every surgery with her and been there in every way possible, but honestly, I feel glad from Cayla's perspective that God took her to heaven.  She has no heart problems or any of the other problems.  She is perfect now.  It's ALL about perspective.  God's, Cayla's and mine.  I think I'll dwell on the 1st two.  Cayla would have had no choice but to have many surgeries and obstacles in her life.  Many people do.  She would have fought through them with us right by her side.  I'm focusing now on all that she won't have to go through.  She's been spared a lot of grief, pain, tears, sorrow and crying.  Cayla's perspective is that she wouldn't trade where she's at for anything!  :o)  See, when I can turn my thoughts to the Lord and heaven, I can smile.  This is turning out to be a great pep talk for myself.  I should have wrote this out earlier...

ONLY God can take my depressing thoughts and turn them into perfect peace.  I just pray that I can stay focused on Him.  I haven't been sleeping well because if I lay in bed, my mind wanders down my paths of perspective, and I go to depressing, dark places in my mind.  So I stay up as long as possible until I'm falling asleep walking up the stairs so when my head hits the pillow, I'm out with no chance to think.  If I don't fall right asleep I get my book light out and read to focus on something else until the book falls out of my hands.  I wake up at 3 or 4am to go to the bathroom and can't go back to sleep and it all starts over again.  So, out comes the book again.  Problem is, once I've slept a couple of hours, I'm not ready to go back to sleep again and end up reading till Lowell gets up at 7.  I am really asking God to bind Satan from my mind and these depressing, destructive thoughts.  I want to focus on Him.  I need to read my Bible in the night like this, but I don't.  I just read a story to get lost in someone else's life and not think about mine.  I think because it's harder for me to focus longer periods of time on Scripture in the middle of the night, that I turn to light, easy reading of Christian fiction.  God is just going to have to help me work through this and figure it out because I need more sleep and I'm disturbing Lowell's sleep.  I know He will.  He's ready and waiting and holding and carrying me right now whether I realize it or not. :o)  He's SO faithful!  He will get us through this one day at a time.

Wanted to say that I got a really nice call from my OB/GYN, Dr. Rajabi last week.  He's a specialist and not my regular OB/GYN and we only had him because of Cayla's heart.  So, I won't have a reason to go back to him and all the wonderful nurses in his office at Hillcrest.  I had called a week or so ago and talked to Teresa his nurse that worked with us and told her what happened with Cayla and to let Dr. Rajabi know.  He delivered our precious Cayla Joy to us way back on April 24th.  Seems like eons ago.  I gave her my blog to read and pass on.  Dr. Rajabi said how sorry he was for our loss and that he'd read the whole blog and was very touched by what has been written about Cayla's journey.  Thank you so, so much Dr. Rajabi for all you've done for us and Cayla.  God is real, alive and working on changing many hearts because of her little life.  I wish he could be my regular OB, but oh well.  :o)  Maybe we'll still get to talk again.  It was wonderful to hear from him.  God has blessed us with great doctors!

Dr. Rajabi came by later that week that Cayla was born,
 to check on us and see how we all were doing.   

 I did work last Wednesday at Basic Ingredients which was good.  Love the environment... Christian music playing, Christian boss, starting the day with prayer and devotions, moving around doing a variety of enjoyable, fairly easy work.  I can't argue.  It was hard greeting people at the door and register though.  I think I would have just liked to hide in the kitchen and sort the bulk food since my heart wasn't into talking to people and being all cheery.  I cried as I pulled up in the parking lot and started my day a little weepy, but moved on fairly quickly.  Usually the people part and talking and greeting people is my favorite part, but it was a struggle last week.  I hope it will be better tomorrow afternoon and Wednesday.  I'm sure it will get easier and better the more I feel comfortable with how things are done too.  But, thanking God for this opportunity. 

We are busily preparing for a yard sale this Friday and Saturday.  I would like to advertise it in the Star Beacon, but that alone is $25!!  Crazy.  We'll see. We live on a busy street, Route 20 in Saybrook, 4 houses west of Kelly's Gardens, right in front of Bible Baptist Church... (hint, hint).  We should get plenty of customers.  But this is keeping me out of trouble and giving me company during the day.  Had my mother-in-law, niece, Kim Hunsicker and Bernadette Nichols over today helping and we sorted and priced everything left over from the store.  Not much, but it needs to go.  We even had time to pull out everything thrown in the one side of our storage closet and clean that up so we can price that stuff Thursday.  God's good.  It was a good day with good fellowship.  Samuel did laundry for me today while we were sorting.  Love my young man!  He's also sorting his stuff and digging up boxes of transformers, planes, and many blasts from his past.  :o)  Yard sales are a pain, but good a distraction for us right now.

Tomorrow is our 19th anniversary.  Can't believe it's been that long.  Lowell is my best friend.  The one who knows me the best and loves me anyways.  With so much uncertainty today, I thank the Lord for keeping our marriage strong and together for these years.  It's not perfect, but God's allowed us to grow closer through the tough times over the years instead of farther apart.  I am blessed.  Marriage is til death do us part and Lord willing that's what it will take to separate us.  Lowell's birthday is the day after.  Looking forward to a trip to Erie, PA tomorrow night for dinner and some shopping.  Very thankful for my husband and family God's given us. 

Before I close I have to admit how messed up I've been these past few days.  This depression that I allow in at times when I'm focused on the wrong things, has affected my ability to function properly... Just ask Lowell... It started back with us still having one last merchant account to still close out from the Sonshine Corner.  They wouldn't let us make payments, it was all or nothing, $700.   So it kept being put off since we weren't able to set aside that much at one time with other bills.  Whatever.  :o)  Well, Lowell's cousin, Jodi, the funeral director had been gracious with us in honor of Cayla, on not charging us for her services, just what money was spent on items.  We had set aside the money from what we'd been given to pay for this.  When we got the bill from her in the mail, it said we owed nothing because it had anonymously been paid for!  Isn't that amazing?!  God is taking care of us.  (Side note... because Cayla was under 3 years old, they waived the $200 digging and prep fee at the cemetery and because it was in the township my in-laws live in, they took another $100 off, so the cemetery costs were only $150, which my in-laws insisted in paying for in honor of their little granddaughter.  We are blessed!)  So, we now had money set aside that we didn't need to use for the funeral and realized we could pay this store bill off!  Yay!  So Lowell did.  We had been keeping our account open until this was settled.  I thought for some reason last week that Lowell had already closed the Sonshine Corner bank account months ago and had combined it all into our personal account.  He asked me last Friday to go and close the Sonshine Corner account.  All I heard was "close the account".  So, I went to the bank Friday and closed out the wrong account...  Cancelled our debit cards and all.  Although I think I cancelled my card from the personal account and his from the store account.  Such a crazy mess.  I was so proud that I took care of this for Lowell until that evening when I told him how much cash I'd got back from closing the account, and he said, "There was only $10 in that account!"  Oops.  :o}  Well, he was going to close that account too eventually since we've restarted with a different bank, but he still had things being taken out of this account which sent him scrambling a bit to try to change accounts over. I'm not focused... yes, it's causing a few issues in our lives.  This could have been a lot worse, but we were actually laughing about it that night.  He's been very patient with me these days... I love my husband.  I'm still trying to get focused though.  I'm going in tomorrow morning to try and fix this mess. Now the real test of whether I'm focused or not...  :o)

Well, sometime soon, I'll be posting Cayla's memorial service.  Still working out some kinks.  David Brown, Elise's dad, has so wonderfully said he would do this for us.  So maybe this week or next since this is a very busy week, I'll be able to post it and get it working in the blog.  It's hard to hear some parts so I'd like to take the time to type it out too.  We'll see.  I did also find the setting that's not allowed most people to post comments on this blog and changed it. So now I believe anyone can post comments.  We'll see if it works.

Thanks again so, so much for your continued prayers.  We love our Lord, our family and friends for supporting us and holding us up during this difficult time in our lives!

Last visit to Cleveland Clinic part 2

I didn't really say all I wanted to say about last Thursday's visit to Cleveland Clinic.  The time my mother-in-law and I spent talking to Dr. Erenberg was so good.  I think we all were crying at one point or another.  I cried when I was telling her all the things I that make me feel guilty and telling about that Friday she died.  Dr. Erneberg cried or even just teared up, while I talked about where Cayla is in heaven and how God has wiped away her tears and that I know I will see her again.  I know my mother-in-law cried throughout.  It was good healing tears and sharing.  I hope Dr. Erenberg has seen a glimpse of Jesus through our conversation.  I love talking about Jesus and how He's met our needs and filled me with His wonderful peace through all of this, and I love remembering Cayla with those that knew her.  In Cayla's case the doctors and nurses knew her more than my family and friends got to know her.  That hits a very hurtful and painful chord to think of so many that didn't get to spend much time with her, or never even got to meet her.  So many prayed for her without ever meeting her.  Heaven.  Looking forward to heaven to be reunited with my little girl.  Going to send Dr. Erneberg a picture of Cayla.  I told her to pass on to all the other doctors and nurses our thanks for their above and beyond care for Cayla.  I don't know how they do it, but despite all the patients they see day in and day out, they are able to make each one feel like they are the only patient in there and all the staff is working on just your baby's needs.  We felt special and from talking to many others, they did too.  I never had to explain anything to anyone about Cayla.  They came in that room knowing all about her from day one, even if they just met her at 3 weeks old.  Just felt so well taken care of. 

You know I forgot to mention this when Cayla had her heart surgery, but I have to share about the anesthesiologist who came in to talk to us.  He was a big, tall, gentle, man who was younger than me.  He had all the family there and told us that morning before they wheeled Cayla away that as soon as Cayla is in his care, he looks at her as his own child.  He told us about the 2 boys, I believe, that he has and how blessed he is to have them.  He wouldn't want anyone to hurt or do anything to harm his children.  So when he takes a child for surgery, he looks at them and treats them as if it's his own child laying there, and will do everything in his power to make this surgery as pain-free as possible.  He is the one that had her the first hour she was in the OR.  I believe he is the one that put the central IV in through her jugular in her neck using an ultrasound machine.  Amazing really since she had no neck... I'll find some pictures from the day of surgery.  He also put the peripheral IV in her wrist as well and completely prepped her for Dr. Stewart to come and do amazing things with her teeny, tiny arteries. 



Samuel holding his sister who has no neck, but the anesthesiologist got the IV in her jugular anyways.  I know most babies are like this and of course have a neck, they just like to hide it well.  :o)



This is the anesthesiologist on the right I was talking about who took Cayla and handled her as if she was his own.  :o)

After the visit with Dr. Erenberg, Cathy, the lactation nurse wanted to see me, so we planned to meet down by the "tree" in the main lobby in about 10 minutes. When we got there a group of students were there playing the grand piano, violin and cello in the main entrance lobby.  It was beautiful to hear as we waited!  You know, I got to talking about everything else with Cathy except the cabbage leaves.  Forgot all about it. She'll be getting another phone call here soon from me.  :o)  She even thinks that the milk bank in Columbus will take all my frozen milk.  I have about 40 small bottles of milk from when I was in the hospital and Cayla was on an IV not eating.  We'll see.  I'd like someone to be able to use it somewhere.  I also got to talk to her about Cayla in heaven and getting to see her again.  I just want as many people as possible to know how to get to heaven... not for them to be able to see Cayla again, although that's definitely a perk, but to know before they die, where they'll spend eternity.  I want to see all my friends from Cleveland Clinic in heaven someday because they accepted Jesus Christ as their Savior and have been saved from an eternity in hell. If you're not sure what I mean, reread my post from Easter Sunday.  I think I called it "Happy Resurrection Day" or something close to that.  Loved talking to Cathy and brought tears to her eyes too as we talked about Cayla's tears being wiped away by God Himself!  I just love picturing that!  Don't you?  It's an awesome thought and really helps me keep a right perspective through all of this.  She also told me that many nurses and doctors from the NICU remember Cayla and me while we were in there that first week and are very sad to hear about Cayla.  She said for not being in there all that long, they really remember you all.  I gave her the blog address and told her to pass it on.  I hope they get to read this and know how much they were appreciated.  Loved nurse Kathleen and Dr. Vlad. :o)  Great people down on 3rd floor in the NICU.


Cathy, the lactation nurse, and I the day Cayla was discharged the first time.

Dr. Vlad standing in the middle, not sure exactly what his real name is... I don't know if Vladamir is his first or last name.  I'm thinking it's his first name.  Dear Dr. Vlad and his Russian accent.  :o)

Nurse Kathleen from the NICU, one of my favorite nurses in the whole hospital. :o)
This was during Cayla's EEG, a brain scan or something like that.

Tried to get a hold of nurse Mary Lou to see her, but she was with her dad who was taken to the hospital that week.  If you would, pray for him.  He's doing better now, but still has a ways to go.  Thanks again to Mary Lou Lucas and all her wonderful encouragement and help through this whole process.

Overall, I came away from Cleveland Clinic last Thursday with such a peaceful and joyful spirit.  God is in control and He is working in lives.  What more could I ask for?  We did stop at the Ronald McDonald House to return one of our keys that we finally found... they're so good and patient and didn't even get upset with us.  We still will repay them even though they say, only if we can, and if we do, there's no rush.  We were able to have that room for 24 days at $20 a day.  Could you imagine what a hotel or other lodging would be?  So much to be thankful for.  They are adding 20 more rooms on the side, but despite the construction, we were still able to stop and smile with Ronald before we left.


My nephew Tyler and Ronald... ;o)



Ronald, Samuel, Tyler and Sheylyn... love them all!



Me, Ronald and Mom saying goodbye.  :o)



Yesterday, Monday morning, I got a very nice call from Dr. Lorber.  He wanted to express his condolences and let us know just how sorry he was about Cayla.  So, so nice.  He wanted to know what they said the reason for her death was.  Well, it was listed as her heart, but I told him, it really wasn't just that.  I tried to explain some of what I've written in the last couple of posts.  I feel bad for them because they worked so hard to do everything possible to keep her alive and for it all to end so quickly.  No one asked us if we wanted an autopsy done and if we'd been asked, we'd have said no.  An autopsy might have been helpful to the doctors though, but in reality it might not have shown anything.  I don't know.  It just really touched my heart to have him call and ask how we were doing.  I did get to tell him we're doing well and why we're doing so well with God holding us in His hand and wiping Cayla's tears away.  He asked for the reference to that verse again, and I just pray that God will work in every one's lives that have been touched by our precious Cayla Joy.  I've been giving everyone this blog address to read about any parts they missed in her journey and our journey with her.

 

Thank you all really for the prayers still being sent in our behalf.  We all still miss her deeply, but are willing to trust God and His purposes for our precious Cayla Joy's little life.

Final visit to Cleveland Clinic

Dr. Erenberg, her cardiologist, back when Cayla was a day old.  So sweet... both of them.

I started writing this last Friday, July 6th.

Good morning!  I know I've had questions that will never be answered.  I just wanted to talk it out a bit with Dr. Erenberg and we did.  So Samuel, my mother-in-law, nephew Tyler, niece Sheylyn and I all headed out to Cleveland yesterday.  Samuel's a great driver and we arrived safe and sound.  :o) You know, this reminds me... We had been having doctor appointments since Cayla came home and only have one car.  I had asked Carol Rettger if she would be willing to take me out to Cleveland Clinic for some appts. a couple of weeks ago.  Well, John had been sick and she didn't want to pass anything on, so they told us we could take their Durango that they only use in the winter for its 4 wheel drive.  Then they said we could keep it and use it as long as we needed until the snow falls again.  :o)  What a blessing this vehicle has been to us!  Yes, it truly is a gas guzzler, :o} but it's a strong safe vehicle and very easy to drive.  We are still using it and I just want to say thank you to them for doing this for us.  God is good!

Back to yesterday.  Mom and I left the three in the waiting room and the secretary took us back to Dr. Erenberg's office.  There's a lot of things I know, but sometimes you don't always put things together to make sense.  This was what this conversation did for me.  We know Cayla had many "known" problems.  We knew she had heart defects.  We knew she had fused ribs.  We knew she had scoliosis.  We knew she had an anus in the wrong place.  We knew she had a club foot.  We knew she didn't have a thymus gland. We knew she had a weakened immune system.  We knew she would be on calcium supplements the rest of her life.  We knew all this and more.  She wasn't just facing the Hypo-plastic left heart syndrome.  She was facing a lot of abnormalities from the DiGeorge syndrome. 

When Cayla was 5 days old, she had what they've been calling an "episode".   Something went off in her, completely unprovoked, that sent her vital signs and stats all over the place to the point that they had to put a breathing tube in among other things.  She righted herself for the most part before they could, but still, for some reason she had become unstable.  Two weeks later, this happened again, where her stats and vital signs were all over the place, although this time was a week after surgery when she had dislodged her central and arterial IV's.  Thus we had "episode" 2.  She settled right down and looked good later that morning, but had had quite the night.  Then, 2 weeks later, when we had been home for almost a week, this all happened again.  She had her 3rd "episode" that sent us back to the hospital.  For some unknown reason, started spitting up, became dehydrated, couldn't breathe right, turned white, her white blood cell count was really high and so on. When they tested her for infections or tried to find out what was going on, everything came back negative.  There was no infection, and they have no idea what caused all of what happened that week.

The known issues is what I was focusing on.  None of them seemed to be life-threatening except her heart, but that was doing really well.  These were all treatable and so we were working to treat them.  It was the unknowns, that all her heart doctors were always concerned about.  I remember that a couple of them wanted to keep her in intensive care a little longer to observe her and see if they could figure this out.  Obviously we couldn't live there indefinitely, but there were still so many questions as to what was going on inside Cayla to cause these episodes.  Because of this, Dr. Erenberg wanted to bring in more doctors in different departments to see if any thing else could be found.  So we were working through appts to see doctors in genetics, neurology, immunology, endocrinology, and probably more "ologies" but you get the point.  They were trying find answers to the unknowns. 

When I started talking to Dr. Erenberg yesterday, I started listing all the things I felt I didn't do right or catch and said that I've been feeling very responsible for Cayla's death.  I've been struggling with this off and on these last 2 weeks.  I'm not going to go into them here because I want to forget them... I asked her about some of the things that happened at the ER here in Ashtabula that bothered me that could've hindered Cayla's chances of survival.  Even her immunizations the day before... they could've played a big part in all this.  I just wanted all my thoughts out there.  I know most can't be answered, but I said them anyways.

What she told me is exactly what I needed to hear.  I hadn't put this all together in my mind.  She said that Cayla had many known issues.  We naturally focus on those.  But we cannot forget that she also had many unknown issues.  There has always been some underlying problem that couldn't be isolated.  The night before she died, she seemed the picture of health, but even though she may have looked normal, she really wasn't. Just adding the unknowns into my thinking, made me realize that there was a whole lot more going on than just what we did or the ER doctors did.  In my mind, this thought has taken a huge weight off my shoulders.  I "know" I can't blame myself or the ER events, or immunizations, but it's natural to go down that path and stay there awhile.  I know God is in control like Lowell said she still could have died had we got to CC in time or she could have lived if we spent the rest of the day at the ER in Ashtabula.  These weren't defining moments.  God was in control. 

This simple, but obvious part of Cayla's life, the unknowns, really did impact everything else that went wrong with her that day and during previous episodes.  This one had too many factors.  Everything combined, whatever that may be, was too much for her little half of a heart.  If all she had was the heart problem, she'd had a great chance of survival not having to have the Norwood.  If she just had the other isolated issues, we probably could have dealt with each surgery and survived.  But having to deal with all of it was too much and this would have happened maybe at any given set of circumstances in the future.  It is what it is.  Cayla is in heaven with no more sorrow, pain, or crying and God has personally wiped away her tears for good.  I know I'll see her again, because I've given my life to God, and He has covered my sins and paid for them with His blood He shed on the cross.  I believe He rose again, so the verse in Romans 10:9... "That if thou shalt confess with thy mouth the Lord Jesus, and shalt believe in thine heart that God hath raised him from the dead, thou shalt be saved.", says it all.  I've been saved from eternity in hell and the Bible says I'll be in heaven.  Like Pastor Emery said at her funeral, we know where she is, but do you know for sure if you're going to heaven when it's your time to die?  Please don't put it off.  We don't know when our time is.

So if God is in control, and He allowed Cayla to die, and she had such a loving family, how can I still trust Him?  Very easily.  He's a perfect and holy God.  What more needs to be said?  Who am I to argue or ever be angry at God?  You'd find me robbing a bank before you'd ever find me angry at God.  I'll ask why to see what I can learn and grow through this trial and trust Him, but I'll still keep on missing her. I can also rest knowing He takes things that are bad and will use them for my good.  If we understood the mind of God, He wouldn't be God.  His ways aren't ours and neither are His thoughts our thoughts. It's all part of that beautiful trust and faith like a child.  They don't understand everytime something bad happens, they just trust you, the adult in their life, just like we need to trust God in times like this with childlike faith. 

It's now Monday night, July 9th.

I have been asked this in so many different ways.  It boils down to the question many have asked me, why God allows bad things to happen to good people.  We live in a world that has been engrossed with sin.  We are all sinners.  We're born that way, so there really is no such thing as a "good" person.  I'm just as prone to problems and heartache as the next person.  God can take these "bad" circumstances and use them in our lives to mold us and make us more like Him.  Bad things happen to everyone.  No one deserves a pain free life.  Just because I've given my life to Jesus Christ, doesn't mean life can only be full of good things now. 

It's just as fair for Cayla's life story to be part of our family's story as anyone else's.  Did I want Cayla to die?  No, I want her here in my arms. I'll miss her, but whether through her life or her death, I want God to be glorified.  I want everyone reading this to think about the God that created them and realize their need to believe what the Bible says He did for us on the cross.  So, maybe for Cayla's sake, you'll do it.  Give God a chance.  Stop putting off something that you've thought about for years.  Just do it.  ***You will ~never~ regret it!***  Take the step of faith to believe on Him today.  You can have the same peace I've had through all of this.  Please email me with any more questions.  God is working in all our lives, and I'm more than happy to keep talking to any one else that has questions.  lindasowry@gmail.com

"And that he died for all, that they which live should not henceforth live unto themselves,

but unto him which died for them, and rose again.

Therefore if any man be in Christ, he is a new creature: old things are passed away;

behold, all things are become new."

2 Corinthians 5:15, 17

It's time to find a new life in Christ if you haven't already.  I have, and now know I will see our precious Cayla Joy again in heaven because of God's promises!



Cayla Joy at 7 weeks old in her beautiful cocoon made by Grandma Pat.  Miss my little peanut.



I'll finish the rest of Thursday's final visit to Cleveland Clinic in the next blog.  Too much on my heart right now.