A Child of Mine

A Child of Mine
by Edgar Albert Guest copyright 1929

 I will lend you, for a little time,
A child of mine, He said.
For you to love the while he lives,
And mourn for when he's dead.
It may be six or seven years,
Or twenty-two or three.
But will you, till I call him back,
Take care of him for Me?
He'll bring his charms to gladden you,
And should his stay be brief.
You'll have his lovely memories,
As solace for your grief.
I cannot promise he will stay,
Since all from earth return.
But there are lessons taught down there,
I want this child to learn.
I've looked the wide world over,
In search for teachers true.
And from the throngs that crowd life's lanes,
I have selected you.
Now will you give him all your love,
Nor think the labour vain.
Nor hate me when I come
To take him home again?
I fancied that I heard them say,
'Dear Lord, Thy will be done!'
For all the joys Thy child shall bring,
The risk of grief we'll run.
We'll shelter him with tenderness,
We'll love him while we may,
And for the happiness we've known,
Forever grateful stay.
But should the angels call for him
Much sooner than we've planned.
We'll brave the bitter grief that comes,
And try to understand.

One more day....

Today was another day. I went to church to my ladies group.  I only cried twice so I figure that was pretty good.  The first time was because the room that had Allison's 2 best friends in it was full and they wanted her to go into another room.  She knew they were in there and she started to cry.  She has NEVER cried before about going into a different room, even when she knew her friends were in there.  It was our first time attending a church function since Caleb has died and she is a little stressed. So then I started to cry.  I didn't know what to do.  I mean part of me wanted to tell the lady that her brother died and she really needs to be in there with her friends today.  (oh and we were 10 minutes early!) But I never know when it's okay to "pull out that card" or just keep my mouth shut.  Part of my struggle is that when I was younger I had a really hard time keeping my mouth shut, ever.  I always said what was on my mind.  My filter was non existent.  God has brought me a long way and I would almost rather err on the side of caution than to lose that filter again.  (although both Jason and my mom said I would have been totally justified in telling the lady since it was our FIRST time back to church) Anyway, when she saw us hugging and crying she let her into the room anyway.  I then told her between tears that her brother had just died and she could really use her friends' support and just a familiar face.  I didn't expect that situation to come up and it caught me a little off guard.

The second time I cried was a totally normal reason. (haha) We were meeting with our new small groups and we were supposed to tell how many kids we had.  SIGH. I started crying after I said my name.  But we were also supposed to say what we were hoping for God to do in our lives this year through the group.  Lots of people had some good answers.  Mine? Well the real reason I signed up for the group was because it was at the church.  The previous group I had been going to was located at someone's house and with Caleb's feeding tube and increasing needs I didn't feel comfortable leaving the church.  So MY plan was to be there for Caleb.  But here's what I realized today.  God knew what was going to happen on September 19.  He knew that after that day I wouldn't have to take care of Caleb anymore. He has that taken care of now.  So the way I see it, is that He has another plan for me and this group. And even though I don't know what it is, I have decided to stick around and find out.  Even though I really want to go back to my old group (the one at the house) because I know everyone, and they know me.  They know my story, they love me, I love them.  How I wish God was into "being comfortable." Ok not really.  I mean part of me does, but the other part knows that He is stretching me and helping me grow, and I want to know what He has up His sleeve.

People gave me lots of hugs today which was nice.  I also got lots of, "How are you doing?"  Um, I have no clue? I mean fine because I'm not in tears? Or fine because I'm not thinking about all the things I miss right this second?  Please don't get me wrong, I know people are genuinely concerned and want to know how I'm doing, it's just a hard question to answer at this point.  The fog is still really thick and each day is a moment by moment thing.  I mean overall I would say we are doing pretty well.  We are still so excited for Caleb and know he is having a blast up there! But we are struggling to remember him, struggling to not feel like we are moving on without him, struggling with the hole he has left in his absence.  He really was the sweetest thing you could ever hope to meet.  I used to love walking into his room to get him after he had been asleep.  As soon as I would open the door I would start to talk to him and if he was upset he would calm down.  If I was upset (because it was the fourth time I had been up in the middle of the night) one sound from him made it all ok.  One look at him and my heart would melt and I would do whatever he needed me to.  I do miss my little man so much.  I miss his hugs, his smiles, even kissing his teeth because he couldn't close his lips.  I miss asking him which Barney he wanted to watch, or trying to figure out which toy he wanted to play with.  But I do believe this: Caleb does not miss this life.  I believe that by us living and being happy we are honoring his memory.  I will never, "move on" or "find a new normal."  Not possible.  But as a friend put it ever so wonderfully, "I am moving on with him in my heart."  THAT I think I can do.

Much love to you all and thank you for loving us!
Jessica

You Never Know

It has been 1 week since we said, "I'll see you when I see you" to our precious son.  It has been a crazy, hectic, numb, busy, sad, family and friend filled week.  I was so happy to have our family around us as we begin this process.

Today as I was making some phone calls and running an errand I thought about part of a conversation I had a few nights ago, you never know what the other person is going through. As I was calling a company the lady on the other end was not very pleasant.  I wanted to tell her what was going on and ask for a break, but  I didn't.  Instead I thought, "man, if she only knew."

I wonder how many times I have been short with someone or upset because someone was speeding, when they were going through their own personal crisis.  As I was speeding down 35 to follow the ambulance that was carrying Caleb and Jason I cut into the HOV lane when I was the only one in the car.  I always hated it when people cut into the HOV, but all of a sudden I could see why someone might need to break some rules.  (not that I think everyone that cuts into the HOV has a good reason mind you) but I am trying to look at things in a different light.  I know what I'm going through and I know I'm not the only one.  Who knows what kind of stress and life changes other people are dealing with.  I want to give people the benefit of the doubt, I want to give people grace, I want to treat people like I want to be treated.

You just never know.....

The Day After

Yesterday we said goodbye to Caleb's "old body" as my 4 year old calls it.  I LOVE that she came up with that and said it a bunch over the last few days.  I was so happy to be able to share my precious boy with so many who didn't have the opportunity to be around him like I did.  The stories shared and pictures shown  were just a glimpse into the life of Caleb.  But the theme was spot on, he was the sweetest, most joyful kid you could ever hope to meet, even until the end.

There are a few things happening behind the scenes that I hope to share with you all in just a few days.  The slideshow from the funeral, a tribute video, and lots of videos that I took when Caleb was alive.  As soon as I get the funeral video I'll post that too.  It was an honor for us to share him with everyone that was there and I can't wait for others to be able to experience his Spirit as well.

We are all still pretty numb, everything is so different without him around.  We cry in waves, but today was the first semi calm day we have had in over 9 days.  Jason began his "therapy" today by starting to put up the swing set that we have had in the garage for over 3 months.   We got it right before Caleb went in the hospital for his feeding tube (in June) and since that time we have been so busy. It was so hot here that even if he would have put it up Caleb wouldn't have been able to play on it.  Caleb got hot and sweaty sitting in his chair with a fan blowing on him, let alone outside in 100+ temperatures.  He couldn't regulate his body temperature and would overheat very easily.

Our minds are still in a fog.  We are all using the wrong words in sentences, and we have no idea what day it is.  Each day doesn't seem that long but trying to remember back to the previous day seems like an eternity ago. I'm thankful for the numbness and peace, although I know it won't last forever.  I know God has a plan for the grieving process too and I am so thankful.  He never intended us to experience death and loss, but since we made the choice to follow our own plans he came up with a plan B.  A plan that would help us walk through and deal with the pain.  I have no idea what comes next, but I'm open to the process and am trying to take it one day at a time.  Jason is an amazing partner and I am so thankful to have him beside me to walk through this with me.

We were just talking about how we both feel like we have already forgotten so much about Caleb, or even just being scared of forgetting things.  Jason said he read about people being scared of forgetting how someone smelled or felt and how weird it sounded, but now we are beginning to understand. It feels like we said goodbye and now we are moving on.  I know this is just a stage and in some ways I'm praying it passes quickly, but again, I think it's a cloud that God gives us to help us ease into what's about to come.  We will look at pictures and watch videos and talk about him all the time so as not to forget him.  Even Allison asked last night if we could talk about Caleb.  He is forever in our hearts and forever a part of our family.

Love,
Jessica

Mercy

As I have been talking and starting to process over these last few (very long) days, I have realized something. God is so faithful. He loves us more than we could ever imagine.  He never wanted Caleb to suffer.  I begged God to heal him.  And while I know that God CAN, that was not Caleb's story.  I don't blame God, we live in a fallen world and life isn't fair.  But here is what has been so crystal clear from the very beginning; God went before us and took care of us every single step in this crazy journey we have been on with Caleb.  I could tell you about time after time where God's provision and guidance were so evident.  But the last step is what keeps going around in my mind.

I knew Caleb had a condition called Leigh's Syndrome because of Mitochondrial Disease.  I did my research and I read the facts that said that most kids who show signs of Leigh's in infancy don't live very long. But God was ever so gracious and put a screen over my eyes.  See, I didn't know Caleb was going to leave us, I didn't really have a clue; until the day he died.  That morning, the screen was lifted and I could see very clearly what was happening, and that my little bubba would be joining Jesus that day.

My Mom, Jason, His Mom, other friends or relatives, they all knew at different times that Caleb would be leaving us very soon.  God told them each when he knew they needed to know.  When he knew they could handle it.  When he knew how much time each person needed to process what was going to happen.  Jason knew not too long after Caleb was born that he would only be a temporary gift to us.

I am in awe of God's mercy on me.  That he would help shield my eyes until I was ready to see.  My job as a mother demanded my time and energy to take care of Caleb, Allison, and Jordyn.  He knew I wouldn't be able to do that if I knew too soon.  But here is the cool part.  He did start to prepare me.  I had many thoughts leading up to that day about a myriad of things concerning Caleb and his death and subsequent change in my life afterwards.  I had conversations with people that were beginning to prepare me for what was about to happen.  In my limited understanding I just figured that one day in the distant future these things would all come to pass and I would deal with them then.  It was totally God's mercy on me.  And when he knew I was ready, he lifted that screen and I saw.

The peace that Jason and I had as we were deciding to let our precious boy go was nothing short of an absolute gift.  The peace that we have had about that decision since that day has been overwhelming.  I know beyond the shadow of a doubt that we did the right thing.  It doesn't make the pain of Caleb not being here any less.  It doesn't make the tears stop flowing.  It doesn't make the hole in my heart any less big.  But it renews my faith in my loving Savior.  I know that I can trust Him with everything I have because he is faithful.  Every. Single. Time.

Love,
Jessica

I'll see you when I see you

Our precious bubba went to be with Jesus on Wednesday September 19, 2012 at 4pm.  He told us it was time to go and he left surrounded by his family, in the most peaceful way I could ever imagine.

The last few weeks Caleb has been sleeping more and more.  He would sleep 12-14 hours at night and then take a 4-5 hour nap.  I would usually have to wake him up from his nap to make sure he would go down at night, so who knows how long he actually would have slept.  I told Jason just a few weeks ago I felt like he was slipping away.

Last week when he would wake up his lips were sometimes very pale and he looked "checked out" for a while after he woke up.  Caleb didn't talk but he was SO communicative with his eyes.  He could say a million things with the way he looked at you. (can I just say I hate talking about him in passed tense?) Anyway, there were little things that were changing with him and as much as I didn't want to see what was coming, I now know.  However, as I begin to process all this I am confident that God kept me from really seeing or believing what was going on.  I had too many things to do during the day taking care of all the kids and all of Caleb's needs to be a basket case.  All of my family knew at different times that he didn't have much longer and I think it was God's mercy that He let us know when He knew we could handle it.

He also started throwing up again last Tuesday.  He threw up once a day until Friday when it was multiple times.  We changed his diet to a much calmer blend and I think that helped but we knew something was going on.  (again, I didn't really think about what it meant, I just hated to see him throwing up)

Sunday at noon he stopped breathing and turned blue.  He got very limp (more than usual) and his eyes checked out,  but after about 30 seconds he started to breathe again.  I think it happened again just a few minutes later but my mind is kinda foggy.  Jason and I decided to take him to the hospital, so we ran around and got a few things together.  I came down the stairs and Jason had him in his hands and said, call 911, he is doing it again.  It lasted about 30 seconds again.

The ambulance arrived and we met them at the street.  When they hooked him up his oxygen levels were at 70.  They are normally at 100.  They came back up, but they took him to Lewisville Medical Center.  Long story short- they intubated him and transferred him to Children's Hospital in Dallas.  He stabilized and Sunday evening and night were pretty uneventful.  They had to keep him sedated because the tube is so crazy. On Monday they decided to do an MRI since he was already intubated, so not much happened most of that day.  Tuesday morning he had his MRI and came back just fine.  He had been breathing on his own since Monday morning so they decided to extubate.  I hadn't expected ANY problems since he was breathing on his own and he had never had any problems before.  Well that's not what happend.  He was wheezing and trying so hard with every breath after they took out the tube.  They tried 3 or 4 different things and none of them seemed to help.  The Dr. came in and was telling us that they needed to know what we wanted to do.  If they intubated him again it would probably have to stay in, which would mean a trach, so he would need surgery.  I asked if there was any other options and they said they could put something a little stronger than just oxygen in his nose (canula) and give him a mild sedative to see if that would calm him down where he could breathe better.

It seemed to help and he eventually he even slept some! We thought we were in the clear.  I figured everything was just swollen and needed some time to go back to normal.  The next morning the Dr. showed us the MRI results. We knew that the dead spots had grown, he had lost all gross motor ability so that was no surprise.  But I asked, what about the part of the brain that controls the breathing? She said that had not been effected, but a big part RIGHT above it had a big spot of dead cells.  We knew this was really bad.  But, I thought maybe we had a few weeks or a month before we would lose him.

 I left to go to breakfast and Jason texted me and told me to get back to the room.  He stopped breathing again and this time his heartbeat went WAY down too. By the time I got back, he had started breathing again but the nurse told us at that point that we had some hard decisions to make.  If it happened again they would have to intubate.  If it was too swollen to get the tube down they would have to do an emergency trach.  If his heart stopped they would have to shock him and she said it is VERY painful.  About this time Caleb's heart started having arrhythmias. I knew at that moment that we would not be taking Caleb home with us.  I knew that even if we tried all of the invasive medical procedures, Caleb's body was going to give up very soon.  He was telling us that he was ready to go.

We didn't want our little boy's last moments to be filled with Dr.'s, and emergency procedures, pain, scary things, and not being with him, and family not being able to say goodbye.  He was telling us that his body was giving up on him and we had the choice to let him go peacefully, or to try and keep him here because we wanted him here.  But Jason and I decided that we would rather hurt, and to say goodbye to our little man rather than have him hurt just to stay around a little while longer.  Caleb wasn't happy at the hospital.  They were taking blood and waking him up for deep suctioning and all sorts of stupid things.  He wasn't sleeping, he wasn't smiling, he wasn't himself.

Caleb had a wonderful life.  It wasn't spent in hospitals and having tests done. (mind you we had plenty of Dr. appointments over this last year!) But he was so happy and touched everyone he came in contact with.  That's how I wanted him to remember his life and that's how I wanted to remember him.

We alerted family and everyone came.  Each person got to say goodbye in their own special way.  We had a few hours with him before he passed and it was so absolutely amazing.  We hugged him and kissed him, talked to him, and stroked his hair.  We cried, and cried.  Allison got to be there, and the Child Life Specialist helped talk to her and take her out of the room when she wanted.  She was only in there a few times, for just a few minutes at a time, but I'm so glad she got to say goodbye to her brother. We didn't have to unplug anything, but he soon started to slip away.

I couldn't believe it was happening but had/have no regrets about the decisions we made.  We wanted the most loving thing for our sweet boy and we felt that was what we were supposed to do.  God gave us so much grace and mercy.  He helped us do what we needed to for our precious son.

The outpouring of love and support has been absolutely astounding to us.  All the people praying for us the whole time in the hospital, all the texts, and calls, and facebook posts.  We are in awe.  I can't tell you how much we need all those and are so blessed by each and every person that has contacted us. We love you all and even though we haven't responded to every thing please know we cherish it all.

I don't know how to do life without my Caleb.  I don't really want to do life with out him.  But, I will.  I'm not looking forward to saying goodbye again on Monday.  But, I will.  It will be the last time on this earth that I will see him.

We prayed for his healing from the moment we got his diagnosis.  And while we really wanted to see it happen, Caleb still got his healing, just not in this life.  But now he is completely whole.  He can go be a boy! All the things he couldn't do here, he can now do. We are so happy for him, but will always be left with a huge hole in our hearts.

Visitation for Caleb will be at Dalton & Son Funeral Home on Sunday evening from 5-8pm. The address is 1550 N Stemons Frwy, Lewisville Tx

The Service will be at Gateway Church on Monday morning at 10am. The address is 700 Blessed Way Southlake, TX 76092

We are asking everyone to wear something green to the service to honor Caleb's journey with Mitochondrial Disease

Love,
Jessica

Letting Hope In

(I apologize I don't have any pictures to post! It's been so hectic)

It's been a little over two weeks since Caleb had his surgery and man has it been busy!! We got home on Sunday afternoon and Jason's mom was here to help us for a few days.  We took the evening just relaxing and being home with the girls again.  Man we missed them!

Monday was a chill day at home.  I went to work in the late morning for a few hours and later that afternoon our first meal was delivered.  We have been SO blessed by everyone who has brought a meal, and they have all be so wonderful!

Tuesday we had Dr. appointments.  The first one was with the MDA doctor at Children's Hospital.  She also happens to be a Neuromuscular specialist which we were pretty excited about.  We were warned that she doesn't have a very good bedside manner, so be prepared.  We gave her assistant the run down of Caleb's history and then she came in.  According to her records Caleb does not have the type of Mito we were told he has.  (not that it changes anything really, I mean he still has Mito we just don't know the specific mutation) This is the second time in the last few weeks that we were told something different than the specialist told us, and both of the other doctors had it in writing to show us! So we will have to ask the specialist for some clarification, somehow the lines got confused somewhere. 

The MDA doctor was very concerned about Caleb's decline in the last few months and seemed to indicate it might continue.  We were not thrilled with this news so the rest of the appointment was a little frustrating.  Not to mention we weren't planning on being there as long as we were.  We saw a PT, an OT, a social worker, and an MDA representative.  We didn't spend a whole lot of time with any of them as we are pretty set up with what we already have in place.  They each came in and asked us some questions and told us we are good! The MDA rep was helpful in that she told us what MDA would cover.  They did some lung tests, and want another one done and the Doctor also wants some heart testing done.  We are ok with getting a check and baseline to make sure everything is ok, so we will proceed with that.  MDA is a great resource to have and I'm going to see what they might have as far as a power chair for Caleb in the near future.  If they have one that will work it is "loaned" out to us for as long as we need it.  Pretty cool.  We will go back and see that Doctor in about 3 months.  

After that appointment I wasn't really sure what or how to post.  It was a little disheartening to say the least.  We had just been in the hospital for 10 days and Caleb had gotten pretty weak from not moving for that long.  Hearing the doctor say it was probably going to progress pretty quickly was not something we were prepared for.  But what a difference a few weeks make! (back to that in a few)

We then headed over to Scottish Rite to get his stitches removed and wrap up a few loose ends over there.  That went pretty well and we finally headed home later that afternoon.  Jason's mom left that night and we were so thankful for her help.

Wednesday Jason headed back to work and my mom came over to help.  Early Friday morning my neck went crazy and I was paralyzed in bed.  Jason had to stay home from work to take care of the kids and my mom came over to drive me to the Chiropractor.  Thank God for Chiros!! I'm guessing all the stress finally caught up with me, and it was no fun! (it's been over a week and I'm just now getting back to normal) Then Friday evening Caleb threw up.  We were pretty bummed but didn't think much of it.  Then after he went to bed he did it again.  Allison had gone over to Alyssa's house to spend the night and as we were cleaning up Caleb they called and said Allison was throwing up.  We were so excited!!! Yes, I know that's a little weird, but this meant that it was probably a stomach bug or food poisoning and not Caleb's normal throwing up!!! So Jason had to drive and go get her close to midnight.  She was pretty much ok by the time she got here and went to sleep.  Caleb still threw up 1-2 more times during the night but then he was fine the next day.  It really was just a short little something and we were so happy. :)

The next week went pretty well.  We had our 2 week follow up with the Surgeon and he said everything looked good.  We went to our second Mito Meet up this last Saturday and it was nice to see our friends.  It's funny how much has changed in 2 months.  I was so incredibly glad to have the support system of 2 ladies in particular from the group that I could ask questions and talk to.  Both of their kids have tubes and we got to see one of them while we were at Children's for testing the Tuesday before surgery.  I am so thankful for them, and grateful we went to that meeting 2 months ago! 

Caleb's energy has been picking up and he has even been wanting to get down out of his highchair.  (something he had no interest in doing for the last 2 weeks)  He is nicely protected there (we did have an incident with Jordyn grabbing his tube) and he didn't want to move.  But today he did great with his PT standing and even playing in Henry. (his Kid Walk, did I tell you we named it? Well we did) He also ate Kix cereal today.  Not a big milestone usually but at the very beginning of June he was choking quite regularly on them so I stopped giving them to him. He has been eating pretty well besides his feeds.  Oatmeal almost every morning, yogurt, applesauce, and PB & J, which are all of his favorites.

 Last night we had a little dance party with the Beibs.  Allison has a toothbrush that sings "Baby Baby" and she was dancing.  Jason was holding Caleb and dancing but Caleb wanted to get down.  So Jason held on to him and he started moving his legs and wiggling around.  We laughed and laughed and were so amazed at our incredible little guy.  He is such a fighter!!  I am so encouraged by all of this! (my comment above about a few weeks makes a difference.....) He is stronger than he was when we went into the hospital and I'm praying he continues on this upward incline.

I don't think we are where we need to be yet on calories, we see Dr. Adams next Monday, and I want to talk to them about Blenderized Diet at that point.  I started researching and joining facebook groups when we found out about the whole G-tube thing.  I found a few people talking about Blenderized Diets and I was very intrigued. I looking into it more and it is something I want to do, without a doubt! It totally fits into my personal beliefs and values about food and I am thrilled to be able to offer Caleb true nutrition. (Disclaimer: I know that some people can't do BD and formula is their only choice. I thank God for the life sustaining formula in those circumstances, but I have to try this for us and see if it works) It's not just putting what we eat for dinner in a blender and feeding it to Caleb in his tube.  It's a pretty set "meal" that is blended up daily and fed to him over the course of the day.  It has to encompass many different things, but keeping the volume low and calories high are the main tasks.  I did ask the dietitian about it before we left the hospital and she was thrilled and very excited to help us.  So I'm looking forward to figuring out what real foods we can feed Caleb.  

Which wasn't even an option, until today.  One thing that really helps the BD diet is a high powered blender. It is possible to do it without one, but so much easier with one.  A Vitamix or Blendtec are the two top brands that people use.  Today I got word that someone is providing us with a Blendtec blender!! I am so super excited.  Seriously.  This blender is about $450 new and makes the BD a reality for us.  I want to have a meal plan all lined up so the day we get it I can start making this boy some food!! We are so blessed!!

One last thing, our appointment on Monday will also be with the Speech Therapist we met with during our inpatient stay at SR. She wants to help us get a communication device for Caleb.  I am pretty thrilled about this idea and it could mean so much for Caleb!! She knows lots of places that will provide one and has lots of experience in this area.  I can't wait to see what she has in store.

Thank you again for all the meals, the prayers, the texts, the thoughts. This is such a hard road but we know God is with us and thanks to so many of you we are navigating it.  We still don't know exactly what the future holds for us but I keep trusting God is there with us.  

Love to you all,

Jessica