No Child Left Behind

Two of our children are not able to go on vacation with us this week.  We just couldn't leave without them!!

Wonder Woman

As I sat in the hospital room last Monday waiting (and waiting and waiting and waiting....You get the picture, right?) for Davin to be discharged, I was trying to wrap my head around what life would look like now that Davin has a g-tube.  I had several people in the hospital tell me how much "easier" it would be.  Hmm, the jury is still out on that one.

While we were waiting my sweet father-in-law called.  I had not talked to my in-laws since Davin went into the hospital.  Alan had been keeping them informed and up to date.  It was so nice to hear from them and they asked how Davin was doing.  At the end of the conversation, they told me that if we were free tomorrow night, they were having pizza night at their house and they would love it if we could come. 

Not much later, one of my beautiful daughters called to ask if I was going to go to our ministry tomorrow night....

Wait a minute.....I MUST ACCIDENTALLY HAVE PUT ON MY WONDER WOMAN BOOTS AND NOT EVEN REALIZED IT!!!!!! 

It is my own fault really.  I really like to have things under control.  I like things to not look hard.  So, it is my own fault that no one thought I might have a hard time with this.  Of course, when I explained that we needed some time to get into our new schedule, everyone understood.  Maybe I shouldn't seem so self-sufficient.  Nah, that probably isn't going to happen any time soon;-) 

Davin and I are adjusting to our new schedule beautifully.  Beautifully if we stay in the house.  And never go anywhere for more than a few hours. 

That is the part that is DRIVING ME CRAZY!!  How do we go out of the house for the day?  What if we want to go to the zoo??  (And we do!!)  How do we do that???  Do I pack up the giant pole and then set it up next to the giraffe cages and just act like everything is normal?  How do I get the water that is supposed to be lukewarm for his flushes before and after he eats?  How do I keep his food temperature controlled?? 

It is driving me crazy because I want this whole g-tube thing mastered.  Fine, Davin got a g-tube, but I don't want it to change LIFE.  Davin doesn't want to stay in this house every day.  We have got to find a way.  I am sure other people have found a way, but to be honest, I have never seen someone out and about with a giant pole behind them while they eat by tube.  Did I just not see them? 

We will figure it out. 

In the meantime, if you come visit us, chances are, you are going to see Davin's stomach.  Now, let me tell you the truth.  That was always true.  Davin has been a huge fan of his abs for years and years.  Proud is a good word.  Most first-time guests got the shirt-pull-up trick shortly after meeting Davin.  He is even quicker now.  Especially if he is all hooked up and eating.  My brother-in-law came over the other day and Davin hiked his shirt up so fast.  I explained to Davin  that he really should check with someone before doing that because not everyone is going to want to see incisions, etc.  He didn't seem to care.  The shirt flew up and he was PROUD.  And, that does this mama's heart good.  My boy is proud of that stupid little tube that rocked my world just a couple of weeks ago.  That boy can turn anything into a positive. 

I Did it For You

My mind has been so focused, so bogged down with Davin's feeding issues for such a long time.  Maybe I didn't realize how much it had consumed our lives.  I was in a battle.  It was me against Davin sometimes and other times, it felt like it was Davin and I against the world.  I begged and begged and pleaded and reasoned with God to restore Davin's eating.  Make him enjoy eating again.  Give back what was taken away.  I listened to a song talking about God restoring.  In the end, He did not choose to restore Davin's eating to what it was.  He chose to change our lives. 

It felt unfair.  We had put SO very much into this fight.  Didn't it count for something that we tried so hard and for so long? 

Along with praying for such huge things in my life, I am also one to pray for things that others might consider silly prayer requests....

I dislike merging into traffic.  Isn't that weird?  I know.  It is not that I don't like ever merging into traffic, but there are those spots where you know you almost always are merging into a ton of traffic and that makes me anxious.  Not over the top anxious or anything, but it is certainly something I think about and talk to God about. 

As I was driving home from the hospital on Monday night (at rush hour), I came to a spot where I knew there would be a bunch of traffic and I was going to have to merge.  I tried to think of a different route to take, but it seemed like any other route took us way out of the way and I was anxious to get Davin home.  I decided to go the way of the traffic, but I started praying.  I started by asking for my normal request.  Please give me enough space to merge.  No, God, this time I need a huge space.  Please give me a huge space so I don't have to worry about getting into the traffic. I was tired from lack of sleep.  I was discouraged by all that had been taken from us in the past week.  Please just give me a huge space to merge into the traffic.  I felt like I was asking for a lot.  It was rush hour. 

We got around the bend and I looked to my left and there was not. one. single. car.  I had a huge space to merge onto the road that would lead me home.  I thanked God.  Tears started to fill my eyes.  I told God that He really does care about the details of my life even when it maybe hasn't felt like it. 

Then, I felt it.....

He whispered to my heart.....

"I did it for you."

That is when I knew that this resolution to Davin's feeding is not just for Davin.  God knew my struggle, my worry, my panic, my pain.  He did it for me, too.  He wanted to take the burden away and let Davin and I enjoy things together again.  He. did. it. for. me. 

It is still hard for me to even accept that.  I want to scream, "But, I didn't want you to do that!!  I wanted you to heal him.  Make him able to eat regular food again!!"  But God....knowing what I need better than I know what I need, chose to prepare my boy mentally for this change.  Prepare him so much that the first time the nurse hooked his tube up, he was squealing because he was so excited to get to eat.  That does a mama's heart good to see her boy excited to eat.  Even if he is excited about eating a different way. 

I am humbled by God's words to me.  I was so busy fighting and mourning that He needed to give me a huge spot to merge into traffic so I would pay attention to His voice. 

The Good

Davin is home and we are trying to settle into a routine.  Yesterday was our first full day at home and it seemed like we were getting the hang of this new normal.  After spitting up a bit last night (and wondering if his feedings were too fast or too close together), and then being awake for quite some time in the night and me having to change sheets at 2 am, I am feeling less optimistic.  Besides that, I look around my house and see how much of a mess everything is and today seems a little overwhelming.  I know that sleep makes such a difference in how I react to things, so I will try to remember that we are still recovering from being in the hospital for a week with very little sleep. (This picture is when Davin had an NG tube in before the surgery.)

Since the initial blow of Davin not being safe to eat by mouth anymore to now, I have been trying to look for the positives.  That is kind of my thing.  I need some time to adjust and wrap my head around something.  Then, I try to put a positive spin on things.  I want to look for the good in a situation.

*I am actually blogging WHILE Davin is eating.  That is crazy.  When feeding Davin by mouth, it took my full attention.  In some ways it was similar to feeding a baby still since he relied on me for every part of his feeding.

*I am not in a constant panic about Davin aspirating.  Every feeding was not unorganized, but there were some moments that were downright scary.

*Davin doesn't have to chew his medicine anymore.  He has always hated taking medicine and this is a huge bonus for him:-)

*Eventually, other people will be able to feed Davin and lately, it was just Alan, Bethany and I who were able to feed him.  (Cheney could, too, but he is not here anymore:-)

*Eating is not messy anymore.  When eating by mouth, Davin would use a large bath towel to keep his clothes neat while eating.  Think of the laundry that it will save me from doing!

I Fought the Tube and the Tube Won

I imagine that a big part of the reason I have not blogged much lately is this post.  I rarely like to blog about discouraging things.  I like to wait until the storm is over before I write.  I guess, in a sense, the storm is over.  Just not the way I had envisioned it.

This has been on my heart and constantly on my mind for two and a half years.  It all started shortly before Davin's 18th birthday.  The boy who ate so much and so happily began to refuse to eat.  Shortly after that, his eating became incredibly unorganized and he was coughing repeatedly during his meals.  He would not eat any kind of food and we went to only feeding him Ensure.  He was maintaining his weight, but eating became a huge chore.  For Davin and for me.  It took a long time to feed him each time and there were often tears.  Most of the time, they were mine. 

I prayed.  I asked God to restore Davin's eating to what it once was.  I asked others to pray.  They did. 

Things got better.  Things got worse.  Things got better.  Things got worse. 

We spent a year and a half living in upstate NY and things were okay.  Eating was not great, but it was okay most of the time.  Davin started to be a little bit more interested in eating again and began eating applesauce and yogurt on a regular basis.  I felt like we were making a come back. 

I prayed.  I pleaded.  Please take this from Davin.  Let him enjoy eating like he used to. 

By the time we moved to NJ, I wasn't comfortable with him being fed at school.  I knew that although his school in NY fed him with no issues, the school in NJ would have big problems with his eating.  They had problems with his eating when he had no problems eating.  So, I made the decision at the beginning of the year to pick Davin up and feed him myself every single day.  I figured that would give me time to get some things figured out for Davin.  He had a hip out of socket.  His asthma had gotten much more involved.  He needed a swallow study.  It was time to ask for some help.  As much as I hated to ask for it.....

We got Davin taken care of physically and figured out that he needed more asthma medicine.  I know that all of these things work together, so was hoping that the feeding would follow suit. 

And sometimes it did.  And sometimes it didn't.  Each day was different.   Sometimes weeks were different. 

Recently there were some weeks where my nerves literally did not have time to recover before we headed into another feeding.  Davin was refusing to eat and I needed him to get the calories.  I was doing everything I could possibly think of to help him, but he would choke and gag and it. was. awful.  Yet, I still didn't want to give up.  There was still a chance.

Many months ago, I started asking God for big stuff.  I knew I was asking for a lot for Davin to be restored to what he was (feeding-wise) and I knew God could do it.  I heard a preacher say to ask God for the big things!  Watch Him move!  I asked and I asked and I asked.  I believed and I believed. 

Tuesday was Davin's swallow study (why it took so long is a rather long and boring story).  It was time.  I needed to know what we should do after this and I knew in my heart that it would shock me if they did not recommend Davin getting a g-tube. 

Do you know how you can know something in your head, but your heart is just not there yet? 

Davin was cooperative and helpful through the swallow study.  It was an accurate reflection of what feeding goes like.  Davin aspirated to some level on every single thing they gave him at some point.  The Doctor administering the test actually gasped. 

In my wildest dreams, this scenario did not come up....

"Well, we have a real situation here now.  We can't let you go home with no safe way to feed Davin."

And then things just came crashing down.  I sobbed.  Davin looked at me wondering why I was so upset.  I so didn't want him to think that he had done something wrong. 

Our pulmonologist was called and came down to radiology to talk with us.  Again, crying.  I. Was. Crushed.  I. Was. Devastated.  The. Fight. Was. Over.  Our sweet, sweet pulmonologist (whom I just love) just softly whispered that she was so very sorry.  She was so very sorry.  I felt raw.  She waited for me to compose myself and shared our options.  They were pretty much the same. 

1. Be admitted into the hospital immediately and have the surgery to place a g-tube. 

2. Get an NG tube (down his nose) and go home to wrap your head around everything.  Come back, be admitted into the hospital and have the surgery to place a g-tube. 

I told her it seemed like they both ended at the same place. She nodded.  It seemed silly to go home when we were going to think about it and dread it.   I asked if I could call my husband and cancel Davin's therapy for the next days.  We made the decision to be admitted. 

The doctor told me that we would be in the hospital through the end of the week.  What????  It was Tuesday now.  The end of the week? 

Davin ended up having an NG tube placed while tests were being run and his surgery was scheduled.  On Friday Davin was wheeled away on a stretcher (while he was shouting and hollering and waving his arms all excited for some reason;-) and he had surgery.  Davin now sports a g-tube out of his adorable belly.  He was brave.  He is relieved. He is.  I can see it.  The huge burden is lifted off of his little shoulders. 

I am trying to follow Davin's lead.  I am trying to look for the positives.  There are many and I will share them a bit later. 

I asked God to do a big thing.  He said no.  I don't understand that.  I am a little disappointed and somewhat upset to be honest. 

Now we are on to Plan B.  We are ready.  After a week in the hospital, we are heading home to conquer this and incorporate it into our lives and find a new normal. 

Finally Able to Write This Post

I had been wanting to write all along about what it feels like when your child is getting married.  There are so many emotions tugging on your heart.  It overwhelmed me to be honest.  Every time I tried to think of what to write along the way, it was too emotional...too raw.  So often for me, I can write after the fact, not while I am going through it.  I am sure most parents roll with things a little better than I do, but for me, big life changes are such an intense process.....

I can tell you that I adore my daughter-in-law.  Adore her.  She is the perfect fit for my boy and that Cheney Boy just shines with happiness these days.  They truly honored each other and honored God throughout their dating and engagement relationship.  I am so very proud of both of them. 

I really was totally fine through 2012.  Cheney and Renee were engaged for most of the year and the wedding seemed so exciting and so far away at the same time.  I threw a shower for my soon to be daughter-in-law at my house in early January and it was such a special time.  I loved doing that and Renee was the perfect guest of honor.  I was blessed to be able to share some things with her during a devotional and it was a special time. 

Later in January, things seemed so real.  The wedding was less than six months away and I was having a hard time breathing.  I was panicked.  I wasn't sure I could make it through the wedding without sobbing.  What in the world?  This was not my first child to get married.  I have also been through the planning of a wedding that I had no peace about whatsoever and this was certainly not the case.  I truly knew that Renee was the one for Cheney.  Frankly, she was even the one for me.  I was so excited to add her to our family, but I could not stop struggling with panic. 

God is always so gracious to me.  He gives me time.  He gives me more time.  Sometimes, when time just doesn't enable me to get a hold of myself and get myself where I need to be, He intervenes in a bigger way.  This time, it was in my face and it was clear. 

On Cheney's birthday, I was really struggling.  It was his last birthday as a single person and I hadn't been with him for his birthday for four years.  Would I ever be with him on his birthday again?  I talked to Cheney that day and told him that next year I was coming to visit him on his birthday because I hadn't  been with him on his birthday in so long.  (He had no idea what was going on in my head.)  Cheney explained that he would be married on his next birthday and that wouldn't work out.  I was about to flip. my. lid!!  Did he not realize that his birthday is a very special day for me??  Things in my head were spinning out of control....

Then, God intervened.  He had given me time.  He had been gracious.  Now, Heather, face the facts.  God led me to be reminded that a blogger I had followed in the past, (but amazingly enough saw some information on her on Cheney's birthday), had lost one of her twins on my son's birthday.  The day that I was celebrating my son's life, they were remembering her death.  I remembered that when Cheney was a baby, I was sure God was going to take him from me.  (God was really preparing my heart for Davin's diagnosis) God didn't.  If I had lost Cheney, I would have wailed and mourned that I would never get to see him graduate, never get to see him play soccer, never get to see him get married one day...... 

I got it, God. 

What was I thinking?  How long did I need to be upset that my son was having what I always dreamed and prayed for him to have?  Only until January 30th.  My attitude was adjusted. 

I have told you in the past and it is so true.  I go kicking and screaming for the big things. 

(Renee, I was so hesitant to write this because I never want you to feel that I am less than thrilled to have you in my life and family.  I am going to assume one day you will have a little boy with a face that looks a lot like my little boy looked (because that seems to run in the family;-) and it will all make so much more sense.  I could not be happier with Cheney Boy's choice of a wife and neither could he!!)

Crushed

Last Monday was the big day!!!  Davin was heading back to Handi-camp for the third year in a row!  I love this camp!  Davin has the opportunity to go away for five days and four nights and experience so many of the things that his older sisters and brother got to experience when they went to camp.  He goes boating and plays games outside, he learns songs and Bible stories.  I had spent all day Saturday packing everything that he needed and checking off my list.  I wrote a note for his counselor and explained some additional things.  Davin was awake bright and early to head off for a fun week!!

We got to camp and got all registered.  We bought Davin's camp t-shirt for this year.  Davin went to the nurse for her to check him and she thought he looked flushed.  Well, to be honest, it was about 107 degrees in the dining hall, so who wouldn't be flushed?  She decided to take his temperature.  101.2....  What????  The nurse took it again.  Maybe it was a mistake.  Nope.  Davin had a fever. 

The decision was made that Davin could not stay at camp.  Davin at this point was obviously not feeling great.  I kept thinking that I was going to have to try to cram a screaming boy into the car and that my heart might break.  Davin's suitcases were already in his cabin, so we had to wait for them to come.  As different camp staff kept talking to us and telling us that he could come if he was fever free for 24 hours, I just kept thinking that I needed to get out of camp before I lost it!!  Finally Davin's bags came and we hurried into the car with a quick hug from our new counselor friend and we were off. 

I. thought. my. heart. would. break.  I was so sad for my boy.  Maybe what I didn't expect was that I was so. sad. for. me.  Does that make me a bad mom?  Davin wasn't too upset because he really wasn't feeling great at that point.  I could not stop my tears, though.  I had been thinking and thinking about what I would do with my five days.  Would I do something fun?  Would I do house projects?  Alan and I would go out to dinner every night and I would have no schedule.  Davin would be well taken care of at camp and I would not have to worry about feeding anyone or lifting anyone for five days!  I was crushed.  I was sad.  I needed a break. 

We took Davin's temperature constantly for the next day.  Then, we made the decision on Tuesday night that if nothing changed by the morning, we would make the hour long drive on Wednesday morning and Davin could enjoy the rest of camp!  I hadn't even taken Davin's bags our of the car.  He was all set...again.  Davin was pumped on Wednesday morning and feeling better.  I took his temp at 6 am again and all was good.  We drove the hour, brought in our bags, handed the nurse our meds and she took his temp.  It was up again.  Are you kidding me???  Davin was obviously feeling better and the temp was lower.  Maybe it was a virus and was just working its way out.  We made the decision to have Davin stay at camp and see how things went.  Davin was so excited and I drove away as Davin and his counselor walked down the path to go play Frisbee golf.  A couple of days of camp was a lot better than no days at camp!!!

I got home, changed my clothes, went to work and as soon as I got started on my work, I got the phone call from camp.  Davin's temp was back up a bit and he wouldn't drink anything.  If he wouldn't drink, they could not keep him there.  I left work and drove back to camp to pick up my boy.  This time, I was more prepared.  As Davin and I drove away, we were thankful that Davin had a couple of hours at camp.

To be honest, it was not just a hard week, but it has been a hard year.  I have found myself feeling like I need a break and not having much opportunity to have a break.  The Mom in me feels so guilty about this and yet I know that most people are not still feeding and caring for their 20 year-olds the way that I am.  Alan thinks I need someone to come in and help me, but that doesn't feel right, either. 

It is so hard for me to blog when things are not going well.  I tend to wait until the crisis has passed and that is why you haven't heard from me much.  I hate to be a discouragement to anyone and at the same time, others are in the same boat and the truth is that sometimes being a caretaker is hard.  Sometimes you cry.  Sometimes you want a day off and sometimes you feel guilty.  Sometimes your boy doesn't get to go to camp and you have to figure out a way to move on and make a back up plan. 

I am thankful for a husband who is concerned for my well-being as well as Davin's.   I am also thankful for a daughter who is close-by that does give me a break and lets her brother have fun sleepovers at her apartment. 

My Favorite Day in 1987

I was a hormonal mess.  I didn't realize it at the time, but several people close to me let me know the truth after all was said and done.  (Thank you Mom and Alan.)

I was so excited that I had turned 20 a few months before.  It seemed so much more appropriate to have two babies if you were 20 instead of still a teenager.

I left the apartment no less than four times dragging a huge suitcase with me and telling Alan that I was really in labor and it was so nice that I was having to go to the hospital all by myself.  I would eventually come back into the apartment.

Alan could set me off at the drop of a hat.  One day he said something that hit me the wrong way while I was folding some of his laundry and I immediately picked up the basket of his laundry and threw it on the back lawn.  We lived in base housing where all of our back yards were together.  Lovely.

Even though my head knew that I wanted my children close in age and that I adored being a mom, I could hardly breathe at times just thinking about life not being just me and Ashleigh anymore.  Every time people asked me if I was ready to have the baby, I said "not yet".  I treasured every single day with my first baby girl and me.

We had a doctor who had recently served a tour in the peace corps.  He had delivered babies in less than traditional situations.  When he asked how long it took us to get to the hospital, and we answered that it was 40 minutes when driving 70 mph, he told us to wear our seatbelts:-)

In spite of the rough days leading up to June 20th, 1987, the actual day was my very favorite of all of 1987.  After four short hours of labor and the interesting experience of sharing a labor room with a teenager in labor (which I clearly was NOT; I was 20;-), we welcomed our second baby girl.  She had the tiniest features and a slightly crooked chin.  She was perfect.  Suddenly my fears about sharing my first baby girl faded away. 

Bethany Alyssa has been such a blessing to our family ever since.  (Her chin even straightened out;-)  She is such a beautiful person inside and out.  She is loyal and feels deeply.  I am so blessed to be called "Bethany's Mom". 

By the way, had I been nicer during my pregnancy, I may have had a Cassandra Brooke. 

There's a New Mrs. Hester in Town!!!

On Saturday our boy made some serious promises to his love Renee.  It was a beautiful celebration and we are so proud of them both and excited to witness the next chapter in their lives.  Here are some pictures for now.  (I borrowed these pictures from facebook.) 

Daddy Daughter Dates

One of the things I loved to do with my Dad when I was little was to drive with him to the dump.  My Dad had an old truck and we drove on lots of dirt roads.  I would bounce all over!!  I can remember being asked if I wanted to go and of course, saying YES!  I always liked to be around my Dad.  I don't remember him saying anything especially profound or anything like that, but I loved to be in his presence.  I loved to hold his big hand with my little one.  I always felt so safe when he was around. 

It has been almost ten years since my Dad suffered a traumatic brain injury and very nearly lost his life.  Although he lived, many things changed for him.  When my family moved to NJ to be close to our parents, I wanted to help my Mom and Dad in a practical way.  My sister and I both decided to go to my parents house once a week so my Mom could get out of the house for a little bit.  On our day, we would sit with my Dad, make him lunch, try to keep up with him while he walked down the hallway (He never quite got the idea he was supposed to wait for us;-) and just make sure he was safe.  It was such a pleasure to be able to help in a tangible way. 

Those dates once a week started to morph slowly.  Since my Dad lost so much when he had the TBI, his confidence was not great.  He didn't feel comfortable going to a restaurant and trying to figure out what to order.  At that time, he could not see very well at times.  One day, I specifically asked him if he wanted to go to McDonald's and get a quarter pounder.  Very specific.  He went.  It was short.  Gradually, we were going out to eat to other places and he was choosing his meal, although I would read some things on the menu out loud for him. 

Now, nearly ten years later, we have a pretty firm date once a week.  We both look forward to it.  I leave all of my errands for the week for that day and he takes me out to lunch.  What an unexpected blessing from such a difficult time.  I doubt that I ever would have thought to spend one day a week with my Dad, but how very blessed I am for the time that we have spent together. 

Yesterday was our day together.  It might have been one of my favorites.  We both were very excited about the errands that we were running that day and ate at one of our favorite pizza places.  We came home, and I put Columbo on for Dad just like usual.  I fed Davin while he watched.  When he was done watching, he came over and sat down where Alan and I were and we talked about the new project I would like to do with my backyard this year.  I saw so many glimpses of my "same old Dad from before the brain injury" yesterday.  Not that I mind the changes.  They are what they are and I am grateful to have him, but it always makes my heart soar when I see the Dad he always was.