Wednesday, April 23, 2014

Easter Brought Hope....

On Easter Sunday one of my good friends sent me a text message after church just letting me know that she was thinking of me.  I think that she realized that Easter might be hard for us because Trevin had his first big seizure on Easter.  It was so sweet for her to even put that all together.  I am very fortunate that Easter, even that Easter Sunday, has always been a day of great hope.  I have never associated Easter with a bad feeling, or sadness.  Sadness that it took suffering, great suffering, from the Savior to save us all, but never sadness for myself.  I actually thought it so fitting that our world be turned upside down on such a hopeful day.  ALL was overcome on that day.   All suffering, sadness, pain, sin, physical and spiritual death, everything.  He saved us from everything, and now all I have to do is my part.  If anything, having such a horrible event in our lives fall on that most hopeful day, has made it more of a reality to us.  We know it is true.  It has been etched in our hearts.
I was actually really excited about the entire weekend of Easter.  We had two egg hunts planned, one for the little kids at our house and one for the older kids at my brother in laws house.  We also had one of Halea's scholarship banquets to attend.  It was going to be a really busy day and Sunday we were doing the Passover Dinner, like in the Old Testament.  I was hoping being busy would be good for me.  Last year, Tates was here for the egg hunt and Easter.  Everyone was here.  Lance's sister and her husband that live in St. George even came up for it.  It was just a really nice day.  Tatum even got to go out and sit on the porch swing.  Easter was just another one of the firsts without her.  We kept everything really simple this year.  I was able to stuff the eggs the night before, made most of the dinner the night before so the morning went really smooth and low stress.  We ate when everyone arrived, then off to the egg hunt.  We had four little nephews come and Hilary.  All five and under!  What great, easy ages to please.
Hilary was not about to stand in a picture with the boys!?
    Can you tell which boys are brothers? Apparently we need to get these kids together more often.

 Then we just hung out and visited.  One of the families we don't see super often stayed for quite awhile after everyone else left.  Lance and I had a list a mile long of things that we should have been doing, (and I'm sure they did too)  but it was so fun to visit with them.  While Tatum was sick I learned very quickly that a lot of things just don't matter.  People and relationships and friendships matter.  I have tried hard to maintain that pattern of thought.  I try to not get caught up on the "things" in life.  I am so not perfect at it, but I am trying to improve and pause a lot more.  I was so grateful that they stayed and visited.  It was one of the highlights of my day.  At one point in the day my nephew's wife and I were peering out the window watching the kids playing in the back yard.  She said to me, "it's so hard to watch Hilary by herself, without Tatum."  She nailed it.  I was thankful for her words.  I know that some people see it and think it, but it's too hard to say.  It is nice for someone else to say it.  It is killing me every day to think of her growing up without her side kick.  The other day I opened our iPad and one of the kids had changed the wallpaper picture to a picture of Tatum that I hadn't seen in awhile.  I showed it to Hilary and she said, "Aww." and sighed this sad sigh.  I told her that I missed her a lot, and she nodded and gave me a hug.

Lance and I met Halea in Salt Lake for the scholarship banquet, another 500.00 to add to her pot of college money.  It was a nice program and a yummy dinner.  We sat with a few other kids from Lehi, so that was nice.  Then we rushed home and grabbed the other kids and went up to the big kids night egg hunt.  It was really fun.  Lance's sister that died a year and a half ago used to organize it with her daughter, so now her daughter does it.  It feels really important to keep these traditions alive.  It helps us to solidify those fond memories of loved ones.  I still really miss my sister-in-law.  My kids still call their house "aunt Becky's".  She was always such a good aunt to our kids.  She truly loved them, so I know that she is taking care of Trevin and Tatum.

Sacrament meeting at church was nice.  All of the talks were sweet and true testaments of our Savior.  After sacrament I was walking to my class when someone came up to me in the hall and asked if I would go and help in the nursery.  A nursery full of kids that are Tatum's age.  I know that people don't keep track of how old Tatum would be, so I don't blame anyone, but it is still really hard for me to see and imagine what it would be like if she was still here.  So in I went to nursery.  When I got there I realized why she had asked me to help.  There were several kids crying.   There were several adults, but there were enough kids crying that it still seemed chaotic.  I took one of the criers and slowly he calmed down and then started participating.  Soon everyone was pretty calm, so after a half hour or so I excused myself.  There are two little girls in there that were born within weeks of Tatum.  They are both so adorable.  I don't even think of Tatum walking or talking or doing the things that they are doing because I know that she wouldn't be doing those things.  I don't want that regular two year old, I just want Tatum.  I wish that these feeling would subside, but they just seem to be getting harder and worse.  My heart literally just aches for her.

When I got home I started getting prepared for our Passover dinner.  My niece and her husband were coming, so I wanted to be prepared.  I tried to set the table pretty and then I read over the old testament scriptures that cover the Passover and its symbolism.

On Wednesday before Easter we had our Relief Society class.  The teacher prepared the passover dinner for all of us.  We studied the scriptures and then studied those last few days before Christ's Atonement and crucifixion.  It was so emotional.  I love the symbolism of the dinner items.  They first eat the bitter herbs that represented their bondage, and sin.  Our teacher told us to watch the person next to us as we ate them.   That face you make when you eat those disgusting herbs truly is a great representation of sin!  Then you immediately want the next course, the unleavened bread. (we used pita bread for convenience)  As you put the bread into your mouth it absorbs a lot of the taste, but not all.  The bread represents repentance (our part).  Then the last part of the meal, the meat.  The first passover dinners used lamb.  They were to sacrifice the lamb, paint the blood over the door for protection.  The lamb was to represent the Savior, obviously.  As you eat the meat, it truly takes away any remnants of the bitter herbs that were left in your mouth.  It is such a great visual of what the Savior truly does for us.  He does what  no one else can do.  At the last supper the Savior changes the passover ordinance to the sacrament that we take to this day.  I had never put that last part together.  At our Wednesday class we talked about that last supper before Christ was taken away.  It says in the scriptures that he "desired" to eat it with his disciples.  He knew what was about to happen to him, and yet he still desired to do it because He loved all of us that much.  He knew it was the only way.  It is truly a gift that I can never repay.  I will see Trevin and Tatum and Aunt Becky and my sister and my grandpa and countless other friends and relatives, because of this selfless act.  How could I ever be thankful enough for such hope.  I feel an even deeper appreciation for what it all means after this past week.  

I have seen several small miracles in the past few weeks.  There were a few things that were a worry to me going into our trip with Halea.  While we were on our trip they all worked out.  No one even knew I was worried about these things, but my Heavenly Father did.  I had been praying about them, and miraculously they got fixed.  Not coincidences.  

Our trip with Halea was fantastic.  I may try and write about it in the next few days.  There were some really inspiring things that we were able to see.  She has received notice of several scholarships that she has won, she was told today that she is in the top 25 graduating students so she gets to "audition" to speak at her graduation.  Then she found out today that she is also in the Prom royalty!  We were laughing our heads off because it isn't really her thing and she wouldn't consider herself one of the "popular" kids.  I am so glad that she has had such a great senior year.  She has worked hard on her grades and other accomplishments, so I am happy to see her recognized for that.    Here is a sampling of her senior pictures that we just had taken.  They turned out so beautiful.  

Hayden has been playing tennis and loving it.  I think that he really likes the "tan" he's getting.  I have had so much fun watching him play.  I LOVE tennis!  The other day he was playing a kid from one of the more affluent schools.  The other kid was killing him, but when that kid would miss a shot he would still get so mad.  Hayden on the other hand had such a good attitude.  His body language was springy and happy even though he was struggling.   Even when the other kid would make a good shot Hayden would clap and tell him, "good shot" or "good serve".  I was teary watching him.  I was so proud to be his mom.  (he never lets me take pictures of him, so no photo shown)
Heidi had an assignment to find an insect and keep it alive in a container for a month!! Thanks a lot science teacher.  Well, it has consumed her and Holden's life for the past week.  She took several days to find the right kind of insect.  She finally settled on a snail.  Then it took several days for her and Holden to find one.   They found the smallest snail I have ever seen.  It is adorable, as far as snails go.  She is doing good in school and blossoming into a beautiful person.

Holden is wearing one of the trinkets that he won at the night egg hunt.  It is fitting.  He is quite a character.  He announced at 7:30 pm last night that his county report was due, the next day!  OK, I should have been a little more on top of things, but really no warning!!  He worked hard all night and got the bare minimum done.  I hope that this is not a foreshadowing of things to come.  He is such a quiet little light in our home.  He is genuinely sweet and kind hearted.  Hopefully we can help him channel his energy to the good things in life.  If so he will do great things.

Then there is this girl.  My good friend got her these glasses for her birthday.  She had so much fun in the restaurant with them.  She is the light of our lives.  I don't know what I would do without her.  
 Here they are upside down....

right side up....
She has changed my perspective on life, helped me look through different glasses.  I love her.  She has helped heal my sad heart.  She has truly kept the sunshine in our family.  Forever grateful and full of hope.

Thursday, April 17, 2014

Someone Turned 4....

Well, back date this post to April 6, 2014.  I feel like my life spun out of control, right about Hilary's birthday.  We were frantically planning Halea's senior trip and poor Hilary had her birthday land right in the middle of that storm.  Not to mention that her birthdays are forever going to be hard for me.

I can't stand that my baby here, is 4.  It just isn't computing in my mind.   I love how cute and independent she is, but it is also really hard for me, because we should also have an adorable sweet toddler.  The other thing that has really bothered me is that she is now in a year of her life that Tatum will never be.  I didn't realize how hard this would be for me.  Last year my world was still somewhat in tact, right now it feels far from it.

We tried to make the entire day a celebration for her.  We let her open a little present first thing in the morning and she liked that.  We had blown up some balloons and put it out on the counter for her when she woke up. I decided that I wanted to actually "make" the cake from scratch, not a box cake.  Dumb!  It looked great and smelled great, until I tried to get the cakes out of the round pans to put on the pretty cake plate.  Never try a new cake recipe on the day of the birthday.  Lesson learned.  The cakes just crumbled as I was taking them out of the pans.  I quickly made a box cake:)  So much for trying to be that mom.
Then Halea gave her a mani and a pedi.

 We went to church and when we got home we had some lunch.
I started frosting the cake and of course, the cake started crumbing while I was pulling the frosting across the cake!!  I just couldn't win.  I finally got it somewhat frosted and sort of decorated.  This was by far my ugliest cake.  She said that she wanted pink and purple, I got close.  Luckily she is four and could care less.

That night my niece and her husband came over and our nephew who is here for a month from California came over.
 We had cake and ice cream.  It was really a fun, low key night.  I just don't like the constant pervasive thoughts of being horrified that these two little girls are not going to grow up together.  It leaves my heart so hallow and broken.

The next few days were spent trying to get everything ready to leave on our big senior trip for Halea.  There is a lot of anxiety for me whenever I fly.  The fact that Lance and Halea were both going to be on the airplane was really freaking me out.  What would happen to the other kids if our plane goes down?  Who could raise them?  How would they recover from that?  This was a constant loop that ran until we landed in New York.
The night before we left the hospital ER called.  There was a little 5 month old that came to the ER that died. My friend that I work with responded to the call because we were leaving early the next morning and so I had already given her our work bag.  I talked to her later and it was such a sad story.  The parents were out of town and the grandma was in charge.  My heart was so sick for that family.  The grandma, who could possibly never forgive herself.   The parents who were not able to be there to hold their sweet baby for his last moments here on earth.  Devastating.  A few days into our trip, we found out that the father of that sweet baby was Halea's all time favorite High School teacher.  Literally, this man inspired Halea to be a better student.  He sparked her love for American History.  He confirmed that there are still teachers out there that care and go above and beyond their "requirements".  She had him her sophomore year, and she still refers to him and his teachings.  I could go on and on about how he changed her.  To find out that it was him and his wife that lost their sweet baby was awful.  Such a reminder of how fragile all of our lives are.  We just don't know what is around the corner.  I am so grateful for a Heavenly Father that has restored the truth to the earth, that families are forever, that we are eternal beings, that this is not the end.  Because of our Savior, we will all overcome death and live again.  What hope this knowledge gives.  This does not remove the sadness, but it does lend comfort and refuge to our broken hearts.

Friday, April 4, 2014

20 Years...

Today is the 20 year anniversary of the beginning of our life with Alpers Syndrome.  We didn't have a name for the scary disease that slowly took Trevin from us until about 5 years ago.  Twenty years ago, we just knew that our lives would never be the same.
On Saturday April 2nd, 1994 we spent the night playing cards with Lance's nephew and his wife.  Trevin played with us until about 8:30 pm and then we put him to bed.
 At around 10:00 he woke up crying.  We went to his room to check on him and he had thrown up in his bed.  It was the most throw up I had ever seen.  I couldn't believe that it had all come from such a little person.  Sorry to be so graphic, but it was a little alarming.  We took him to the bathroom and gave him a bath.  I noticed that he was really lethargic, but I chalked it up to all of the throwing up.  Who would feel like holding up their head after all that.  We cleaned up his bed and gave him some drinks and then snuggled him back in bed.  If I remember correctly our friends left around midnight and Lance and I headed off to bed.
At around 2:30 or 3:00am I heard something that woke me up with a start.  I sat straight up in bed and went straight to Trevin's room, because I was sure that the noise had come from his room.  Now, at this time we were living in a really old house in Provo.  One of those houses with super thick walls.  Even if Trevin had made a noise, I would not have heard him.  When I got to his room I turned on a light and went to his crib.  His eyes were open and he was looking at me and he was convulsing and could not make any noise.  I scooped him up and ran into our bedroom.  I flipped on the light and laid him at the end of our bed so that Lance could see what he was doing.  I said, "what is he doing?"  Neither of us knew.  I ran to our phone in the kitchen, pulled out our phone book and looked up my pediatricians phone number.  I dialed the number that I thought was his office.  On the other end I heard a mans voice, that I immediately recognized as my pediatrician.  (upon later investigation I realized that my Pediatrician had his home phone # listed right under his office #.  Most doctors never listed their home phone numbers so that they didn't have crazy patients accidentally, or on purpose, calling them at home!)   I was horrified and worried and embarrassed that I woke him up.  I began apologizing.  He quickly said, "what is the matter?"  I explained that my baby was convulsing.  He told me to take him to the emergency room immediately, he was the doctor on call for the night and so they would call him if they needed him.  I thanked him and Lance and I quickly pulled on some clothes (I think) and buckled Trevin in his car seat, while I sat in the back seat with him, holding his hand.  (I was so safety conscious that I buckled him in his seat!  Why I didn't just hold him I'll never know)
Luckily we only lived about 6 or 7 blocks from the hospital.  We walked through the emergency room doors and I told the people standing there that I didn't know what was happening but that my baby was convulsing.  They brought us to a room and laid Trevin down on a big gurney like bed.  They immediately started asking us questions and trying to get IV access.  Because he had been seizing for awhile, his veins were really constricted.  They didn't have us stay in the room for very long.  Shortly after the nurses started working on Trevin they escorted us to a "waiting" room.  I now know that it is the "bad news" room.  It seemed like an eternity passed.  They had called our pediatrician and he came in after a very long while to talk to us.  (We found out later that our Pediatricians car had broken down on the way to the hospital.  I can't remember how he ended up getting to the hospital, but we were so grateful to have him there with us)   He told us that they didn't know why Trevin was convulsing, and that they had a really hard time getting an IV and so they had to make an incision in his little ankle and they did a needle straight into the bone in his leg  to get a good vein so they could administer some seizure medications to him.  They had to give him so much medication that he was no longer able to breathe on his own.  They had intubated him.  We were told that he was being admitted and transferred up to the Pediatrics floor.  A few nurses would walk up with us and help get us settled in our room and then we could begin investigating what was happening to our sweet boy.
When we were reunited with Trevin I was shocked.  He had a big tube down his throat and a nurse was standing there with something that looked like a huge sized bulb syringe.  I quickly realized that he was breathing for our son until we could get up to our room.  He was rhythmically pushing air into Trevins lungs until we got to a room where he could be hooked up to a ventilator.  I felt like we were in a medical show on TV.  That is the only place I had seen such a thing.  Only this was now real life.  Our life.
We got to a room and started to get settled.  At this point, we obviously had no idea the magnitude of what had just happened to Trevin.  This was the morning of Easter Sunday and General Conference weekend for our church.  We had just listened to the leaders of our church on Saturday speak of the amazing truths of the gospel of Jesus Christ.  We were so filled with hope and faith that all would be well.
As I sat in the rocking chair next to Trevin's bed in that hospital room I started thinking about the events of the morning.  I realized that we had already witnessed a miracle.  I knew that an angel had woken me from a dead sleep just hours before.  Trevin could not make a sound when I found him and I suspect that he had been lying there helpless like that for some time.  Who knows what would have happened to him if I had slept for another 4 or 5 hours.  We probably would have just found him dead.  I don't think that his little body could have sustained seizing for much longer when I found him.  I was so grateful at that moment.
When our doctor came in to brief us on Trevins prognosis, he was very honest with us.  He said that things looked grim and that they had no idea what they were up against.  Until they knew that we wouldn't have too many answers or know exactly how to proceed.
They began running test after test.  They interviewed us several times about things that he had eaten, chemicals around the house, our medical history, family history, etc.  We brought a picture of Trevin in to his room so that all of the nurses could see his beautiful blue sparkling eyes.  They all fell in love with him and took such good care of him.
 After three days Trevin was able to breathe on his own again and we were able to take him off of the ventilator.    After 11 long days in the hospital we walked out with a different child.  Trevin could no longer hold up his head, he couldn't eat very well, he couldn't move his arms or legs, roll over or sit anymore.  The seizure had devastated him physically beyond measure.  Spiritually I felt like he had matured over night.  His eyes were wiser and he seemed more patient, with us and himself.  I can't imagine the frustration that he must have been feeling, suddenly unable to do anything that he had worked so hard to learn in the first 10 months of his life.  Even though Trevin was profoundly different, we were so thrilled to have him.  We know that he could have died on April 3rd and we would have never known how or why.  We were so grateful for yet another miracle, that we were able to take him home and adjust to our new life.  We didn't know what our time frame was at this point.  In fact we were very hopeful that we would have him for a  long time because he had such fight in him.  None of the doctors thought we would ever take him home.  We went on to have 8 more months with our sweet boy.  He helped change the course of our lives and who we have become today, and we will be forever in his debt for that.  I was never a perfect mother.  Never as patient as I could have been.  But he was patient with me, and loved me unconditionally, always.   I could feel that from him.
Some days he could muster just enough energy to move his little hand up to grab the brim of his hat, or the crinkly ear on his Pluto dog toy.  You can tell he wasn't feeling super good this day.  For some reason Trevin had a little more tone than Tatum did after her first big seizure.  He could tolerate sitting supported like this, where she could not.  She was literally paralyzed for the rest of her life once she had her seizure.  She could never hold her head, turn her head, move her arms or legs, etc.  Sweet little girl.  As their mother I feel such a bond with these special little people that I was so graciously granted time to take care of.  When I think about the bond that they must have with one another, it is overwhelming.  They can truly understand one anothers earthly struggles.  Oh how I miss them.
Who goes camping with a feeding tube, Trevin does!  I was the same, even 20 years ago.  Living by the motto, Walkers do hard things.

Since that Easter Sunday April 3rd, 1994, Easter has been a tender time for me.  Not in a bad way, but a very good way.  It is a beautiful time to reflect on the beautiful hope that the resurrection brings to each one of our lives.  It is a gift that we have all been freely given from our Savior.  He is the reason that I know that Trevin is OK.  He overcame death so that we could all live again, as He does.  I am forever grateful for the gift of knowing and understanding this simple gospel truth, that this is not the end.  My heart could not continue beating if I did not know that I will see my sweet Trevin again.  As the Easter season approaches I pray that my heart will be open to feel the peace and hope that it offers from the One who gave everything for me, and who remembers me.  Me.