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.