Monday, June 3, 2013

When Three Became Four (or Five, if you Count Buck the dog)

Easton recently turned 9 months old. This post is long and very outdated, as there is about 9 months of events to re-cap. I have really got to find time to keep up this blog!

Easton has certainly changed things around our house, in a way that is hard to explain. There is less time, less money, certainly less sleep ;) But there is so much more love, happiness, and blessings since his arrival. Tucker is much more mature, and even though the first few weeks with Easton at home were a struggle, they were a struggle in ways that were perfectly expected….more work, little sleep, Tucker learning how to share his mama and daddy with a little person, Chris and me having less time for ourselves and one another.

We didn’t prepare Tucker for Easton’s birth the way that I would have suggested to any other mom with a young child. I didn’t get him a baby doll to play with, or tell him that he’d be a big helper. But we did talk about babies a lot, and I’m pretty sure he was expecting another baby like Kinley….as in, an 18 month old that he could play with J  I was in the hospital for 6 days on bedrest, and Tucker only visited me once. Having too many visitors could have raised my BP, but my heart hurt to see him. So one night he came up with Chris, and he walked in and said “change the diaper.” I said, “there’s no baby yet!” At home, he told his teddy bears “mama’s comin’ home” over and over. Poor baby missed me!

During the first few days and weeks after Easton’s birth and homecoming, I asked God for strength constantly….the strength to get through the next few hours, or the whole day….the strength to not go into my sleeping husband’s room and demand that he not get any sleep either ;) (The poor man was probably only getting 4 hours of sleep and then going into work in industry where he needed his wits about him….but hey, that was 4 more hours than I was getting!)

I just knew that whatever we were doing, we were doing it wrong…because Tucker stopped progressing in therapy.  He had a few pee pee accidents, and one poop accident so I had to pick him up at school. I was exhausted and I was so worried that the other KG kids had made fun of him (he started KG the day that I was admitted to the hospital).  I worried about what impact Easton would have on Tucker’s therapy and his abilities to move forward. I had devoted so much energy and thought to Tucker for the last 6 years, surely things would slip now that there was a new little person to tend to?  Time and time again, his therapists, his pediatrician, and even his mito doctor reassured me that it was perfectly fine for Tucker to regress a little. It was actually a blessing because it meant that he noticed “wow, something is very different here! This little bundle of blankets has a person inside it!” It was also great that Tucker was upset to not spend as much time with Chris and me. It meant that he really valued his time with us, and we couldn’t be replaced by other caregivers.  This was actually news to me, as I thought he preferred his Mickey Mouse videos to my singing and rocking any day ;)

There were several times that we felt downright awful because Tucker noticed that Easton didn’t have to follow the same rules. Easton got to stay up late with mama and daddy, but Tucker had to go to bed early to be ready for school the next day. Of course, we had to keep Easton up until at least 10 pm to hope that he would sleep until maybe 4am…but Tucker didn’t understand that, he thought Easton was up playing with us.  One time we put both boys in the tub, and Easton immediately pee peed. We laughed at him, so then Tucker stood up and peed in the tub, too! He got a spanking and we had to of course empty the tub and clean it. 

Having Tucker’s therapy sessions was such a blessing because he was out of school for over a week when Easton came home due to Hurricane Isaac. I couldn’t drive us anywhere or play outside with Easton, not that I would have wanted to. So Tucker spent a lot of time inside with Easton and me except for therapy. Then he got his routine and his rewards, including going to the mall and playing outside.  I was so nervous to be home with both boys alone, but really Tucker was very good. He was very patient while I fed Easton his bottle, and during pumping sessions. A lot of the time, he’d get a book or a music toy and sit next to me on the couch while I was busy. I would sing to both boys and Easton would stare up at Tucker, it was very special quiet times with both of them.  The problem would be on the weekends when the therapists were making up the sessions from all of the hurricane time. Chris was home, and at first Tucker was even more attached to Chris. So one time Tucker asked Chris to rock in the rocking chair, and Chris said no, he could rock after therapy. So Tucker listened and went to do his therapy. Then when he came out to potty, he glanced at Chris and saw him rocking Easton……well if looks could kill, Chris would have been dead in the rocking chair!

Tucker wanted to do anything that Easton did, and whenever we gave Easton attention for something, Tucker did it too. So when we’d try to get Easton to burp, we’d pat his back and say “come on, Easton, burp” etc. and Tucker would burp.  Easton wore the all in one pajamas that zipped, so Tucker tried to put on the newborn sized PJs! I found him a few size 5 all in one PJs with the footies (they even sell them in grown up sizes!) at Wal Mart, and he was thrilled.  The problem was that he couldn’t get them off quickly enough to get to the potty. One night, Chris and I were up late watching Duck Dynasty (well, we would have been awake with Easton anyways!) cracking up laughing at Uncle Si. Tucker shuffled out of his room rubbing his eyes, saying “potty, potty, potty,” so Chris and I ran to help him unzip his PJs. Well, we were too late, he peed all over the floor. I put Easton down in the playpen to help Chris calm Tucker down and clean the floor. When we were done, we got Tucker back to bed and checked on Easton.  He was screaming and completely covered in puke…..so the baby was changed and cleaned, and the play pen sheets were changed. And Uncle Si kept us laughing the entire time. It was such a “normal” night for parents of two kids, and we laughed hysterically….maybe we were delirious or maybe because it really was pretty funny.

Tucker is a baby expert; in fact, I can’t imagine raising a baby without a Tucker to tell me what I am doing wrong. He knows when the baby needs changed well before I do. The Huggies cover up the smell of poop pretty well, so sometimes Easton has a diaper full and I don’t smell it! But Tucker does!  Anytime we get ready to leave the house, he reminds me to “get the baby! Put him in the carseat” as if I have ever forgotten the baby! And as if I’d ever put him somewhere other than his seat ;) He helps me pick out his clothes (almost always the clothes with firetrucks on them). When Tucker is tired of sharing his toys or parents with the baby, he even puts him to bed.  He says “put the baby in the bed” “put the baby to sleep.” He turns on the music box, turns off the light, and waits for one of us to put Easton in the crib.  Tucker believes in the Cry It Out Method. You put Easton in the crib. If he cries, you shut the door on him. If he cries louder, you turn the TV on to cover up the noise….seriously! Most of the time he wants Easton with him, but when he has had enough, he will let you know!  During the first few weeks, Chris and I struggled to figure out what Easton’s cries meant. One night we couldn’t get him to stop crying and Tucker just stared and stared at him.  Chris asked “what is wrong with him?” Tucker replied “he won’t stop crying.” LOL

We have had many more adventures over the last 9 months, including medical ones. I hope to find more time to update everyone on all of it soon!


Thursday, January 24, 2013

Kyle

Many of you who are my facebook friends saw me post about Kyle or share Team Kyle updates from time to time. I wanted to share a little more information about this amazing boy.

On January 8, 2013, Kyle passed away at home with his family. He was 8 years old, had the nickname “Big”, and he taught tens of thousands of people to Live Life for Today during his all too short time on earth. I met his mother through the March of Dimes, and I have seen her in person and hugged her several times….
I am trying to process the loss of Kyle, and imagine what Kate and the whole family is going through right now.

Nothing I write would do justice to Kyle or his family, I just need to get out all of the emotions I am dealing with, this is more of a post to explore all of that. It is, as usual, all over the place.

We know instinctually that parents are not supposed to outlive their children, it doesn’t make any sense. We are meant to care for our children and see them grow up. Preemie moms and mito moms know this is not always the case, and I know many babies and children that have gone to heaven long before their parents. Babies that fought alongside Tucker for months passed away right before Tucker came home, and another one a few months after. We mentioned their names often, asking them to be with Tucker and watch over him. Samuel’s name is mentioned often in our home.

The Sandy Hook elementary tragedy was so awful, I heard reports of it through facebook then I watched online news, it was so hard to believe. As the reports kept coming, and we learned the victims were mainly 6-7 year olds, I was glued to the TV, learning all about the kids. I was so angry at the one news channel that kept showing the killer’s picture and talking about him instead of the victims. The other channel showed pictures of each child-one little boy on a 4 wheeler, one little girl who asked for cowboy boots for Christmas (like my 5 year old cousin), one little girl playing the piano with her little brother….then I learned that two of the children had special needs and/or were nonverbal. I know that their families’ lives likely revolved around therapy schedules, dr appointments, arranging schedules to avoid meltdowns, and putting so much energy into helping them reach their potential. That is all over for them now.

While so many people reacted by demanding stricter gun control, asking for better mental healthcare (as they should), I just felt very overwhelmed and tired. Not the physical exhaustion I felt when Easton was just home from the hospital, up every 3 hours to eat, and then I had to pump, and then be up all day with Tucker…more of the emotional exhaustion from trying to comprehend how something like this could happen to families like mine. As the country has kind of moved on just a month later, I still wonder about the families. One of the articles I read explained that this tragedy particularly hit parents of 6 year olds, as most of the victims were around that age. It explained that we know what 6 looks like, sounds like, how its hair smells so clean after a bath, how 6 delights in learning new things….6 is our whole world, and we can’t fathom it being ripped away. Although Tucker is not a typical 6 year old, about 90% of the article applied to him, and also my 5 year old cousin.

Tucker’s anxiety increased tremendously during the Christmas break, he really needs his routine. He is having trouble sleeping, crying real tears a lot, throwing fits, chewing his shirts up, and grinding his teeth. We can never tell if he is sick or if this is all behavioral and anxiety related. He can’t tell us….and that is hard. I called his neurologist and she is decreasing his dose of SSRI meds and adding risperadol for the OCD and anxiety to hopefully help his compulsion to chew and grind his teeth. We got him chewy tubes to gnaw on which he uses often, but sometimes they are just not enough. This has added to my feeling of being just plain tired and wishing things were different.

January 8 started out as a good morning. I woke up on time (this never happens!), DH helped even more than usual with both kids, Tucker was well behaved and excited about school, and Easton was smiley and so very good, as usual. I had a decent ride into work with my sister, and I settled in to check emails then had a quick peek at facebook. This is where I learned that Kyle had passed away, in his home, with his parents and his "kids"….the wind was knocked right out of me. I couldn’t cry, I didn’t really believe it. I looked at Team Kyle’s page, at everyone’s statuses, and they all were telling me it was true. There are so many reasons why my heart is broken, I met Kate on several occasions, our babies’ stories started out so similarly, she provided me so much support and advice over the years about tube feeding, life with so many people observing you, the feeling of not being able to help your child… I never met Kyle, but as many others know, we didn’t need to meet him to love him. Kate probably didn’t get a full nights sleep in over 8 years, yet I know she’d gladly live that life forever if it meant that she was up caring for Kyle.

I heard this song in the car that day as I was at my lunch break http://www.youtube.com/watch?v=UUEy8nZvpdM , and I couldn’t stop crying, sobbing really. Kyle, you touched so many lives and taught us all so much, now you have gone to rest. The work for your family of learning how to be on earth without you is just beginning, I will hold the St Clair family in my hearts forever.