Baptism Day

Zuri is our firecracker.  She is outgoing, vivacious, full of life and love and energy.  She says exactly what is on her mind--oftentimes leading with a statement to get your attention.  If you don't know her and what's been going on in her life you can be left confused on what she is talking about.  Context, I tell her, is important.  She just turned eight, and to her, everyone should understand what she is talking about.

She is smart.  She lights up when she grasps a new concept and can't wait to share it with everyone.  She proudly tells everyone what level she is on in reading, and the current topic they are working on in math.  She loves nature and the earth and doesn't understand why people don't want to take care of it.  She often tells me that it's not good to drive too much because driving hurts the earth.  She will pick up litter anytime she sees it.  She knows all about sharks and many other animals.  

She wears her heart on her sleeve.  She loves fiercely and unconditionally.  She is prone to dramatics. I am more analytical and have a hard time understanding how to relate to her at times, which can lead to tug-of-war between us.  I don't want to curb her zest for life in any way, but when she cries--literally cries tears of joy--because I let her stay up five minutes after normal bedtime, I am completely flummoxed.  I just don't get it, and yet, it's that same unadulterated joy in life that I love about her.

She's been excited about her baptism.  There was a period of time where nerves got to her.  She thought she would have to bend backwards and she kept saying her back doesn't bend like that, so J showed her what she would be doing.  After that she was all excitement.  Whenever anyone asks how her baptism went, she says, "warm [meaning the water]!  I want to get baptized every day!"

Zuri shared her baptism day with one of her good friends.  They are two weeks apart in age, and are in the same primary class.  They have also been in the same class at school for the last two years.  It's been fun to watch them grow together.

Before their baptism we took the girls out to the temple and took pictures of them all dressed up in their baptism dresses.

 Individual pics of Zuri:

This one was her idea :-)

Birthday Fun

Every year I marvel as Kai grows older.  From the small three pound baby he was to the solid almost kindergartner he is now.  I know I've said it before, but I'm going to say it again: five years ago I couldn't even envision him now.  I couldn't see past the day to day, let alone even think about future Kai.  I scoffed at words like wheelchair and school because I was just trying to get through "now," and he was literally fighting for his life every day.  We were terrified of the ventilator--not because of the vent itself, but because what it represented.  To us it meant regression.  We saw how he hated and fought it in the NICU.  We worried that it would lower his quality of life--being tied to one more machine.  However, the opposite occurred.  He started to thrive.  We were able to get on the TC Waiver program, giving us respite nursing, which has saved our sanity, and we were able to start looking beyond the immediate day to the next week, to the next month, to the next year.  Suddenly, the future not only seemed possible, but expected and anticipated.

 Now our Little Mister is turning five.  Five.  He has taught me so much.  I am a different person because of him.  Hopefully better than I was before.  I value life and friends and family so much more because I have seen how fleeting it can be.  Everything can change in an instant. 

So we celebrate.  Kai's birthday weekend started off early with his school nurse bringing him a couple presents.  Kai has been showing more interest and awareness in toys, so she gave him Spiderman and a Transformer car.  He was pretty funny exploring Spiderman for the first time.  We put it by his side and he immediately lifted his foot up, exploring first with his foot, then cautiously with his hand--never letting go of his ballard until he must have deemed it as safe.

  We celebrated Zuri's and Kai's birthday together.  The idea was to go to the park and let the kids play in the splash pad and on the playground, but the splash pad doesn't open until Memorial Day and it was super windy.  We made it through eating lunch/dinner, but decided to do cake and presents back at our house.  I've decided that I'm not going to host any more outdoor events because it seems that every time I host something outdoors the weather doesn't cooperate.

Alisia and Maria made Zuri's and Kai's cake.  Didn't they turn out amazing?

The kids had fun playing on the playground though, so at least that part went well.

Ridge

Kai was spoiled for his fifth birthday this year.  His big present was a swing from J's side of the family.  It was a hit!  Not only with Kai, but the other kiddos as well.

It was fun to watch as Kai's level of comfort increased the longer he was on the swing.  He started off with his hand covering his eyes--his way of blocking out the world.  As we swung him, he laughed and laughed.  Slowly he lowered his arm and started chewing on his ballard while still laughing.

Once Kai was done, the other kids got on and had a blast.  We started with two and kept adding kids.  We ended with five kids, but there was room for a sixth.  They loved it! 

River was put down to bed, but she likes to play in the window.  We were outside, just enjoying the nice evening (of course it would be nice after the party was over), and I heard a little voice.  River was watching us from her window.  It was so adorable I had to get a picture. 

This Adventure Called Life

I'm going to say it out loud, and I'm going to say it proud: I love my life.  Sure, I have my challenges (don't we all?), but I have a pretty darn good life when all is said and done.

I think there's a huge misconception in the world, that those who have special needs, or are caregivers for those with special needs are....miserable.  That our lives, because of the unique challenges we face, are somehow less.  Sometimes when I talk to people, especially people who knew me pre-Kai, there is a sympathy for my life--for my "situation."  I believe it is quite the opposite, actually.  I believe that our life is actually richer and more fulfilling in many ways.  Granted, it's not ideal and would have never been my choice (I don't think anyone having a child thinks "oh please let this child be medically complex"), but this is the life we've been given and I intend to make the best of it.

I intend to live out loud.

Top of Angels Landing, Zion National Park

When I was pregnant with River, I was asked to speak in Relief Society about overcoming challenges and moving forward with life.  At the time I didn't know how to articulate what was inside and ended up rambling; but really, it is simple: I can either bow down to my fears and wallow in self-pity and despair, or I can meet life head-on and make the best of the life that I have been given.  I love life.  There is so much wonder and beauty in the world.  I grew up hiking, camping, swimming, and just being surrounded by the tranquility of the earth.  I still love all those things today--perhaps even more so, because it is harder--but not impossible--to do those things now.  I don't take it for granted as I did when I was younger. We are surrounded by people who love us.  Some are near and others are far, but their love and support has helped sustain us through some of the tough times.

Kai has changed our life, no doubt about it.  Developmentally, he is 3-6 months old in his motor skills, and 6-9 months old cognitively, in a five year old body.  He will always need 24-hour care, even if he was able to get off the ventilator.  Hourly eye drops, nightly feedings, turning him every couple of hours so he doesn't get sore, monitoring his oxygen levels, keeping an eye out for seizures, and that is just at night.  Daytime includes all of that and more--so much more.

But I don't look at my life that way.  Yes, my life is completely different than the majority of people.  I love my "little mister," and I have adapted to all the cares for him.  Caring for him isn't a "burden."  It isn't something I have to do, but something I choose to do--because he is my child and I love him for the unique individual he is.  I celebrate milestones when he achieves them.  I'm more cognizant of the amazing things our bodies do naturally, and in many ways having Kai has given me more appreciation for the two typical children I do have.

Everyone has challenges.  Some people are masters at presenting the world with the perfect facade while other people's challenges are more apparent.  This is true even in the special needs realm.  Parenting is hard, no doubt about it.  Some days are just brutal, and bedtime cannot come fast enough.  Whether you have typical or special needs children, parenting is hard.  I often joke that most of the time Kai is my easy child.

Yet parenting is also extremely rewarding, and Kai and the girls have brought so much to our family.  Challenges, yes, but so much more as well.  Zuri has infectious energy.  River is mischievous.  Kai simply radiates love.  It's amazing how much a child who is non-verbal is able to communicate, especially one who cannot hear  and rarely makes eye contact.  We have met people whom we would have never met otherwise through Kai.  Some of those people have become dear friends.  We have seen a softer, more loving side to human nature than is typically seen in the world through our little guy.

I do worry about the future with Kai.  He's only forty pounds, but feels much heavier.  Forty pounds of dead weight because he cannot support himself.  While I am not a tiny woman, I'm not particularly large, either, and the bigger he gets, the more I wonder how long I am going to be able to carry him around.  At some point we are going to need to get a house which is disability friendly.  It would be way too expensive to do the needed modifications for our current house.  We are talking about narrow hallways, stairs, bathroom, entryways, etc.  With his back rods we cannot pick him up under the shoulders and carry him upright; we need to carry him cradle style--not bending his back, and he already barely fits that way through our hallways and stairway.  I worry about how other people are going to treat him as he gets older.  It's a sad commentary on society, but the younger one is, the more accepting people are of differences and disabilities, as though one has the ability to outgrow all disabilities by the time one reaches adulthood.
I'm excited for Kai as well.  He will start kindergarten in the fall at a school designed for special needs kids.  It's one of only a handful in the United States that is accredited.  The students from one of the local high school's interact with the children in the school constantly.  They even take them to prom.  The school has monthly plays, a swimming pool, sensory rooms, PT, OT, etc, etc.  They are on 30 minute blocks so the kids are constantly engaged.

Kai has loved preschool.  He is in a mixed preschool of special needs kids and a few typical kids.  Everyone loves him and are sad to see him go--even the other kids.  Kai even knows the difference between kids and adults.  For example, he hates when adults hold or manipulate his hands, but he will allow kids to do the same thing that he wouldn't allow an adult to do.  He definitely has his own personality.

Statistically, 80-90% of couples with special needs children divorce.  The strain of appointments, medical bills, hospital stays, emergency situations, all coupled with day-to-day life stuff takes it toll.  We have learned the value of getting away--of time for ourselves, both individually and as a couple.  One of the best things we have done is to have our vacations, whether it's just a quick trip into the mountains, or a week get-away out of state (or country).  It's not only the vacation itself, but the planning and having something to look forward to during the days that are hard.  I think that it's something everyone should do--whether you have kids (typical, special needs) or not.  Getting away from the mundane and doing something new is so revitalizing for the mind, body, and soul--and marriage.

Mangrove Lagoon, USVI

We also understand the importance of letting each other have a bad day.  Life isn't always sunshine and roses.  Clouds come and thorns pierce the skin.  We buoy each other up on those days.  We learn to work together.  We laugh.  We cry.  We get angry.  But at the end of the day, we support each other.  We make time for one another; even if it's something as simple as snuggling on the couch watching Netflix, playing a board game.

So while my life may be hard at times, I don't count it as harder than others.  My challenges are different, but something that is easy for me may be hard to someone else.  There is a meme that I really like:

 I believe that it it's our attitude which determines how we make it through the mud...and my attitude? I intend to play in the mud; get dirty and messy and have a smile on my face while I do it.

First Expansion

Kai had his first expansion for his growing rods, and I must say, technology is certainly amazing.  Instead of having to have repeat surgeries every few months to change/lengthen rods as he grows, Kai will have this less than five minute out-patient procedure every few months for several years.  The recovery from surgery alone is more than worth it.

The doctor first used a blue magnet to find where the rods are, then he marked the spot (on both sides).  He used the machine, which rumbled and clicked for about 20-30 seconds per side (if even that long).  He explained everything he was doing each step of the way.  When he got to the actual lengthening of the rods, he said, "I'm performing surgery right now!"  It was pretty cool.

Afterwards, Kai was slightly fussy, but I think that was more due to lying face-down than the procedure, because once he was picked up he immediately calmed and was in a very good mood the rest of the day.  I would even say that he felt better after the lengthening than before.

One rod was lengthened more than the other due to sensitivity of the rods to the machine.  One side lengthened while working on the other, but the doctor wasn't worried about it.  I guess there is a mechanism that stops it when it gets to where it needs to be to help prevent over-lengthening.  If I remember correctly, one side was lengthened eight millimeters and the other side was just over six millimeters. 

Absolutely amazing, I tell you.  When we arrived at the appointment, they took x-rays to see how everything looks, and make sure the rods are still correctly placed and whatnot.  After the expansion they took another set of x-rays (not included in this post).

 In case you missed the original post, here are the after and before x-rays of his spine.  Definitely a huge difference!