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.