Thursday, July 14, 2016

For the Love of Summer

We’re smack in the middle of summer, enjoying warm sunshine and soaking up as much friend and family time as we can.  We kicked it off with Moise battling an upper respiratory infection that would not end.  Resistant to many antibiotics, the gunk in his lungs seemed to take up residence, causing violent coughing, increased heart rate, low blood oxygen levels and an uneasiness in the pit of my gut. Moise is incredibly resilient though, and after several rounds of medication and a fierce determination to keep him out of the hospital we finally beat it and he returned to his normal self.  Aside from that summer’s been fabulous.

Summer time challenges me.  Round the clock caregiving and a commitment to retaining all that Moise and Kruz learn throughout the school year keeps me on my toes and leaves little room for down time. Summer school is always an option but we’ve never opted for it because I am of the belief that as long as we can maintain learning and development here at home, these boys deserve a break in the same way that any other child does.  So we try to keep our calendar as free as possible, lower our expectations for what gets accomplished and try to take each moment as it comes, knowing that it’s only a season. The new school year will be here soon and then we can focus on what needs doing. 

We’ve settled into a summer routine, a basic necessity for keeping things running smooth and reducing levels of agitation and frustration where the boys are concerned.  I am so very grateful for the fact that both boys have taken to sleeping until around 8:30 most mornings.  This gives me a few hours to get in some much needed exercise and quiet time to prepare my body, mind and heart for the day. I’ve long ago determined that quiet, alone time is way under rated.  I think that I shall never again take it for granted.

Jade’s old bedroom, purple and lime walls and all, has been converted into a therapy room of sorts and it’s where we spend a large part of our mornings. We have two main summer time goals for Moise:  to keep his hamstrings from getting tighter than they already are, and to retain his knowledge of braille that we’ve worked so hard to gain. We typically accomplish both from his stander. The stander stretches out his hamstrings in a long, gentle stretch.  We try to have him standing for an hour each day, gradually increasing the stretch, and we work on his Braille, among other things, at the same time.  



Our number one summer goal for Kruz is walking.  He’s so close.  My hope is to send him to school in August without his walker.  There are three things that keep him from taking off on his own:  balance, core strength and confidence. When we’re inside I take the walker away from him so that he can’t rely on it. We have exercises that we do for a few minutes at every diaper change to help with balance and strengthening. I’ve had to stretch my imagination a bit to build confidence.  I take a soft cloth and roll it up and then wrap it around his hand so that it’s like holding onto a hand.  As we walk, I gradually release my grip on the cloth so that it becomes slack and he’s walking with very little support.  It may be that he will need to walk around with a rolled up cloth in his hand for awhile but that won’t bother me in the least.  We also work on self feeding and other tasks that require functional use of his hands. This, admittedly, makes me feel like I’m banging my head against a wall. He vehemently resists any direction when it comes to using his hands.  We play with water and beans and touchy, feely things to convince him that he can do all the things his senses tell him he can’t. We also informally continue to work on speech.  There are no specific exercises set aside for this but all day long we sing and talk and play games with repetitive sounds. He has so many, many sounds that come from his mouth, if only he could form them into words. But words or no words….this boy can sing!!!   Kruz is so often content to play quietly and as he plays he hums. He hums so well and so on key that we can play name that tune. There is something about his singing that humbles me in the deepest places of my being.  What a beautifully pure image of joy in the face of hardships.  He faces so many challenges and yet he chooses to sing every chance he gets.  I want to be like that.



On the health front,  we’ve been noticing a lot of redness and watering from Moise’s eyes.  Last week’s appointment with his eye doctors revealed increased pressure in both eyes and a lot of inflammation in the left.  While he never complains, the doctors say that he likely experiences a great deal of eye discomfort and, most likely, headaches.  We’re back to using steroid drops and hoping that they help.  They also informed me that there really is no point in continuing to purchase glasses for him as he’s not seeing out of them anyway.  Moise, being a creature of habit, is not crazy about going without them and I haven’t decided whether or not that’s a battle I wish to fight.

While much of my summer is dedicated to meeting the learning and growing needs of our two youngest, there are plenty of other things going on as well.

Business is busy. 

Jamee is working full time in radiation/oncology at the hospital and is settled into the adorable little home she purchased in March. She’s loving trying her hand with her own landscaping.

Grant often seems to be MIA as he works long hours as an almost engineer.  He’s currently on a three week backpacking adventure in the Canadian Rockies.  I’ll be glad when he’s home but also glad he’s taken the oppurtunity.  He is developed a love for photography and I can’t wait to see the pictures he takes.  I know they’ll be amazing and might have to post a few, even thought I can’t take credit for them.

Brock is working full time for our business and becoming increasingly skilled.

Jade is working full time at a local coffee shop and putting her baking talents to good use. She moved into her own sweet little apartment. She’s got a flare for decorating and that place has “Jade” stamped into every little detail.  She is young lady of many talents and they shine through nearly everything she puts her hand to.

We’re enjoying plenty of fun summer time activities as well. 

A sampling of some of the things we’re enjoying lately:


Little boys keeping cool under the shade tree while mom gardens.  Moise’s forever love of water and Kruz’s slowly growing love for it.


Popsicles and ice cream in many form and little brother who is always up in big brother’s business.


Moise may not be able to see or hear when we’re out playing in the water but he does know a good treat when he tastes it.  Those eyes though. It hurts me every time I look at them.


Lazy summer days on the boat


Keeping cool and making memories with friends and family in the water.


Adult children trying out their Christmas gift that they’ve been waiting for since December.  Mastering our newest water sport….. wake boarding.


Dads teaching daughters to drive the boat.


Pulling out jackets and pants and whatever we can find stashed in the camper to keep warm on chilly evening boat rides.


Sunsets over the water that never, ever grow old. They whisper peace to me.


The peace of a quiet boating community where we forget, for just a little while, that there are really awful things going on around this world.


Quiet walks as a family.


Daughters who are still willing to camp with us and make breakfast for all.  I’ve never really understood why meals are always better when we’re camping and they are better still when I’m not the cook.


Cooking up dinner over an open fire.


The Tremont Turkey Festival………Kruz tolerates it but doesn’t love it. It’s too loud, too many people, too much for his fragile senses to take in all at once.


The Tremont Turkey Festival…….where all Moise’s dreams come true.


Good friends who offer….and we accept… help get our young man on the rides.  It’s no small task but sometimes love requires hard things.


The joy, the smiles on his face on this one night of the year.  There really are no words to describe it.  And the carnival workers?  They never cease to amaze me with their willingness to make it work for Moise.  They tend to get a bad rap but they truly appreciate Moise and his challenges and for that I adore them.  They bless him and he blesses them.  God’s amazing like that. 


Walks through the carnival.  It’s the same each year: cotton candy, lemon shake ups, corn dogs and cheap trinkets you can win if you get sucked into the spirit of it all.


Big boys who love their dad.


Kruz’s fourth birthday.



Sunday evenings spent in the yard…..playing badminton or football, relaxing and enjoying the new fire pit that Jim came home last week and announced he was making. 


Evenings or weekends in the hammock

Little boys who love their daddy.

Happy summer.  Make fabulous memories and enjoy today.  We never know what tomorrow will bring.

God is good, all the time.