A Wise and Ancient Soul who Manifests Himself Under the Guise of Disabiity.

 Recently, I came across a quote from another blogger mom with a child of autism, to wit:

 “In many ways we are like the busy man who walks up to a precious flower and says, ‘What for God’s sake are you doing here? Can’t you get busy some way?” and then finds himself unable to understand the flower’s response: “I’m sorry, sir, but I am just here to be beautiful.” * * Henri J.M. Nouwen 

She compared the purpose of her mentally disabled child to that of a flower.  I found this analogy beautiful but I wonder how beauty can be found in a situation where your child is incontinent until his teens, where due to being nonverbal, he pulls hair, clothes, scratches out of frustration; where the onset of seizures is a constant worry and fear a parent lives with everyday. How can I find beauty in knowing he will never be independant and the fear of abuse from others lingers over my heart.  Where is the beauty in knowing I may have to bury my child before my own death yet somehow hope that he goes before me so that I know I can always take care of him; or , the fear that he may be taken from me because I will be made incapable of taking care of him due to old age, finances, etc...These are questions I ponder and try to find the beauty in the situation.  Perhaps, there is no beauty in the situation but only in the soul that resides within the disability. It's all a mystery to me how the mind of God works and why a beautiful and ancient soul like Luki would manifest in this world under the guise of disability.  My mission and purpose is to discover the answer to all this and God willing, with time, I will have betters answers to the questions.  

Here is a clip from a session with Michelle Whitedove who saw into the depth of Luki's soul through his eyes.  A mother in desperation can go to just about anyone for answers and while none have been coming from the medical professionals or even religious leaders, I found great comfort in her words and hold them to be true and real.  I look forward to getting to know Luki even more as he grows older.  

2014 A Year in Review

Lucas took his first school picture this year.  He has always felt older and wiser than his age and here he is going from 3 years old to 40!  Couldn't help putting on the tie. I think it goes nicely with the glasses. I can only hope that future school pictures will look as great at this one. It's hard getting special needs children to look into the camera and sit still which is why so many of them come out looking more special needs in school pictures. I may opt not to buy school pictures if this be the case. 

When I look at our little home all decked out for the holidays, it fills my heart with so much pride, warmth and bliss.  I get teary eyed at all the love we have within these walls.  Sometimes, on my way to work at night, I stop in front of the house across the street and just take five minutes to admire the lights we put up.  Not so much the lights themselves, but the warmth that is within the house.  I sit in my car in awe at what I have been able to achieve in my life and at the privilege of calling Gabriel my husband and Lucas, my son.

We attended 4 weddings in 2014!  Here, we are at Tom's (Gabriel's manager) wedding in June.  I so like this picture because we rarely get to be so silly together and here we have a silly shot for memory sake.

Lucas celebrates his 4th Christmas this year. Even though he doesn't quite get the concept of Santa bringing gifts and I don't have the pleasure of seeing him run down the stairs Christmas morning in his pajamas, I still love having him in his Christmas pajamas every year. In fact, we even went to the mall in his pajamas! This year, he is my cutest gingerbread man!

He still loves the water and this picture captures him in pure joy at being able to "catch" falling rain. I see God in his smiles and hear God in his giggles. He caught a cold after this romp in the rain!

He also went to see snow for the first time this year at Mt. Baldy.  He is not a big fan of cold weather and ice but with all things, I think with more exposure, he will grow to like it. Unfortunately, we live is So Cal and the opportunity to visit snow is limited.

We also went to visit Sycamore Mineral Springs this Winter.  Our visits are turning into an annual family tradition. He had a stuffy nose and was miserable the whole trip but loved the time in the mineral pool.  He slept for the rest of the car ride home afterwards and so did I.

That's the whole family in the pool. Wherever we are, I love that we are all together. 

Lucas can now signal to us when he has had enough.  He flaps his arms as if to say, "no no no!" Here he is trying to tell me he is cold. He was soaked wet in the rain which is probably how he caught his cold.  I am a bad mom. But, I loved seeing him so happy in the rain.  Note to self: buy him a raincoat!

December 30,2014

He loves daddy!

He likes to get tickles from daddy!

This shot melts my heart. 

He still doesn't know how to ride the "schoolbus" He can't push himself on it but likes to push the buttons which make music and sounds. 

I recently won a free home photo session worth $500.00.  Not sure why I didn't pretty myself up for the occasion but Luki came out fab and smiled for most of the pictures.  I made our 2014 Christmas card out of the pictures. 

Luki plays a piano duet with aunty Christine at grandma's house for Christmas.

For the last two days, Lucas has been very fussy, clingy and crying a lot and it is so frustrating to not  know what is going on with him.  He makes a lot of vocal sounds but is still nonverbal.  Usually when he acts this way, I can trouble shoot it with either sleep or food.  Yesterday, he cried for most of the day and was pulling my hair and collar.  I have seen him do this before but it was usually a cry of distress.  This time, I can't pinpoint what the problem is, exactly.  It breaks my heart to see him so and not be able to make it better for him.  Today was a bit better but he is still very whiny.  I think he is teething. Gave him Tylenol and was back to his happy self.

Today, we had our first community outing in ABA,  We had our session at the mall along with the therapist, the supervisor and a trainee.  All four of us were hovering over Luki and he was very fussy for the first half hour perhaps still feeling the pain from teething.  He refused to walk and participate in anything.  Having four people with him seemed redundant.  They were just watching him as I interacted with him.  There really isn't much they can do when the whole session revolved around the goal of having him walk the mall.  We just need to tail him and make sure he doesn't run off.  Somedays, I wonder if ABA is making any difference.  I have recently made it a point that I am the primary therapist and the person Easter Seals send is my assistant.  I don't think the therapists do a good job of initiating therapy. This way, I make sure he is getting the skills training he needs while also allowing for mommy and me time. After a while, Luki held our hands to walk.  He even held his arms up to the therapist to hold hands.  He is used to having his dad and myself hold his hand as we walk. Although nonverbal and not fully oriented to his environment,  Lucas is very into his routine.  He walked into Marie Callendars and walked toward the back exit door and walked across the parking lot to a car that looked like our minivan and stood there as if waiting for us to open the door for him to get in so we can go home.  This is the routine we have every other weekend for breakfast.

On this New Years Eve, after having cooked and eaten yummy chicken piccata, roasted kale, garlic mushrooms and a bit of wine for dinner, I count all my blessings and smile at the beautiful memories indelibly left upon my heart. I am taking all the beautiful pictures throughout the year into eternity and look forward to reviewing my album in heaven.,  Luki is still seizure free, growing taller and more handsome everyday.  Gabriel and I are still gainfully employed, healthy and happy. I am so thankful for God's goodness.