Differently-abled

Gabriel and I made a run to Home Depot last week for various items: mosquito spray, ant poison, drill bits and safety rails for the toilet. That last one we are hoping will help Samuel potty train. We figure if he has something to hold on to, he will feel more stable and relax and well, you know, go. Fingers crossed, hoping and praying.

While in Home Depot, I couldn't find the toilet safety rails so I asked a nice older gentleman employee, explaining it the best I knew how, "Excuse me sir, do you have an accessory for the toilet with handles?" He looked at me a little perplexed and thought to himself and said, "Yes! For disabled?" And before I knew it, my spirit dropped, just that fast, that one word snapped me like a twig. "Disabled" He had no clue it was for my six-year-old son. I'm sure he thought it was for a grandparent or someone elderly. But no, my baby boy is categorized by the world as "disabled". That word has haunted me. See previous posts here and here.  I don't avoid it. I just don't think about it. I love Samuel for Samuel and don't focus on his abilities or lack there of.

We followed the nice gentleman to the toilet department and as soon as Gabriel saw the safety handles he excitedly exclaimed, "Mamma!! Samuel needs that!!!" He was so excited for his big brother. He has seen our struggle, Samuel's struggle in the potty training department. He encourages Samuel to go potty and has even helped his big brother in the bathroom himself.

When we got home, I was still dealing with my feelings of blah, I don't even know what to call it. Funk. Mood. Depression. Introspective-ness (I know that's not a word, but you get the point). But Gabriel, he was excited to put those handles on the toilet for his big brother. He tore that box open, ripped all of the hardware and metal out and went to town trying to put it together.

My children have taught me and continue to teach me a lot about life. In this lesson, Gabriel faces the obstacle head-on with excitement. Better yet, he doesn't even see it as an obstacle. He sees Samuel for who he is and tries to help him. That little boy amazes me. He knows exactly how the world views his big brother and yet he loves tenderly and strives to unite and help. I've seen him on the playground around other typical children who don't know how to play with Samuel, he teaches them too.

So in my introspective-ness, honestly, I haven't come to a new conclusion. That word still stings. "Disabled". How about "differently-abled"??  Samuel has so many abilities. Discernment that's out of this world. Love that bubbles through his smiles and hugs. A sweetness that I've never seen. Just to name a few.



So I guess that is my conclusion. We don't need to change. The world needs to change. Our family is only labeled "disabled" because we are different from the norm. But our uniqueness is beautiful. Don't get me wrong, it gets crazy and is extremely draining physically and emotionally. But we have some glorious moments that typical families never experience. I can't even explain it. And only few know of which I speak. To those few in our lives, thank you. Thank you for sticking it out with us. You too are differently-abled, unique and beautiful and strong yourself. Digging your heels in, pushing through the screams, tears, poopy diapers, puking, falls, spills and pills. I can never express my deep gratitude enough. I pray you are blessed far more than you've blessed us. And that's immeasurable, pressed down, shaken together and running over.

"Give, and it will be given to you. A good measure, pressed down, shaken together and running over, will be poured into your lap. For with the measure you use, it will be measured to you.” -Jesus
Luke 6:38

Just smile

Yesterday, I had to fly, so Daddy picked up Samuel from school. While waiting for Samuel, a mother and her little girl recognized Daddy as Samuel's father; this is a common occurrence. The mother proceeds to tell him that her daughter is facing serious health issues that have the mother very concerned and quite scared. She gave an account of a recent event in which her daughter saw her mother's concern. The little girl, trying to comfort her mother, said "Mommy, It'll be OK as long as we smile like Samuel smiles".

This blessed me so much. Knowing that Samuel is an inspiration for a family going through tough times. Just smile. But not just any smile...a Samuel smile. Ear to ear, open mouth, squinty eyed smiles that make the one that he's smiling at feel like a celebrity. I wonder how many times that little girl has seen Samuel's smile. In the hallway at school? In the cafeteria? On the playground? I try to see it through Samuel's eyes... In the hallways full of children where he is often times tripped up accidentally, no doubt. In the cafeteria where he has to bring his own lunch because he can't/won't eat "normal" foods. On the playground where he has to have an aide within arms reach at all times to catch him should he fall. All of these obstacles and yet, he still has this charismatic, genuine smile. That is inspiring. He is inspiring. He can't talk. But yet he speaks volumes through a smile. 

Now here I am, flying again today. I was about to start the engines, on to another destination when I received a call I've been waiting for. Medical diapers for Samuel. He is six-years-old and not potty trained. He has outgrown the store-bought diapers. This is a difficult task for me, to talk to the nice lady about insurance and my son's diaper needs. I feel like I've failed him. So I answer the call, the passengers can wait, Samuel needs this more than they need their destination. Polite and honest, with tears in my voice I answer her, "Ma'am, I am about to fly an airplane, I'm having a hard time with my six-year-old being in diapers. Please do your best, I trust you. I just can't talk about this right now. I'm sorry." I start up the engines with hot tears streaming down my cheeks and think to myself, 

"Just Smile, smile like Samuel and it'll all be OK."

Labels

I'm still working through this one. Allow me to share with you what I received from Samuel's school yesterday....They asked for me to "read and sign" this document, pictured below. The first line of the document hit me like a low blow to my gut, down to my very chore. I was not expecting it. I don't know what I was expecting... a field trip permission slip, a therapy consent form, a medical records request...I don't know, just anything, ANYTHING but this. The first line reads, "Samuel is receiving Special Education due to mental retardation." Mental retardation. Mental retardation. MENTAL RETARDATION!!! My mind raced.

Bare with me here. I am his mother, I know him best, I know he is almost 6-years-old and can not verbally talk, I know he is not potty trained, I know he is not stable on his feet and he walks funny, I KNOW ALL OF THIS!!! Believe me, I think about it every day. Despite my most earnest and severe efforts, the truth remains that he is far behind the curve. However, it has NEVER been in my mind that he is mentally retarded. Maybe that makes ME "retarded". Maybe I'm in denial. Maybe I don't want to face the truth, no, that's not it....I know the truth...I don't want to face the label. That's it...I HATE the label. 

I am full of faith for my first born son to receive a greater purpose in his life than a "mental retardation" label. I give him a "Spiritual Discernment" label. "Healer" "Minister" "Lover of people" He is so much more. I am his mother and I will give him his identity. As parents, it is our responsibility to hear from God on how to raise him up. And when I pray for Samuel these are the labels I hear. 

And as for this school document; well, I don't blame them, I know they are just following protocol and procedure. I pray for his teachers and therapists daily. I pray that he will be a blessing to them and that they will be a blessing to him. I pray that he is helpful and ministers to them. Everyday, I ask God to dispatch guardian angels around him and to protect him where I cannot. I expect healings and miracles from everyone he touches or even passes by. I pray that they feel the magnitude of responsibility that comes with teaching such an anointed child. 

And anointed he is, indeed. 

Samuel's First Day of Kindergarten 2015

Brotherly Bonds

"I don't want Gabriel to grow faster or supersede Samuel", I said to my dear friend, years ago when Gabriel was just a few months old. The experienced grandmother that she is replied with the sweetest, kindest, reassuring voice that she could, "Oh Shannon, but he will. Gabriel will be smarter and faster, but it will be OK".

I knew this day would come. Samuel is 5 years old (RTS), Gabriel is 3. I was trying to ignore it. Ignore the fact that Gabriel is potty trained and Samuel is not; Gabriel can count and say his ABCs, Samuel can not; Gabriel is maturing, Samuel is, but much more slowly.

Gabriel has had to learn how to "play" with Samuel. Which is usually not play at all. More than not, it is Gabriel laying down, letting Samuel attack him in a play wrestling match. Or, Gabriel bouncing from couch to couch, throwing a ball to make Samuel laugh. Or Gabriel, on his bike, riding circles around Samuel on his tricycle.

Gabriel went to preschool this year. He played with typical children. He has friends now. He has tasted the right way, the fun way, to play. And Samuel is not fun. No, Samuel screams, falls, doesn't understand, runs off, throws the ball somewhere other than at Gabriel, yells. Its compounded by the fact that it is summer time now; they don't have school to escape to, they only have one another to play with all day, every day for the next few months. But Gabriel doesn't want to play with Samuel anymore. He actually said that today, "I don't want to play with Samuel anymore". I felt my heart sink to the pit of my stomach. I wasn't ready.

Gabriel would rather lock himself in his room than to play with Samuel. I don't want to let him do that, but I understand it. I sometimes want to lock myself in my room too. Away from the yelling, the repeating myself over and over to no avail. But, as I explained to Gabriel, we are a family, we love one another, we have to pray to Jesus that Samuel learns to talk so that the yelling will stop. He's just frustrated, trying to tell us what he is doing or not doing, wanting or not wanting. And we are frustrated just as much or even more!

So here we are. The day has finally come. I pray that Gabriel grows out of it, begins to develop a tolerance, a love, an understanding, a bond. Yes, that's it. A bond. A brotherly bond that no one has seen. A deep love and understanding that allows them to communicate without using words. That will be my prayer now. Please, help me pray.

Samuel distraught at the sound of tractors nearby
Gabriel asking Daddy whats wrong with Samuel

Samuel and Mommy update

Looking back at past posts, I've realized how far we've come.

UPDATE ON SAMUEL:

Samuel is 5 years old. Not talking. Not potty trained; however, 

He has matured greatly these past few months

He keeps track of his drink. (this is a big deal in our home)

He sleeps through (most) nights

He feeds himself (some)

He has found creative ways to ask for what he wants: pauses a video on a picture of chocolate

He has learned how to play with Gabriel (and vice versa)

He is gentle with baby Ellie

Samuel and I get along much better now, we are not as frustrated with each other as we used to be. I think him being in school for part of the day and him being able to "communicate" better has attributed greatly to our tolerance levels. He follows (most) directions now. He accepts discipline without vomiting (this is HUGE). He is open to trying (most) foods without choking.

UPDATE ON MOMMY:

I'm not nearly as frazzled as I used to be
I understand some of my "triggers" and avoid them as best I can
When a "trigger" does happen, I don't let fear overtake me; whether it be the fear of Samuel's health or future or my inadequacies as his mother
I don't look at his school progress reports, Daddy reviews them and gives me the good news
I pick my battles, whether it be with the school system or Samuel
I allow others to minister to me without guilt
I accept that people don't understand and that's ok; they don't have to understand my struggles in order to help us and vice versa
It's ok to say "no", I don't have to do everything
I try to laugh more than I cry
I take one day at a time

I'm still learning and growing; just as Samuel is. We make adjustments together

As far as behavior and health, we are on the up and up. We give glory to God. He is constantly covered in prayer; and it shows.