Adventures with Samuel & Gabriel

A Public Service Announcement on Bullying

2018-02-28T10:05:00.001-05:00

Recently, Samuel and I had a very challenging experience with a couple of bullies. We’ve had other run-ins with bullies (Read more here. ) After the previous bully encounter, I resolved to face the issue head-on: with the parents. I did just that, this past week. However, I’m left with the regret that I could’ve done more. Instead of allowing my Mama Bear to take control, I’d rather be calm and teach the parents the better way to handle their bullying children. Possibly have them meet Samuel properly and teach them the better way to interact with him.

I’m praying about a systematic response (a prepared speech of sorts) to make the encounter easier to handle emotionally. Kind of like the one I give to people when they ask, “What’s wrong with him?” *insert eye roll here* Not because people are curious, I don’t mind that, but because people have no grace anymore, no nice way to seek information.

I’m instructing my “typical” children on how to stand up to bullies for themselves and their friends, knowing that one day in the not-so-distant-future, they’ll be the ones to protect their big brother, Samuel. I still have a lot to learn; but in the mean time, I’m doing my best to educate parents and children alike.

The video below is a true story about what happened to us followed by a hopeful solution to the bullying epidemic. Please feel free to share.

Perspective

2018-01-29T18:40:00.004-05:00

Raising children is hard work. Raising a special needs child with disabilities and health issues is on a whole different level of crazy hard work. Most days I’m exhausted to hopelessness. I wear too many hats. I keep my thoughts about these things to myself most of the time because 1) people don't understand, 2) I don't want to complain, 3) I expect my children to read this blog one day and I never want them to feel bad for my sacrifices as their mother. However, I started this blog with the hope of helping other special needs families. Having someone to relate to and understand the struggle is priceless. Brace yourself:

My hands are raw from the constant cleaning of vomit and poop .

My bones and muscles ache from having to overpower my fighting eight-year-old while I care for him, clothe him, bathe him and change his diaper.

My emotions are on the edge of a meltdown with concern about every facet of his current and future life.

My heart breaks for the pain he endures on a daily basis.

My shoulders hold the heavy responsibility of being severely observant over every detail concerning him in order to be proactive against sickness, injuries, regularity, diet, hydration, and more.

I feel guilty about my "typical" children not receiving as much attention as they should.

I've been sleep deprived for 8+ years with no end in sight (Read more here).

I'm hardly reliable and never predictable.

I have no social life outside of my home and work, not even church is a place of connection. Unless you come to me, it is extremely difficult to connect.

I do not call on help unless absolutely necessary for fear of exhausting all of my resources.

I've heard "You only call me when you need help with your kids" more times than I care to remember (reference the previous two entries).

I want to visit, I want to connect, I want friendship, but my time is severely limited, my energy is reserved for long nights, early mornings and hard days.

"Fun" is so far from my vocabulary that it seems like a distant memory.

"Rest" seems unobtainable, especially not on "family vacation".

My marriage suffers. Greatly.

Just to name a few.

Yes, I carry it all, it is my daily reality, I feel alone, I struggle, I fight, I'm tired... But recently I received some perspective: I attended a funeral of an autistic boy. He was hit by a car and died immediately upon impact (Read more here). Funerals bring much perspective and ones that hit close to home can rock your world.

I didn’t know the boy well, he had no idea that his life gave me much hope. He attended our church once in a while; every time he visited it was a blessing to me. He gave me hope for Samuel’s future. I often wonder what Samuel will be like when he is older. This boy was a no-nonsense, unapologetic worshiper and lover of God. I could see Samuel becoming like him which brought me much joy as I envisioned Samuel’s future.

While looking at that sweet boy in his casket, I felt a great sense of honor. I am honored to carry the weight. I am honored to be trusted with such a significant task. There aren’t many who can do what I do. I would not trade my role for anything.

Right now, his parents are living every parents’ nightmare. ~~I couldn't imagine burring one of my own~~; actually, that’s not true, I have imagined it and I have come close to walking in their shoes and it was horrific to think about. God saved us, saved my children from death on more than a few occasions. I am forever grateful for Him and His saving grace. I can’t even begin to put into mere words how much I appreciate God stretching His hand out to save us.

So today, I have perspective. Yes, I carry extremely heavy burdens, but He carries me. God's grace and love is the only way I'm able to do what I do. And I love what I do.

Family Vacation 2017
Maybe one day I'll tell the story.
God's saving grace is amazing.
I can't thank Him enough.

Deficits and Declarations

2017-09-23T20:54:00.005-04:00

I feel a melt down coming on... that weepy, tear-filled-eyes feeling that you just can't shake. When you can't see the good, only the bad. When you don't see a way out. No light. No comfort.

I want to blame it on the doctor. It was only a check up. I didn't need to know the tendencies of Rubenstein Taybi Syndrome. I didn't need to know what to "look for". I didn't need to know that he is well below the average scale as well as the RTS scale. Yes, I'd like to blame it in the doctor, but it's not his fault, not entirely.

Samuel has been extra fussy lately. Fussiness that's actually a cry for something. A need, a want, an exclamation! I don't know. That's the exhausting part; I DONT KNOW!! I don't know!!! I don't know what my son needs, wants, desires. I guess. I guess wrong, time and time again. I tell him to show me on his iPad; he refuses. I tell him to use his words; he can't.

I'm a mother who can't help her child. I'm at a loss. A deficit. I'm struggling.

We have victories, yes. We have success, yes. But the struggle and frustration on both our parts has tipped the scales.

I imagine what life would be like if Samuel were a typical 8-year-old. Helpful, nurturing. Instead he is the opposite. And I hate to admit that. Even his younger brother and sister see it. His 2-year-old sister looks out for him, warns him, protects him, helps him. Our house dynamic revolves around Samuel's needs.

But more than that, what Samuel is, what he declares with every slow, unstable foot step, with everything within his little being: a lover, a healer, acceptant of all people, an encourager, a Saint.

And I am honored to be his mother. As exhausted as I am, he is worth it. Every tear, every meltdown; he is worth it. I pray his siblings feel the same.

So when you say, "I just love Samuel, he blesses me so much", you're actually strengthening me. He could care less what you say or think, if you're blessed or not. He is who he is; he makes no apologies, he does not need your validation. He does not struggle to be who God made him to be. I am the one who struggles to let him be who God made him to be!!! His brother and sister are the ones who struggle!!!

So my prayer tonight and in this season is "God give me and my children the grace to face the challenges beset before us. Help us to accept who you made Samuel to be. I let go of what could've been, what I think it should be and I give you total control. As I grieve the loss of my dreams for my children, I'm trusting You to replace them with Your dreams, Your plans, Your thoughts and Your ways. I'm trusting that Your peace will wash over me and my household, I'm trusting that You'll send help, that You'll strengthen me and that joy will come in the morning! Amen!"

Bubbles or no bubbles...

2017-07-27T21:29:00.000-04:00

What do you do when your 2-year-old is more advanced than your 7-year-old?
I can tell you what I do... grieve and blog.
The trigger: blowing bubbles.
Yep. That simple. A task every child seeks to accomplish. Exciting!! Yet it is a task my 2-year-old has mastered and Samuel (7/almost 8-years-old) cannot. Not yet anyway.

My 2-year-old, Ellie, communicates better than Samuel. She follows directions better than Samuel. She's able to do more on the playground than Samuel. The list goes on. I won't harp on it.

I remember years ago, (6 years to be exact) pregnant with Gabriel, being worried that Samuel's little brother would supersede him (see this blog entry). Them being a mere 22 months apart I could justify it in my mind. But now! Oh now!!! Ellie and Samuel being a vast FIVE YEARS apart; this allows for no justification. I have to face the hard facts: Samuel is 5+ years delayed.

I don't grieve because of the delays. I grieve because of the Samuel I don't know. The thoughts I don't hear. The desires he has that he can't express. The dreams he's dreamt. The funny ways he sees the world. I'll never know.

I grieve because I don't know him as well as I know my other babies. Will I ever? Will he be able to tell me his favorite song? His dreams at night? His dreams about his future? I grieve for the unknown.

It's a process. But I can tell you, he is the sweetest boy I know. He may not be able to talk or blow bubbles but he can bring a smile to the hardest of hearts. I rejoice in his abilities. I rejoice as he rejoices with others in their accomplishments. The way he praises Ellie for blowing bubbles. The way he laughs when she sings or counts or does anything else he is not able to do. And I encourage him! I encourage him to blow bubbles, talk, poop in the potty, sing, pray, draw, write, count... I am his biggest encourager!! Forever and always.

Play nice

2016-07-14T17:07:00.000-04:00

Daddy and I took the kids to a splash pad today. They had a blast! We couldn't find Samuel's (RTS, 6-years-old) water shoes, so he went barefoot; which, I won't do again, his little toes were bleeding by the time we left 😢 While we were there Samuel greeted all of the children with a sweet smile, high five and a laugh, as per the norm. I watched the children's reactions to his friendliness. Some were open to it and smiled back at him and laughed while others looked at him like he was crazy. (Actually, this world is crazy for friendliness not being the norm anymore. But that's another post.)

Kids love being chased by Samuel. It never fails, any playground we go to, it ends up being a game where the kids are running from Samuel. I haven't decided if I'm okay with this or not. Samuel enjoys it, so that makes me think its okay. But the kids run, scream, laugh and I don't know if it is because of his "hum": it kind of sounds like a growl when he gets really excited. I don't know if they are making fun of him when they run or if it is an honest game of chase. Verdict is still out on this one.

But today. Today was definitely different. The chase game started with a few girls around 8-years-old. I observed closely, Mamma Hen, waiting to turn into Mamma Bear. Then it happened, "Did you see his toes??!!" one said to another. "Watch how he walks", as they proceed to imitate his wide gait, in his face, taunting him, trying to get his attention to begin the chase again.

My heart sank and ached for him. He had no idea. He was content to keep chasing them. But Mamma Bear was fuming. I chose not to say a word. One of the girls noticed that I heard them and they stopped. I wanted to say something to their parents, but what? I wanted to say something to them, explain his diagnosis. But what good would that do? What would be learned?

Then my attention turned to Gabriel and Ellie. How will they react when they realize that their big brother is the object of ridicule? When they're old enough to understand what is being said about their big brother, what will they say? How will they feel?

I guess we'll cross that bridge, prayerfully, when we get there. We are close. Gabriel is extremely observant. Until then, I will educate and instruct my own children on the ways to play with others different from us. That's a lesson we all need to review from time to time; adults and children alike.

Differently-abled

2016-06-04T23:15:00.000-04:00

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

2016-05-18T21:36:00.000-04:00

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

2015-08-12T14:19:00.000-04:00

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

2015-05-24T18:53:00.001-04:00

"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

2015-03-19T13:52:00.003-04:00

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.

Happy Mother's Day

2013-05-08T19:44:00.001-04:00

Last night was a difficult, restless night. That always makes for a hard day. I often feel that Samuel doesn't like me: pushing me away when I try to hug or kiss him, screaming at me, hitting, pinching and biting me. Those feelings were very strong today. I try to convince myself that he does love me. But on days like today it is more difficult to believe.

I'm sure his teachers have no idea that I barely believe that "Sweet Samuel" loves me. Nevertheless, he came home from school today with this craft:

I can imagine his teacher asking his classmates why they love their moms. Of course, they give adorable answers that melt your heart. I long to hear Samuel's answer.

One day.

Infantry Museum

2013-04-20T22:57:00.001-04:00

This week we met with Aunt Dawn, Sammy, Molly, Nick and Papa Paul. It's always nice to spend time with family.

The Clowns of God

2013-04-12T16:05:00.001-04:00

“In the fictional novel, The Clowns of God, by Morris West, Jesus comes back to earth, and some people think it’s Him while some don’t. At one point, Jesus is at a school for children with Down syndrome, and He is holding a little girl. Jesus says:

‘I know what you are thinking. You need a sign. What better one could I give but to make this little one whole and new? I could do it, but I will not. I am the Lord and not a conjurer. I gave this mite a gift I denied to all of you — eternal innocence. To you she looks imperfect — but to me she is flawless, like the bud that dies unopened or the fledgling that falls from the nest to be devoured by ants. She will never offend me, as all of you have done. She will never pervert or destroy the work of my Father’s hands. She is necessary to you. She will evoke the kindness that will keep you human. Her infirmity will prompt you to gratitude for your own good fortune … More! She will remind you every day that I am who I am, that my ways are not yours, and that the smallest dust mite whirled in the darkest spaces does not fall out of my hand … I have chosen you.

You have not chosen me.

This little one is my sign to you.

Treasure her!’ “

Here is even more declaration of Gods love:
Emma's Story

Glory!

2013-01-24T15:07:00.001-05:00

I started this blog with hopes of helping others relate to and cope with having a special needs child, facing obstacles, being a stay-at-home mom...the list goes on and on. I can't expect to help others if I'm not completely open and honest. I'd love to paint you a beautiful picture of what an awesome mom I am and how perfect our family is....but that would not be even close to honest.

With that being said, I'm about to share something that I've never shared with anyone. A feeling. A thought. At one of my lowest points in the struggle of having a special needs child and a busy baby with a busy schedule, I wrote in my journal,

"If I had to do it over again
I'm not sure I would.
And that scares me."

Not that I don't love and adore my children. I do. Not that I don't thank God each morning and night (and in between) for the blessing of these two sweet boys. Not that I don't have wonderful laughs and joy with them. I do. I am blessed.

However, sometimes it becomes so overwhelming that I wonder if it would have been better to just not have had any children at all. I was told by two doctors that I probably wouldn't be able to conceive. So it wasn't so far fetched that I would be childless. I had, somewhat, accepted it. And now that I have them, I wonder if God gave them to the wrong woman. I feel like He got the wrong gal for the job. I told Him today that this is a hard thing that He has asked of me. I don't know if I'm strong enough for this. I'm not ... I'm not.... I'm not a good mother.

Just being open and honest. You can judge if you want, but remember, you'll be judged in the same manner that you judge others (including me).

There is a happy ending, at least for this blog entry...
The next thing I have written under that journal entry is this:

But it was done for the glory of God

"I made him like this so I could be glorified in this. My strength is made perfect in your weakness. If you're too strong, I can't show off. If you've got too much going for you, I can't show off."

But when all hell is breaking loose and you're down for the count and there's no way in the world that you can get up, God says, "That's when I can show up and show them that I've been with you all of your life!"

God can be glorified in something that is not beautiful, not perfect.

"I planned his blindness for my glory. I'm glorified in the imperfections."

Don't fix it, glorify Him.

"I made him this way because I have an appointment with him when the time is right and the stage is set, I'm going to heal him where I can get the most glory!"

- TD Jakes speaking on the blind man that was healed

Amen and amen.

1st Day of School (without Mommy)

2012-11-05T10:32:00.001-05:00

It was really hard for me. But I know it is best for Samuel.

We are starting with just 1 day/week, 8:00 to 11:00.

"Daddy dressed me" (notice the socks :)

Going to School

Checking our the fish tank in the hallway

Walking the halls

Checking out the ladies

Chasing the ladies...

Still chasing the ladies...we're going to have to have a talk

READY for School

Vote For SAMUEL!!

2012-10-27T11:17:00.000-04:00

Tomorrow

2012-09-28T15:13:00.001-04:00

Samuel had his annual check up/shots today. The doctor told me that we need to bring him in more than just once a year. He also said that we need to make a decision about when to have the surgery to pull Samuel's right testicle down (the left one died when it was surgically pulled down in 2010). I had to hold Samuel down while he got his shots....something that reminds me of our Seven Days.

Therefore, I need encouragement today. It has been more difficult to encourage myself today like I usually have done in blogs past. I re-read some of my older blogs. I'd like to say they brought me encouragement....but it had the opposite reaction actually. So I decided to count my blessings. And there are many; however, there is still a black (maybe gray) cloud over all of the blessings it feels.

I don't expect everyone to understand. But for those of you that do....I hope it brings you comfort to know that there are others like you out there. There are goods days and bad days. Easy days and difficult days. Tomorrow will be a new day.

Thats the best I have for today :/

Hard Days

2012-07-17T22:38:00.000-04:00

Today was a tough communicating day with Samuel. It didn't help that we couldn't go outside because of nearby storms and rain. I think getting out helps him release energy and causes him to be less frustrated when he cant communicate his needs/desires. Also, Samuel didn't take a nap today...a nap-less Samuel is a fussy Samuel.

I had to get out of the house...so I went to publix to pick up a few groceries. We're always in need of something from publix. While in the checkout line there was a cute little girl in the buggy in front of me. She had a bow in her hair and her eyes were slightly crossed. We made eye contact and both smiled. She shyly brought her shoulder to her cheek so I copied the gesture. We did this back and forth a couple of times, well, long enough for me to look around to see if anyone saw me acting like a child. As I studied her a little more closely I noticed she looked similar to Samuel: her arms and legs were slow and skinny (lack of muscle tone), her smile was innocent and sweet.

Suddenly, her mother spilled a drink on the floor. I helped her clean it up. She apologized. I told her there was no need for an apology, I clean my boys' spills all day, this was nothing compared to the messes I've cleaned. I noticed pediasure amongst her groceries. I'm all too familiar with pediasure.

I'll spare you the small talk....basically her little girl was born with an "H" chromosome disorder (Samuel's is a 16th chromosome disorder). She is almost four years-old and still not walking or talking. She has hearing aides that she doesn't like to wear and she receives therapy everyday, Monday through Friday. Their insurance has already been maxed out for the year for her therapies. They don't know what they are going to do.

I'm going to be praying for that little girl and her family. And I'm going to be more grateful and thankful for all of Samuels days, even the hard ones.

Perhaps...

2012-07-06T12:45:00.001-04:00

Samuel has an iPad! Thank you Fran-a-Clause ;) He is doing quite well with it. However, the Speech Therapist came today, she was impressed with how he has learned it so quickly but he is not as skilled as she thinks he can be if he had, a pointer, a grid, a new $200 program or a new $200 - $10,000 communication devise. I must admit, as much as I know she is trying to help, I couldn't help but think "YOU suggested the iPad! WHAT NOW?!?!" I've become a bit bitter; to say the least.

I've been studying bitter women of the bible. Today I stumbled upon Hannah (First Samuel 1). The LORD had closed her womb! She had grown bitter. She finally poured out her bitter soul to God. She left it at the altar. And then God opened her womb and gave her Samuel; in turn, she gave Samuel back to God. This spoke to me on several levels:

The moment we found out we were pregnant with Samuel we gave him to God. Perhaps God has closed Samuel's mouth to deal with my bitterness. Perhaps I have to pour out my bitter soul to God in order for Samuel's mouth to be opened and in turn give Samuel and his mouth back to God. I want him to speak for himself but more than anything I want him to speak for God. I want him to be God's mouth piece. Hannah's womb could not have born Samuel out of bitterness; neither can my Samuel's mouth be opened out of my bitterness. Perhaps....

com·mu·ni·ca·tion [kuh-myoo-ni-key-shuhn]

2012-06-01T17:32:00.001-04:00

Today we went to Auburn to see Daddy at work and stopped by and saw DeAnn and Jordi. So glad I got to see them. They are such an encouragement. While there, Gabriel almost broke a couple of lamps and dumped a jar full of vintage marbles all over the floor; Samuel pooped and got to play with an iPad. Which brings me to my next point: The speech therapist suggests that we get Samuel an iPad as a communication devise. I don't want to pay that much just for a 3 year old to destroy it. What is cheaper but still allows communication apps?

Currently, these are our communication methods:

The photos are velcroed on the pages...he likes to pull them off so he can
hear the velcro scratch...not a good method of communication

These he likes to dump onto the floor so Gabriel can chew on them and hide them.
The only ones he actually uses are the ones out of the box: "Drink", "Jump Jump Jump" & "Cookies"

So the app that we would need is Picture Card Maker. I found this website. But I don't know if this is compatible with a tablet or kindle fire. Everyone seems to think that just because we are pilots we are tech savvy....we are completely the opposite! HELP!!!

Rubinstein Taybi Syndrome? WHAT'S THAT?!?!?!

2012-05-22T19:31:00.002-04:00

I found this video. I might start referring people to this when I'm sick of answering questions.

He LOVES this game...

2012-05-04T14:16:00.001-04:00

Walk This Way...

2012-05-04T14:11:00.000-04:00

7 Things You Don't Know...

2012-05-04T14:06:00.000-04:00

About a Special Needs Parent. As written by Maria Lin...

(my comments are in black and are brutally honest, please don't judge me)

1. I am tired. Parenting is already an exhausting endeavor. But parenting a special needs child takes things to another level of fatigue. Even if I've gotten a good night's sleep, or have had some time off, there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of tending to those needs. Hospital and doctors' visits are not just a few times a year, they may be a few times a month. Therapies may be daily. Paperwork and bills stack up, spare time is spent researching new treatments, positioning him to sit a certain way, advocating for him in the medical and educational system. This is not to mention the emotional toll of raising a special needs child, since the peaks and valleys seem so much more extreme for us. I am always appreciative of any amount of grace or help from friends to make my life easier, no matter how small, from arranging plans around my schedule and location, to watching my son while I am eating.

I can't begin to tell you how helpful this is...if you have the option, please choose to come to us. Getting out of the house is difficult, especially on a schedule. Its funny that she mentions watching her son while she eats, I never knew how much I took eating for granted. Eating in peace is a HUGE deal to me now (this is the second time I've mentioned it on this blog, see Big Shoes). Samuel and Gabriel do NOT allow eating in peace. So I opt to eat while they are sleeping when I can or when Michael is here we take turns eating.

2. I am jealous. It's a hard one for me to come out and say, but it's true. When I see a 1-year-old baby do what my son can't at 4 years-old (like walk), I feel a pang of jealousy. It hurts when I see my son struggling so hard to learn to do something that comes naturally to a typical kid, like chewing or pointing. It can be hard to hear about the accomplishments of my friend's kids. Sometimes, I just mourn inside for Jacob, "It's not fair." Weirdly enough, I can even feel jealous of other special needs kids who seem to have an easier time than Jacob, or who have certain disorders like Downs, or autism, which are more mainstream and understood by the public, and seem to offer more support and resources than Jacob's rare condition. It sounds petty, and it doesn't diminish all my joy and pride in my son's accomplishments. But often it's very hard for me to be around typical kids with him. Which leads me to the next point...

It is bitter/sweet to see Gabriel walk and eat so well at only 9 months. I'm overjoyed for him. At the same time it hurts that Samuel's little brother walks and eats better than he does. I want Samuel to be the big brother in all aspects. It hurts me for him.

3. I feel alone. It's lonely parenting a special needs child. I can feel like an outsider around moms of typical kids. While I want to be happy for them, I feel terrible hearing them brag about how their 2-year-old has 100 words, or already knows their ABCs (or hey, even poops in the potty). Good for them, but it's so not what my world looks like (check out Shut Up About Your Perfect Kid). It's been a sanity saver to connect with other special needs moms, with whom it's not uncomfortable or shocking to swap stories about medications, feeding tubes, communication devices and therapies. Even within this community, though, there is such variation in how every child is affected. Only I understand Jacob's unique makeup and challenges. With this honor of caring for him comes the solitude of the role. I often feel really lonely in raising him.

I am often told that I need to get involved with other moms, mom's-day-out programs. I want to. But at the same time, I already feel alone. I don't want to add to it with funny looks and stares.

4. I am scared. I worry that I'm not doing enough. What if I missed a treatment or a diagnosis and that window of optimal time to treat it has passed? I worry about Jacob's future, whether he will ever drive a car, or get married, or live independently. I am scared thinking of the hurts he will experience being "different" in what's often a harsh world (not to mention that I fear for the physical safety of the person who inflicts any hurt upon my son). I am scared about finances. Finally, I fear what will happen to Jacob if anything were to happen to me. In spite of this, my fears have subsided greatly over the years because of my faith, and because of exposure to other kids, teenagers, and adults affected with Jacob's disorder. When I met some of these amazing people at a conference last year, the sadness and despair that I was projecting onto Jacob's future life (because it was so unknown) melted away when I saw the love and thriving that was a reality in their lives. The fear of emotional pain (for both me and Jacob) is probably the one that remains the most.

If you find yourself wondering why I tend to be a basket case at times, it is because the above bold text is my world, on a daily, sometimes hourly basis. I am scared. I know God has a plan, but I still have questions.

5. I wish you would stop saying, "retarded," "short bus," "as long as it's healthy... " I know people usually don't mean to be rude by these comments, and I probably made them myself before Jacob. But now whenever I hear them, I feel a pang of hurt. Please stop saying these things. It's disrespectful and hurtful to those who love and raise the kids you're mocking (not to mention the kids themselves). As for the last comment, "as long as it's healthy," I hear a lot of pregnant women say this. Don't get me wrong, I understand and share their wishes for healthy babies in every birth, but it's become such a thoughtless mantra during pregnancy that it can feel like a wish against what my son is. "And what if it's not healthy?" I want to ask. (My response: you will be OK. You and your child will still have a great, great life.)

6. I am human. I have been challenged and pushed beyond my limits in raising my son. I've grown tremendously as a person, and developed a soft heart and empathy for others in a way I never would have without him. But I'm just like the next mom in some ways. Sometimes I get cranky, my son irritates me, and sometimes I just want to flee to the spa or go shopping (and, um, I often do). I still have dreams and aspirations of my own. I travel, dance, am working on a novel, love good food, talk about dating. I watch Mad Men, and like a good cashmere sweater. Sometimes it's nice to escape and talk about all these other things. And if it seems that the rest of my life is all I talk about sometimes, it's because it can be hard to talk about my son. Which leads me to the final point...

7. I want to talk about my son/It's hard to talk about my son. My son is the most awe-inspiring thing to happen to my life. Some days I want to shout from the top of the Empire State Building how funny and cute he is, or how he accomplished something in school (he was recently voted class president!). Sometimes, when I'm having a rough day, or have been made aware of yet another health or developmental issue, I might not say much. I don't often share with others, even close friends and family, the depths of what I go through when it comes to Jacob. But it doesn't mean that I don't want to learn how to share our life with others. One thing I always appreciate is whenever people ask me a more specific question about my son, like "How did Jacob like the zoo?" or "How's Jacob's sign language coming along?" rather than a more generalized "How's Jacob?" which can make me feel so overwhelmed that I usually just respond, "Good." Starting with the small things gives me a chance to start sharing. And if I'm not sharing, don't think that there isn't a lot going on underneath, or that I don't want to.

Actually, I disagree a little. Sometimes I don't want to share, because I don't want to hear your opinion/advice. If you have proven that you are a good listener and a prayer warrior, I'm all about spilling my guts to you. If you have proven yourself to give me awful cliches and compare my experience (which you know nothing about) to something normal, then I don't want to share with you (see Still Learning). That's why I only have a few close friends.

Raising a special needs child has changed my life. I was raised in a family that valued performance and perfection above all else, and unconsciously I'd come to judge myself and others through this lens. Nothing breaks this lens more than having a sweet, innocent child who is born with impairments that make ordinary living and ordinary "performance" difficult or even impossible.

It has helped me understand that true love is meeting someone (child or adult, special needs or not) exactly where he or she is -- no matter how they stack up against what "should be." Raising a special needs child shatters all the "should bes" that we idolize and build our lives around, and puts something else at the core: love and understanding. So maybe that leads me to the last thing you don't know about a special needs parent... I may have it tough, but in many ways I feel really blessed.

9 Ways To Help...

2012-05-04T13:33:00.000-04:00

While Facebook stalking :) a friend of mine, I noticed that she had read this. The title caught my eye, so I read it too. I've not been good at expressing my feelings about being a special needs mom. I can express my frustration, hurt and exhaustion, but that's about it.

I am often asked "How can I help". My honest answer is "I don't know". I know what does not/has not helped. But I don't know what helps. But after reading this (below are Maria Lin's words in blue, my comments in black)...I have a better idea, and you can too.

1. Talk about your kids' personalities, not their accomplishments. I mentioned in the last post it can be hard to be around typical moms, especially when they're bragging about their kids' accomplishments. When I hear a mom tell me that her 3-year-old knows all the words to her favorite book by heart, it can hurt when my son can't speak. And it doesn't give me a lot of room to say anything in return. I'm not inclined to mention one of my son's accomplishments, like he made the "B" sound the other day, only to be met with compliments that can feel patronizing. But here's the thing: I'd love to tell you all about Jacob's personality. I want to share with you how funny and weird he is, how mischievous he is, like how he sticks his finger in his nose all the more when I say, "Ew!," just to get a reaction from me. How he is affectionate, silly, and determined to get his way. How he kisses fuzzies he finds on the ground, and is obsessed with elephants. I want to know about your kid's personality, too, which is probably more interesting than his or her achievements, anyway. No matter how impaired a child is, he or she has a personality and a spirit, and the parent knows it. Let's start talking about who our kids are rather than what they can do.

2. Insist on helping. No matter how "together" I appear on the outside, I can always use help. In fact, sometimes appearing "together" is the only way I can make it through the day myself. You'll notice I didn't write "offer to help." Offering to help is lovely, don't get me wrong. But from experience, I often have a hard time accepting help, even when I really need it. It's odd -- why am I trying to act like a superhero when I actually need help? Sometimes I doubt the offer, thinking they just feel bad for me or are just being polite. But if you insist on helping, it's fabulous because I feel like you will not take no for an answer -- it takes a weight off me. In terms of how to help, you can always ask, "How can I help?" and if a special needs parent gives you some suggestions, that's great. But if you find that this question is getting you no response, it's not because he or she doesn't need help. It's because she doesn't have the energy to figure out what to tell you. So if you love this person, be a detective and find out how you can help (and make sure it's actually helpful to the person). "I'm sending you a few cooked meals this week." "I found a few great neurologists in your area." "I'll drive your kids to practice this weekend." "I got you a housekeeper for a few hours." One way to help that will probably be universally accepted? Help watching the kid so the parent can have a break.

I took it upon myself to bold the areas above that I exceptionally agree with. I absolutely need help! Most of the time I don't know how you can help or I don't think you're willing to help in the way I need it.

3. Stop with the maxims. I understand that people just want to offer hope and encouragement and don't know what to say sometimes. But I never knew a cliche or maxim that suddenly made everything better. Examples of things I've heard that are pretty frustrating: "He'll be fine." (How do you know this? And why are you diminishing what I'm going through?) "Everything happens for a reason." (A personal non-favorite of mine.) "He'll get there." (Again, how do you know this? What if there are some things he will never be able to do?) I sense sometimes that the maxims are really to make the speaker feel more comfortable with the situation -- but they don't help me. Please lose the maxims. Just be there for me. Tell me my son is adorable (it never gets old). Listen to me, cry with me, laugh with me. I don't need canned wisdom, I need friends, ears, and helping hands.

4. Extend me some grace. While in some ways my parenting experience is the same as a regular mom's, in many ways it's not. I can't begin to explain how hard it can be sometimes. Sometimes I'm exhausted from a rough week of doctors' appointments, or maybe you just caught me in a sad moment wondering if Jacob will ever live independently, or what will happen to him if I go first (sometimes this can be triggered by the smallest, most innocuous thing, like seeing a TV commercial or overhearing a conversation). If I am grumpy, snap, forget your birthday, cancel plans, or otherwise less than saintly, I hope you will just extend me some grace, and give me the benefit of the doubt.

I call them "triggers". They are everywhere. Just seeing a Grandma hug her grandchild, for me, can be a trigger. Seeing a picture of a new mom and her baby. A lot of it depends on how my day/week has been with Samuel...but they are triggers nonetheless.

5. Stop complaining about your kids. OK, we all get a license to complain about our kids sometimes (special needs parents included!). But please be sensitive to what you complain about to a special needs parent. One of my dearest friends with a typical and sensitive child would complain to me that her daughter had so many requests: she wanted her eggs cooked just this way, her pillow cold, her car window rolled down just this much. I told her that I would kill for Jacob to be able to tell me those things, so that I could do them for him. He's non-verbal at almost 4 years old and lacks the motor skills for enough sign language or the iPad (for communication apps), so it's painful when I see him so frustrated and unable to express himself. Don't complain to a mom of a non-ambulatory child that your kid ran around and knocked over your favorite vase. Save those complaints for your other friends, or don't make them at all. Because know that your complaint about your child might be our deepest wish for what our child could do.

This once caused me to run out of church crying. I didn't want to cry in front of the other mother, as to belittle her problems. But after having a very difficult week of trying to communicate with Samuel, I couldn't hold back the tears while listening to her complain about her children talking too much.

6. Ask me how I'm doing. Often the focus is so much on our special needs kids, that the parents are overlooked. And guess what? We are driving the boat. Without us, our kids would be in trouble. The parents need tending to as much as the kids do. My friends often ask me about Jacob (see #7 here for a more helpful way to ask), which I love, but it would also be nice if occasionally they asked me about how I'm doing -- not in my career, or my hobbies or dating life, but how I'm doing in this role as a special needs parent. I don't often get to talk about how hard it can be, or how I'm tired, or how I had a good day or bad day. It might just be me, but a sincere "How are you doing handling everything?" once in a while, and readiness to hear an honest answer is all I need to feel like someone cares. Alternatively, sometimes it's just good to talk about other stuff ... so please go with it if I do.

7. Coercively pamper me. I don't know any mom, special needs or not, who will say no to a beautiful bouquet of flowers or a massage. I learned the hard way as a single parent that no one was going to pamper myself but me, so I got good at treating myself (if you're a single parent, read this to learn how to take care of yourself). And my son is much better for it -- he has a happy and energized mom who feels grateful that blue cheese tastes so good, or that her nails look nice (for some reason I always feel like a happier mom when I'm a little more put together!). Call this a shameless plug for more treats in life since the world's cards are stacked against us. A little treat with a note like "You do so much for Em, just wanted to make sure you're taken care of too" will probably do wonders for a parent's day, or week.

8. See my child. Don't stare. But also don't look away or avoid. My deepest wish is for you to see my child the way I see him. Look into his eyes. Observe him with love. See him. Get to know him. Include him, hang out with him, get your kids to do the same. Learn how to treat him with dignity and the profoundest respect, because a wise woman once told me that in some cultures, special needs children are seen as the human form closest to perfection and God, because they are no longer here on earth to learn, but to teach. In these cultures, the elders all bow down when a special needs child enters the room. Oh, but that we might become one of those cultures! One of the most hurtful things for me as a special needs parent has been seeing others, even my friends, uncomfortable or awkward around my son. Please find a way to start really seeing and loving my child. It might start with spending more time with him.

9. Support my cause. At the very least, you can support my cause. I might not be close enough to some people in my life for all of the above points to apply, but it's meant so much to me when colleagues donated or ran to support my fundraising efforts for my son's school. You can speak up when other people say things like "retarded," "short bus," or "as long as it's healthy" and explain why it's insensitive. You can stop bullying or teasing if you see it. You can stop being impatient with the checkout clerk who seems to be moving more slowly. You can stop gaping or making rude comments at kids who look or behave differently out in public. You can stop making fun of disabled people (it sounds horrible, but we do it much more frequently than we realize)--or pitying them. You can cast special needs kids in advertising campaigns, TV shows, movies (hint: Jacob loves the camera, he's a total ham!). You can make an active effort to have special needs kids be a part of your typical kids' lives. You can get to know us.

Moreover, you can stop seeing people's worth in their abilities -- their intelligence, talents, looks, achievements. You can start doing what's actually the harder but better thing: knowing and loving them just where they are.

That's what my son has taught me to do.

That's how I hope you'll come alongside me.