No Time for Losers–We are the Champions of the World!

A Personal Story about Down’s Syndrome 

It’s not often that I share personal stories with my readers, because this  blog is designed to bring awareness to the world about our lives here in the wetlands of south Louisiana and to educate folks as to why restoring these wetlands is vital to our way of life and culture. Sometimes everyday life gets in the way of my blog writing, and on this occasion, I hope you will indulge me by allowing me to share with you why it’s been over a week since I’ve written a fresh, new post.

It’s because one of our children has celebrated a milestone in his life.  He is the next to youngest and so different from the other four, yet in a very special way.

A Special Child with Down’s Syndrome

You see, I’m talking about our son who faces more challenges in a day than many of us face in a lifetime.  We can thank an extra chromosome for that.

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Miah enjoys slide at age 2 – 1994

With that extra chromosome come trials, challenges, struggles, defeat, victory, and pride. The struggles seem more ours than his, but the pride is shared by all who’ve had the privilege of touching his life on any level.

We call him Miah, short for a  big name given to him by his father in the surgical theater upon first seeing his little face after being removed from my body in the wee hours of December 14, 1992.

Not being one in favor of pre-natal fetal testing, I refused the screening for abnormalities for fear that an invasive amniocentesis wasn’t far behind.  Even if the screening indicated an abnormality, we would not have terminated the life, and I most certainly would have worried the rest of pregnancy about the degree of challenge this baby would face. We also never wanted to know the sex of our children revealed by unnecessary ultrasound.  This pregnancy was no different from the others–we would accept whatever was coming our way.

A prolonged labor, atypical of the three previous natural birth experiences, signaled something was awry with this delivery.  An x-ray revealed that this baby’s head was hyper-extended, with the eye sockets presenting first.  (Babies are typically born face down, with the crown of the head presenting first.)  Because his neck was tipped back, he was not able to properly descend into the birth canal, resulting in an emergency C-section.

With The Captain close at my side, the procedure went quickly, resulting in yet another son.  Once he was swaddled and placed next to my face for me to see and kiss, there was a hush in the operating room like one might imagine upon witnessing a miracle.

At the time, I didn’t know the reason for the reverence, but it now makes me wonder if the medical staff were holding their collective breath to see if we would indeed accept this blessing–a bundle of  joy that might bring more challenge than rejoicing.

It was in that silence that The Captain heard the words in his mind, “Jeremiah. Jeremiah. His name is Jeremiah.” Thinking wishfully, I had only chosen a girl’s name, and how odd it seems to me now that we didn’t have a boy’s name prepared.  No matter, for his Creator knew his name.

The stillness was quickly broken as they whisked him away to the Nursery, The Captain close on their heels to stay by our baby’s side.

While still on the operating table, I was oblivious to what was going on in the Nursery as our family doctor performed the necessary assessments.  At one point, they made The Captain wait in the hallway, which he did reluctantly.

When Dr. Guidry finally came out, he told The Captain that the baby was fine, except that there might be a slight problem.  “The baby appears to have Down’s Syndrome.” To which The Captain replied, “So?  Can I hold him?”

Without a moment’s hesitation, unconditional love took over, and a father fell in love with a son whom the world might have years ago deemed a Mongoloid, requiring institutionalization.

As I lay in my hospital room waiting for the nurse to bring the baby to me for his first feeding,  our other family doctor, with less of a bedside manner than Dr. Guidry, came in and told me flat out, without couching it at all, that our baby had Down’s Syndrome. The words fell flat, clinical, bouncing off my ears and landing somewhere on the cold, terrazzo floor.

My mind was numbed by the impersonal delivery of the message of a less-than-perfect baby, but my heart knew only that innate yearning of a mother for her newborn–to gaze upon his pinched face, his pink bow-tie lips, to count his fingers and toes, and feel his breath up my breast.  I asked that they bring him to me right away.

Undeterred by the well-meaning nurse who said “these kinds of babies can’t suck hard enough to breastfeed,” something inside me said “don’t listen to them”.  So I obeyed the voice and paid no heed to the professional naysayers who were just doing their job to prepare me for the worst.

If the worst is what you expect, then it is the worst ye shall receive.  No, that’s not from the Bible but from some Infinite Wisdom imparted to me that moment on behalf of this new life, whom we later learned had a severe allergy to all things dairy.  Again, his Creator knew that fact and provided.  He and I persisted and showed the nurses yet one more miracle–a baby with Down’s who could breastfeed normally.

By the time Dr. Guidry stopped in again, The Captain and I had bonded deeply with Jeremiah, and nothing he could say would discourage us from loving this baby as the others.  Surprisingly, his words were the most supportive we’d yet heard.  He said, “There are different levels of development with these children.  They are often born with a hole in the heart, but his heart sounds good and strong.  The best advice I can give you is to treat him just like the other three.”  It was sage advice, indeed.

A friend who was living with us at the time, Miss Cathy, brought the older three children to visit us in the hospital room later that day, where they took turns holding their new sibling. David, our oldest son, age seven, stood by my bedside, looking rather forlorn.  With tears running down his cheeks, he said, “I wish it was me who had Down’s Syndrome and not my baby brother.”

My heart melted.  Big Brother.  Protector.

On day three, I was being discharged and was told Miah was jaundiced and would have to stay until his bilirubin count went down.  There was no way I was leaving without my baby.

Refusing to be discharged and knowing that days without breastfeeding would not be good for him or me, I stayed. Determined that he have every advantage the other three had, I stayed, knowing full well that we would have to pay for the extra days in the hospital ourselves. So be it.

After the fifth day in the hospital, they let us go home, assured we had rented a portable “bili-light” to continue to treat the jaundice at home.

Home from the Hospital

Once home, LilSis, toddler in tow, came to help take care of us, as The Captain had to return to work.  Also waiting for us at home were gifts for Miah.  The most thoughtful was a “lambie” for the baby and a book about Down’s Syndrome for me from my friend, Sue.  Since I knew very little about Down’s, I consumed the book during my convalescence.  It was Sue who wrote the words to me that meant more than she would ever know, “Jeremiah is perfection in the imperfection.”

Christmas was rapidly upon us and a visit from our missionary friends, Tim and Vance, who also brought Jeremiah a gift, which we promptly hung on the wall.  It was an image of a little boy with this inscription,

I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”  Jeremiah 29:11

Influenced by Laura Ingalls in our reading of “The Little House on the Prairie” series, Dotter, age ten at the time, had asked if this could be her baby.  The fact that he had an extra chromosome made no difference to her other than the fact that she would dote on him even more than seemed humanly possible for a child her age.  She changed diapers, sang to him, rocked him and was the best ten-year-old mom ever, which explains their deep bond today.

The three siblings made sure Miah never lacked for attention.  Dan, age five at the time, just wanted to hold him and continually marveled at his tiny fingers.  As the months went by, Baby J’s development was at the low end of the charts, which we promptly ignored and engaged instead in life according to Jeremiah.

He grew and developed at his own rate, dazzling us with every new feat he accomplished. He defied many of the odds by walking by the age of two and babbling baby words around the same time.  In my mother’s heart, I knew he would one day talk.  Meanwhile, Dotter taught him American sign language for thirsty, hungry,  and full.

Educational Challenges of Down Syndrome

When he turned six, we tried putting him in public Kindergarten.  Bear in mind that he was tiny for his age and not very verbal at that time.  He was placed in an “inclusion” class, but it didn’t take him long to figure out he was being excluded.  They had him at a little table in the back of the classroom playing blocks, while the other children learned their letters and sounds at their group tables.

When the teacher called me, distraught that Miah was “acting out”, I knew that was his way of communicating his frustration.  She said he had put the paper from his straw into her milk carton while she wasn’t looking during lunch, and that after she fussed at him, he wouldn’t stay in line and ran down the hall to the classroom.  The older siblings and I had a good laugh about the prospect of him being sharp enough to sabotage her milk while she had her head turned.  It still brings a smile when I think about it.

The next day, he refused to get on the bus, signaling the end of  his Kindergarten career. Since I was a home-school mom, and the older three had never been to school, what made me think that strangers could better understand and better educate my special son than I?  Didn’t he also need that specialized, solid foundation that home-schooling offers?

So, I pulled him out, and together, his siblings and I gave him the best education we could. We taught him phonics, and he learned to read; the alphabet, and he learned to write. Eventually, he learned danger and safety, abstract concepts hard for any child to master. Slowly the sign language was replaced by verbal expression.

At the ripe age of 13, the same age at which the two older boys balked at having me as their mother AND teacher, he began to bristle at my instruction.  It was then that I knew it was time to put him back in public school, which I did with much fear and trepidation.

Jumping Public Education Hurdles

By the end of the first week, he was crying not to go to school and again refusing to get on the bus, shouting,  “Not going back!”  After observing the class and being bored out of my mind with work sheets by 9:30 a.m., I knew I would have to intervene for my son, or bring him back home.

By some miracle, the proper reading program found us, I convinced the Special Ed Department to purchase it, and convinced the principal to allow the teacher’s aid to teach it.  I made it very clear that he was on loan to them, and that I expected them to help him learn and to stimulate his brain as long as it was was malleable.  (When you use big words appropriately, educators tend to listen and know  you mean business.)  In no uncertain terms was I interested in glorified baby sitting, because he could get more than that at home.

It wasn’t long before the new middle school principal, Mrs. Degruise, was visiting his classroom and reading to him every day.  She’s a wheel in the cog of Jeremiah’s education, for which we are most thankful. The next year, Mrs. Theriot came along and was the teacher’s aid who was so smitten with Miah that she learned the new reading program and taught it to our son.

Of course, this is the short version, and I’ve had to continually advocate for the things he needed during his seven years in public education.  Whether it was budget or manpower shortages, I refused to accept no for an answer.  It wasn’t all pulling teeth though, and I must give positive credit where credit is due.

During his junior and senior high years, he had fantastic, highly-dedicated  teachers and teacher’s aids who taught him “community-based instruction”, which included life lessons like how to ride the city bus, order from a menu, plan a meal, buy the groceries, and cook a meal.

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Miah cooking in the classroom

As you well know, the teen years are often the most difficult for normal children, and special-needs children face the same “hormonal” challenges, on top of their exceptionality.  For this reason, we will be forever grateful for Mr. Tim and Mrs. Monica, Mr. Peter, Mrs. Nicole, and Coach Mike, who believed in Miah’s potential as much as we did and have always worked with us to push him when he needed it and be patient when the tears flowed.

Educational Milestones for my Down’s Syndrome Son

Even though Miah can stay in the public high school system another two years, he informed us last year that he would be graduating this year, and he has not wavered on that stance.

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The Graduate – 2013

It is with great pride that we announce to you that Miah graduated this month from high school, and just like a typical kid, he enjoyed all the perks of being a senior.  There was the Academic Awards ceremony, the United Houma Nation awards ceremony, and of course, we can’t forget Senior Prom.

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Miah and Mr. Peter after the Academic Awards Ceremony at school

 

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Miah receives Certificate from United Houma Nation

 

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Ready for Senior Prom

 

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Two girls dance with Miah at Prom!

 

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Mr. Peter congratulates Miah after graduation

 

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Mrs. Theriot, the teacher’s aid who continued his reading training in middle school, hugs Miah after graduation

As the graduation cards and gifts came flowing in, they paled in contrast to the prom, where he was the first one on the dance floor and danced, non-stop, for three solid hours.  I don’t think there was a student in that room who enjoyed prom more than our Miah, and he was so dapper in his white tuxedo!  All the way home he switched back and forth between “Man, my legs hurt!” and “I had a great time!”

Post High School Options for Down’s Syndrome Students

Even though this phase of his education is over, it is not the end of learning for this young man.  Not convinced that going straight to work in a sheltered environment, doing a little menial job over and over for hours each day, was the best course of action for him, it appears we are once again forging new territory.

On the way home from one of the awards ceremonies, out of the blue, he said to me, “I want a cooking class, Mom.”

In the past few weeks, it occurred to me that “normal” students are offered transitions from school to work, so why aren’t these special kids offered the same?  In their senior year, some normal students have the option to go to class a couple hours in the morning and then go to work the rest of the day.  Others graduate and go on to college, which is also a transition from high school to the work world.  So, I started asking the professionals this question, “Why is there no transition from school to work for these kids?”

Just as Someone has always been a step ahead of us in providing for Miah, this phase of his life is no different.  In one week, I was able to consult with, get advice from, and convince folks at every level necessary that there had to be a “transition” from school to work for him, even though such a program does not exist.

Now, we are happy to tell you that Miah will have the desires of his heart:  a cooking class.  When school starts up again in August, he will return to his Alma Mater, but this time, as a Food Services student at Vo-Tech.  The teacher of the Food Service class and I have discussed having him enroll there in August, and she has expressed her genuine excitement about having him as a student. We are calling it “cooking class” for him, and he is just about as excited as he can be.

There is no doubt in our minds as a family that Miah’s Creator has been watching out for him every step of the way, just as the above scripture states.  From the Hawaiian Early Learning Program that my friend Sue sent us, to the home-bound teachers who came and taught him from ages three to five, and to everyone who touched his life from then until now, please know that this was all part of the Plan for this special young man’s development, and you were each a part of that plan.

Contrary to what most well-meaning folks have expressed, it is not Jeremiah who is blessed to have  family and friends like us, but rather, we who are blessed to know him and to share in his life.

He is a joy and a blessing, and I hope that one day I can report to all of you that he’s working in a local restaurant or maybe even helping to manage his own.

What is there to stop him?  (see video below, please)

BW

Miah Graduation 2013

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Comments

No Time for Losers–We are the Champions of the World! — 68 Comments

    • Dakota, what a wonderful name! Well, then, CTV, you know that of which I speak! Very, very special blessings, aren’t they? Thanks for sharing that little tidbit with us, too!

    • Thanks for the encouraging words, Crystal. It just takes my paying closer attention to his cues about what he wants and needs. Some times I’m so busy with work, etc. that I’ma little slow on the uptake!!!

    • Appreciate the kind words, Laura. some people feel sorry for a family when a child that is less than perfect enters it, but I think it is we who are the fortunate ones for being allowed to experience life with someone who has way more than we do in that one extra chromosome.

  1. Ye can tell Miah he looks very “GQ/James Bond” in that white suit – that’s a great photo of him! Glad to hear he will be pursuing something he enjoys…and look forward to “Chef Miah”.

    • I will certainly tell him. And he informed me that he is going to be a CHEF soon!!! Dotter dreams of their having their own restaurant. I will dream that along with them!

  2. Congratulations to Miah and to his family for giving him the love to grow him into a “man”. I loved your story. I joined your blog when I was looking for information about Vibrio bacterial infection. I’ve enjoyed following your blogg.

    • Yes, I think I recall our exchanging vibrio war stories! Thanks for following and coming back to read and taking the time to leave comments. that’s what makes this writing this blog worthwhile, Sharon!

    • Well, as LilSis, you know I only hit the high points!!! Thank you for being here when I needed you, and your plate was already full with a toddler with her own special needs.

  3. This is a beautiful story. Miah is blessed to have you as his mom. You are blessed to have Miah as your son. I am blessed to call you my friend.

    • You’re too kind, Nancy. I hesitate to put in writing some of the thoughts that were expressed during some of the decision making. I in no way wanted to insult anyone who has chosen classroom teaching as their profession. I admire you, and others like you, more than you know; and God knows I could NEVER do what you do!!!! Hat’s off to you, Nancy! I’ll be sure and look you up next time I’m up north.

  4. Thoroughly enjoyed reading about Miah. I remember when he was a young child growing up with us, though I was older and closer friends with David. He’s a very special young man and I would love to be a taste-tester any time he’d like to have me. Congratulations to him on his wonderful achievements!

    • Megan! I thought I recognized your name! I’m still wondering how you ended up finding my blog, because I noticed when I looked you up last week that you are on blogspot. Very impressive, young lady!!! Thanks for chiming in and reminding me of who you are! I’ll visit your blog more often now that I’m sure it’s you!

  5. This is such a beautiful story. Thank you for sharing it, and photos of Miah and his activities. It is all so touching.

    • I’m sorry it’s so lengthy, but how do you capsule such a big life into 1200 words? There were some other life-changing things that occurred during his lifetime that really aren’t relevant to his graduation story, but I tried to pick the most important highlights! Thanks for continuing to visit here, read, and comment, Carolyn!

  6. Miah was a highlight of my day when he was at HJH. He always had a smile and still does when I see him at church with Rachel. He used to stay with me in my Algebra class and work on his math when Mr. Tim was out. Glad I had the privilege of seeing him everyday. Congrats!

    • Yes, Donna, you are one of those peripheral folks that matter as much as the rest, many of whom I’m still not sure of! Thanks for taking such good care of Miah when he was entrusted to your care!

  7. This is so wonderful. I also have a special needs son. He will graduate next yr. He’s been out of school for 1/2 the school yr due to 2 broken feet and countless surgeries. He misses his friends but I have promised next yr will be his yr to graduate and go to prom. He’s so excited, so loving,with the biggest smile and heart ever. He cant wait to get back into his special olympics too 🙂 Congrats again to Miah. We also gave my son a special name when he was born–Matthew, but we call him {{ mihan}}. Hope you and your family have a great and awesome summer.

    • Yes! Tell him to hang in there. Thank you for sharing about your wonderful son. I don’t know how they face their trials and smile like they do. We could all take a lesson from that, right? Best of luck to both of you and blessings beyond belief!!!

  8. Congratulations to your son and entire support team…have been caring for a kid brother with autism for a great many years and it’s inspiring to hear these success stories….as I’m an old hard boiled N.Y.er I will not admit to crying but suspect I had something in my eyes..

    On a different topic..do you have any older single sisters that can back up a boat trailer and tie a palomar knot?

    • Ha ha, you’re funny! Something in your eye, you old hard-boiled New Yorker? I have an older, single sister but she can’t back up a boat trailer, nor can she tie a palomar knot! But she can cook!

      • HMMM. she can cook you say..I could be persuaded to overlook her obvious flaws relating to boating and fishing but she’d have to demonstrate her talents on shrimp scampi,baked ziti,chicken cacciatore and a slice of home made N.Y. cheesecake..
        None of that crawfish stuff…
        Fedex overnight will work..
        Again..congratulations to your amazing son,you and everyone that encouraged his success..

  9. “Jeremiah is perfection in the imperfection.”

    I didn’t know….thank you for sharing your heart.

    I am amazed that it meant so much to you. I am thankful that I was able to encourage, to hold you steady, and to believe in your ability to teach Miah to read.

    Great job guiding a special young man!

  10. I believe God only gives special children to those parents that can and will love his children as He would. We also have special needs children in our family and can relate to all the trials and tribulations and joys and triumphs! With His love and guidance, we shall overcome ALL obstacles in our path!

    Kudos to Miah for sticking with his studies and working hard to achieve graduation! Graduation never happens for some kids who don’t even want it or just throw away their education due to other circumstances or mindsets or lack of parenting, etc. And kudos to you also Wendy and your husband for raising such an awesome son who will one day (with hard work and dedication – nothing new to Miah!) become a contributing member of our society/parish.

    Congratulations Miah! And also to you, Wendy, one very deserving proud Momma! 🙂

    • You make a good point about kids who throw away opportunities of high school graduation. Some days it was quite a struggle for Miah. I never knew when he might be having an off day, and refuse to go to school. The schools make no exceptions for these kids in regard to unexcused absentees, either. For a while, he had problems with chronic sinus trouble (due to the underdevelopment of the sinuses), although there was no need to take him to the doc for every incident. It was enough to keep him home, though, resulting in my getting a very threatening letter from the Truancy officer saying that he would be considered truant after so many unexcused absences. We were finally able to get a letter from the doctor stating the situation. That letter had to be renewed every year, too. Just to say, there’s no leeway with these kids. I guess if you want them treated like everybody else, then it will be that way straight across the board. I wish every parent could have one child like him. They are a lot of work in their formative years, and the tendency is to feel sorry for them and spoil them, but that doesn’t help them be the best they can be. There are heartbreaking moments like when he reminds me that he needs his driver’s license. He wants a car. He wants to go to college. But the rest of the time, he is so content, and I’ve said it many time: He is the EASIEST son I’ve had. Keeping him home to pattern the behavior of his siblings was the best thing I could have done for him. Thank God for the infinite wisdom given to us when we need it.

      • Very true! Spoiling and feeling sorry for your special child will give him/her no benefits for his/her life lessons. A driver’s license! Wow! Can I suggest bringing him to the DMV and get him an identification card with his photo on it. Even though it is not a driver’s license, it is something important for him to have when he will be out in the world – without you! A wallet for him to keep it in and a few bucks will make him feel more grown up and have him be responsible for keeping it with him at all times and keeping track of it. Then, one day, when he has graduated from his cooking lessons (college) and he wants to be a cook somewhere at a restaurant, he can ride the bus system to and from his new assisted living home and his work place!

        I know, I’m talking about things that are very far in the future and may not even be a possibility (right now), but I believe with your precise guidance, he will get there one day.

        Trek on my friend! And, don’t forget to stop and smell the roses along the way too! <3

        • Well, Dotter has been after me for over a year to take him to get his ID. I’m a procrastinator. I also fear he will think he’s getting a real license and just haven’t been ready to deal with the fall out from that. He has his wallet, AND his cash! We’ve been doing that for several years in conjunction with his “community based instruction”. He buys his toiletries, etc. during class trips. All good ideas, though! Thanks!

  11. Reading, not only knowing, Miah’s life story literally uplifted my heart. My chest actually lifted upwards. He is the sweetest guy! What a happy young man he is. He always makes me smile because usually he’s smiling. It’s going to be fun watching him progress through the culinary world. Go Miah!!

    A great big hug from me to you for putting all this down for us to share.

    • It did my own soul good to see an overview of how God has continually provided for this child. He really is such a joy, and he’s such an easy kid to please that he has often gotten overlooked. Well, it is his time to shine, and I hope to help him do just that!

  12. Congratulations Miah!….and to you, BayouWoman, as well. You have been an incredible mom to Miah and all of your children. Giving up just is not in your nature. Blessings to you all….

    • Well, with the five successful children you’ve raised, I think you must know a thing or two about God’s wisdom and rearing great kids! Glen brought me up to speed on each of them when I talked to him at the Floating Island Marsh project back in April. Thanks for the kind words–means a lot coming from you, Melinda.

  13. I read Miah’s story and it is so wonderful and a great inspiration for others who have family with special needs. I would be honored to dine at Miah and Dotter’s restaurant in the future! And, I have a feeling they will pull it off!!

    I agree with Darlene, God only allows specially chosen families to send his special children to and your family was one of them. You have given your all to making sure he gets what he needs to learn and fulfill his dreams. Wish every child had a parent like that. And his siblings have been right there beside him with encouragement from day one!

    Congratulations Miah!! Loved the video and the photo of you in your tuxedo! Spiffy!

    • Thanks so much for your kind words, Cammy. I haven’t always been the best mother, but I guarantee you, Dotter has taken up my slack with this kid, especially when she still lived with us. when she left for college, he missed her as much as I did! She still makes sure he goes neat places like Blue Man Group concert, musicals, plays, the movies, Disney World, and this summer they are going to Sea World in San Antonio, the Alamo, and Fiesta Texas! Now, isn’t that a great big sister?

      • Would Dotter like to add me as a big sister? I would love to go to some of those places. 🙂 She is one great lady too. But, she has you as an example.
        Hopefully, next year with the new knee, I’ll be able to do some riding and walking.

  14. Congratulations Jeremiah I know you have worked hard to get here. Now the fun begins learning to use what you have learned. Even though that white suit you wear looks good, I still think you look cool in your Saints jersey.

    Congratulations BW, it takes a really special person to guide an angel.

    • Well, I don’t believe it takes a village to raise a child, but I do think it takes a group of cool kids like mine to love and help raise a sibling like Miah. My kids are still close, and for that, I am very, very thankful. Staying home, teaching, training, and disciplining my “blessings” was my full-time job, which I took very seriously. As adults, the older three are beginning to see more of the inner person I am now, and not just the mother that taught, punished, loved, and spanked them. We never see our parents as real individuals until we reach adulthood, and this article really opened the eyes of my two adult sons to that fact. I’m glad I took a little side track with this post and shared a part of our lives with you.

  15. CONGRATULATIONS TO MIAH AND FAMILY!!!!!!!!!
    That was a great post and yes I cried. I grew up with a special needs person and their milestones should always be praised. This past week-end I visited with a family with a very handicapped son that I babysit with almost 45 years ago and he remembered me. Man that made me feel Wonderful. Mike is brain damaged and also in a wheel chair but the light in his eyes brought tears to mine. Congrats again!

    • Oh, how special is that, Judy? sometimes I think special people are the fortunate ones, and we are the unfortunate saps. It’s all in perspective, I guess. Thanks for sharing this!

  16. What a tear jerker! Thanks for sharing your story. It just proves what a determined woman can do and how the Lord provides. May HE continue to bless you and Miah.

    • Well, Linda, it really wasn’t just me. Dotter played a big part in his development and his love for life. She is such a joy in her own right, and worried about him when she left for college, just like a mother hen. Sometimes, I truly felt like she had entrusted her child to me!! And to be quite honest, he has always preferred her over me, and that’s okay, because there may be a day when he is with her full time. I couldn’t have asked for a better sibling relationship!!!

  17. I remember reading a post you did about 3 or 4 years ago recapping a “Bayou” field trip with his classmates on your pontoon boat. I was moved then…this post tops the other. Linda’s first sentence says it all. Congrats all around. I’ll be at the grand opening of the sibling eatery.

    • OH OH OH!!! Maybe you just named the place: THE SIBLING EATERY!!!!! I LOVE IT!!!! (I don’t often write in all caps, so you know I’m excited right now!) Yes, I took his junior high class on a wetland tour, and he has asked me several times to take his class again, but transportation from the school to here is some kind of liability issue. They won’t bring them on a huge school bus because it’s only six kids. Oh well . . . . thanks for the congrats!

  18. Congratulations Miah! I first met Miah when you came to my classroom to read your book to my second grade students. I can’t believe that he’s all grown up! I’m looking forward to hearing about his cooking adventures. I know he’ll love it.

  19. What a touching, marvelous, smile-producing story. On the other hand, as I read, I couldn’t help think of all you weren’t including here. Anyone who raises such a special child, who has to learn to cope with unexpected disabilities, takes on the care of an aging parent and so on knows how much is left unsaid about the frustrations, anxieties, drudgery, and exhaustion that’s also part of the story.

    The wonder is that we’re able to move through it, and to taste the joys of such events as Miah’s graduation. I have no doubt that there will be plenty of challenges ahead, but there are going to be new successes and new delights as well.

    I’m sending along a whole bunch of hugs – for Miah, for you, and for your whole (extended) family, including the teachers and community members who helped make this possible. And thanks for giving us this wonderful look into your lives. Too long? Hardly. It could have been much, much longer and I would have read with delight.

    • Yes, you are right on the money with what isn’t included here, like back when we lived in town and someone called Social Services on me. He had learned to run and would slip out the storm day any time it didn’t latch tightly and run down the driveway giggling with glee while one of us chased him. To him, it was great fun. To us, it was fun to chase him because it was a miracle that he could run!! But some well meaning person (or person with no life) misinterpreted this as “playing in the street”. Well, in an older, established neighborhood with wide streets offering no sidewalks, children on every street rode bikes, skateboards, and roller skates in the street, but J was never, ever allowed to play in the street. I’ll just say this–the things that followed between Social Services and this dedicated mom weren’t very pretty.

      Of course, I’m sure you were talking more about day to day frustrations, anxieties, etc. But I had the older three children with which to share the care giving. I think our biggest struggle was getting him potty trained all the way and convincing him that the indoor slide at McDonald’s was NOT the place to do Number 2. Let’s just say he cleared out the joint more than once!!!!!

      Oh, it is such a wonder that we’re able to move through it and taste the joys. Thank you for reminding me that there are yet new successes and delights ahead. I think that’s what was weighing so heavily on my heart the week before he was to finalize his application for TARC, where he would basically have been a little robot. I just kept feeling like he was going to rot if I put him there. Cooking class will be a challenge, and I pray he is up to it. If not, we will go back to the drawing board to see what else might work for this outstanding young man.j

      Now, get your fanny in gear and head this way!

  20. What an inspiring story about an exeptional young man and his loving family that wouldn’t take ‘No’ for an answer, when presented with nay-sayers or obstacles.

    Congratulations to Miah on his graduation and I wish him the best of luck in his future endeavors.

    P.S. What a sharp dressed man he was in his tux!

    • Gue`, he certainly was a sharp-dressed fellow in that tux. It was so funny when we left the dance, because he was wearing rented dress shoes, which he NEVER wears. He was limping so badly, but the pain didn’t take away from his joy whatsoever. He’s just such an amazing young man, and I’ve often wondered through the years why society feels sorry for these children. I think they have it way better than the rest of us, and we’re just too dumb to see it.

  21. How awesome for Miah! God truly knows the desires of Miah’s heart. I wish for him much joy and many blessings as he goes through life. I know you are one proud mama!

    • It’s so great to hear from you! I wondered if I lost you or you’ve just been lurking and not commenting! Yes, I am so proud, but more than that I’m just in awe of our God has worked all this out. It is just an example of God’s pure love toward such a pure soul. Don’t be a stranger, Mamabug!!!

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