Thursday, May 28, 2015

Moise Moment: Farewell Tremont Schools

"You don't have to see the whole staircase, just take the first step"

Ten years ago, Moise started school in an Early Childhood classroom at Tremont Elementary. Since that day he has grown and blossomed under the careful teaching of the faculty - teachers, aides, therapists and administration- of Tremont Schools.  He has learned things that I never imagined he could learn.  He has been loved and accepted as a part of this school and this beautiful community in which we live.

Through the years, my heart has been warmed over and over by fellow students who see him around town and rush to greet him.  I love hearing exclamations of "There's Moise" or "Hey Mo" or "Give me knuckles, Mo." I love that the children aren't afraid to touch the boy in the wheelchair, the boy that makes strange sounds, and laughs when nothing's funny.   Over the years, teachers have shared countless stories of children who bicker over who gets to sit by Moise or push his wheelchair.  There are classmates who will give up their lunch time with peers to eat with Moise and his less than proper table etiquette. Yesterday his communication notebook came home with a note that said the kids in his class were telling about their favorite things about Mo--his smile, his kindness, his love, his sign language, his "knucks" and his laugh.  Today's notebook said "Mo won a race with his bike today and his name was announced over the loud speaker." The sentence twisted my heart into a happy, painful knot because I know, beyond a doubt, that the only way Moise won any kind of race, even on his bike, is if the other children graciously allowed him to be victorious, a beautiful testimony to the compassion of his classmates. These are young people who know that sometimes there are more important things than winning. 

  Today was the last day of Moise's seventh grade year.  It was also the last day that Moise will attend Tremont Schools.

  It grieves my heart some, because Tremont feels so incredibly safe.  There was comfort and security in knowing that there was always someone that I know well around every corner in the Tremont schools.  I know also that our little school is filled with young people, those who have grown with him, who would fight for Moise if need be. This little village that we call home has been an intricate part of Moise's growing and developing. 

I knew that this day would come eventually.  Every spring, Moise's educational team and I gather around a table to discuss goals for his upcoming year.  Many years we have toured other special ed classrooms to see if there is one out there that might better suit him.  And every year, when it's all said and done, we all (teachers and therapists, Jim and I) come to the conclusion that Tremont is the best place for him.  Until this year. 

The past two years have been rough for Moise on so many levels.  The vision loss has further complicated an already complicated life.  Moise has adapted somewhat to the vision loss, but the fact remains that he is both deaf and blind, in addition to being wheelchair bound.  We've pushed hard from an academic perspective, always blown away by how brilliant he is.  But he has plateaued in this area.  He continues to learn,  but as academic concepts become more abstract, they become increasingly difficult for him to grasp.

He's fourteen and in the world of special needs fourteen is the magical age at which we begin to prepare our kids for transitioning into adulthood. We start asking the questions, "what will he do when he is no longer able to go to school?"  "How are we preparing him to function in life?"
Tremont, population 2,200, does not have a large number of children with severe or profound disabilities and, as a result, does not have a functional life skills program that is equipped to meet Moise's wide range of needs.  In March we began researching schools in our area that have great life skills programs. There were three school districts that looked like  possibilities.   However, upon contacting these schools,  we were told that they didn't have the resources to meet his needs.  The deaf/blind component is a tricky one and we're finding that most schools, at least those around here, really don't know how or aren't willing to handle it.  It's a sad day when your child is too special for the special ed programs. 

There is a school in a nearby community that is designed specifically for children with severe and profound disabilities.  Schramm school has been in operation for many years and they have an excellent life skills set up.  We have toured Schramm before and there have always been aspects of the program that were undesirable. Our greatest concern about a school like this was that Moise would be underestimated and therefore limited in his progress.  But they are restructuring their program this year and after much deliberation we have decided to try it for next school year. I asked the director if Schramm has had any other deaf/blind students and the answer was "No."  There have been some deaf and some blind but not both.  But there are hearing and vision consultants that come regularly to Tremont to work extensively with Moise and both of their offices are in the Schramm school.  They are fully aware of what he is capable of and we are confident that they will guide the teachers in dealing with his lack of vision and hearing.  Most importantly, Schramm is a life skills facility.  It is equipped with kitchen and laundry where students can learn basic housekeeping skills.  There will be many outings, which will prepare him for better functioning in public.  He will also be assigned a job coach who will help prepare him for getting a job in the future.  The school has a therapy pool, which will be excellent, as swimming is really his only means of exercise. In a world where there is a great surge toward inclusion, we are a taking a step away from it in favor of striving for greater function. 

I am beyond grateful for the years that Moise was able to attend Tremont. It has been so sweet to have him in the same school that our older children grew up in.  The school and our community have given much to him. I believe that he, in turn, has given back to Tremont.  He has been a great teacher to many, adults and children alike. He teaches things that can't be found in the text books or on line. He has been the greatest example of perseverance that many will ever see.  He is living proof that life isn't always fair but even in the midst of unfairness, we must never, ever give up.  There is something about Moise that causes others to reach down inside of themselves and find all of the goodness that is there.  He puts priorities in perspective and helps us realize the truly important things in life.  Most importantly, Moise has taught many of the students and faculty of Tremont about acceptance and a love that knows no limits.

We feel confident that we have made the right decision. It's worth a try at least.  Still, it scares me a little.  Moise's entire future overwhelms me but we don't have to do it all at once.  Trying Schramm is the first step to the rest of his life.

God is good, all the time.

Sunday, May 17, 2015

Beauty, Pain and Everything in Between

Transition is a two edged sword.  So beautiful.  So necessary.  But every transition comes with some degree of loss. Sometimes the losses are welcome and sometimes they are painful.  Change always causes hearts to experience the gamut of emotion.

We've been bombarded with change and it's subsequent emotions this week.

Jamee graduated.
 Jade moved home from college.
 Grant  left for a long awaited, carefully planned 6,000 mile road trip.

Thursday morning Jim and I dropped Kruz off at Grandma Kathy's. She's not really his grandma but who's worrying about blood lines?  She loves him with grandma love and Kruz loves her right back. I take him there and I don't worry because, in that grandma sort of way, she's the next best thing to his mommy.  As we pulled from her drive and headed toward Saint Louis, I was grateful for her presence in our life.

We snuck into the arena at SLU in time to watch Jamee , donned in black cap and gown, walk in  with hundreds of other health science graduates.  I was so excited and so proud as she walked across the stage to receive her diploma.  A Bachelor of Science in Radiation Therapy.

My mind flipped through the pages of memories of the past four years. We agonized over the decision of where she would go to college, to run or not to run.   Decision made, she headed off. She was scared and I was an emotional wreck.   That first year was filled with many ups and downs. There were countless "how do I?' phone calls and some "I want to come home" calls too. But she grew and matured and came to love Saint Louis and her college. I grew too. I learned to loosen the apron strings, to trust her judgment, and give her room to soar. This week, amidst all of the pride and excitement there's also a fear of the unknown.  Will she be able to find a job?  Where will she and Caleb live? Will she love the career that she's chosen once she enters the work force? As I watched her interaction with other graduates, I sensed sadness.

 Over the last four years she has formed deep and beautiful bonds.  Relationships that have helped her form a different, broader view of life and ideals and love.  We can clearly see that her heart is breaking at the reality that she will never see some of these friends again.  Like her, they are moving on, some to other parts of the country, others to different parts of the world.

From Jamee's graduation we headed over to Lindenwood University to collect Jade and two car loads of stuff,  her life for the past year.  We found mixed emotions there as well. Excited chatter and laughter among her friends, but also a sort of clinging to each other.

 They've settled into college life and independence and now, suddenly, it comes to a screeching halt in exchange for life back home. There is a sense of looking forward to renewing old high school friendships along with uncertainty that comes from knowing that all of those friendships won't look the same.  Jade has changed, her friends have changed.  Will they pick up where they left off? She was glad to come home, but also not.  Joy in returning, sorrow in leaving.

And those two car loads of college life?  It doesn't really have a home in our house.  It's misplaced and chaotic. 

It causes overwhelm and mild irritation but I've learned, having experienced it several times now,  not to let it get to me. This is small stuff and we're not sweating the small stuff. We're grateful to have our daughter home and there's no way around bringing the dorm home with her. The disarray is temporary so we shove it into a closet or storage, awaiting August when it returns to college. 

In the midst of all Jamee's graduating and Jade's moving back, Grant was preparing to head out.  A trip, which he and his two friends had long dreamed of, was finally happening in the wee hours of Saturday morning.  They headed west with the intent to cover about 6,000 miles within a couple weeks time. My heart swelled with happiness for him but there was also worry.  Will they drive safe?  What if they got lost in the middle of nowhere land?  Did they take warm enough clothes for tent camping in the cold mountain temperatures?  My little boy is not so little now.  He's all grown up, a young man and he doesn't need me to pay attention to all of the details. I am beyond trilled for him to be able to do this. It's a once in a lifetime experience.  It's priceless memories being made.  And my boy knows me well.  He's sent me countless texts and pictures already.  He's letting me know he's okay, that he's utterly awed by God and His creation.

My heart is full. Life is beautiful.  It's painful.  It's everything in between.  

God is good, all the time.

Sunday, May 10, 2015

Happy Mother's Day

"I can't wait for you to come home."  That's the text I sent Jade yesterday.  She will be moving home for college near Saint Louis on Thursday.  I simply cannot wait.  Jamee will be staying in Saint Louis, finishing up the last couple months of requirements for her degree and preparing for her board of registry exam.  I miss her too, but am excited for the next chapter in her life. Both girls, as well as Brock and Grant, are doing what we have raised them to do. Spreading their wings, gaining independence, soaring to new things, becoming who they are created to become.

On this Mother's Day, I miss my two oldest daughters, I wish they were here, but I am confident that I will see them again very soon.   I can pick up the phone and hear their voices.  With today's amazing technology, I can even Skype or face time them and see their beautiful faces. I miss them, but I do know grieve for them. I know that our family circle is not broken simply because they are away.

But this Mother's Day, as every Mother's Day, I grieve my youngest daughter.  My arms, though full of so much love, ache for the child whose eye's I cannot look into, whose voice I cannot hear, whose hand I cannot hold.  Every day of my life I miss her but there are some days, like today, that the aching is nearly palpable.  Yet even through the sadness, I am grateful for the honor of being her mother.   Though I ache and grieve, it is not as one without hope.  I am going to see her again one day.  Until then, I will keep loving her, my beautiful Laynee Grace.

My own dear mother with her youngest granddaughter, Laynee.
Happy Mother's Day to mama's everywhere.
To those whose children walk this earth and those whose children left too soon.
To those whose children grew under their heart and those whose children grew into their heart.
To those whose children say I love you everyday and those who cannot or will not say it.
To those who raise children along side of fathers and those who do it all alone.
To those who parent their children and those who chose adoption. 
To those whose children are everything they ever dreamed of and those who've had to alter their dreams.
To those whose children are wildly successful and those whose children are in prison or on the streets.
To those to whom mothering comes natural and easy and those who find it's the hardest thing they've ever done.
To those who stay at home and those who go to work.
To those who serve meatloaf and apple pie and those who serve hot dogs and Hostess cupcakes.
To those whose hearts are filled with joy and those who ache with sorrow.
To all of the mother's who love in the best way you know how.  Happy Mother's Day. 

 Her children rise up and call her blessed
Proverbs 31:28

God is good, all the time.

Wednesday, May 6, 2015

Travel and No Regrets

Jim and I have been married for nearly 25 years.  Aside from our honeymoon, we went on only one other trip alone together before we started our family. Jamee arrived almost exactly two years after our wedding and then.....well..... life continued to happen.  We had another child and then another and another.  Then, when we thought our family was complete, adoption happened.

In the 22 years since Jamee's birth, we've traveled a lot.  We've seen wonderful, beautiful places.  We've visited cities and mountains and beaches.  But we've never traveled alone, just the two of us.  We never took weekend getaways or attended marriage retreats.  And, shockingly, our marriage is very much intact and very happy sans "dates."

I usually avoid telling people that getting away alone is something Jim and I have never done since we became parents. It seems to be the general opinion of our generation that a marriage without regular date nights and romantic getaways can't possibly be a good one.  If I do happen, for whatever reason, to mention this omission, people look at me in utter disbelief.

But here's the thing.  I've never felt like we've been missing out on something vitally important to the health of our marriage.  We didn't have the time nor the finances to take some trips with the kids and some without, so we chose to take them with us. We love, truly love, traveling with our children. They brought such excitement and wonder to every trip.  I have always been of the attitude that there will be time for Jim and I to travel together when the kids are gone. But the truth is, getting away alone is likely never going to be simple for us. We have two children who will, always and forever, need total and constant care.  I know that we will find ways to make it happen but it won't be frequent.

Last week Jim and I went on the closest thing to a get away that we've ever had.  Just one little catch.  Kruz went with us. 

Jamee was scheduled to run her last races of her career at the Atlantic 10 Championships in Fairfax, Va.  Jim and I booked flights for last Thursday and spent several days in DC and Virginia together. We made time to get to the track meet on Saturday and Sunday but otherwise spent the time together, with Kruz in tow.

Preparing for the last race of her 12 year running career. 

And just like that, it's over.
She finished her career year with the best times of her life.  A second and sixth place finish at the championships.
It's happy and sad.
 Kruz is quiet and laid back and an excellent traveler so he certainly was no problem to have along.  He doesn't talk back or ask too many questions or hear things we'd rather keep private.  He sleeps a good twelve hours at night and rarely cries and is, basically, the best little boy that I've ever known. So while we weren't officially childless, it was the closest thing.

He was totally and completely infatuated with the little friend he found in our hotel room mirror.  Most of the time in our room was spent right here with his buddy.  Poor child desperately needs playmates. 
What we found was that, while the time together was fabulous, we missed having the kids with us.  We had traveled to DC a few years ago with the four older kids, and the city brought many fond memories.  We made countless "remember that" comments.  "Remember eating with the pigeons on those steps?"  "Remember Grant doing this?"  "Remember how we laughed at that." We missed the girls' quick laughter and the boys' sense of adventure and watching their growing minds soak up all the things that they were learning. 

  And as we look back over the years and the many, many trips we've taken with our kids, we have no regrets, not one.  If we had it to do over again, we'd take them with us every time

God is good, all the time