River Deep & Mountain High

It's 4:45 a.m.............on a SATURDAY, the weekend before school officially starts for my children and I begin my teaching journey again.  Why in the world am I awake?  Is it so I can go for a nice run through my neighborhood while it's still cool outside since we had a whopping cool front of 70 degree temperature this morning?  Nope, I'm a scaredy cat and I don't like running when it's dark.  Probably because I watch too much Dateline and don't particularly want to make an appearance on their show as a mystery case of disappearance, and for the mere fact that I have done it before and don't particularly enjoy having morning meetings with all the nocturnal critters out here in the country (especially skunks).

I am awake because my thoughts run river deep and mountain high with last minute details such as: "I bought supplies and items for my classroom, but did I forget any supplies on my own child's class list?"  or "my classroom looks so nice and organized, but I have got to get my house cleaned and organized, because it will probably be the last time that all the laundry is actually put away and we are not digging out clothes from the dryer for the next nine months."  The time has arrived for me to leave my family, in essence, in order to serve others and do what I have been called to do.  So like all my companions who are boarding this ship with me, we say "bon voyage" and begin to set sail on a journey into the vastness of possibilities for our students, and our own children.  Which leads me to my next thought.  This is the time of year that I am reminded that I'm not actually getting on the same ship as most of my colleagues, but rather a smaller ship, one of which doesn't have the stabilizers to keep the boat from rocking back and forth for smooth sailing.  In other words, this boat is for passengers (educators/parents) who also happen to have a child with special needs.   First, we get on this boat praying that their are life jackets for when the sea gets rocky.  (I'm going to use a lot of metaphors in this blog, so the best brand of life jacket I have found that keeps your head above water is called Jesus).    Presumably dropping our kids off should put us at ease because we are already in the education world and all will go according to plan, but that is not always the case.  We are just as worried and anxious as a parent who is not in the education field.  I will speak from experience, that yes, I do have to take off my teacher hat, and put on my mom hat, because I will always be mom first.  This is not an easy task to do sometimes, so starting school for me feels like The Amazing Race........on that smaller ship.  I run through the mental check list:  "gotta get that Epipen to the school...crap, gotta also get the doctor orders to give to the school;  need to meet all Logan's teachers and give them the crash course of his "diagnosis" along with his occupation with hospitals and surgeries; we have to get his instrument to school so it can stay there for him to use because it's too heavy to transport back and forth; shoes for Apert feet!!!! OH, good heavens trying to find tennis shoes for feet that are wide, one foot flat and one has a high arch and with splayed toes!  We have to go to the actual New Balance store to get fitted and also buy the expensive memory foam shoe inserts (this is our final step to try before we pay $$$ to get custom orthotics, and yes we've already tried Dr. Scholl's) and also the little y-ties or shoe clip thingies for keeping shoes tied and they gotta look cool so he is not embarrassed about that part;  for the longest time I had to search and hunt for pants/shorts that were either elastic or had hooks or snaps, and if I couldn't find any, we bought a rivet tool to make them that way; make sure everything is set up for him to begin the school year and be successful, IEP goals, assistive technology, will his teachers see how much potential he has; will he have someone to sit with at lunch this year? Oh yes, how am I going to get him to and from school when his start time is the same as my campus, but I have to be on campus 30 minutes earlier than that and I have to do dismissal?"  This isn't even the tip of the iceberg for some parents.

I wouldn't change my life for the world!

However, I'm not gonna lie.........I do throw myself some great pity parties.  (I would invite you, but they're not a lot of fun.  I am sure my very close friends wished they would quit accepting my invitations to them).  I often wonder, why does everything have to be so hard?  why does my child have to deal with so many challenges? why can't I just get school supplies, roll up the first day and drop him off and be done?


The answers to these questions are:  there ARE NO answers to these questions.  I know in my heart that God planned all of this out, and that there is PURPOSE in every hardship, as well as the easy stuff.   I just have to remind myself that I am NOT alone on this ship.

The seas can be so treacherous, and some days it's just down right hard to imagine weathering the storm.  But at some point, the sea calms, and it's smooth sailing again for awhile.
But the most important thing I've learned, is that God is with me....through ALL of it.  The storms, and the smooth sailing.

My prayer today is for all of the parents who have a child with special needs, and are about to enter into another (or especially their first) year of school.  Remember that you are not alone.  May God give you wisdom for making decisions for your child; give you the courage to send your kids to school with faith; give you strength to weather any storms that come your way; and for God's wonderful grace.

God Bless,
Lisa Brown

   


"Jesus is the same yesterday and today, and forever."  ~ Hebrews 13:8.     

            

Where there's a will, there's a way!

I dedicate this past school year to my family and my CCA friends/parents/children who understand first hand what it means to have a child with a craniofacial difference and the societal obstacles we must face and overcome to raise awareness and ensure that our children are accepted. This mission was not about me, but about a purpose that God laid upon my heart to follow through with. And that purpose came to life with our school district's "Operation Choose Kind Campaign." So, for those of you who have doubts, worries and fear about your child entering into school because of his/her physical differences, I encourage you to take that leap and communicate with your schools. Let's face it, it IS very scary....not only for our children, but it's scary for us parents as well. Push aside any doubtful thoughts that are telling you, "you can't possibly make a difference", or "no one will listen to me," because the old saying "where there's a will, there's a way," certainly rings truth. Let your WILL, shine through and light a fire within you.

Above and beyond for students

WSISD TEACHERS RECOGNIZED Part 2: A few questions with the teachers of the year by A.C. Hall The White Settlement Independent School District teachers of the year go above and beyond for the childr...

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Angels in Disguise

To the manager named Tiffany at Schlotzskys on Camp Bowie Street, in Fort Worth, Texas:  Thank you.  There are so many things I want to thank you for, but I will start with this...Thank you for your excellent service.  You were so helpful, friendly and truly exuberant.    Thank you for checking on us at our table, asking if we needed anything.  I have always loved Schlotzskys, and it is one of my favorite sandwich shops, but I will say that I plan on making a point to specifically visit your store again, and here is why:


Thank you for introducing yourself to my boys, first to my oldest son who has a rare craniofacial syndrome called Apert Syndrome.  You introduced yourself to him, asked him his name and shook his hand, and told him that he was a very handsome young man.   He then said, without prompting from his mom, to you, "thank you," and you said, "you're welcome."  This in itself is a huge accomplishment.  You see, we are used to stares and avoidance.   But on top of that, Logan is an introvert.  You have no idea how much this meant to me as his mom, to see someone acknowledge him, seeing him as a person and not someone to avoid. Thank you for not being afraid of taking that chance that no matter what, you might make someone's day.  Well rest assured Tiffany, you did.  You made all of us smile, and you made a thirteen year-old boy who has had 11 surgeries to correct his skull and facial bones, feel like he was just like every other customer in that restaurant.  Not only are you an exceptional manager and a true testimony of what kindness is, but an angel in disguise.
Sincerely,
Lisa Brown

Finding the Silver Linings

Two and a half days of ice, and no school, which also means no work.  One day back to school, wait, what day is it? I'm confused.  Oh, yes, it's Thursday, our first full day that seems like Monday.  Friday, school again, and a Texas blizzard arrives, so after two hours of school, back home it is.  But this time, it is a very long and treacherous drive.  Normally my drive to school is about 35 to 40 minutes since we live out in the country.  However, this time it took me an hour and 4o minutes to get home.  It was snowing so much that I couldn't even tell where the road was.  Cars were sliding all around me and getting stuck.  At one point, I'm pretty sure Logan could tell that I was nervous and scared as I gripped the steering wheel with all my might and concentrated on what my plan of action was for driving in this madness.  So he turned to me, put his hand on my arm and patted me and said, "just take it slow and easy."  And then I looked over at him, and he had his hands together and was praying.  Hold on.  I thought I was always the one that had to keep it together and stay calm.  I guess my body language gave me away.  This sweet, grumpy, hormonal thirteen-year-old is one who tends to panic when things go awry, or if he thinks he will be one minute late to anything.  I am happy to learn that he was able to find calmness amidst this storm.  And believe me, he has made it through numerous storms, medical storms, some I would rate as hurricanes, those of which I have had to be the calm, the still.  So this time, he was "my" calm.  I thanked Jesus for this boy who always shows me hope, and prayed for our safe return home.  Meanwhile, Landon is in the back, taking video of the snow as well as cars that are spinning out everywhere and sending them to his cousins who live in Wyoming!  Of course they are used to snow, but are also aware of how often Texas gets weather like this, so they thought it was cool.  He puts his headphones on and be-bops away with no worries.  I thanked Jesus for this boy, the one who reminds me to laugh, and definitely keeps me on my toes.

So here we are. days of rest and recuperation.  It's fun for the first few days and then cabin fever sets in.  I am content, but the kids become bored and restless.  They play, argue, play and argue.  This cycle repeats...We decide to watch the movie, Alexander and the Terrible, Horrible, No Good, Very Bad Day.  This is a good family movie and quite hilarious.  So hilarious that Logan laughs so hysterically loud that Landon and I cannot even enjoy the movie.  It's a forceful laugh sometimes.  Let me just say, that this is how Logan works.  He either laughs really really loud or talks the entire time making comments or asking questions.  This makes it hard to enjoy a family show or movie, without feeling annoyed.  My other Apert moms whom I've talked to about quirks our kids do, will get this.  But, regardless of the conditions our kids have, or do not have, they all do things that get on our nerves.  This is where we are a normal family.  We disagree, love, bicker, hug, cry, laugh and forgive despite having different circumstances than most families do.
Luckily, Landon and I had already seen this movie, so it made it a little easier to tolerate.
This moment reminded me of the times when Logan was in the hospital after surgeries.  I would tell Steve that I couldn't wait to hear his loud forced laugh again.  It would be so much better than his crying and moaning in pain and agony that I could not take away, but just try to soothe by remaining calm.  In those times I longed for things to be back to our normal.  

When I have moments of not feeling so normal, and the kids have strung my nerves as tight as a violin, I try to find my silver lining, and that is, being so thankful that my kids are healthy, breathing, smiling, laughing, arguing and rough-housing.  Thanking God that right now, we are, in our own way, a normal family, and He has blessed us time after time after time.
And He never leaves our side.  This is my silver lining.
 
            
         

Look out world, Logan is 13!

Thirteen years ago, this boy came into our world and showed us love we had never imagined.
The NICU doctors came to us with large medical text books because they were not sure what was wrong with our baby boy and began running test after test.  We had no idea what was happening and weren't even sure if he was going to live.  He defied the odds.

Thirteen years ago, this boy was diagnosed with Apert Syndrome.  1 in 160,000 children are born with this condition.  He defied the odds.

Thirteen years ago, the NICU doctors told us he may have average intelligence, but there was a possibility he might have mental retardation.  He is mainstreamed in his classes at middle school with some support, and is holding his own.  He defied the odds.

Thirteen years ago, this boy endured five major surgeries by the time he was one year old.  Three of them were to remodel and build his skull;  two of them were to separate his fingers and toes.  They said he may not have full function with his fingers, due to the fact that they are fused at the knuckles and they do not bend like ours.  He now buttons, zips, writes, types, texts, plays with every electronic gadget there is and puts together the tiniest Lego pieces there are.  He defied the odds.

Thirteen years ago, God blessed these two newly parents with a test.  A test that we're still taking.  I'm sure somewhere along the way, we have failed some pop quizzes here and there, but we learn along the way and take it one day at a time.

Thirteen years ago, after Logan's first cranial vault remodel surgery at 12 days old, his surgeon told us, "he is a fighter, I can tell.  He sure likes to drink his milk and fight."  Steve's great aunt Virginia Gray, who is about to turn 100 years old in October of 2015, wrote and published a poem in a book of poetry, and dedicated it to Logan back in 2003.  Her dedication stated:  "I felt compelled to write a poem to the devastated parents, as though I were Logan, talking to them.  I've written comical poetry, occasionally, for family members, never realizing God had blessed me with a real talent......I am Logan's great great aunt."
Here is her published poem:

I'll Drink My Milk and Fight

Written for Logan Brown

When I hear mommy crying

And see daddy by her side,

I'm sure they're really trying

To be brave-though mystified

But I know something they don't know

In time.  I'm gonna be alright.

I know cause Father told me so.

If I drink my milk and fight.

God has prepared my special "Doc"

He's the best of his kind around.

When he's finished, I'll be in good shape.

My head may hurt but I'm not down.

This is not over, but soon will be.

I'll be home to stay, just wait and see.

So, mommy don't cry and don't be blue.

Lean on daddy, he wears a big shoe.

Daddy, don't fret about all the bills.

You know my Father, beyond the hills.

He didn't make a mistake with me.

I'm gonna have scars, but so does He.

Virginia Gray

Copyright @ 2003 by the International Library of Poetry

Watermark Press; Owings Mills, MD

Fast forward to now, 13 years later.  Logan stills drinks his milk, is still a fighter, and still defies the odds.  I'm so proud to be his mom, and can't wait to see him inspire others and soar in life!
Happy Birthday Logan!