God's abundant love

Today is my first day off for the Christmas break, and boy am I enjoying drinking my coffee without the morning hustle and bustle, and just being able to be still.  I can't help but become a little nostalgic because today also marks one year that I watched doctors and nurses wheel Logan back to the operating room once again, for his eleventh surgery, (fifth cranial-vault reconstruction) where were then directed to the oh-so-familiar family waiting room at Medical City Dallas Children's Hospital.  Both sides of our families were there supporting us like they always do, and words cannot even express how much that means to us.  Our wonderful pastor and his wife, Donnie and Karen Foster came to be with us as well, and to pray for Logan and our family during this stressful time.  I remember how scared I felt, but also thinking to myself, "Lisa, we've gone through this so many times before, you know what to expect and you know the outcome."  One would think that this gets easier once you've been through it so many times, and when your child gets older it shouldn't be as difficult, right?   But to be honest, it doesn't.  It does not get easier while Steve and I wait in the surgery holding area to see the medical staff walk up and say, "Ok Mom and Dad, time for hugs and kisses and goodbyes, they're ready for him" where I have to fight tears from streaming down my face so he doesn't see how worried, scared and sad I feel that he has to go through so much pain, again, but rather put a big smile on my face and say, "I love you and we will see you in a little while, sweet dreams" while I watch them roll my son away, knowing what is about to happen.  He needs to see my face smiling before they wheel him back to an operating room with doctors and nurses all dressed in green or blue scrubs and masks on their faces and tools and machines everywhere.
On some level, it does help to know what to expect now when he has to have surgeries and what to bring to the hospital, but it can also be a disadvantage to know....to know that he will probably be sick from the anesthesia, cry out in pain most of the nights, beg the nurses to please don't wash his incision of about 100 stitches that runs from one ear across his head to his other ear, have so much swelling that his eyes are swollen shut and which also have a stitch in each eyelid to protect them until the swelling goes down, to go days without sleep, and pray that he doesn't get an infection from the spinal fluid drains.

However, what is easier, is knowing that God's abundant love never fails.  It is always there, and reminds me that "there may be pain in the night, but joy comes in the morning."  It is easier having my savior, Jesus, who hears our prayers, and sometimes down right pleas, for protection and healing. I look back over the past year, and realize how much God has done for my family, in many aspects, and how far we have come.  Logan is a true testament of just how real God's love and faith is.
Our God is a loving and forgiving God.  He gives us the strength and hope to make it though our darkest hours or moments, if we trust in Him.
God Bless!

"I can do all things through Christ, who gives me strength."  ~ Philippians 4:13  

before swelling set in

four days after surgery, playing the wii through slightly opened eyes

going home!  Christmas eve 2013

That was then, this is now

Spreading the Word

About a week ago, I had the honor and privilege to address the high school student body at Ft. Worth Country Day School to help spread the word of awareness and acceptance of those with a craniofacial difference.  The students had been required to read the book Wonder, and some of them had researched CCA's website and wanted someone from the Children's Craniofacial Association to come and speak about their organization.  They host an annual dodgeball fundraiser and wanted to donate funds raised to CCA.   Representatives of CCA could not make it in the timeframe they needed, so I was presented with this opportunity.  It didn't take a second thought for me agree to take on this challenge, and put my heart and soul into this speech and to give them a parent's perspective.  I compiled a slide show that included a little history of Logan's diagnosis and several pictures of him over the years, showing how he is just an ordinary kid, loving the same things that other kids do.  Within my presentation, I spoke some truths about what it is like for a cranio-kid:  surgeries, hospitals, needles, and pain.  Although the pictures I showed were of all the happy times of him being an ordinary kid, I pointed out that what they didn't see past all the smiles was the anxiety he has experienced over the years of going to public places, the worry of how many people will point and stare at him this time, or which kid is going to call him a name on the playground at McDonalds.  (true personal experiences - for another blog)
The students were very respectful and attentive, and I couldn't feel more blessed for this divine experience that fell into my lap (not by accident I may add).  I believe God puts people, situations, and experiences in our lives to teach and strengthen us so that we are able to follow His plan.  I hope God is not finished with me, and I pray that I go where He leads me.

Until next blog,
God bless,
Lisa

Choose Kind Campaign Coin Drive for CCA was a Success! Let's keep the momentum of "choose kind" going!

WSISD Students Raise More Than $2,800 for Children's Craniofacial Association

As part of White Settlement ISD's Choose Kind anti-bullying campaign, students raised more than $2,800 for the Children's Craniofacial Association during a district-wide coin drive in October.  Brewer Middle School seventh grader Logan Brown, who has a craniofacial diagnosis called Apert Syndome, inspiredWSISD's year-long Choose Kind  anti-bullying campaign that encourages students, staff and the community to treat others with respect and kindness. The Choose Kind initiative stems from the book "Wonder" about a fifth grader who suffers from a severely deformed face and does his best to be just an ordinary kid with an extraordinary face. Wonder is being used in districts throughout the nation as a way to encourage young readers to share their stories and to introduce the Choose Kind theme. Pictured are: Sherri Kottwitz, Brewer Middle School principal; Logan Brown; his mom, Lisa; his brother, Landon; Frank Molinar, WSISD superintendent; and Michael Dickinson, Liberty Elementary principal. The WSISD schools competed to raise the most money, and Liberty Elementary won, raising more than $800.

Moment of Truth - Part 2

It has begun.......

I have been chomping at the bit, waiting patiently to share with you some phenomenal things that are happening in our lives right now.  Where do I even begin?
I will start by saying, that since last spring, I have had a heavy heart knowing that Logan was finishing up his last year at the school that I teach.  The school where everybody knows his name, his personality, his learning style, etc.  So I guess I began having somewhat of an "empty nest" feeling, if you will, that he would be leaving and entering into middle school, where perhaps only about 25% of the students would know him.  And truthfully, I was actually happy that he would finally get to attend a different school, as I wanted to be able to let the kite string go.  However, being that he is not the "typical" kid who is "just going off to middle school and growing up," but rather a uniquely, God-designed young man who was born with Apert Syndrome, burdened me.  Knowing how shy and introverted he is, I feared the worst would happen:  kids would stare, point, snicker, whisper, or even make fun of him because he looks different; and I feared he would be isolated, or isolate himself in order to cope with whatever he would be dealing with.  This sounds very pessimistic of me, but as a mom, I have to face the reality of it in order to advocate and be proactive for my son.  First impressions and initial experiences, especially in school, can make or break the mood for the entire year.  This sparked a fire in me.  Since I had previously read the book Wonder to Logan's class at the end of the school year, I had an idea.  I took my ideas to the communications director who is also head of the anti-bullying projects for my school district and she was very interested.  The gist of my ideas, was basically to try to mesh a choose kind pledge (a pledge encouraged from the book Wonder) with our anti-bullying month.  Since August, we have been working along with the district counselors and curriculum directors, and to say the least, this project has become bigger and better than I ever imagined!  Everyone is so supportive, and are really taking this and running with it!  I cannot wait until the "Operation Choose Kind" campaign kick-off in October!  This will now be a district wide campaign to spread awareness for kids with craniofacial differences AS WELL as taking a stand against bullying.  We will also be raising awareness in the community by doing a coin challenge fundraiser for the Children's Craniofacial Association (CCA), promoting and encouraging all to read the book Wonder, district posters will be hanging on the walls of schools, and to top it off, the 7th grade Character Education class at the middle school will be doing a book study on Wonder.
What a WONDERful way to start the school year!!   Please take a few minutes to watch the district video that is attached that we will be showing to the students, staff and community......Logan AND Landon are featured!  After you watch, please share with anyone and everyone, because this is how we spread awareness!!!!  After awareness, follows acceptance, and this is the ultimate goal.....for everyone, isn't it?

2014 WSISD Choose Kind Campaign

        

Click here for the WSISD Choose Kind Video.

Moment of Truth.....Part 1

 I have to say, first:  I am blessed to be a mom of two amazing boys:  one who was born with a craniofacial difference (Apert Syndrome), and one who has a servant's heart of gold.  Second, I'm lucky to be a teacher in the same school district as both of my boys.  I have a strong conviction to spread awareness and acceptance of someone who was born "different" by doing a book study with my students this year on the book Wonder, by R.J. Palacio.  I was very fortunate to have the chance to introduce this book to Logan's class last year in sixth grade, and the students seemed to enjoy it and grasp the theme of this story.  And the wonderful thing about the message is that it can apply to everyone and I really hope that it carries over with his peers, especially now that he is going into middle school this year.  But now, God has really laid this on my heart to help spread awareness; and through this book (and my blog) is where it begins.   
So, my moment of truth for this school year, as a teacher is: This is my chance, and I hope and pray that through reading this book, I will not only teach some good reading and comprehension skills, but somehow instill a deeper understanding of what it truly means to "Choose Kind."  I have made a bulletin board outside of my classroom, and I hope that it intrigues others to want to learn more, and read this book when they see what we post onto out bulletin, or when they see the book in the library, or hear others talking about it.  If you are reading this blog but are not familiar with the book, and you have children, grandchildren, nieces and nephews that are in the 3rd or 4th grade, I encourage you to read it to them, let them read it to you,  or read it with them.  If your children are fifth grade and up, have them read it and tell you about it.   There is a wonderful message in this book that teaches us about acceptance, bullying, and making choices that can be life-changing....to many.

          

We will be "Wonder"ing all year long!  I hope you do too...
Stay tuned for part 2.
Until next blog,
God Bless

Reflections

      Before I settled back into the daily routine of life, I took some time to reflect on the past five days of an amazing experience: my family’s first CCA Retreat in St. Louis, MO.   I have seen all the Facebook posts and pictures over the past few years of previous retreats, and have really wanted to go, but for many reasons I have been dragging my feet on planning this trip for my family.  Some reasons were the timing of surgeries, Steve’s work schedule and being able to take off the time that the retreat was scheduled, but also it was my fear of the unknown.   Apprehension seemed to have kept me from choosing to register, mostly because I didn’t feel I was ready.  I knew that attending a retreat like this might force me to face and relive some emotions all over again and was worried that it might not be what I expected, or wanted from this trip.  Who wants to go on vacation with the possibility that it might turn out to be depressing and emotionally draining?  Luckily, this retreat was quite the contrary!  And now that we have finally gotten the opportunity, and made the choice to be a part of this journey, I feel that my life has been forever changed.  So what do I take away from this experience?  I take away the sense of acceptance, being part of another family, a much bigger family with delightful people who have “walked the walk”, if you will, and have felt the pain of witnessing their child’s surgeries and struggles.  Even though we didn’t necessarily discuss all of our surgeries and experiences with each other – family-to-family, I felt there was an unspoken comprehension of what we’ve all been through.  I thought to myself, “these parents get it…. they have been on the front line, and know what it’s like to hear the constant beeping of the hospital monitors, the needles and I.V.’s (oh those dreaded needles!), the pain management, the turning of devices, the tube feedings, the anxiety, sleeping on those awful hospital chairs (or not sleeping at all), the swelling after surgeries, (I know I’m leaving out a lot of medical events here), signing and attending hundreds of I.E.P.’s, and advocating for your child on so many levels.” This gives me comfort knowing that you truly understand.    Although our social media provides great tools for connecting with others, there’s something to be said about face-to-face interaction, and perhaps this is what makes it so surreal.  As a parent, it was therapeutic to finally connect with people in person who understand where you’re coming from, regardless of which craniofacial syndrome or diagnosis your child has, and getting the chance to discuss not only the difficulties our children have faced or will be facing, as well as the ones we as parents face, but also celebrate the obstacles and challenges they have overcome.  I take away satisfaction in seeing our kids take ownership with confidence in who they are and where they fit into this world, especially as other children who are “like” them, as well as their siblings, surround each other with kindness.  I’m certain that I am not the first parent to point out how empowering the retreats seem to be for our kiddos AND their siblings….to know that they are not alone.   When I asked my kids and husband how they felt about the retreat, this was their response:  Logan (12 with Apert Syndrome) “I actually just felt like a normal guy around here.”  Landon (9) “I had so much fun and I made so many new friends!”  Steve – “I had a great time getting to meet so many new families.  Being able to ask questions and also help by answering questions for others who had younger children was very rewarding.”  I truly feel that this was a pivotal moment in our lives.  Going on vacation is always the highlight of the year, but to take a vacation surrounded by people whom I know I don’t have to worry about the stares, or whispers, or what they are thinking, and just being able to really leave it all behind, is the ultimate.  To sum it all up, I take away a new sense of belonging; and as a first time retreat parent, now I get it.  We do belong! We do have something in common with other families!  We do not have to feel like that family who has problems, with that child who has so many difficulties.  We are accepted!  WE are not alone!  Regardless of the miles in between us, we have made some lifelong friends and I cannot wait until the next retreat when we meet again!  Thank you Char, Annie and Jill for your dedication to serving all of the CCA families, and the many ways that you make a difference in so many lives!  

Cher Retreat - St. Louis, MO bound in 8 days!! 
I cannot wait to attend this year's CCA Retreat for the first time!  The top of the agenda list includes meeting some families whom we share similar experiences, emotions, feelings, and fears, and finally be able to exchange stories and connect with people who "live in our medical world" of surgeries, therapies, and more surgeries. 
What I hope to take away from the retreat:

For Logan - To be able to finally see, in person, that there are other kids just like him, who have had to endure and overcome lots of pain and difficulties adapting in many everyday life skills. (Triumphantly, I might add)  I also hope that he connects with other children, even as shy as he is, and exchange phone numbers or emails to stay in touch and have someone to connect with and talk about things that other kids might not understand.   I want him to realize, that he is not alone.  He is not the only one.

For Landon - To be able to finally see, in person, that there are other kids who have siblings with the same or similar challenges.  I hope that he too, connects with other siblings of craniofacial kiddos, because these siblings, oh these sweet kids, have witnessed more physical and emotional suffering on their brother/sister, and quite frankly, the whole family, than any kid should have to.  Yes, they are the strong ones, they are the servants at heart, but they too need a sense of connection and belonging.  For my Landon, underneath it all, I sense and feel his sensitivity when it comes to his brother.  I hope that he is able to see the good in it all, and make new friends, and converse freely about his and their experiences.

For Steve - Where do I even begin?  There are so many things that I hope Steve can take away from this trip, but if I have to narrow it down, it would be to finally let go....let go of any harboring emotions that he might have kept inside over the years.  (being a quiet man, he tends to hide his emotions sometimes, but a lot of men do, don't they?)  I also hope that he gets to meet some dads who have also had to jump all these hurdles and be the rock, the provider, the leader and just keep going.  Feeling a sense of peace would be the ultimate!

For Myself - Most importantly, if the preceding three happen, then I will be one happy momma! But, with that being said, I anticipate hearing other families stories and their journeys that they live to tell.  Innately, I love to learn about people and their lives, but oh, to actually get to hear stories that I can relate to on many levels, is the icing on the cake.  I look forward to meeting parents and their children, especially all the people I have already connected with via Facebook.  My journey of connecting has already begun with our fabulous social media, but having the face-to-face will be a wonder of its own. 

Until next blog,
God bless,
Lisa Brown