Meet the Author

On September 11, 2016, my son Logan and I had the privilege of attending an event at the Dallas Museum of Art to hear a phenomenal speech from a gentleman named Robert Hoge.  Robert was born in 1972 in Australia, and graciously shares his story in a memoir called "Ugly" that was written in a format for youth, teens and young adults.  However, "I" am already enjoying my copy, and Logan is looking forward to reading it as well.

Like many of us families who are affected by craniofacial differences, he too, shares his journey of overcoming the struggles that life has thrown at him.


        

 Here is Logan getting his copy of "Ugly" autographed and meeting Robert Hoge face to face.  We were able to speak to him one-on-one, and even though Logan is extremely shy, it was priceless for me, to hear them have a conversation.  Logan soaked in the encouraging words this wonderful author had to share.

There's nothing more redeeming than continuing to learn that you are not alone in this world.


God Bless,
Lisa Brown

You May Have More in Common with These Hands than You Think

Several months ago, my 14 year-old son (born with Apert Syndrome), made a comment to me about the scars on his hands and feet.  I don't remember his exact words, but they were related to his self-consciousness of his scars showing, and the fact that he didn't want people to see them.  This lead me to some deep thinking..

When my son was born, his hands looked as though he was wearing skin mittens.  All of his bones were fused at the fingertips, except for his thumbs.  His feet were only fused with the skin in between each toe, which gave them an appearance of "baby doll" feet.  We were currently under the care of a craniofacial team at Medical City Dallas, that included a craniofacial plastic surgeon, neurologist, anthropologist, geneticist, and a speech and language pathologist.   We had an appointment to see the surgeon on the team that specialized in surgeries on the hands and feet, what they call a "syndactyly release."   As we anxiously waited for one of the plastic surgeons (not our current doctor) to give us some direction for our son, he swiftly walked into the patient room, examined his hands in a rushed check-up, but stated that he could not guarantee that he would be able to give him all 10 fingers.  I was overcome by a feeling of uneasiness.  Here we were, brand new "thirty-something" year old parents, who just had a child diagnosed with a syndrome of "1 out of 150,000" odds.  We knew nothing about parenting much less medical babble, so who were we to question a physician?  After we got home that day my husband and I discussed it, and we both decided that something just didn't feel right .  We were not ready to accept that outcome, so we decided to get a second opinion.  We called the Shrine Hospital in Dallas and made an appointment to see a surgeon.  They ordered for us to come in and get x-rays of both his hands and feet.  The doctor came in, looked at his x-rays and said they could try to do the separation.  We asked how many cases like his had they done before, and I am pretty sure I could count them on one hand, if there were any.  Again, we went back home, both feeling apprehensive.  After all, this was a major deal. 

This was our son.  These were his hands and feet.

Immense weight fell onto our shoulders since we felt like this was not only our chance to make the best decision possible so that our son would have full function of his hands and feet, but our responsibility as advocates for our child.   We're talking about two very important body parts that determine how we function on a daily basis.  Again, this prompted more discussion.  We went for a third opinion and made an appointment with another plastic surgeon who was on a different craniofacial team.  We had heard great things about him, and he happened to be in the same hospital at Medical City Dallas where he had already had his previous surgeries.  We took the x-rays that had already been done, and the surgeon looked over them.  Right away he gave us good news that he would be able to give him all of his fingers.  He was very upfront and honest when he said that Logan's hands were going to be a hard case, due to the severity and how the bones fused: what they call "rosebud" hands. However, he felt confident for a good outcome because all the bones were present.  So after two separate surgeries about three months apart, they separated his fingers and toes using skin graphs from an area on his leg, and voila!  He had all ten fingers and toes released.  

Something else the doctors made us aware of with regards to his hands, is that children with Apert do not have "knuckles" or any break in the bones in their fingers, so they are unable to bend like typical fingers do.  However, my son, as well as other kids with Apert, adjust and accommodate like no other!  After a few years of occupational therapy, he has never let this stop him from doing what he wants to do.   Realistically, he does have certain limitations, but with some accommodations and learning over time, he can maneuver a whole lot more than we expected.  He has amazed us time after time. 

So when I look at my son's misshapen, scarred fingers and toes, I see beauty, strength, bravery, and courage.  And yes, I am his mom, and moms see the good in their children no matter what.  I also know how these scars came to be.  I can't help but think, "this must be how God looks at us, as HIS children. Even though we are scarred, we are His children. He loves us and sees the good in all of us."  No matter what.  He sees us with the utmost and purest love, and that is all that matters.  He also knows every scar that we carry.

And here are my deep thoughts:  could this also be you who has scars?  Ones that you wished you could cover up, or even a physical appearance that you are ashamed of. Maybe you know someone who does, or have a friend or relative that can relate.  Or perhaps you have scars that are not visible to anyone else.  Scars that have wounded your heart and made you feel less than worthy.  It is so incredibly hard to live up to the societal standards these days. 

What I want to say to them, to you, is this:
I hope you know how much you are loved.  Your scars do not define you, because you are a child of the most high God.  You were created for a purpose!  Whatever scar you have, visible or invisible, let that be a reminder of the strength and courage you were given to overcome.  Jesus has his own scars to prove it. 

You may have scars, but so does HE.



God Bless,

Jeremiah 29:11