Friday, March 15, 2013

Special Needs Spotlight: Jameson





Hello Miggy! My name is Brooke Davis and I am very excited to share our story on your blog!  My husband's name is James but I call him Jim.  He is my best friend, college sweetheart, and all around amazing guy. We have been together for 12 years and married for almost 8.  Three years ago we decided to start a family.  And like many other couples it did not happen right away.  But, I am happy to say that on April 12th, 2012 we were blessed to welcomed our first baby, a son we named Jameson Cruz.  Jameson was born a bilateral trans radial congenital amputee.  This means he was born missing both of his lower arms and hands. Because his anomaly is strictly isolated to his arms, doctors do not believe that it was caused by any known disease or syndrome. We have sought out answers from the experts who research skeletal dysplasia (developmental bone and cartilage disorders) at Cedars Sinai in L.A. and even they have no understanding to why he was born this way.  In fact, they told us that we may never know.  It is hard not knowing why this happened but we are so very thankful that he is and continues to be a happy, healthy little boy!!!

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Miggy:  Hi Brooke!  So exciting to be interviewing another limb differences mom!  So lets start at the beginning... can you take me back to the day you found out about Jameson's arms?  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?

Brooke:  Well, I was informed at my 20-week ultrasound that something may possibly be wrong with my baby's arms. That is what the ultrasound tech said to me after scanning my belly for 2 hours. The worst part was that she did not say anything else except that I would be contacted by my Doctor.  I begged for more information, but she just left it at that.  Did he have arms at all?  So many questions ran through my mind.  I felt sick and was completely shocked.  I had watched the entire thing and the baby looked perfect.  I saw him yawn, his heart beating strong, and he had such a cute little profile.  That was also the day I found out he was a boy.  I was instantly in love with my little man!  So when she threw the last part at me, I just couldn't understand what she was talking about. I was in shock but I do remember wondering where his little hands were.  It wasn't until a week later at another appointment that I actually found out what they had found.  By far one of the hardest weeks of my life.  Not knowing what was wrong with my child was absolute torture.  I prayed that it was all a misunderstanding and that the ultrasound machine just couldn't see his little arms because he had them tucked in a funny position. My appointment finally came, I had been sent to a Genetics Counselor and Maternal Fetal Medicine Specialist.  There, I finally heard the details of the ultrasound.  They confirmed that Jameson had full humorous bones but the rest of both of his arms had stopped growing or something had restricted their growth.  I was extremely upset, and couldn't fathom how this happened.  What did I do wrong?  I did not even drink coffee. That day was awful and on top of it all they offered to terminate him.

That was almost a year and a half ago and today Jameson is healthy, happy and thriving at 11 months old!  The way I feel now doesn't even compare to when I first found out about his special needs.  I was scared, unsure, and sad. Despite challenges we have had and will face, I am now completely confidant, happy, and excited about the amazing things ahead.  Jameson is going to go on and do great things even though he may have to take a little bit of a different path!


Miggy:  I know a little bit about limb differences, but I also know not all limb differences are created equal, so to speak.  Explain how Jameson's differences affect your day-to-day life?  

Brooke:  Jameson's differences affect our day-to-day life very little.  The only thing other parents don't do on a daily basis that we do is that we put his "arms" on and we take them off.  To us that is normal!  We treat him just like any loving parents would treat their baby, with love and affection.  We love him unconditionally and just want to see him succeed!  So that is why we chose to fit him with prosthesis at an early age.  My husband Jim and I fully believe in giving Jameson every option available to him.  With today's technology the sky is the limit.  At 11 months we have already seen him excel using both his God given arms and his prosthesis!


Miggy:  What are the biggest worries you have for Jameson?    

Brooke:  My biggest worries for Jameson are probably going to be the big challenges he may run into because of his lack of hands.  As a baby we pretty much do everything for him.  Down the road there will be a time when he will have major obstacles taking care of his hygiene needs,tasks that require very fine motor skills just to name a few.  But with the help of his prosthesis, those obstacles will eventually be minimal.  I do also worry about what other people might say to him.  Words can be harsh and very cruel.  Jameson will probably deal with that situation better than I will.  As his mommy I never want Jameson to feel bad about himself, I want to be able to ALWAYS protect him.  I know that won't be possible, but I will still try and worry.


Miggy:  Now for a lighter question, have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Brooke:  Oh yeah, we had recently been playing with Jameson while he had his prosthesis on and apparently his dad tweaked the elbow just a bit too hard and broke the forearm right off.  Later that day my husband was at work telling a fellow employee that earlier today he had broken his sons arm off but it was no big deal because we just had to overnight it via UPS and it would fixed.  Someone else overheard the conversation that did know about Jameson's prosthesis and nearly fainted.  "How can you be so calm about breaking your child's arm off and why are you putting it in the mail?" Jim got a kick out of that.  I wish I had been there to see the look of horror in that lady's face!


Miggy:  How can people best approach or respond to Jameson?  Is there something you wish other people knew so as to avoid awkward or hurtful situations?  

Brooke:  Well, I haven't really run into any an awkward approach or response yet, thankfully!  People have been great, typically most of the time they just say hello and ask how old he is?  Which is perfect!  I don't think people notice his arms right away, and if they do they kinda take a double take and go on like normal.  In the future I suppose people will be more curious and it would be nice if their questions were positive in nature.  We don't mind if anyone asks about Jameson as long as it is not hurtful!


Miggy:  Now, I think I've seen you guys on a few news shows lately... how exciting!  It's always great to see children like Jameson featured and to help spread awareness.  Why and how did this come about?  

Brooke:  Yes! We have been on T.V. a few times!  Exciting stuff, but really we were never actually seeking media attention.  It kinda happened by accident.  An acquaintance of my husband's emailed our local ABC news station to tell them about a small fund raiser we were doing to help raise money for Jameson's first set of prosthesis which cost about$25,000.  A great deal of money that we did not have.  The reporter who received the email fell in love with Jameson and our story.  So she came out to the fund raiser and that night we were on the 5:00 news.  We had no idea anyone had contacted her or that she was going to interview us.  It was a surprise for sure and after our interview aired, the people of our community apparently fell in love with him too!  My blog gained many followers and word spread through Facebook as well.  After we were able to raise enough funds, we received his first pair of prosthesis.  That sparked a follow up story on several news stations and the ABC network picked up our story at the national level.  After that we ended up on ABCnews.com out of New York!  The whole U.S. had access to our story!  It was really crazy how it just exploded!  Then shortly thereafter the daytime talk show "The Doctors" called to say they would love to have us on their show for the episode "Medical Mind sets That Change Lives.”  Off we flew to Hollywood and went on that show!  Its been kinda of surreal but all of the attention has been very positive and a great experience!  But by far, the best part has been how we have touched so many peoples lives and have been an inspiration to other families with special needs kids!!  (I asked Brooke to send me the links to the news stories and programs they've been on lately!)




  

  




Miggy:  What is the biggest lesson you’ve learned since becoming a special needs mom?   

Brooke:  I have learned that it is ok to have a child with special needs!  That life is beautiful no matter what road you take or what path you have to choose.  And I have also realized that when I see my child struggle to do just a simple task, it is important to never take anything for granted.


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Thank you so much Brooke!  So fun to have another limb-differences mama.  I have to say I really relate with so much you said--I know not everyone would put a prosthetic on an 8 month old baby, but we too wanted to give our Lamp the opportunity to choose for herself later on...and that means that as a parent you have to start now, to help their body and brain adapt to it or they definitely won't use them.  And I just about died laughing about your husbands story of breaking Jameson's arm and UPS-ing it to get fixed.  A lot of our funniest moments center around our daughter's prosthetic arm.  That Jameson is a cutie and he's going to continue to amaze us all!  Thanks Brooke.  

If you or someone you know would like to be a part of the special needs spotlight series please email me, or have them email me directly at thislittlemiggy at gmail dot com.  And if you've emailed me recently please be patient!  I'm getting there!

Have a great weekend!

6 comments:

  1. What an adorable little guy! Love the video of him crawling on the doctors clip. My baby boy was born missing one arm, below the elbow and these spotlights help keep things in perspective for me. It's an amazing what a positive attitude can do, and it's awesome that you guys have that. What a blessing Jameson has you for parents!

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  2. Anonymous10:10 AM

    Do you have a link to this family's blog? Maybe I overlooked it? Keep up with the Special Needs Spotlight, I so look forward to it every Friday!

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  3. Anonymous11:46 AM

    he is the cutest blue eyed baby I have seen...I wish him the best in his life and he lucky to have them as his parents.

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  4. Anonymous7:48 PM

    This is Brooke Davis! Miggy,Thank you so much for doing this spotlight! Here is the link to my blog if anyone would like to join in on Jameson's journey!http://davisday2day.wordpress.com/

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  5. isn't that photo of J with his mum holding him on her shoulder precious? what a cutie.

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