Maddox's Miles for Spina Bifida -- ALL The Details Of The 2K

Mackenzie and I will be holding our FIRST Annual Maddox's Miles For Spina Bifida!  All The Details Are To Follow:

 

***There are more blog posts to come, I just needed to get registration going!  But, I will keep blogging and bring you up to date and plan to keep it going!  Check below this post though because I plan to keep this one at the top until after the event!***

 

 

 

WHAT: Maddox's Miles For Spina Bifida is a 2K Run/Walk for Adults/Children to benefit Maddox's Spina Bifida related Needs

 

WHEN:  May 18, 2013

We will start the event at 10:00.  Adults will run/walk at 10:20. Children will run/walk at 10:45 or after all adults are finished, whichever is later. 

(If Children want their parents to walk with them, I think at this point that'd be best done during the children's time, I may change that based on how many adults and children register.  You can also email me if you think you would like to do a family walk or walk with your child and I may add another time slot.)

 

WHERE:  Tabb High School Outdoor Track

4431 Big Bethel Road

Yorktown, VA 23693

 

COST:  Adults will be $25 - You can select T-Shirt Size Below From Drop Down Menu At The Top Left...If registering for more than one, you will have to do the process of "adding to cart" X amount of times. --  I do NOT think you can see PayPal buttons on mobile site!

 

Children will be $20 (13 and under) - You can select T-Shirt Size Below From Drop Down Menu At The Top Left...If registering for more than one, you will have to do the process of "adding to cart" X amount of times.  --  I do NOT think you can see PayPal buttons on mobile site!

 

ONLINE REGISTRATION WILL END ON MAY 3rd (REGISTRATION CAN BE DONE ONLINE AFTER MAY 3rd, BUT JUST LIKE WALK UP, I CANNOT GAURANTEE SHIRTS DAY OF EVENT OR IN YOUR SIZE)-- I WILL HAVE WALK UP REGISTRATION AND WILL ONLY ACCEPT CASH OR CHECK, I CANNOT GAURANTEE SHIRTS DAY OF EVENT OR IN YOUR SIZE -- I AM ORDERING EXTRAS TO HAVE DAY OF AND ALREADY HAVE A 2nd ORDER PLACED FOR IF/WHEN I RUN OUT!

 

We will have an M.C. that will play music throughout.  I am looking for face painters or someone who can do balloon animals or some sort of entertainment for the children.  If you know anyone or are someone who would be willing to donate their time, please get them in contact with me.  THANK YOU!

 

I'm also looking for any items to raffle such as gift cards to local restaurants if you work at one and can have them donated.  If you represent a home party business and would like to donate an item or items to be raffled, you can put your business cards out along with catalogs out to try and generate business!  I already have a representative from Silpada willing to donate and am only taking one from each company.THANK YOU!

 

DONATIONS can be made at the event or through PayPal At The Top Left!  --  I do NOT think you can see PayPal buttons on mobile site!

 

***My friend (and travel agent) Mary Kraemer has offered to make a donation any and every time someone books a vacation with her and mentions "Maddox"!

It's a great way to have a wonderful vacation *and* do something great for Maddox! So, if you're already eyeing your next getaway, talk it over with Mary, she is GREAT! It'd be a WIN for her and for Maddox!

Mary's Facebook page is www.facebook.com/amazingvacationsbymarykraemer, her website is VacationsByMary.com, and her email is MaryK@CruisingCo.com***

 

 If you are OUT OF STATE and would like to purchase T-Shirts to support Maddox, I am willing to ship!  They will be $20 for Adults, $15 for Children and $5 flat rate shipping.

ALL BUTTONS ARE ON TOP LEFT!

 

Any questions, comments or suggestions, please feel free to email me at MaddoxsBlog@Gmail.com

 

 

WHY I decided to have a benefit for Maddox...

As soon as Maddox was born, I felt called to ACTION!  I know a HUGE part of this is the distance between us and how helpless I feel from here, but before I left for my FIRST trip to CT, my wheels were spinning, I intended to do SOMETHING like this.  My thoughts are...now and in the future, we really don't know what Maddox's needs will be.  I, as Maddox's Aunt, do NOT ever want my baby to go without something because insurance doesn't cover it or whatever bullsh!t reason there may be that something he NEEDS cannot be provided.  I KNOW that his parents will do EVERYTHING in their power to make sure he has the BEST care, BEST therapies, BEST of EVERYTHING, NO ONE will let Maddox go without, but again, we do not know what the future holds as Maddox is just a baby.  Plus, there could be unexpected travel expenses for doctors, time off from work, etc...who knows.  As this little baby's aunt (maybe his over bearing aunt), I want to make sure, just as his parents and the rest of his family and anyone who loves him does, that he always receives the best care, the care he needs, the care he deserves, and ANY and EVERYthing he may ever need.  So, that is where this came from.

In addition to that, this blog and this work is a way to channel my heartache (due to missing him from distance) into positive action.  When I work FOR Maddox, I miss him all the same, but it is channeled differently and instead of crying, I am positive and excited about the things I'm trying to do.

A HUGE part of this and maybe this should be higher up, but I just ramble...if you haven't noticed, is that I'd like to educate people about Spina Bifida.  Most people weren't sure what it was when I told them what was happening.  I'd like to share info and raise awareness for Spina Bifida with anyone who will read or listen.  When I heard SPINA BIFIDA, there wasn't much out there besides the definitions of the three types, and I'll admit, I'd heard of it, but really didn't know anything about it.  I'm learning as we all go!  As a matter of fact, auto correct on my phone does NOT recognize Spina Bifida and as I type this, the spell check doesn't recognize it either.  That bothers me and to me only proves the lack of information and awareness that I VERY quickly discovered.

Mack also wanted to help Maddox and other babies once she knew and understood the full scope of things...how could I NOT do that?!?  I said I did, too!  I hope to keep my fundraising efforts up and keep going and get bigger and bigger and help babies beyond Maddox. 

Last, but not least, a dream of mine has always been to one day start a charity or non profit, I could never narrow down my cause, and there are SO many out there...I always felt overwhelmed and never knew where or how to start.  Then, Maddox entered my life and gave me my reasons, push, and motivation, and may help me achieve my dream...I'd love for this to eventually be a charity in Maddox's name...one more gift that little miracle of a baby has GIVEN me.  He has given me so much, I want to give back to him and hopefully one day give to others in honor of this AMAZING little guy who has pretty much changed my life.

That's my WHY!

A Quick THANK YOU!

I just wanted to give a quick thank you to:

 

Everyone who has read the blog

 

Shared the Blog

 

Registered for the event

 

Donated money, items, or time to the event

 

Supported me in making this dream a reality

 

Everyone who has sent me some type of message, whether it's a text, email or Facebook message - they make me realize that what I set out to do is what is happening and they have touched my heart and soul and keep me going - If I could ask ONE thing, I'd LOVE if people left their comments on the blog so that Maddox's parents, Brandon and Kelly, could read the comments.

 

 

I cannot wait for what will probably be my next post...my AFTER the event post to share all about the event and give credit where credit is due!

 

A Mother's Day post about Maddox's AMAZING Mom, Kelly!

I don't even know where to begin, because there are SO many good things to say about Kelly, but I feel a very strong need to dedicate a post to her right now!  Obviously I mention her a lot, she is Maddox's AMAZING Mom and a huge part of his story.  Since I've met her, which wasn't so long ago, I knew she was a great person.  Seeing her as a Mom to the amazing blessing that Maddox has been leaves me almost speechless.  I don't know how to describe her to people other than amazing...I need a thesaurus.  My heart is so full of love for this new member of my family that I could not be more proud to call my sister in law.  Beyond the Mom she is, I think of how lucky I am that she and I are able to hit it off and communicate one on one and that I am able to hear about Maddox through her and get pics from her.  If I could choose, I'd rather have her be a great Mom and a horrible sister in law, but to get BOTH, I'm lucky!  She works so hard on a daily basis with that AMAZING baby that Maddox is in an effort to teach him everything other babies can do, if only in a different way.  I believe that between Kelly's efforts and love and what I saw in Maddox's face the first time I held him in the NICU, that I find it hard to believe that Maddox will not walk ONE day!  But, if he doesn't, that's okay, too. 

The last post was rather grim, but since then, well right after, Kelly worked on teaching him to roll over on an incline and was quickly SUCCESSFUL (HUGE round of applause, PLEASE!!!)!!!  There is a video of him rolling over, which I loooove on Facebook, but I can't figure out how to get it here...sorry.

So, in closing, thank you Kelly for being a friend, a wonderful sister in law, a loving aunt, Maddox's AMAZING Mom, a wonderful soul mate to Brandon, and a much loved daughter in law to my Dad and Jane!  We all love you sooo much!  I'm so happy that you had a wonderful Mother's Day with your boys!  You deserve it!  Xoxo

 

Beautiful as a Mother

 

Maddox and Mommy

 

This one has to be one of my FAVES...Look at BOTH of their HAPPY faces!  <3



 



Some Maddox Pictures

 

Now that Maddox can sit up, he doesn't want to relax and lean back in his swing! -- How cute is my tiny guy?!?

 

Take 2 -- So tiny and look at all that hair!

 



 

Maddox in his splints.  Mack says, "He is laughing in his doctors faces and saying, 'Look at me, I'm going to walk one day!!'" -- I have to agree!

Twinsies!

 



 

King of The Jungle! -- This was Maddox's new toy and he ABSOLUTELY loved it from what I heard!

 

Daddy and Maddox

 

Maddox and Daddy -- I love this!

 

Maddox using his Daddy as a recliner!  Daddy must be comfy!



Maddox just turned FOUR months and we have a few updates!

I'm going to start with the fun stuff because I want to!

 

Here are some pictures of my little guy that make me oh, so PROUD!!!

 

 

Deep in thought in his FANCY Easter clothes!

 

"Chicks Dig Scars"

 

Enjoying the outdoors and showing off his sitting up skills at ALMOST FOUR months!!!

 

"Mom, I really DO like it out here!"

 

"I rock four months like no other!"

 

 

Now, onto some medical updates...

Maddox had an appointment at the Spina Bifida clinic at Yale on April 12.  Those appointments are always a little rough on Kelly because they are LONG and the doctors do not sugarcoat anything.  In turn, they are also hard to hear/read about.  Kelly said, they are now referring to our baby as a paraplegic.  I know most of you are thinking isn't that what paralyzed from the waist down means anyway?!?  I think for us, I know for myself, words break my heart.  Especially when it comes to such a sensitive topic like my little guy.  I had a hard time with disability and still don't think I want to use that.  Paralyzed straight up BROKE my heart, and it's kind of like paraplegic is stepping it up a notch when it comes to worse words to use when describing someone and in turn those words just HURT.  Then they reiterate that he will never walk or have any movement or function, etc.  It's hurtful and depressing although we all know.  But, we still do NOT lose HOPE and NEVER WILL!  Then, they talk about getting splints on Maddox  to straighten his legs SOON, standers that will keep him in a standing position by 9 months so that his muscles, tissues and bones do not become weak and fragile in the future so that maybe he can use assistive devices.  I TRIED to hang on to this!  If they're doing things like this, sounds to me like they are preparing his body to be able to WALK one day with assistive devices!  I believe he will regardless of all the depressing stuff they say.  They also said that he would probably get his first wheelchair by the time he is 12 months!!!  Kelly and I went back and forth through text with the info, I asked how she felt, told her what I took from it and how I felt and I asked about the rest of Maddox's day.  I tried to take all of this news and pull from it that Maddox WILL walk one day with the use of assistive devices.  But, eventually my heart overtook my mind and I had my little meltdown over stupid words.  I cried about the words used in reference to my nephew.  Again, I know what his future may and/or probably hold, but words do hurt.  That rhyme we said in school about sticks and stones can break my bones, but words can never hurt me is NOT true (but, I won't tell Mack...I don't even know if they say that anymore...maybe I should bring it back!).  Anyway, on the rare occasion, no matter how strong and tough you are, words can hurt.  I told Kelly words are so heartbreaking, but nothing about Maddox is...he's perfect!  Then, I was left pondering again why I cry and this time I thought maybe it's because I NEVER want Maddox to be sad.  I know Maddox will never know any different and I know he is surrounded by LOVE and SMILES and FAMILY, but when he is older, I never want him to be sad about the situation he is in or feel sorry for himself because that would REALLY break my heart...maybe that's why I cry...or maybe it's one of the reasons.  When I write, I relive my feelings, so it's hard writing weeks and sometimes months later because I get upset all over again, then I think of how strong my brother and Kelly are!  I think of them everyday and how perfect they were for Maddox!  As I'm thinking of it NOW, I had to share it while the thought iwas passing!  I'm also constantly thankful that Kelly is someone that I am able to count as a friend and part of my family!  I can't imagine if I couldn't just text her anytime I wanted with a question or a story and if I didn't get a random texts with a pictures!  As an aunt that lives far away, I've got it good!  :-)

On April 15, Maddox and Kelly went back up to Yale for an appointment with Genetics to follow up with his chromosomal defect - the deletion of part of chromosome number 2.  They now believe that because of his cleft palette, two different colors in each eyes, deformation in his skull, the hydrocephalus he had, the wide space between his eyes, and his kidney problems that he may have Wahlberg's Syndrome as well.  The things I just listed are common symptoms.  Again, it is something that is so rare that they do not yet know what this could mean for Maddox's future.  They will just monitor him as he grows.  They did say, however, that Maddox was doing EXTREMELY well and that they are VERY happy that he is hitting his developmental milestones!!!  I chose to cheer on the last sentence mostly in response when Kelly shared the news because I am so PROUD of my guy and his AMAZING parents and how much they work with him so that he can be the smarty pants that he is!!!  They are also testing Kelly and Brandon to make sure for future children that this isn't a gene they carry, they said it's 99% likely that they do not carry it.  Kelly also said that she had "googled" Wahlberg's Syndrome and in some cases there can be severe intellectual disabilities, but so far that doesn't seem to be an issue for Maddox.  I admitted that I was afraid to google and that I HAD thought about it, but didn't do it.  Kelly admitted that googling was pretty scary and to remember that there were different degrees to how it can affect someone and that Maddox may only have some symptoms and not others.  I decided to stick with what I've done most of the time and learn through and with Kelly and Maddox and stay away from google so that I didn't get myself worked up about something that may never be an issue for Maddox. 

Then, yesterday, April 22nd Kelly and Maddox headed back to Yale yet again.  Yale loves them this month.  Yesterday's appointment was to have Maddox's kidneys checked..  he had an ultrasound done and there is still some fluid on his kidneys, but it does not seem to be getting worse.  They will continue to monitor that for now.

 

 

After all those appointments and all that updating, Maddox is a very sleepy boy!



 

 



Where I (Aunt Meisha) am Today...

I just returned from a little vacation and I stopped and visited two of my sweetest best friends on the way to my vacation destination.  When I visited each of them, Kristine and Katie, one of the first topics of conversations was Maddox.  Let me explain a little...we are the type of friends who don't have to speak everyday, but when we are together we are as comfortable as people can be and pick up on whatever is going on in our lives.  Kristine has a 4 year old little girl and is pregnant with her next little girl and Katie has a 2 year old little boy and just had a baby girl.  I went to SEE them and CATCH up on them and their kiddos. 

I stayed one night with each friend, Kristine being first, for Maddox to be an early topic of conversation with each FRIEND meant the WORLD to me!  Although they both knew bits and pieces, we basically started at the beginning each time and paused when they had questions.  It always led up to if he had any movement in his legs.  I said no, he doesn't he is paralyzed from the waist down.  I probably said it rather bluntly.  Using the word paralyzed is new for me.  I had seen it being used more frequently in Kelly's posts on Facebook and maybe in the email she sent me and the doctors use it.  After I said the word paralyzed so bluntly and got "THE LOOK" from each FRIEND, "the look" is a combination of sorrow, pain, shock, many things, general not knowing what to say or do next...I explained that previously I'd always said that at this point he hadn't had any movement from the waist down so far.  When I heard/read the word paralyzed, I had a good, hard meltdown...the WORD hit me hard in my heart, it physically hurt my heart, the word paralyzed sounds so permanent and confining.  I have no problem with the fact that my nephew will probably be in a wheelchair, but I still hold out hope that he will not need it all the time and will not be confined to it, we all still hold out hope that he will walk one day with any aids he needs...we will NEVER let go of HOPE, so the word paralyzed, kind of like the word disability wasn't a word I'd been using YET or ready to face.  Once I accepted the word (I think), I started using the word more freely and probably giving other people a very tiny percentage of the feeling and shock I felt when I had my meltdown, I'd say less than a 5% reaction to what I had.  I took it hard. 

What NO ONE understands and why I think any of this is a big deal anyway is how this wasn't found before Maddox was delivered.  The Spina Bifida itself isn't a big deal to any of us, I guess it was the SURPRISE and we are still processing and learning about it, I suppose.  Kristine was explaining her prenatal care as she had some high risk issues with both pregnancies, I was fortunate enough to be there for an ultrasound during her first pregnancy with Zoey!  The things she was explaining either didn't exist when I was pregnant OVER ten years ago, weren't available where I was, or weren't routine in normal pregnancies.  I know it's been a while, but I will always claim to be knowledgeable when it comes to pregnancy and babies and my friend was using terms I had never heard of as far as what she made it sound like was normal prenatal care.  Hmmm.  Well, the next day, I'd be speaking with a recent preggo who only lived about 30 miles away so if it came up, I could compare notes on what is and isn't normal prenatal care, I suppose.

When I got to Katie's and the topic of babies in general came up...her recent delivery, how Kristine is doing, how my Maddox is doing, I learned that for a lack of a better way to put it, that after Maddox was born since Katie was already far along in her pregnancy, she started to do interrogation sessions at her prenatal appoinments as to how Spina Bifida could've gone undetected.  I laughed a little knowing Katie and picturing this, then I took it to heart that Katie who'd never met them did something that meant a lot to me.  The overall gist that I got was that the South tends to have more high tech prenatal equipment than the North, which surprised me, but I believed it because of the equipment I'd seen at work at Kristine's appointments.  Maddox being at Yale up North was one thing, but as far as prenatal care, my friends weren't going to any SPECIAL care, this was just the care they received.  Detailed anatomy of the baby down to knowing how many veins and arteries there are in the umbilical cord?!?!  That seemed CRAZY to me, but again, it'd been over TEN years for ME! 

So, I am at a place of not understanding how you can see something that sounds as small as veins and arteries, but not something as big as a hole in a baby's back?  I'm glad for my babies that I love not born yet that technology develops all the time and hopefully anything that needs detected can and will be, I will never understand how Maddox's Spina Bifida wasn't detected.  Although detecting it wouldn't have changed things, I just won't understand.  Actually, "the look" I get when people hear his story and realize this went undetected is VERY similar to "the look" I'm getting when I bluntly say that he is paralyzed from the waist down.  Although, I go through a range of emotions and feelings in the journey I've been on since that beautiful boy was born, one emotion and feeling that has never changed is my unconditional love for him, maybe it changes because I think it grows with him!  I still cry on occasion when I get deep into the story or thought or there's a new term, but I'm never sure why.  I refuse to feel bad for Maddox.  He has a great life with great parents and I don't ever want him to be someone people feel bad for, so I'm not sure why I cry, but sometimes I still do.  Maybe out of my deep love and concern for him and his future and my desire to always be a caretaker and protector of those that I love.