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200 Strong

DYRK1A

As mentioned in my Telling Tuesday post, changes in the DYRK1A gene–located in the 21st Chromosome–have been linked to:

  • Intellectual Disabilities
  • Microcephaly
  • Speech and Language Impairment
  • Seizures
  • Autism

and more (DYRK1A, 2018)..

200 Strong

As of the beginning of July, we have reached 200 families with DYRK1A Syndrome. Our Facebook group founder, Amy C., started the group in 2014 with one other member from the U.K. and reached up to 100 families within the first couple years. NOW, we are at 200 families! Amazing. The community is filled with so much experiences, knowledge, and love despite all of us being located across the globe.

DYRK1A Chart

A VILLAGE

It really does take a village. I do not feel alone in this journey even though the only interaction I have had with these families are over the computer with the use of social media–with the exception of meeting the Cobb family. We all have a common goal, to raise awareness, to put ourselves out there and be known. Not even a language barrier can stop us. I can’t wait to go to the next Meet Up in 2019 and meet our growing family!

SPARK

I’ve decided to go back to school as well with our recent diagnosis of DYRK1A. I want to be able to work from home and take care of Jaxson when he ages out of school. I don’t want to have to worry about him in the future. I’m currently pursuing a degree in Medical Billing and Coding at Ultimate Medical Academy–boy it’s tough! Definitely tough trying to focus on my academics and juggle two kids but Jaxson and his brother JJ have put a spark into me. A huge spark to better myself and keep fighting.

I’ll be graduating with my degree in February 2019, if you know of any organizations or companies that need a Medical Billing and Coder please let me know!

References:

DYRK1A. (2018). Retrieved from http://www.dyrk1a.org/start-here

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July 15, 2018
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An Open Letter to My Oldest Son

 Dear JJ,

I’m sorry.
Mommy is sorry for all of the times I have lost my patience with you. I know you don’t understand now but I hope you understand when you get older..
You see, mommy loves you so much but she is overly stressed with taking care of your brother every minute of every day.
I know it doesn’t make it right, but it makes mommy human. 
I know you get jealous and I am trying to do my best to juggle my time with you and your brother. You may not understand his condition but Jaxson needs a lot of my attention right now.
I love our movie and ice cream dates.
I love our tickle fights.
I love how you say “Smash-potatoes”.
I love your creativity and imagination.
I love that even at almost five years old that you still love to give mommy kissies and cuddles.
I want you to know that I am so proud of the little man you have become. You are so smart and so sweet.
Love, Mom

July 12, 2018
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Determination

Jaxson must be hitting a growth spurt or maybe it’s because he’s been around his older cousins while on vacation. He has been watching them and chasing after every single one of them at our BBQ.

He’s literally doing so much and developing such an awesome personality.

Recently I wrote about Jaxson drinking out of a straw and how he’s taking a couple steps before going face first into the ground. Last night he amazed us at 12:30 AM–yes, you read correctly AM. Jaxson is a party animal at night.

He started to push up on his feet and STAND for maybe a couple seconds. He did this so many times last night and would laugh, smile, and flail his arms back and forth with excitement. It was such the cutest thing. He was SO pleased with himself.

We also celebrated Airway Disorder Day 2018 yesterday–Did anyone else join us? I painted my nails light blue for my little warrior and he was rocking his Lu the Lamb onesie from Coping with LM.

He has a one track mind and is very determined but it’ll definitely benefit him in the future. He’s one tough cookie that’s for sure!

July 12, 2018
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Our First Flight!

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Boy let me tell you how nervous I was prepping for this flight! I have flown before, many, many times before. I was an Air Force brat who PCS’d every few years, flown with my oldest a couple times… I’m seasoned when it comes to flying.

HOWEVER.. Flying with TWO children and ONE with Special Needs? That had my stomach in knots. I made sure I packed enough snacks of fishies, veggie straws, formula, and packed some toys and my son’s Kindle Fire tablet.

I was a sweaty mess when we got to the gate.. got onto the plane and the stewardess looked at me with disbelief and asked: “Do you have anyone to help you?” I shook my head no and kept on trucking to our row of seats at the back of the plane.

I didn’t have have time to stop and purchase water after going through TSA so I asked the stewardess for a bottle of water. She gave me a HUGE bottle and recommended that I had something for him to suck on during take off..

Made me even more nervous.

I had his bottle prepped and ready, JJ playing his Kindle Fire, and the plane started to move. Then the plane started going faster and faster.. then the ascend. And you know what Jaxson did? He LAUGHED.

Yes, you read correctly, he LAUGHED.

He even laughed during the DESCEND.

I don’t know if it was a fluke or what but I hope our flight back to Florida is a breeze too!

July 5, 2018
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Things Not to Say to a Special Needs Parent

Things NOT to Say to a Special Needs Parent….

DISCLAIMER: I am NOT writing this to offend anyone. I AM writing this to show awareness and to be mindful of what we say to Special Needs parents. I asked around a Facebook page today and asked what phrases or words people (friends, family, and strangers) have said that upset them… 

When we were at the Naval Hospital in the very beginning, Jaxson was about three months old and this older lady strikes up a conversation with me. I know she meant well but when she asked how old he was and I replied with: “Three months old,” she gave me this look. She thought he was ONE month old, not THREE months old. I know she didn’t KNOW that our baby wasn’t thriving but it made me feel upset nonetheless. At three months old he was barely a little over his birth weight of 6 lbs 10 oz.

When I tell new people about Jaxson’s Rare Chromosome disorder I get a lot of crickets or blank stares. It’s not intentional, I know that, it’s hard to comprehend–I’m even having a hard time learning about it myself. JUST SO MUCH INFORMATION! I love that I have been able to find a special tribe that understands this journey of ours along with the outpouring of love and support from our friends and families.

“He’ll get better or he will outgrow it..”
Unfortunately with certain Rare Genetic disorders is that they aren’t going to get better like someone would from an illness or outgrow it like a child outgrows training wheels. Our warriors just learn to LIVE and ADAPT to their disabilities. Jaxson surprises us every single day with his accomplishments!

“Your child doesn’t look sick or he doesn’t look autistic..”
I know it’s meant to be nice but in all honesty, it really isn’t. When someone tells you about their child and about their Special Needs or Rare Genetic Disorder, please don’t tell them they do not look sick, they look normal, or happy. A Special Needs child and a child with a Rare Genetic disorder do not fit a specific “mold” or “one size fits all” so to speak. Two children can have the same genetic disorder but exhibit different symptoms and features.

“How old is he? …Really he is?”
Like most of the children with Special Needs or Rare Genetic disorder, Jaxson is developmentally delayed and speech delayed. His physical therapist stated that he is at about 8/9 months delayed so that would put him at about a 8/9 month old child level based on that diagnosis. So yes, he acts and appears to be younger then he is but he is 16 months old. I know this is unintentional like the Naval Hospital incident but it still makes me and others upset when are children are compared to others their age.

“Have you tried changing their diet..?”
Yes. Yes we have. Jaxson has mild dysphagia which makes it difficult to swallow, he has come a long way with Feeding Therapy but it still lingers. Because of his Rare Genetic disorder, we aren’t sure if it’s going to be a temporary thing or if it’s going to be long-term. Children with G tubes, NG tubes, etc. They’re on there for many different reasons, and asking them if changing their diet or have you tried changing your child’s diet isn’t something they want to hear. Like most, they’ve exhausted every possible avenue prior to having their children undergo life saving surgery for a feeding tube.

“He/She doesn’t act like so and so’s child..”
I haven’t dealt with this personally but a couple of moms on the Facebook page have and nothing is more disheartening or upsetting to hear that your child is anything but “normal.” Please don’t compare Special Needs children to other children.

I know I am super POST HAPPY the last couple days. I just really enjoy writing for this blog.. it feels very therapeutic.. like I’m finally lifting all this stress off of my shoulders. I hope I will be able to help someone else who is struggling for answers.

Want to share your experiences with me? Please leave a comment or message me, I would love to hear from you.

July 1, 2018
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