Life as a Rare Chromosome Parent

I'm going to get a little real with you all...

If you talk to any parent who has a child with Special Needs or a Rare Diagnosis, a lot of them will tell you about their feelings with anxiety, depression, and secondary trauma. I have experienced ALL of these feelings or symptoms. I only shared my feelings with a select few so this might come off as a shock--"I didn't know you felt that way."

Anxiety

"A feeling of worry, nervousness, or unease. - Dictionary."

Anxiety

I had anxiety prior to this but it was magnified after my pregnancy and delivery of Jaxson. As most of my readers know, I had a high risk pregnancy and Jaxson was in and out of the hospital the first six months of life. I took him to so many different specialists, so many well-baby visits. I was frequently worried about something terrible happening, I didn't like to go out of the house, I was angry a lot, quick to get angry.. I didn't feel like myself. I especially felt like such a jerk and bad mom because I was so short with my oldest son. Every little thing he did I freaked out because I didn't want him to wake the baby, hurt the baby, get the baby sick, etc.

Depression

How to recognize the signs here (Depression in Parents of Children with Special Needs).

Depression is real

Some may wonder what did you possibly have to be depressed about? You have an amazing support system, amazing husband, beautiful family, etc.. Despite having all of these things, a person can still have some form of depression. My depression stemmed from having a child who was in and out of the hospital because he wasn't thriving and frequently ill. I felt helpless because I couldn't help him, I tried everything, and yet he wasn't thriving. I thought I had failed him as a mother.

I was up every other hour pumping furiously, tracking his consumption, thickening his feeds per feeding therapists, I literally did everything. I pumped an entire chest freezer full of milk that he couldn't drink because of his severe Reflux/GERD, I ended up donating it all to a patient I met working at the Chiropractic Office. That made me feel as if I was a failure as well, I pumped ALL of this milk for him to drink and he couldn't, he couldn't thrive off of my milk.

We did have great friends who were able to drop in and check on us during these difficult days. I'm thankful each and everyday for them. Why? Because we are a military family and our parents, siblings, and even cousins are not nearby. Friends are everything to us, they're part of our family.

Reach out to someone who is going through a rough time with their special needs children or any difficult part of their life. Trust me when I say it will mean a lot to them, even if it's just sitting in with them or something simple as bringing coffee.

Secondary Trauma

Secondary trauma, yes. You can have that too as a parent with a chronically sick, special needs, and rare chromosome child. Most people think that you can only have PTSD when you're away to war--that's not the case. Having frequent anxiety because I have a child with special needs and was in and out of the hospital can trigger secondary trauma. Whenever I had to make an appointment for Jaxson or went in for an appointment I got this anxious feeling. Don't get me wrong, he's thriving now and everything is going well thus far but I have that constant worry that he may be admitted again or he will stop thriving.

I also worry about my oldest son. A few months ago I ran him to both the Naval Hospital Urgent Care and then Emergency Room at Sacred Heart because he was having severe pain in his side. I was scared and anxious that it was something serious, something life threatening. I was so blinded by fear! Thankfully it wasn't anything serious, he was just backed up and needed an enema (poor guy).

Symptoms of Secondary Trauma:

• Chronic fatigue
• Sadness
• Anger
• Poor concentration
• Second guessing
• Emotional exhaustion
• Fearfullness
• etc. 

I wanted to share my experiences of these emotions in hopes to help another. These feelings are normal when you have a child that isn't thriving, seeing multiple doctors every week, chasing diagnosis after diagnosis, all the therapy, etc. YOU ARE NOT ALONE. The fist step is to admit and talk to someone, it will get better over time.

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

Connecting with another DYRK1A family

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Lunch at Rotolo's Pizzeria

The thing about rare chromosome disorders is that because it is so rare it is hard to find someone who understands and relates to the challenges you went through. I'm not going to be able to make it to the DYRK1A Meet up in Charolette, NC but I was fortunate enough to meet an awesome family here in Florida. They were vacationing from Birmingham, AL and reached out to me and I'm extremely grateful because I wouldn't have had the guts to do so myself.

I thought I would've been extremely shy and awkward but the get together was anything but. We connected right away and spent two hours chatting about our boys and our lives.

It was amazing to see another child in person with Jaxson's condition--I didn't think I would find someone so close by.

Their features are so similar, it's crazy! Especially around the eyes and nose.

It allowed me to kind of see what our future holds--what to expect with Jaxson. Nothing is set in stone with DYRK1A, everything is so new.. but that's the good thing about connecting. You can learn and ask many questions with families who have been through this longer than you.

It also affirmed that our DYRK1A children are different despite having the same gene mutation.

I really enjoyed their company, as did my boys JJ and Jaxson. JJ spent most of his time on his Kindle Fire but he still had fun discussing his Angry Birds and Sesame Street games with Trotter.

Trotter is so sweet and funny. I hope you got that banana bread you were asking for at the end of our lunch!

I can't wait to meet other families with DYRK1A! Hope to meet some of them when we move up to NC in the fall or at the next DYRK1A meet up in 2019.

Thank you for reading!

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.

Inchstones Not Milestones

What are Inchstones?

Like most families I celebrated all of the typical milestones with my oldest, JJ. He reached all of his milestones early.. he crawled by five months, he walked by eleven months, cut his first tooth by seven months, he upgraded to a sippy cup by nine months, and so on and so forth.

So what does inchstones mean? Let's do some math shall we (not my strong suit so bear with me lol):

An inch is an inch.
And 36,650 inches make a mile.

An inch is smaller than a mile but with a special needs child you celebrate every. single. achievement. No matter how small.

No longer needing thickened feeds, consume a 5 oz bottle in less then five minutes (use to take him an hour to consume one whole ounce), and eat small finger/table foods and snacks.

Jaxson just recently started to take two to four steps unassisted AND standing for a couple seconds before plopping down. HUGE ACHIEVEMENTS. Just six months ago he started to army crawl, then he started to crawl on all fours and sit up four months ago, pull up to stand and cut his first tooth three months ago.. and now look at him, 16 months old and taking his first unsteady step.

Potato baby no more!

Pushing our vacuum around

Aero Digestive Clinic

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Look at that double chin

Sunday we left for Birmingham, Alabama to see an Aero Digestive Team at the Children's Hospital. The ride was AWESOME, Jaxson did not scream for hours and did not throw up all over himself. We always dread driving with him but since switching him to forward facing it's been a lot more bearable lol.

Our appointment was SUPER early, 0745, so we decided to leave the afternoon before and stay at a hotel.

JJ had his Kindle Fire 7 Kids tablet and portable DVD player and as long as Jaxson had snacks and his bottle we were golden.

Eating some crackers

Left the hotel at 0700 and stopped for the essential... Dunkin Donut coffee with a turbo shot. Coffee has been a staple since the day this little peanut was born, lol.

Parking is ridiculous at UAB, if you ever go to see a specialist--GET THERE EARLY! Allow enough time to park and PLAN TO WALK A LOT. I brought my carrier this time and carried Jaxson through the hospital as my father in law pulled a Radio Flyer wagon (they provide these) with my oldest in it.

Thank god for family! I don't know how I would do it without them!

When we checked into Clinic 6, they had us go up to Imaging to have an x-ray of his chest done prior to the appointment.

Afterwards they took our little peanut's vitals and I should say that he's no longer a peanut.. he's a chunk chunk. He's a whopping 22 lbs now! If you would've told me he would go past 10 lbs this time last year I wouldn't have believed you! He's still on the short side, 29 inches, but that is to be expected in children with DYRK1A syndrome.

We saw a team that consisted of a Pulmonologist, Gastroenterologist, and two Speech Therapists. We mentioned our concerns and that we wanted a second opinion on his sleep apnea and gastro problems. Jaxson has been sleeping terribly for months now and I have been worried it's related to his diagnosed sleep apnea. It's probably more behavioral but I wanted to rule out the apnea to ease this momma's mind. 

Sleeping

Found that with his current weight that his dose of Zantac is TOO low so we will be adjusting that dosage to help with reflux. Sleep study will be scheduled for when we move up to North Carolina and possibly done at Duke. The chest x-ray came back normal as well!

Swallow Study

They sent us down for a swallow study to rule out aspiration for his choking and gagging on solids and his almond milk. He hadn't had a swallow study done since he was a month old so thankfully they put in for this.

HE PASSED. 

The barium swallow study showed no penetration when he consumed thin liquids, puree, and crackers. GREAT NEWS! I'm so relieved. The Speech Therapist who did the test thinks the choking and gagging is more Sensory related so I'm hoping I can expedite his Occupational Therapy referral with this information. 

I might look into this more thoroughly to ensure that it's indeed Sensory related.

Now I just have to worry about our flight on July 3rd, Jaxson has NEVER flown. 

Send good vibes please!

Support Saturday

Rare Chromosome Awareness week is coming to an end...

Today is Support Saturday, and what does that mean? You can either donate to Unique, other rare chromosome organizations, research... OR just show your rare chromosome family support by helping raise awareness and just being there for them!

Whatever way you choose to Support our Unique family, Thank you. Thank you so much.

I hope you all enjoyed reading my blogs for the Rare Chromosome Awareness week!

Also, please follow our blog for future posts about Jaxson and his family! The follow button is up top on the right.

Funday Friday

Today is Funday Friday! 

We do this for you Jaxson!

We dressed up as Batmom and Ninjago in honor of Jaxson today for Rare Chromo week. Whenever someone told us how much they loved our costume we mentioned it was for Rare Chromosome Awareness week! 

Movie date

I also went to go see Jurassic World with my oldest for a little bit of a mommy and JJ date. I like to make it a point in spending time with just JJ since I give a lot of attention to Jaxson with everything going on. We definitely had fun! Even bought some ice cream afterwards.

Batmom and Ninjago 

FLEX

Next year I will ensure that I have a flyer or brochure of some kind to hand out for Funday Friday!

How did you show support on Funday Friday?

Thankful Thursday

Thankful Thursday

Today I am thankful for....

Jaxson is no longer Failure to Thrive.

Jaxson can now stand unassisted for one to two seconds.

Jaxson can now take steps while holding my hands.

For our amazing friends and family.

For Jaxson's happy disposition despite everything.

How much my oldest loves Jaxson and wants to protect him.

Therapies that help Jaxson overcome this syndrome.. He surprises us everyday.

DYRK1A support page -- no longer feel alone in this journey.

For my strength and determination.

For my rock, my best friend, my husband James.