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.

Jaxson's Adventure at Play Zone and Maynard's Donuts

Play Zone

I took the boys to Play Zone on 9 Mile Rd in Pensacola. My friend Lynne invited us out and I'm really glad she did, we were literally there for FOUR hours. Generally I'm a hermit because it is hard at times to go out with two boys, especially when one is special needs. I'm trying to do better because it's not JJ's fault, he's a crazy almost five year old and needs to let out his energy running around (wow where has the time gone?). I don't want him cooped up in his house all day because mom is afraid his brother is going to get sick (he gets sick easily) or gets hurt. I just have that constant fear of having to go to the hospital again.

The location of Play Zone is perfect! It's in a small shopping center and it has a donut shop, asian cuisine, boutique, Sammy Barker's, etc. You can let your little kids play as long as you can handle (lol), run over and grab some lunch, come back or go home, whatever you want to do! It's awesome. There is a baby area for children younger than one and then there was the toddler section with an awesome water bed both boys enjoyed. 

JJ in the toddler section @ Play Zone

Jaxson in the baby section @ Play Zone

Maynard's Donut Co

I've heard great things about this donut shop and I was happy to hear that it was literally RIGHT next door to Play Zone. YASSSS. They have all kinds of specialty donuts: PB&J, oreo, coconut, cocoa or fruity pebbles, maple bacon, maple, glazed, apple and peach fritters--YOU NAME IT. I was in donut heaven, it was so hard to just pick one haha. Jaxson tried grabbing it through the glass, that poor boy was hangry after our time at Play Zone.

via GIPHY

Y'all need to check them out!! Look at those delicious fruity pebble and toasted coconut donut. We saved this for last, we decided to let the kids run around for four hours first before we even thought about bringing them to the donut shop. Even in the donut shop they had a ton of energy.

Fruity Pebbles and Toasted Coconut Donuts @ Maynard's

I Heart Bento

Of course mommy had to stop into the bento shop! If you read the 21 facts about mom you would know that I'm half Okinawan and LOVE seafood. I really miss home and the takoyaki (fried octopus) definitely made me miss it even more. I just wish they weren't located so far from where we live, it's a good 40-45 minute drive because of traffic, it's crazy. I think they are literally 20 miles away from our house but the traffic is horrendous.

Spicy Tuna Poke Bowl @ I <3 Bento

The drive home...

Our little chunk and big brother definitely had fun yesterday. I will try my best not to be a recluse and do more with the kids. I'm definitely taking them back to that place in the future. 💙

Out cold