Jul 12

Jul 12 Code brown

Are you eating? Thinking of eating? Just eaten? Maybe wait to read this post till later. I’m typically motivated to write about whatever is dominating our life at the time and honestly, right now, its poop. This is the life folks, just soak in that glamor! Up until last week, Adelaide was frequently constipated. This was likely due to a combination of having low tone, her mast cell activation syndrome and, certainly not helped by the fact that nearly every drug she is on lists constipation as a side effect. I’m going to pause here and remind everyone to be careful what they wish for…

Jul 5

Jul 5 Dependence day

Kelly Cervantes

Yesterday, Miguel and I celebrated 10 years of marriage - which sort of blows my mind. The irony of getting married on Independence Day was not lost on us but Miguel found out he would be performing in the Broadway bound American Idiot in San Francisco on our original wedding date soooo we got our first taste of the many curve balls life would eventually hurl at us. While reminiscing on the last decade a few valuable lessons rose to the top. So, I decided to share them in a blog, and not just for my reader’s benefit but also as a reminder to myself for when things aren’t going quite as well… which is inevitable.

Jun 28

Jun 28 Family planning

Kelly Cervantes

We only ever wanted to have two children. That was always the plan. A) I had no interest in being outnumbered by my kids and B) while growing a child in your body is an unreal experience, the gas, aches, nausea, swelling and all the rest of it is no joke. When Adelaide was born seemingly healthy, I thanked my uterus for its service and mentally closed up shop. Then life got complicated and we were faced with a whole new set of family planning questions.

Jun 21

Jun 21 Haunted

Kelly Cervantes

In the earliest days of our Google dumpster dives researching Adelaide’s symptoms one word kept coming up: neurodegenerative. According to the dictionary it means: resulting in or characterized by degeneration of the nervous system, especially the neurons in the brain. The most well known neurodegenerative diseases are Parkinson’s and Alzheimer’s: conditions that typically affect adults, and mature adults at that. So why was this word coming up in searches for information about our daughter?

Jun 14

Jun 14 Hamildad

Kelly Cervantes

More than anything in this world, I am grateful for an incredible partner with whom I can share this life journey. For if we are placed on this Earth with a purpose, there is no doubt in my mind that Miguel’s purpose is to be a father and he exceeds at fulfilling it everyday. So, in celebration of Father’s Day, this seems like the perfect opportunity to dish on Miguel and why he really is as amazing as you think he is.

Jun 7

Jun 7 My double life

Kelly Cervantes

I have a confession to make: I’m leading a double life - or at least thats what it feels like. In one life I am the parent of an able-bodied and neuro-typical child, we go to little league games, do homework and fight about screen time. Then there is my special needs parenting life where I am measuring meds, counting seizures and managing medical, therapy and nursing schedules. At home these lives are intertwined but when I step outside of the house the stark differences can brew a social anxiety that I’m just now figuring out.

May 31

May 31 The VNS deets

Kelly Cervantes

On Wednesday, Miss A proved once again what a bad ass she is when she underwent surgery to place a Vagus Nerve Stimulator (VNS) device in her chest and neck. In this week’s blog, I break down what this device is, what we hope it will do and why I broke my oath to never put Adelaide through another invasive procedure.

May 24

May 24 Grandpa's turn

Kelly Cervantes

Adelaide is having a surgical procedure next week and the pre-op appointments this week are A LOT. So, I called in reinforcements! Last month you go to meet my mom, this week you get to see our journey with Miss A through my Dad’s eyes: a little salty, very cautious and all heart. Please enjoy Grandpa’s POV.

May 17

May 17 All good things

Kelly Cervantes

After the overwhelming response to last week’s post I realized a follow up was needed so this week I start there. But life doesn’t stop while we’re discussing socially charged issues and this week it was announced that Hamilton would be closing up shop in Chicago. Despite, in spite or because of Adelaide’s challenges our time in Chicago has been pretty incredible. Do we stay? Do we go? Time will tell but if you’ve learned anything about us you know we’ve got this.

May 10

May 10 All my children

Kelly Cervantes

This was a challenging post write and may be a tough one to read. I ask that you please read in full and that you keep an open mind. With Mothers Day around the corner we celebrate those that gave us life and enjoy being celebrated by our own children. But we are also reminded of those who have lost their mothers, or who have lost children, or pregnancies, or who wanted to be mothers but it wasn’t meant to be. I am the mother of three children, although, I only ever met two of them. Miguel and I made an impossible decision nearly five yers ago and while I’ve never kept baby Elvis a secret, I realize that now more than I ever, my experience - especially with the perspective of a special needs mother - needs to be shared.

May 3

May 3 Adelaide's Army

Kelly Cervantes

Monday, May 6th is Nurse Appreciation Day and, girl, do we have some nurses to appreciate! I am often asked how I am able to do all I do. There is only one answer: I could not do any of it without our amazing, caring and dependable nursing support. There is a full roster of medically trained professionals that go above and beyond to make sure that Adelaide is living the best life available to her. They are Adelaide’s Army.

Apr 26

Apr 26 Big brother

Kelly Cervantes

I used to envy the way Jackson could see Adelaide without the sadness that tinged my view. However, as Jackson is getting older he is gradually beginning to understand how Adelaide is different from a neuro-typical sister and it pains me to watch the sadness and worry creep into his life. There is no question that their special-needs sibling bond adds so much to both of their lives but like everything else in this parenting circus it is a balancing act. A really stinking cute balancing act, but one all the same.