A short reflection

Look at where you are

Look at where you started

That fact that you’re alive is a miracle

Just stay alive, that would be enough

Lin Manuel-Miranda

There will be a longer blog post for this little guys 1st birthday in a few days, but just feeling sentimental and wanted to write something real quick. Snuggling this little guy for his nap, and I got a little emotional thinking about everything he has gone through in his short 12 months of life. More than most adults I know have had to deal with. He teaches me something new every day, and I am SO lucky to be his mom. His big party has had to be scaled WAY down for safety, and several key family members will be missing due to COVID concerns. But we will celebrate your life, and everything that you are. My miracle baby ❤

Cute pic below, longer blog this weekend with party details!

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A truly perfect human

Heartbroken

What a strange time it is to be an American right now. I am writing this while working from home, my computer live feed tuned into updates on not only the COVID situation, but of the protests and riots related to the George Floyd case. This entire week has been full of images of pain, and anguish, death, destruction and the like. It is also the first week of June, so we are beginning PRIDE month here in the USA for the LGBTQ+ community here. Overall the many overlapping hot topics right now make me feel like, I just.. wish there was more I could do.

I wish there was more I could do to help people of color, who deal with the systemic racism in our country, and who habitually are abused by police officers around our nation. I wish there was more I could do as a person with privilege as not only someone with white skin, but someone who is also CIS, and in a hetero-normative relationship with my life partner. I did not choose any of those things but I do passively benefit from them. I do not have to worry about being in public with my partner, and showing who I love to the general public, I do not have to worry about Police brutality when I get pulled over for a speeding ticket, or a traffic offense, I do not have to worry about being able to access buildings and essential places as I do not have to use a mobility device or have medical needs that keep me from easily accessing public spaces.

I also benefit from being an able bodied person, and our country’s views on both disabilities and immunocompromised citizens have become QUITE apparent since COVID restrictions have come into effect. I have heard from a majority of people since we began quarantine that, its “only” the elderly and disabled that are at risk. Its “only” people with pre-existing conditions. Well your “only” is my everything. Since having my child I have been wracked with the hard facts that this country does not care about disabled people, or at least as not as much as they should. I live in a state and country where my child can be refused at daycares, certain schools, camps and the like because of his medical differences, He can be refused care from physicians who “Don’t want to deal with it,” or “find his care too challenging.” While Corbin’s mobility is still ambiguous I know many kiddos with his diagnosis who do not have access to parks, playgrounds, public buildings, and many other countless areas, events and restaurants because they are not accessible by wheelchair. I live in a country where I was counseled to abort my baby because he would not be “perfect,” he would have certain physical challenges that would make him “inconvenient” to the system and therefore… what? not a person? Not worth it? Why do we not change our lifestyles and accesibility to help those in need, instead of treating those who are less privileged like THEY are the problem

My son is not the problem. Disabled people are not the problem

African Americans are not the problem

The Queer community is not the problem

They are PEOPLE. They are humans, with unique stories and lives and needs, and they deserve the same rights and access, and benefits, that ANYONE else deserves.

My son deserves safe spaces to learn and grow and connect with his peers without feeling like a burden

Black Americans deserve to feel safe around first responders, and in their own communities living their lives. They should not live in fear, especially not of people sworn to protect them.

LGBTQ+ citizens deserve to love whoever they want, to have their families and live with the same protections as straight couples. They deserve to adopt children, and not be discriminated against should they decide to start families.

Since becoming a special needs mom, I have had to advocate for my son, for things that most other people take for granted. People should not have to advocate full time for things that are basic human rights. It has opened my eyes to some things that I was ignorant to in the past. I was not maliciously ableist, there were just many things I just.. didn’t know! I didn’t know certain things as an able bodied person who did not have any disabled people in my inner circle. That has changed. I learn new things every day. It is OKAY To admit, that you have new information on a topic and now have a new perspective.

That happened to me. I implore you to read, and to educate yourself on the perspective of people who are disenfranchised, and less privileged than yourself. Listen to your peers, listen to their stories.

If you are reading this, I am listening

I love you

Love,

Laura

Updates!

Hello Everyone! Long time no see, as far as a traditional blog entry goes. Everything has been so strange and I have been mostly posting on our FaceBook page (Which please go “like,” if you have not already) . We had a small surgery this week, which we had been waiting on since before all of the COVID restrictions. Baby Corbin’s heels had tighened back up after his initial heel cord release back in September, so we had a follow up this past Tuesday, and was successful! We are hopeful this one will stick, and once we go in for our follow up we will get the little guys first set of AFOs!

We are so excited that we were approved via insurance and will be receiving the baby’s first mobility aid! These AFOS (which are braces that will help us with weight bearing) A lot of children with Spina Bifida require a little more help with ankle or calf support, and this bracing will be our first step to walking! We are unsure how much assistance Corbin will need in the future with his mobility but we are so excited to start this journey towards his independence. We have been seeing PT once a week, and once some more COVID measures are lifted we will be going twice a week! We have seen so much improvement in his strength and abilities since we began Physical Therapy, and are overjoyed with the care we have received so far.

At almost 11 months old, we now have four teeth, and say two words (None of which are Mama!) We say “baby” and “Dada” for now. Our sitting has improved drastically, but we are still working on crawling. We have tried a lot of new foods, but our favorite so far has been pizza crust of all things! Don’t you worry readers, Mommy feeds us lots of fruits and vegetables. We love swimming in the pool, and have become quite the water baby! We are all getting a little stir crazy in the house together, and cannot wait until we can branch out a little bit and perhaps do the socially distanced nature trails nearby.

Overall just wanted to give everyone an update! Our family is staying safe and health at home. We have some follow up imaging to do once we hit the 12 month mark, and clinic reopens. Baby is doing great, we just wish we could enjoy more of the summer outside of the house!

Stay Safe Everyone!

Love,

Laura

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Watching cartoons at the hospital. We were so brave!

One year removed

The best way to predict the future is to create it

Abraham Lincoln

One year ago Corbin and I had our open fetal surgery to repair the hole in his spine. One entire year ago we went through several hours of major surgery together, and around this time I was already out of the OR, and sleeping in a recovery room. Our amazing doctors communicated to my husband Jesse that the procedure went well, and there were no complications. Honestly I cannot believe our journey in Philadelphia was a year ago, to me it seems like we just got home last week. I have such vivid memories of my fears of surgery, our many OB appointments, ultrasounds, lots of tears, but also lots of hope.

In the Spina Bifida community, the anniversary of one’s fetal surgery date is known as a child’s “Butt-day,” the day their tiny spines and butts were exposed to the world and repaired by the surgeons. We also refer to it as Corbin’s, “Sneak peek,” and “Miracle,” day. Originally I was planning on a family bbq, and pool day with his grandparents, but of course due to COVID restrictions we are abiding by social distancing, so that had to change. So we made cupcakes, and Corbin got to try cake for the FIRST time, (It was a HIT!) we took some funny pictures after play and bath time, to show off our scar, and show how strong we are. Mommy, Daddy and baby have had lots of cuddle time, and sang silly songs. My husband is thoughtfully making me a special dinner tonight, because in his words “You went through something hard too, not just the baby,” and he is re creating my post surgery meal from 2019. (Ravioli, garlic bread, and lemon bars for anyone curious) We will spend the evening as a family, and reflecting on the last year.

I wish I could speak to past me, and tell her that everything would be okay, that it would be a long and difficult road, but that, the little baby in her tummy would defy all odds, and amazing his doctors and therapists every day. That he would be unconditionally loved by his family, adored by his parents and grandparents. That he would have a funny laugh, and a cute smile, and already an amazing sense of humor. I wish I could hold her hand when she cried and erase all the fears and doubts. There will be setbacks, and bad days, but that he is the most amazing odds defying warrior, and the best thing to ever happen to her family. He is perfect.

Thank you to everyone who takes the time to read this blog. Thank you to my incredible husband, who is the most amazing father to Corbin. Thank you to my family and friends who have supported all of us throughout the last year and a half of our journey. Thank you to everyone who cheers on Corbin from near and far, we love and appreciate you! Pics from our Butt/Sneak Peek day below!

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Quarantine

Well… where to even begin. We are currently home bound with all of this COVID-19/Corona virus spread in our home state of Florida. Jesse and I are both lucky enough to be able to work from home, so we are juggling working our normal schedules, taking care of our baby, and doing home projects and cleaning while we are here in the space anyway. I am fortunate we are continuing to get paid, I am fortunate we still have benefits, and our baby is safe at home, away from strangers and possible infection. Having a medically complex child in these times of crisis is very anxiety inducing. I have lost sleep, I have gotten stressed enough to take rescue medication. I stocked up on my child’s medications from the pharmacy in case they close in the near future. I am constantly weighing the pros and cons between staying home, and going to his appointments and therapy appointments, stuck between knowing that he needs them, and not wanting to risk infection.

In the last several weeks since Clinic, Corbin has made a lot of strides in physical milestones including rolling from back to belly for the first time! He got his physical therapy evaluation and pending insurance approval he will be going to PT at All Children’s twice a week. I was so excited for this to happen, and for him to get proactive help with his gross motor skills, only to be sad and paranoid, knowing that he would be in a facility with lots of strangers, children and adult alike, and whether I would want to risk him being exposed to the virus. I so badly want him to have his sessions, and we are all waiting for guidance, not knowing what the timeline for these CDC recommendations will be. We are limiting contact with the outside, only going to pharmacies and grocers when its not avoidable, going first thing in the morning and promptly leaving. Lots of hand washing, lots of hand sanitizer.

In a way I am very prepared for the social isolation, as less than a year ago I was on strict bed-rest after my fetal surgery. Jesse and I were stuck in our small room at the Ronald McDonald House for almost 18 weeks just the two of us, so we are very used to staying at home together and not going completely stir crazy. We get along, and have a large enough living space that if we need alone time, there are rooms we can go. I have the physical and emotional space to scream and cry, and get frustrated, but also to meditate and pray, and take the space to feel grateful. There are so many people out of work, and struggling, and full of fear, and there are so many medical professionals putting their own health at risk, and doing the best they can to help people through this dark time.

The most frustrating thing I have seen lately is the callous attitude of others who say “It is ONLY the elderly and immunocompromized at risk,” As if.. those people don’t matter? Those fringe groups matter. The elderly matter. Cancer patients matter. Disabled adults and children matter. It is a completely privileged and cruel viewpoint, and completely ableist. YES if I were to contract the virus tomorrow I would be fine, I would recover. But my elderly grandmother would not, my parents may not, my special needs son may not. I am willing to be bored for the next several weeks or MONTHS if it means those people, and others like them get a better shot at not getting infected. People need to look at the bigger picture.

So in the meantime, to try and flatten the curve, I am staying home. My family is staying home. We have been cuddling on the sofa, and cooking together, taking in a lot of family time. Mommy has watched Frozen II about three times already. Disney plus is constantly on in the background.

We are doing our best.

Wishing you love and light,

Laura

My Golden Child

A person who has never owned a dog has missed a wonderful part of life

Bob Barker

So about two weeks ago we lost our eldest dog Midas. I haven’t had the heart to write about it because it just doesn’t seem real. Midas was named after the mythological King, as he was adopted at a point in time when my husband was portraying him on the stage, and he also was golden in color. He was my husbands best friend, and also my first dog. I am a cat person. I have always been a cat person, I have had cats all throughout my adult life so becoming a dog mom this late in life was a treat and I was so lucky to be his mommy. Midas came into my life about halfway through his own, once Jesse and I moved in together.I am grateful for every day we had, and I loved that dog ferociously.

Midas had a traumatic experience with a bigger dog when he was young, and therefore was not the most social dog. He liked his little brother Chewie, he tolerated out cat, and he loved me, my husband and Corbin. He would often sit with me in the bathroom, and snuggled under my armpit every night once we bought our family home, and especially when I was pregnant, often spooning my growing belly. He was quiet, and intelligent, and thoughtful. He was crafty, and loved pets, and wet food. He liked long walks, and to nap in the sunny spots that would shine through our windows. He was photogenic, and exuberant, and the token LBGT member of our household (Its true! ask my husband, he had some crushes on male dogs)

Midas would lay with you when you were sick, he was very empathetic, and we would often joke that he must have been a human in his past life, as he had very deep and soulful, human like eyes. He was too smart for his own good, and would often dig through the kitchen garbage and try and blame it on his little puppy brother, or at times even fake dogs/stuffed animals. As if my husband and I would blame a beanie baby over him, standing over the evidence. He lived in many climates, and cities, going between Tampa, to Chicago, back to Tampa and then up to Pasco County to our new house. He was with us though moves, weddings, holidays, and the coming of our new family member baby Corbin.

I think the saddest part about losing him, other than the fact that it was very sudden and unexpected, was that the baby wont remember him. Their memories together will only be remembered by Jesse and I as observers. He was the best dog. On earth. It is not up for debate.

I just wish my baby boy could have grown up with him . He will be in my heart always

Slow Burn

Slow but steady wins the race

Aesop

Some days being a special needs parent is really difficult. Today is one of those days. A lot of my friends have had babies within the same six months to a year of us having Corbin and while I know that his milestones would be different than his peers, not only due to his SB but also because of his pre-maturity. at times it can make my mom heart confused and upset when I see his peers surpassing him, or younger babies hitting milestones much more quickly and easily than he can. All of his doctors consistently say how well he is doing, and how they believe he is on track, but to see kiddos much younger rolling and crawling all over the place is challenging. I feel selfish even expressing these thoughts. Mobility is not a pre-requisite for happiness, and he will achieve what he can, and I am so proud of him always. It almost is just a stark reminder of the part of me that still blames myself for his condition.

Every doctor has told me that is not the case. But when we go several weeks with no changes, and seem to stagnate, I cant help but battle the little voice in my head that reminds me that if only I had grown him better, he would not have to deal with all of this. The logical part of my brain knows this was not my fault, but some days I backslide pretty hard. I just so badly want him to know how much I love him, and how he fills me with awe with every milestone.

I will never forget the first time I saw him non-nonchalantly roll over, and then give me a face like, “Oh this is no big deal mommy!” It IS a big deal little guy! and YOU are a big deal.

You are the BIGGEST deal.

We have a clinical/traditional PT evaluation in a few weeks through the Children’s Hospital. I have heard nothing but great things about their therapists, and I cannot wait to get him in weekly therapy. I am hoping this proactive approach helps him reach some milestones that he is SO CLOSE to. I feel like he is really close to rolling over in the other direction, and to crawling, and would love some strategies to help him as much as I can.

This week has had some ups and downs… then more ups, …. and then more downs. A roller coaster of emotions for this mama.

He is getting there, in his own way, and on his own time. I need to remind myself of this from time to time.

He is mine, and he is perfect.

My Funny Valentine

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Look at this little squish! So lucky to have him everyday. First clinic visit went pretty well, all is mostly status quo for now, we will do more imaging in 3-4 months, but meds and treatments remaining the same for now.

I am happy to cuddle him every day, and so happy to have TWO handsome Valentines this year!

Feeling especially blessed today. Mostly posting for cute photo op. ❤

Sleeplessness

The best cure for insomnia is to get a lot of sleep

W.C. Fields

This week has been rough. The little one is in what is referred to as a “sleep regression,” and has been keeping Jesse and I up ALL night. We were blessed with one of those babies who slept through the night almost immediately, so this felt like a deep betrayal on his part. I have been the sickest I have been in YEARS, with lots of coughing, sore throat, fatigue, and insomnia due to lack of ability to breathe. For the past five to six days my husband has been exclusively waking up with Corbin in order to try and let me sleep, we are both still working forty hours a week, and trying to have some semblance of a life. It has been a rough time in our house, and it will come to a head tomorrow when we head to our FIRST Spina Bifida clinic Day. We will be travelling to Orlando, and spending the next two days doing imaging/testing and then a clinic day on Friday morning.

For SB kids, Spina Bifida clinic is a day where you go to your clinic and see many many doctors and care givers all at once, and then meet and speak about your childs ongoing care plan, their progress and general wellness and progression. To say I am nervous is an understatement. I am sure my general anxiety has been part of my insomnia, I am so apprehensive about this set of appointments. I am so grateful that the baby has been doing so well. His local doctors have been so impressed with him, but after such a complicated 2019, I am so scared to get bad news. I know I have to be optimistic and just hope for the best, but we have had such a hard year, and I know my heart cant take any more bad or complicated news.

I am so proud of this baby. He is the light of my life. I am so happy he is in our life, and he has truly completely our family. I have no words to express my love for him and his tiny heart and soul. His big blue eyes, and his smile, and his spiky hair, and his cute little belly laugh. Sometimes when you go to so many appointments, and see so many doctors, and are constantly in clinical environment you get frustrated because you want everyone to see your baby as a baby, and as a person, and not a statistic or a patient. I just want to enjoy him and cherish our time together as we approach his seventh month of life. I want people to see his fun personality and his heart, his cuddles and smiles, and not his complications or medical conditions

I am dedicated to getting my baby the best health care possible. I am dedicated to giving him his best shots, and the most opportunities he can. We are a fiercely supportive family. I will not be overcome by my fears and anxiety

He is strong. He is loved. He is capable of anything.

Wish us luck this week!

At least ONE of us is sleeping…

New Year! (Same me?)

Cheers to a new year and another chance to get it right

oprah winfrey

Well, its 2020. 1990 and 2050 are equidistant to each other as of right now. (YIKES) and here we are flooded with lots of messages about new resolutions and goals from all angles. I have fallen into those pitfalls in the past, and given myself really strict or quantitative plans and deadlines, inevitably leading to failure. This year I am going to focus on more qualitative measures, and more than anything I am going to try and be KIND to myself.

The last year has been SO hard. Over the past month I have found my anxiety and depression spiking, my menstrual cycle and hormones are all over the place despite being back on the pill. I’m struggling with a lot of acute anxiety symptoms related to hospital stays, and January and February are chalk full of inpatient and outpatient testing and appointments that keep me up at night. Quite literally. I have not been sleeping well. My goals this year are to get to a healthier place both mentally and physically. I called my primary to make an appointment regarding my physical and mental health, as both have been kind of in the dumps. I had my well woman visit, I hired a personal health trainer, and am working on exercise and healthy eating habits. I need to be the best me I can be, in order to navigate the very hard world of special needs parenting, and be the best mom and advocate I can be for my son.

One step at a time…

Update to follow, hopefully next month on how all of those things are going. So far I am battling a lot of anxiety and dealing with a lack of self worth. That is baggage I do not want to bring into the new decade.

As far as a baby update, he is doing great. He now rolls from stomach to back (although only when HE feels like) we are close to getting back to tummy, but we cannot figure out what to do with our hands. We are working on applying for secondary PT to come to the house, most offices are still closed for the holiday so been some red tape.

The only bummer for 2020 so far, and I am sure this is a bummer for many of the families I know that have medically complex children, is that as of Jan 1, all deductibles and out of pocket maximums start over.

My reaction to the new insurance year starting

Stay healthy everyone, and talk soon

-Laura