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

Onward and upward

As of tomorrow my little baby Angel will be FIVE MONTHS OLD. I cannot believe it! If you had asked me even three months ago, still in NICU how I would be feeling at this moment, I would not even know what to say. It all felt so un-ending, and while I have anxiety over some upcoming neurosurgery appointments, overall I am going into the winter holiday season in a great mood. It is hard some days, to not dwell on how hard things were at the beginning, I almost feel like I am waiting for the other foot to drop. I think that is a voice that all special needs parents hear in the back of their head from time to time.

“Oh he is doing so great!” ……. For NOW

“He is making so much progress” …….Just you wait

I think I am so pleased with how great he has been doing, and how amazing his care has been, but am realistic enough to know that we will not be without struggle and complications. Do I delude myself into thinking everything is perfect, knowing that the rug will eventually come out from under me? Or do I be more realistic and attempt to not let that snowball into pessimism.

I think that I just need to take everything one day at a time. With each appointment, and physical therapy session, and bill, and phone call, I need to just take a deep breath and live in the moment. I need to enjoy my baby while he is a baby. I need to get those late night, and early morning cuddles, and play peek a boo.

Baby seems to recognize faces a lot better now. Which has been so nice, as I was worried about going back to work, and losing our connection. When his Daddy or I pick him up from the grandparents in the afternoon he greets us with smiles and squeals! He is getting along better with his puppy brothers, and the cat is starting to explore his room, and decide that they are at least neutral. He is such a happy and joyful little boy, and so full of life.

We are so lucky.

Image may contain: 3 people, including Laura Gonzalez Hutson, people smiling, people sitting

Friends and Food

The thankful receiver bears a plentiful harvest

william blake

As we enter into Thanksgiving week, and the beginning of the holiday season, I wanted to reflect on what I am the most thankful for, that of course being my family. We spent the weekend surrounded by friends, eating good food, and will continue to do so as the week moves forward. Siblings, cousins and relatives will be arriving to celebrate Thanksgiving, and the both literal and metaphorical harvest of the year.

I feel so lucky so be at home and celebrating with my family after what seemed like an eternity in the hospital. The word that keeps coming to mind for me at this moment, is “bounty.” I feel so full of love and hope for baby, my family, and our life, and am so happy to have him with me everyday. He is thriving, and we are so happy as a unit. I cannot imagine not having him in my life. I am so excited to see what we have in store for the winter, and look forward to celebrating the Yuletide season. More updates to come! My heart is full.

The one where she went back to work

The key is not to prioritize what’s on your schedule, but to schedule your priorities

stephen covey

So after three months of medical leave, and twenty weeks of maternity leave I am finally going back to work a week from tomorrow. I don’t quite know how to describe how I feel about it, as the thought of leaving my medically complex child at home, and commuting to work, and working my 9-5 job as if it was normal is blowing my mind. My son has changed my entire world view, my entire schedule, and all of my priorities. I feel like I have finally settled into my daily routine of being a new mom, as well as a special needs mom, and now its going to be flipped upside down once again. It took until this week to get all of his initial doctor visits, many rounds of casting, Physical therapy, a follow up surgery, and a new medication schedule, all finished. I feel like I handled all the hard stuff, and all the logistical nightmares just in time to send him off to his grandparents to have fun everyday. I realize those things were all necessities, but its an emotional challenge to do all the hard stuff, and organizing, and then go back to work knowing that he is finally ready for things like, the zoo, play dates and library story times. Unfortunately all of those kid friendly activities are scheduled during the day, for stay at home moms, nanny’s, and grandparents to enjoy. As a working mom, I will now see my child eight hours less a day, constantly be judged, and miss out on all of the “Mommy and me” classes. Not going to lie, it breaks my heart.

In reality I know I have to go back to work. Its a necessity. My job is what provides the baby’s medical insurance, which he desperately needs, as we live in a state where we do not qualify for any assistance related to his condition. My benefits are the most important thing to keep stable for him to continue being treated by his stellar team of specialists, and get the therapies he needs. I so wish that I could stay home with him, and be his weekday primary care giver, and ALSO keep my amazing insurance, but that just is not possible. I will state for the record, I like my job. I like my co workers, and I think I will enjoy interacting with adults and getting recognized for my abilities and successes as a human being, and not just a mother. There are definitely pros to going back to work, but right now is all seems so terrible and overwhelming. With eight less hours available in my day, it also means I have less time for housework, less time to call doctors, and insurance companies, and advocating for my child, which I don’t have enough time for NOW. Even as a temporary stay at home parent I still have dishes pile up, and a mountain of laundry, a lawn over grown with weeds, and get absolutely no sleep. How am I supposed to juggle all of that, in the precious few hours a day I get to see my baby boy? There really aren’t enough hours in the day. What do working moms do? Stay up until 1am, knowing that you wake up at 6am with the baby? Just let you house descend into complete disarray and chaos? Its not like I can afford a housekeeper given how many doctors we currently pay for etc. This week I am full of anxiety, and worry, and a lot of impostor syndrome. So many people keep expressing how proud they are of me and my journey, and how they think I am so brave and strong.

I don’t feel brave or strong. I feel like a bad mom. I feel like a mom who is going to go and resume her old life, and leave her baby five days a week. Despite knowing that I need this income for my baby and husband. I feel like I am going to miss a lot of his “firsts.” I will be at work when he crawls for the first time, and his first word, which probably won’t be “Mama,” since she will become the stranger who wakes him up and then puts him to bed. I want to be there for every small milestone, as the last four months have taught me how quickly babys change from day to day.

I feel grief.

I miss him already.

Spending these last few days trying to spend as much time with him as possible and deep cleaning the house. I just want to hold him, and smell him, and soak up as much togetherness as possible, before he completely forgets who I am. I would love to hear from other working moms, who can tell me that everything will be okay.

Reflection

All nature is art, but unknown to thee

alexander pope

Today, we went back to Lake Park with little Corbin.

Its a large park in Hillsborough County, FL, that I frequented as a child. A few miles from my childhood home, it has lots of trails, and there are many places that one can spend time alone in nature to reflect, think, or cry. The day after we learned of his diagnosis we went here in order to be somewhere quiet and remote. We walked the nature trails so we could be alone, and cry, and grieve. We were so afraid. Scared for our little baby, and his future. I stood by the lake and wept, feeling so very lost.

This was also where on that very same day I got a phone call from the coordinator at CHOP, and scheduled for my fetal surgery diagnostics to see if we would qualify for his procedure. I was hoping with all my heart we would qualify, and give my angel baby his best shot.

Today returning to this same place I am full of joy. I cried lifting him into his stroller. So grateful he is here with us, and so proud of all he had already accomplished. The amazing odds he has already overcome, his beautiful smile, and sweet nature.

I love my little family. And we will love and support him throughout anything that comes his way.

Today instead of sad tears, we wandered the nature trails with daddy, listened to birds, were on watch for alligators, avoided puddles, and sang silly songs.

You are our everything. Love you kid

Progress

The journey of a thousand miles begins with one step

Lao Tzu

Today was quite a day! Jesse, Corbin and I drove to the local office for Early Intervention and met with his team, and did his full evaluation. The program is designed for ages infant through 3 years of age who are developmentally delayed or at risk of the same. Corbin qualifies automatically due to his pre-existing condition and we were referred to the program by his initial hospital in Philadelphia.

As a parent, I was feeling anxious and hoping more than anything they would tell me that the baby was developing right on track, the past few weeks have been so difficult with constant visits, I just wanted some good news, especially with all of his urological testing coming up, I have been bracing myself and waiting for the other foot to drop.

We went into the office, answered a series of questions, did some exercises on the floor, looked at some flashlights, they rang a series of bells to see if the baby reacted, it was all very exciting. As a person with a background in speech pathology, that was the only category where I knew what they were looking for. I was quite confident that he was on track for language, but had no idea the type of benchmarks and standards they were expecting physically and cognitively from a baby who is barely three months of age, and in his adjusted age only a month and a half. Well…. GOOD NEWS!

According to the interventionists he is doing great! Mommy was so happy to hear! He met all his milestones minus one, and that was because baby decided to fall asleep so they couldn’t perform the test. We will try that one again next time. The head coordinator even mentioned that if he didn’t automatically qualify for the program, if he was a typical mobile child that is, he would not have qualified because his test scores were too high, and he would have not been considered “At risk.”

We will have a physical and occupational therapist coming to the house once a week, and then will look into private clinics to assist with mobility, strength and walking. I am OVER the moon that cognitively, and behaviorally they think he is doing so well. It was a bright spot in my week, and even if Monday’s testing goes terribly I have something to cling to with optimism.

A good day. 🙂