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.

Happy Halloween!

Just a quick few photos of little Corbins first Halloween! We went as the family from Bobs Burgers. He was a tiny little Gene/Cheeseburger. Mommy went as the fun loving Linda.

We visited our Grandparents and the adults had lots of Candy. It’s precious moments like these where you forget all the scary parts, and just enjoy being a normal family and the innocence of childhood. πŸŽƒβ€οΈπŸŽƒ

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. πŸ™‚

Auntie M

Below is a lovely picture of my Aunt MaryEllen and baby Corbin. MaryEllen was truly one of my absolutely favorite people on the entire planet. She was my eldest uncle’s wife, and I had known her my entire life. She was an amazing chef, an exceptional mother, wife, grandmother and friend. As a child my siblings and I would very often vacation with her and my Uncle Al. I was fortunate to have her, and my cousin Christina visit with my family in Philadelphia when we were still located up there with the baby in the hospital. We laughed, and cried, and had an amazing lunch at a cute french restaurant. She made my husband and I cookies, and brought them all the way from North Carolina. They were delicious. I smiled every time I ate one for the next week.

ME and baby Corbin. Best buds ❀

She loved me, and she loved my baby. I love her, and her children, and her spirit. She unexpectedly passed away last week, and my entire family has been thrown for a loop. It was sudden, and shocking, and I still forget it happened, because it just seemed and SEEMS so surreal. I brought the baby to the service. I had to. He loved her too. They met only once, but she was so vehemently supportive of him and his spirit and life. I cannot express how much I will miss her, and what a huge loss this has been. The world is missing an amazing soul. She had taught me so many lessons over the years.

During our visit I cried and vented to her about our familial situation and my fears for my son. I told her how scared and confused I was. She took me by the hand and she calmly said, “Laura, this kid is incredible. We are a family, and we will figure it out.”

That stuck in my mind, because she said it with complete faith, in a tone that was factual in nature, with one hundred percent certainty

So now I will say it, to myself when I get sad. and to my cousins, and aunts and uncles as well, whenever we panic and miss her.

“We are a family, and we will figure it out.”

I miss you so much ME. You were one of my heroes, if I become half the mother you were, I know I will have done a bang up job. ❀