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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

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Holidays, darkness, and a partridge in a pear tree

How many lessons of faith and beauty we should lose, if there were no winter in our year!

unknown

This blog will be a little bit of a one off, as its not specifically tied to motherhood, health, or any of my normal topics, but is more of a personal reflection on the holiday season. As we get deeper into December, trudging through the holiday season, making plans to see loved ones, and approaching the end of the calendar year, sometimes darkness can sneak up on us both literally and metaphorically. Holidays bring people lots of love and joy, but in times of loss and change can also bring great despair.

When I was a child, growing up in Tampa, FL, my maternal relatives would all celebrate Christmas with my Grandma Anna, and my Dziadziu (pronounced “Jaw-joo”, and hereby in this article whom I will refer to as “Jadju” for the ease of the reader) In the mid 90’s my Jadju died of a sudden heart attack, and his death spun my entire family for a loop. He died in early December, right before his birthday, and right before Christmas. I was a small child, but I remember my Grandfather fondly as he spent several days a week with me and my siblings during his retirement. We were very close, and my mother was used to seeing him three to four times a week, as well as taking him to certain doctor appointments. The gap he left in all of our lives was huge. Father of six living children, and grandfather to dozens more, this was a huge loss, and happening so close to the holidays robbed everyone of holiday cheer, even the children. Nobody wanted to cook, we ended up going to a chain restaurant for Christmas dinner, got terrible service, and periodically individuals would excuse themselves to walk off and cry.

This was my first experience with death, and being too young to really understand what was going on, I more vividly remember the actions and emotions of the surrounding adults. My grandmother, now a widow, who did not have the energy to cook, clean or decorate, her children, grieving a father and Patriarch, going through the motions when around the kids. Everyone was doing their best. For several years after his passing my siblings and I would occasionally find her tearing up, and would remind each other that December made our mommy sad, and that she missed her dad. We missed him too. My mother years later, would relate to me that after Jadju died she earnestly thought that she would never be happy again. In her mind this of course applied to any and all holidays. To an extent she was right, in that, the next few Decembers were very hard. She still gets sad on his birthday. Christmas even two decades later is hard for her. For my Grandmother this was always a hard time of year. All of the local grandchildren would drive the 45 minutes to her home every subsequent year to decorate her tree for her, play Christmas music, and make her house festive and ready for the holiday. This made her happy. We did our best to create new memories for her, to fill it with youthful distractions and beauty. We moved holidays to my aunt’s house, and my grandmother was able to relax and just show up as a guest. Eventually things got a little easier. Not easy, but easier. The tears and anger were less frequent, the feelings transitioned to fond memories and stories. . Big losses never really go away, but the episodes eventually become less frequent.

This year was a hard one for us. Myself, my husband, my friends, and relatives. My husband and I went through a very traumatic year with the complete transition of our life, and the very complicated birth of our son, as well as his long stay in intensive care. We both started our new journey as parents in hard mode, and are just now getting into a smooth schedule, balancing both of our full time jobs, doctor appointments and the attempts at social lives. In an earlier blog I outlined the sudden and unexpected loss of my Aunt Mary Ellen. That loss is still very fresh, and I know my uncle and cousins are feeling it harder than ever this time of year. My heart breaks for them as they face the first Christmas without their mother, something that I cannot even fathom emotionally. I see whispers of the past in their faces, and hear sadness in their words. I have lost friends and acquaintances to death this year, and seen some terribly painful transitions, as well as ups and downs in the health of many of my loved ones. I have gotten shocking news about the actions and character of people I loved and trusted, causing huge paradigm shifts. 2019 did not hold any punches.

Weary.

Weary is how I feel. Not just tired in a physical sense, but an all encompassing fatigue both mentally, and spiritually. The entire earth also seems to be tired, and as we approach the winter solstice, the darkest day of the year, I find myself being comforted through the iconography of the various upcoming winter celebrations.

As a child through my teenage years I was raised in a devout Catholic household. And while no longer practicing, I am very educated and respectful of Christian holiday traditions, especially considering how many of them overlap with ancient solstice traditions from all corners of the globe. I consider myself part Agnostic, and part lazy pagan. I very much believe in God, just not the way most people think I should. I pray, and meditate, and speak to God in my own way, and for the most part am not one to go to organized church or temple services. but instead practice privately. I prefer to talk to God in nature, or in my quiet bedroom, or in my car. I believe in doing no harm to others, and letting everyone practice religion and spirituality in a way that makes them happy, and gives them joy and fulfillment, as if we took all the labels off of everything, everyone is basically worshiping the same thing on a base level.

Christians all over the world are preparing to celebrate the birth of the Christ child, which marked the beginning of a brand new era in their faith. A time where the son of God now walked among them, ushering in modern judeo-christian beliefs. and shined his heavenly light and grace upon mankind. There is also the upcoming celebration of Yule to look forward to, the OG Christmas if you will. The original source of yule logs, wreaths, mistletoe, tree decorating, and the celebration of the shortest day, and longest night of the year. One of the oldest, and pre-Christian celebrations known to man, this night marks the beginning of winter, and holds reverence to the sun (As opposed to the “son” in Christianity). Ancient celts and druids believed that the sun remained stagnant in the sky for twelve days mid-winter to banish darkness, evil spirits and to bring luck to the new year. If there was a venn diagram between the two religious celebrations, the middle bubble would be very full, and the central themes remain not only similar but relevant to modern times. Not to be forgotten this theme of light, overcoming darkness is also mirrored during the Hebrew celebration of Hanukkah, in which traditional menorahs are lit for eight nights to commemorate the re-dedication of the 2nd temple of Jerusalem during the Maccabean revolution, and the miracle described in the 1st and 2nd books of the Maccabees. These are just three examples of the many winter holidays and festivals from around the world based on light driving out, and protecting humanity from darkness. Whether or not these stories and texts are believed to be factual, metaphorical, or simply cultural myths and traditions to express the biggest change of the year, they have been resonating with me on a deep level.

From a personal and spiritual viewpoint I take this time of year very seriously. We celebrate Christmas in my home (meaning my husband, child and myself) in a somewhat secular fashion. We abide by traditional American Christmas traditions, and encourage family, togetherness, charity, and of course now that we have Children we will begin the tradition of Santa and his reindeer. I have not gone to Christmas mass in over a decade, but I do find beauty in traditional hymns, and the ritual aspect of Midnight mass. It is a beautiful and ceremonial experience despite my estrangement from it at this time. The Christian festivities surrounding the celebration of the birth of Christ, and central themes of the nativity and the star of Bethlehem are beautiful, and I respect them very much despite not practicing. I do celebrate Winter Solstice with friends and select family every year, and enjoy it very much. One of the most meaningful things I enjoy doing is a cleanse and reflection on things that I want to leave behind, and let go of. Things that I want to move on from, and goals, hopes and prayers for things to come in the coming year. The year is cyclical and its a nice time to reflect on the past and decide how it will or will not fit into my future.

This is a time of year to use ones faith to drive out darkness, and believe that the year will bring light, good fortune, and peace. No matter what that faith is. They all resonate the same central ideas. Humanity is so special that in completely different places, and among completely different religions and cultures, some things are universal. As humans we are scared.

Winter holidays came about because when it boils down to it, ancient people were scared of the dark. We want our deities and our families to be close and to protect us. We focus on togetherness, and family, and filling up our metaphorical cups and stores with love and support to make it through the long winters.

My past winter was the beginning of the hardest journey of my life. I hope this one is easier. My heart goes out to anyone who is also facing a hard Christmas, and winter season. Whether it be from a recent familial death, estrangement from loved ones, work troubles, money troubles, or any other variety of problem, know that I understand, and I hear you.

You are valid.

This can be a very hard time of year. But it can also be a time of healing and rebirth, if you can let the light in.

I wish you love, and faith, and happiness surrounded by people who love you back.

For the record, it took a long time, but my mom does enjoy Christmas again. It took a while, and you may take a while, and that is okay.

I will be holding my son tight, and hoping for lots of light in this new year. I am very full of hope.

If you are reading this, I wish that for you as well.

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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
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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.

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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.

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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. 🎃❤️🎃

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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

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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. 🙂

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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. ❤

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“Down” Time

I’d like to be the ideal mother, but I am too busy raising my kids

anonymous

Oh, hi everyone! It is now October 2019. Baby Corbin is now 13 pounds, and 3 months old. I cannot even believe that we have come this far, and that we are in our own home and thriving as a family. Baby has finally figured out toys, loves books, still hates baths, and has moved on from leg casts to his boot and bar for his Ponseti corrections. We are about two weeks away from being off of apnea monitoring which is going to change mommy’s LIFE. He is gaining weight, and growing big and strong. Baby is.. ALMOST sleeping through the entire night, we are so close, and mom and dad are SO EXCITED. Big hurdles are being overcome all over the place.

Overall we are doing great. I have received so many nice messages from people reaching out about how I am doing. I am.. okay. Not amazing, but I am doing okay. I have been juggling so many of Corbin’s appointments that I think I neglected my own mental health for slightly too long. For the record, I do have a therapist, she is amazing, we work on talk therapy and CBT, and she really helps me keep a level head. My schedule was crazy and we just kept missing each other. I spoke to her FINALLY last week, and what a difference in my mood after even just one catch up session. I really need to make sure to keep that standing appointment, the difference in my mood and functionality is huge. We discussed my anxiety, my body image, and my imposter syndrome related to motherhood.

That is my biggest hurdle currently. I don’t feel like a good mom. I walk the walk, I do everything I need to do and I still have this nagging feeling like I am failing my child. (Which is.. just… inaccurate, Why do I feel this way?) I am not sure if its lingering guilt over feeling like the baby’s condition is my fault, or just the huge load I feel related to staying on top of all medical schedules, but most of the time I feel like I am drowning. Over the last several weeks we have had a pediatrician visit, specialist appointment, or imaging appointment every single day. I can still not drive on my own, and am reliant on my family for rides. It is tiring, and I feel like a burden. I am frustrated, I am fighting with insurance companies, all the while trying to exercise, eat at least a few vegetables, and escape my constant post partum body image woes. Overall my little one is doing great, but whenever I get less than stellar test results, or medical opinions, I get very upset and take it very personally. To a level that is really unreasonable. I think the over reaction stems from the fact that this is my entire life right now. For example, after over a month wearing the Pavlik harness to try and correct the baby’s bilateral hip dysplasia, only one side was corrected, the right hip had made absolutely no progress at all. I sobbed. Why did I sob? It isnt my fault. The baby was born breach, this treatment isnt always effective. It wasn’t like I was sitting their pulling the kids joints out of socket. This was completely out of my control. However, when your entire schedule is based on treatments, and you put in the work, you so desperately want results. The results don’t always come. You get sad. You get mad. You grieve. You move on. We are trying a different type of brace, we will try again.

The next big “test” we have coming up for the baby is his uro-dynamics testing. They will see how his bladder is functioning and test for any kidney reflux or complications. If he is not fully emptying we will discuss the possibilities of medicine or catheterization. I am so upset over this. I am almost PRE upset, which both myself and my therapist agree is a waste of my time and energy. Why am I letting my anxiety live through things twice? I am working myself up over something that has not yet happened, and assuming the worst. In reality I will do whatever medical intervention is needed to keep his kidneys as healthy as possible. Over 2/3 of Spina Bifida children require some sort of bladder intervention, I am prepared to do what I have to do to keep him healthy and safe. I just am enjoying my time with him as a relatively normal baby, our time together is perfect, and I think facing another medical diagnosis is not something I am quite emotionally prepared for JUST yet. I dealt with clinics and meds for month and months, and I finally feel normal. I don’t want to deal with it. I have to, so I will…. but I don’t WANT to.

I WANT to take my kiddo to the zoo, and the library, and Disney. I want to spend time together in the pool, and the park, taking walks and looking at animals. I am still at the mercy of others for transportation, and with only about three weeks left of maternity leave, I am mourning the fact that my time off was exceptionally clinical, and I am sad that most of our time together has been spent in hospitals. This is selfish, I am aware. It is valid. I am aware of that as well. I am consistently burdened with self awareness. It is both comforting and infuriating.

My baby is happy. He is relatively healthy given the incredible odds against him. He has a good mom. He doesn’t have a FUN mom right now. He has a mom who makes him take vitamins, and get a lot of sleep, and wear his orthotics even though they bother him. He has a mom who makes sure he has enough antibiotics AND probiotics. He has a mom who obsesses over his gut health, and annoys insurance companies, and tries to advocate and educate the world about the strong and beautiful children in this country who have disabilities.

One day we will get to the point where I can be a “fun” mom. We will get there eventually. I know we will. I cannot wait. But for now, I will have to settle for effective, and hard working, and scared. But also loving. So incredibly full of love.

Love you Kid. ❤