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

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My Golden boy

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.

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picture of my favorite guy

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

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!

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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.