The best way to predict the future is to create it
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!
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.
The best cure for insomnia is to get a lot of sleep
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.
Cheers to a new year and another chance to get it right
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.
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.
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 key is not to prioritize what’s on your schedule, but to schedule your priorities
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.
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.
The journey of a thousand miles begins with one step
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.
I’d like to be the ideal mother, but I am too busy raising my kids
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.