Remember that song you would sing on the school bus as a taunt to friends who you thought might like each other… “First comes love, then comes marriage, then comes the baby in the baby carriage…”
I have been grateful in this life to have found just that. I met my husband when I was 24 years old, a recent college graduate. I was young and excited (and a bit naïve) about life. My husband, at the time, was a 31 year old man who lived 8 hours away and on the rollercoaster that is starting a new business.
We couldn’t have been further than ideal for each other on paper. But within minutes of meeting in a bar we were both compelled to keep chatting – and that was that. Of course he was the loud one with the Long Island accent, and I was the designated driver who had work the next morning. But somehow we clicked, and the very next day he had sent flowers to my store. Two months later I relocated to Astoria, Queens. More on my family’s shock next time…
But, relationships are not perfect, and making one work with extremely different lives isn’t easy. We have never once pretended that being “the one” for each other meant that life and loving each other would be simple. But, it has been one the greatest gifts in my life.
Being so different from each other means that we challenge each other every day to see the world differently; to examine a situation with a new outlook.
Probably the most stark difference between us is that my husband is the ultimate optimist. He sees the good in everyone, the positive in every scenario, and the light in even the darkest room. I like to consider myself a “realist” which he says is pessimism. I have to laugh here because it’s such a regular debate in our home that it’s a joke! But in every scenario we balance and aggravate each other.
Today marks our 3rdwedding anniversary and I almost can’t believe it hasn’t been longer! We have been together 6.5 years, and in that time we have moved 4 times, owned 2 homes, undergone some major home renovation projects had one beautiful son!
Children was always something we both wanted. When we learned we were expecting our first child it was a night of pure giddy excitement- like a toddler with a cookie. That night was a little more than 2 years ago and everything we have gone through in that time has challenged us- our relationship, our communication skills, and how we can support one another through our differences.
Raising tiny humans is so incredibly hard. Putting your baby into surgery twice in a year is brutal. Staying in love amidst that kind of chaos takes patience, forgiveness, acceptance, and hard work.
Today I look at the man I married and I love him more than I did 6.5 years ago in that bar, and I love him more than I did 3 years ago at the altar. I love him for the father he is to our boy, for the provider he is for our family, and for the man who loves me through my hardest and my best days. I am grateful to have him as my partner and my cheerleader. I couldn’t imagine walking through this life with anyone else.
Happy Anniversary my love, here is to three amazing years, and a lifetime left to drive each other crazy.
I have grown to feel slightly resentful over this statement, and I feel like now is as of a good a time as any to address it.
These 6 words are typically a part of a conversation that would also include other parades such as “this time, it goes so quickly” or “these moments are all so special”. Then there is the newest tag line running all over social media that tells us “we only have 18 summers with our kids”.
I understand that these conversations are not intended to upset or judge anyone. I also understand that they often come with a world of experience. That experience proved to these well-meaning women (and men) that time does move fast, and that these moments with our little babies are special.
But I believe, to the core of my being that these statements are in fact wildly impossibly to achieve and only serve to perpetuate mom guilt.
My son is 16 months old and he is precious- I love him more than I could ever imagine loving a human! I do enjoy moments playing with him, watching him explore, and learn to do new things. I am also all too aware that time has been moving so fast and these years are such a short blip in our lives.
But! Please do not tell me I have to enjoy the temper tantrum in the grocery store, or that the worst explosive diaper that made a mess all over his crib and now all over his bedroom is a special moment. Don’t tell me I am supposed to enjoy trying to make a meal while he throws himself on the floor because I won’t let him play with the knives I am using.
Telling moms (and dads) that we are supposed to enjoy every moment only serves to make us feel more guilt than we already do. These years are short and precious and wonderful, but they are not perfect, and either are we.
Mom guilt is such a very real and vivid experience. It can feel all-consuming and affects every decision we make, and every part of our daily lives. Between complete and utter exhaustion and the overwhelming amount of work it takes to raise tiny, beautiful humans, we second guess everything. We feel bad when we go out, we feel bad when we go to work, we feel bad when we put the TV on, we feel bad when we give a cookie, and when we don’t give a cookie!
So, when I hear that I have to enjoy every moment it only serves to make me feel bad that I don’t.
But I am standing here today to say, I don’t think we’re supposed to. I think we’re supposed to love our children the best way we can. We’re supposed to find ways to make it through the days with as few tears, and as many smiles as we can. I think we’re supposed to teach our children how to be good humans and that is very hard work.
So, I thank you for your wisdom and your love, but please don’t tell me to “enjoy every moment”, because, I am trying, but it’s not always possible, and THAT’S OKAY!
Before I had kids I had this very clear picture of what kind of parent I would be. My kids would always be clean and well-dressed. We wouldn’t watch screens and I wouldn’t loose my patience on them. We would play on the floor all day, and my house would stay clean and organized. We would have an expert level routine that kept them feeling safe and entertained at all times.
I almost can’t even type these words without laughing now. The reality looks like a sad attempt at some of these things, and a total collapse of others.
Today my husband and I spent time swapping between playing with our wild toddler, and completing the long list of weekend chores. It felt like a productive and fun morning – I actually thought for a minute “we’re killing this adult game today!” That should have been the first hint that the day would turn. While folding laundry I kept one eye on our son who had found himself pleasantly entertained by dropping a plastic ball on the floor and watching it roll away and then gleefully chasing after it- repeat over and over. So while there were moments out of my sight, I could hear the repeated sound of the ball hit the floor and the patter of his feet running behind.
It was only a moment later I realized that I didn’t hear it anymore. And as any parent can likely relate the sound of quiet is the single most dangerous and terrifying sound. Nothing good comes from quiet.
I turn the corner where I find my 16 month old covered in red paint. The paint danced around the floor in front of him in a pattern of little toddler hand waves, his legs splattered with the evidence that the feeling of the paint against his skin felt good. He had the jar of paint in one hand and the white (now painted red) cap in the other. He was trying to put the cap back on – a game he loves with Tupperware.
This picture I was staring at is what the before kids version of myself would have thought “that would never happen to me as a parent.” Of course, the before kids version of myself was delusional under the best of circumstances because, really? With kids, anything can happen in the blink of an eye. Once you are a parent, you somehow understand that all too well.
After a quick bath and some effort to clean the floor the only remaining evidence of the incident was the paint filled pajama shirt that needed to be washed. Of course, I will say, I am beyond grateful the paint explosion was with washable paint, and that it happened on my hard floors and not a carpet!
The bigger lesson for me as a mom was that my son loved the paint! And I thought, we should play with paint more. He loved the texture and the way it felt. He even loved watching the color rinse off in the sink, the way the red paint bled right into the water streaming across his leg. When I found him there on the floor he laughed, he was gratefully safe, and well entertained! I couldn’t help but laugh with him and the laughter continued right through his sink bath.
I’m not the perfect mom I pictured before kids, sometimes I do lose my patience, we do watch cartoons more than I thought we would. My house isn’t always clean, and our routine could use some help. But I love this boy of mine more than I ever knew I could love someone, and keeping him safe and well entertained is still my favorite part of a day. I think that means we’re doing alright!
Over the course of the last 16 months, I and our family have opened up and shared our journey with cleft, from diagnosis at 20 weeks pregnant, to surgery preparations, recovery, feeding therapy, and of course the daily pictures of our sweet, happy, and wild little boy!
We made the decision to share so openly because I had an overwhelming drive to educate our family and friends along the way with us. We had a lot of unique milestones this year, some curves in the “usual” routine of things, and I knew if it felt confusing and overwhelming to me, that it might be confusing and scary for others we loved and cared about too!
Today, October 2nd, 2019 is another unique milestone for us, one familiar among the cleft community – Patrick is celebrating his 1stSmileversary. The anniversary of his surgery that gave him his forever smile.
This anniversary is such an amazing and beautiful way for families to celebrate the birth of a brand new smile for their babies, a way to take a moment and remember all that we went through, and all that we survived!
The day brings with it so many emotions. The process of putting your baby into surgery is so unbelievably difficult. I couldn’t possibly explain the fear and anxiety that builds up to that day; the way the hours feel like days; or the way worst case scenarios consume your mind.
The emotion most difficult to explain is that I did not want my baby to look different. People would tell me “Don’t worry, they can fix it.” And I knew, from the endless doctor appointments and late night online research that this was of course true. But then my sweet perfect baby was born and I didn’t feel like it “fix” was the right word. Logically, his surgery was necessary, but it felt less like he was being fixed, and more like he was being changed. It felt like something I loved was being taken from me. I feared what his new smile would be like, that I could love it as much as I did this one he was born with!
Taking Patrick to the hospital that day I was putting my baby into a painful and invasive surgery, with a long and difficult recovery. I was also changing his face forever. The anesthesiologist took my baby back to the OR around 7am and that would be the last time I saw that beautiful wide smile of his. It broke my heart in a way I couldn’t believe or explain.
The real, horribly difficult truth to tell you today is that the loss of that smile was as challenging as any other part of the recovery process. For hours after we were re-united I struggled to recognize my baby- the same baby I had held 24 hours a day these past 4 months…
His body was lethargic and limp in my arms, his face swollen and bloody. He smelled of hospital and antiseptic. Too tired to even open his eyes I struggled with the emotion of seeing my baby so raw and vulnerable. I also struggled to recognize one feature I knew to be his. I ached for him to open his eyes so I could know he was still in there.
I held Patrick for hours and hours- he was restless and yet exhausted, whiney, and lethargic. It was almost 6 hours post op before I got glimpse of those bright blue eyes. The moment he opened his eyes and looked up at me, sad and tired I burst into tears. Those eyes! Those I recognized, those I knew all too well. They looked much sadder and much more vulnerable than ever before, but they were clear crystal blue just like his dad’s and they looked at me desperate to make it all better.
Patrick’s recovery was a long, exhausting, and emotional rollercoaster. He struggled with feeding, hated his arms to be restrained, and most painfully – he couldn’t sleep for more than an hour at a time for weeks. Within 24 hours of surgery he gave us his first tight smile and my heart exploded. I was in love all over again, and those small moments would carry me through each day. It would give me the strength to keep fighting, to keep believing in the light at the end of the tunnel.
The day we were released from our restrictions felt odd and exhilarating for us all! Patrick couldn’t believe I was allowing him to place his fingers in his mouth, and either could I!
Each and every day since his surgery I have grown more in love with his new beautiful smile. It is truly a work of art- by the most talented and generous surgeon we could not be more grateful for!
I would be lying if I told you that I didn’t still miss his wide smile. I look back at pictures from before surgery and my heart warms and explodes with love. I will always miss that sweet and unique smile my baby was born with.
Today I will be celebrating the joy of experiencing two perfect smiles. I hope this day can serve as an opportunity to talk with Patrick about his first smile, about the ways that he is unique. I hope to show him how his smiles and his scar are only some of the millions of things that make him special.
I hope that one day Patrick will go out into the world proud to explain to his peers about his scar, and about his first smile. I hope that he will look back at his baby pictures with as much love and pride as I do.
So today will remain an important day for our family, one where we remember to smile, to celebrate all that we can survive, and most importantly, to embrace all that makes us uniquely beautiful.
Please watch this beautiful slideshow- a walk down memory lane, all those phases of his growing and changing smiles. A note to consider while watching – the first song on this slideshow was written by a local Long Island band- The Como Brothers. We met Andrew by total chance on the side of the street in Buffalo, NY the day Shaun and I got married. As a shower gift, Shaun’s mom asked if they could write a song to celebrate Patrick’s birth. They could not have known what the lyrics would mean, but yes Patrick, I will always love just like the first time I saw you.
If you give a Mouse a Cookie… A Mom during nap time edition:
My toddler is sweetly sleeping in his crib, I start walking downstairs and I think “gosh I’m hungry- time for some lunch.” I walk into the kitchen to make myself something to eat when I realize I never cleaned the dishes from breakfast…
That’s okay, I’ll do that quick before I eat, when I realize the strainer is full of last night’s dinner dishes so first I dry and put those away.
When I am done drying the dishes I realize the dish towel really needs to go in the wash so I walk into the laundry room where I remember I had started a load this morning, and still have to flip it to the dryer.
In the dryer I find the towels I forgot to fold last night, so I take those out to fold, and then flip the laundry over. While I am folding the towels I remember that I forgot to put my son’s nap blanket in the wash for school tomorrow so when I am done folding the towels I put them away and start gathering laundry for a full load.
Along the way, I realize I haven’t made the beds yet today and that the bathroom needs some straightening up. That will only take a moment I think.
After a quick straightening I am back to gathering laundry when I trip on a toy at the bottom of the stairs. I remember that I hadn’t cleaned up the toys in the family room yet. After putting the laundry in the wash I start toward the family room, gathering toys all the way there.
I get to putting all the toys away when I find a pile of lost cheerios, a few of which are smashed. I pull out the vacuum to clean up the area when I decide to finish off the whole room.
I put the vacuum away and next to the pantry I remember I still haven’t had lunch yet.
I go in to gather some things for my lunch when I remember I never finished washing the breakfast dishes. I open the dishwasher to load when I remember we ran it last night before bed. I unload the dishwasher, and then re-load it up.
Now it’s time for lunch I think… and then I hear it… Patrick is up!
I did a crazy thing this week. It is either going to be pure genius, or completely crazy. It’s been a bucket list item of mine for a few years now and I decided RIGHT NOW is the best time, when I am walking into our second surgery of the year, RIGHT now is the best time to do something I’ve always wanted to be able to do.
I am an officially registered participant for the half marathon in Bridgehampton scheduled for May 11th!!
To be completely clear about this crazy thing I have decided to do- I am not a good runner. I don’t have a history of long distance running, or fast running. In fact the longest I have ever run in a race before was 5 miles.
I have also not been very actively running for the last year, but just a few weeks ago I laced my sneakers up after a chat with a friend. We signed up for a 5k, and it was just enough to get me out on the street. We quickly caught runner’s high and signed up for another one.
The thing about running for ME is that I think it’s horrible! And boring! And exhausting! BUT it is also mind clearing and cathartic. I exhaust myself physically and numb myself mentally, I run away all of that anxious energy I feel buzzing in my body and come home proud of how I pushed through.
As soon as my feet hit the street that day a few weeks ago I was reminded of the therapeutic nature of running, because running for me is as much of a mental game as it is physical. Running is an exercise in mental toughness as much as physical ability. Mentally going out when I don’t want to, to keep running even when I would rather stop.
These next few weeks we will also be physically, mentally, and emotionally absorbed with the stress and worry and care of post-op. I feel the tears well in my eyes as I type this, but I don’t want to go through it all again. I don’t want to see my son in pain, I hate the sleepless nights, and worry over every possible scenario while we care for this small boy. Recovery from a major structural surgery is draining – physically and mentally.
So I am running a half marathon. Because running is a mental game, about not giving into the voices in your head that wants you to stop, wants to walk, or take a break. I cannot stop caring for my son when the days get hard, the way I cannot make our circumstances different half way through- we still have a long road ahead and I need to be as physically and mentally strong as possible. That doesn’t just come, you have to work for that kind of strength.
I am not running this race to make a certain time, I can be the last one across the finish line as far as I am concerned. I am not running this race to lose weight or get “summer body ready”. I am not running this race so people can think I’m super mom. I am not running this race for any reason other than pushing myself during this challenging time to care for myself too. I am going to prove to myself that this seemingly huge goal for a non-runner IS possible. I am running this race as a motivator to keep going – to set aside time 4 days a week to get out of my house, get away from the worry and stress that consumes me during recovery and to literally run it out.
Tuesday morning I completed the official registration. I had a woman coming to hang with Patrick for a few hours and I was getting ready to get out and run. I was buzzing with a touch of excitement, and a lot of hesitation. I kept thinking I must be crazy, THIS is crazy. It was all I could think of during my run and as I hit mile 1, I could feel myself settling into a steady pace and I began to cry. Full blown tears, running along the side of the road. It’s getting very real, the days passing, and surgery coming sooner, and I feel the weight of it. The tears came fast and hard and left the same way.
Because this is the therapy of choice in the next month, I have a feeling it won’t be my last cry while running… 13.1 miles here I come.
I haven’t updated the blog in a few weeks. I keep sitting down to write and falling short of words.
I really want to be positive. I want to come on here and tell this small audience of people who read my blog that everything has been so amazing and wonderful, and shed some incredible wisdom about pushing through the early hard stuff and realizing you can do anything.
The trouble is, I’m not so good at always staying super positive through the hard stuff. My husband, my rock? He is an expert optimist. He always sees the best in difficult situations. The beauty of that is he always reminds me of the good, the happy, the light in our tunnel. The down side? He struggles to understand why I don’t always feel as optimistic as him. He tries, but he is just so darn positive, it’s difficult for him some days to understand.
But I know I’m not alone, I know that the way I’m feeling, and that the emotional roller coaster I am on, is just like ones before. I need to work through how I am feeling and allow those emotions some time to come and to pass. This is the part of our journey that is mine alone. My husband doesn’t experience it this way, and my sweet, incredible, smart, strong-willed baby? He doesn’t know anything different.
I struggle with each milestone that is moved up too fast, I struggle with the idea that I PICTURED it being a different way, that I WANTED it a different way.
I am appreciative of every moment along this path, and I always wrap my head and my heart around our own unique milestones, and our own unique path. But each step along the way requires digesting the information and emotions as they come.
We are 5 weeks out from our next surgery and this week we made a major step in preparation for that surgery. Drinking exclusively from an open flow cup was a goal we set back in the summer. We talked about it like we talk about all big ideas. It was general, vague, and far off in the future.
We started slow and it was a fun little game, we played with water and let him control when he felt ready to be pushed a bit, and when he needed a break. But then we felt our deadline approaching and he became increasingly frustrated with our “little game”. He began throwing a full cup of milk clear across the room, slapping my face as I tried to bring the cup close to him. He wanted his bottle. He did not want to drink from a cup. I didn’t blame him. He would cry and throw milk. I would cry and clean it up.
The days in the last month were long and difficult. They were a constant reminder of our approaching surgery and the struggles we might face in its aftermath. You see, Patrick was born with a cleft lip and palate and that means surgeries and recoveries. That is a big idea. The details of that big idea can be more challenging to face day to day.
My son is so smart, and he knows that he loves his bottle and that the cup isn’t the same. My son is strong, he fights for what he wants. My son is sweet and loveable, but he is also feisty, strong-willed and has a temper. Getting my son safely across the finish line of recovery means pushing him past what he wants to what he needs. It means fighting him FOR him.
This week marked the official end of bottles and Patrick is doing outstanding. He is drinking from his cup like a champ, the absolute best case scenario, the best I could ever dream or hope for. I am so overwhelmingly grateful for this somewhat miraculous turn of events.
But like all things, the other shoe is dropping. My mom emotions are kicking in and it feels like my baby is growing up. I’m gratefully and miraculously putting Patrick to sleep after he drinks his cup of milk and I know I should be positive now, we have gotten exactly what we have worked so hard for. But my arms miss that special time with him. I miss that time in his rocking chair, when the room is dark, and the sound machine is loud. I kiss his head and rock him as he drinks his bottle. The saying goes “the days are long but the years are short.” But our year isn’t even a year. It feels far too short, and that breaks a piece of me I don’t know how to explain.
I haven’t written in a while, because when I sit down to write in the past month I find myself consumed by a number of emotions I am ashamed to admit. The emotions make it hard for me to clearly explain how exactly I am feeling. In this small window of clarity I can tell you that I have crossed from frustrated and exhausted, to angry and bitter. I have gone from sad to mad, to relived and back through them all over again.
This stop in our journey is hard. It’s another step in accepting where we are and what life looks like for us. Accepting the differences in our journey means letting go of the picture in my head of how it should be or could be. Like each step before I am giving myself some grace. I am letting myself feel what comes in an effort to work through it on my terms.
I am so grateful that Patrick is stronger and healthier than ever. That I have the leading expert in positivity walking by my side. That I have family and friends who listen to me, and check in on me, and give me the same opportunity to move through emotions without judgment or question. Raising babies takes a village and I have the best one. Tonight I’m resting myself right there.
I had the incredible privilege of connecting with a super star mom recently and I am overwhelmed with the need to share her story, and the beautiful shop she has created in the midst of this chaotic, and beautiful life.
Kristen is a military wife of 20+ years and a mom of 3. I have a soft spot for military families. My sister had her 2 babies during their time as a military family and experiencing first-hand the strength, faith, and love needed to fill that role will always overwhelm me.
If you also know anyone who has lived through military life, I probably need not say any more. You raise your little ones with the extra chore of perpetually starting over. Kristen and her family have lived in at least 7 different cities. 7 major moves, 7 homes, 7 moving trucks, 7 groups of friends, activities, and area customs. 7 Brand New Beginnings. All while, I remind you, your husband is consistently away for weeks and months at a time.
In 2002, while her husband was deployed, Kristen went in for her 20 week ultrasound where she learned that their son would be born with a cleft lip and palate. She recalled during our conversation, having to make that call to her husband overseas. “Something is wrong with the baby…” Having experienced that same news myself, I can only imagine the fear on both ends of the phone 17 years ago. But Kristen remains grateful for the time where they could prepare before their son was born. “It was devastating, but we were prepared..”
During 7 brand new beginnings for this family, they had the added responsibility of also starting over with a new medical team. Their son received 6 major surgeries and 7 sets of ear tubes in the past 17 years. Imagine for a minute, the trust and care needed to hand your baby, toddler, and teenager over to a surgeon. Then imagine starting fresh so many times.
The reality of this fact really hits me, it takes courage, strength, and understanding. It means you need to know more, and understand more, so that you can have the faith to keep starting over. Again, in talking with Kristen she shares the struggle, and brings back this incredible strength “We have been able to use some pretty great doctors. I wouldn’t change it for anything.”
Like many moms Kristen looked for a creative outlet. Something that she could do and enjoy for herself! She began to embroider things around the house; “I would monogram or personalize anything that wasn’t nailed down!” She has expanded her passion to vinyl work, and in 2012 she began an Etsy shop.
Her family is preparing for a military retirement and Kristen plans to use this last New Beginning as a true New Beginning for herself and her passions.
I am lucky enough to have a few shirts Kristen made for us, an adorable onesie for Patrick and t-shirts for Shaun and I.
For all things embroidery and vinyl check out her adorable Etsy shop: Sew Vinyled.
One year ago today, I was excitedly getting ready for our 20 week anatomy ultrasound.
I was told it was a long ultrasound where they would look at everything closely, measure baby’s bones, and head, and organs, and make sure everything looked good. I heard we were getting to see our baby, and get new pictures! We were doing a gender reveal that weekend, so I was anxious to get a good picture to bring. Those were my thoughts walking in, “I need a good picture I can frame and bring with us Sunday.”
Shaun left work a bit early to meet me at the doctor’s office, we were both jittery with nerves to see our little “Simba”. (Even though we didn’t know the gender yet, I was sure the majority of my pregnancy that the baby was a boy, and took to calling him Simba.)
I didn’t love the way the ultrasound was going. I thought the woman was being rude; she was quiet, kept moving around really fast, and said she was not going to be able to get a great picture of his face for us. I walked out of the ultrasound room a little let down, and frustrated. I wanted a re-do, that wasn’t at all what I had hoped it would be…
Then we were called back to a patient room, and my favorite doctor walked in. She was newly pregnant and we shared some back and forth about gender, and names, and dreaded nicknames. Then she got quiet. She shifted a bit and I felt my stomach knot. I get this feeling in my head when my nerves pick up, a tingling warm feeling that always immediately makes my eyes water and ears buzz. It’s like my own internal alarm bell… something isn’t right. Instinctually I began to hold my belly, protecting my little Simba from what was about to come.
She very calmly and sweetly informed us that everything looked good on his ultrasound, head and organ sizes are normal, they had a difficult time getting some necessary measurements of the heart just due to his positioning, but that right now, they were seeing what they thought might indicate a cleft lip.
I looked to Shaun who was as confused as I have ever seen him. We locked eyes and then back to her… He said “What the hell is that?” I knew what it was, I had seen the fund raising posters and tv commercials. I had, in my ignorance, believed it was a problem that affected third world countries… How would my baby have this?
Everything from this evening, around 7pm and on has changed my life. It has changed my perspective, and my goals, it has changed how I see myself and others. It has made me stronger, and more cautious; it has made me more empathetic, and yet less tolerant. Less tolerant for drama, and BS, less tolerant for negativity.
In a support group I am in, moms talk with perspective to expecting moms and often say “I wish I worried less when I was pregnant, as soon as your baby comes, you’ll love them so much, and everything will be okay.” I completely and whole heartily GET that. I understand why they say it, and I even get why that’s a helpful, reassuring thing to be told. But I want to say something different:
To moms expecting a baby you have just learned won’t be “perfect”, who didn’t walk out of their anatomy scan with an “all clear” and a beautiful picture to frame for their families. To parents whose babies are born with surprise concerns and require medical intervention, and moms whose babies come early and spend time fighting for their life: WORRYING is part of the process. Grief and sadness, and feeling let down by God, or the universe is part of the process.
If I had walked out of that appointment and said “No worries here, I will love my son, so it will all be okay.” I wouldn’t have spent the next 3 months researching, and understanding this birth defect. I wouldn’t have reached out to a therapist to digest my emotions, and work on coping mechanisms. I might not have gone back to church, where taking the chance each week to pray for him and for me, and for strength to preserve gave me the hope, and acceptance, and understanding I was searching for. I wouldn’t have been online googling special bottles and watching youtube videos of feeding and taping. I wouldn’t have found and read medical research about the best pre and post surgical methods so I could ask all the important questions at our doctor appointments.
Worrying and stressing over what our little one’s life will be like, is what we do no matter what our children’s medical, emotional, and physical life is like. Worrying is part of the process. It gives us the push to know and understand and learn so we can advocate for them.
Grieving was one of the most important things I did initially. I spent time allowing myself to feel sad, and let down, and disappointed. I know some people might find that shameful to admit, but I think it’s important to stand up and say this: No one wants their kids to be “different”. No one wants their kids to experience pain, and struggle. When you learn your child might experience some of those things, you grieve. You had a picture in your head of how this little one might grow up, and the things you want for them in their life. That picture starts to change, and you have to walk in that path.
I know so many moms and parents whose children have extended stays in NICU and they have to leave the hospital without their baby. Parents who split time between children at home, and a baby in the hospital, parents who lose one baby, and pull themselves together to continue fighting to save another. None of this is how we pictured it to be, and it’s UNFAIR. It’s hard, and it’s cruel. Take a minute, and read that again. It is UNFAIR, and CRUEL, and HARD. But it’s happening, and now as parents we have to continue.
So here’s what I did.
I wouldn’t let myself compare. Telling yourself that “it could be worse” isn’t going to help you manage the emotions you have inside you, only make you feel guilty for having them. Yes, someone else might have it worse, but I bet you went on Facebook today and felt like 100 people had what you wish you could have. Manage the emotions rather than push them away.
I found support. I joined a Facebook group of parents whose children are cleft affected and we can share, support, and love on each other. We live in different areas, and experience some different struggles, but we understand the fight and the struggles and we are there for each other.
I lean on people around me, who I trust. I have a core group of people I know I can vent to, and who will love, and understand me even when I don’t want to sound upbeat and positive. My husband, my mom and my siblings should get medals for dealing with me this year… it’s been a struggle but I am so grateful every day for their love and their support, and for dealing with me!
I let myself cry, and I let myself feel whatever it is. Some days I want to feel bad for myself, and I want to feel bad for Patrick, and I LET MYSELF! But I don’t let myself stay there. I read motivational books, and follow motivational speakers, and I keep a record of things I have to be grateful for. I am allowed to feel these things I am going to keep feeling them, but not forever.
I rely on my faith. It’s a fall back for me, something I grew up with and something that feels like a warm blanket on a cold day. I actually pray. I know we all say “I’m praying for you.” But I really am. I pray for myself, and our family, I pray for other moms and their families regularly, and I find comfort in it.
And finally, I do this… I write, it is something I have always loved, and that I now feel compelled, almost obligated to do. To write my feelings and my experiences, and to share this journey.
If you’re following this journey with me, thank you for your support. If you are a mom or a parent fighting through your own journey, you’re not alone. I am with you.
Taking a moment today and the last few days to reflect on this year has me feeling all kinds of crazy emotions about 2018. I guess I would describe 2018 as a new best friend, the one who, after getting to know each other better you admit… “I really thought you were a bitch when we first met.”
But I think to be really raw with you here, I should back it up a bit. There are a few things people who know me well know…
I have never wanted anything so much my whole life, as I wanted to be a mom.
I have suffered from anxiety most of my life. I went on medication around the age of 16 when my anxiety became dangerous to my health. I was having panic attacks, that lead to fainting episodes. I just couldn’t manage the anxiety, and some days it really consumed me. The medication was a low dose, and took just enough of the edge off that I felt like me, but a version of me who could cope and wouldn’t faint so much.
At the start of 2017, Shaun and I decided we wanted to start trying to get pregnant, I re-visited the side effects of the medication I was taking for my anxiety. It was considered technically “safe for pregnancy” but not advised. We spoke about a few other options I could consider, but ultimately I really wanted to see how I could do. I had been on this particular medication for 12 years and I thought it was time I try out my sea legs.
Coming off my medication took about 6 months, and was one of the hardest things I had ever physically done to date. I wanted my pregnancy to be clear of any questions that I could be harming my baby, so it was beyond worth it. Initially I gained some weight, and felt dizzy a lot. About 3 months later, we started to try to get pregnant. That didn’t take long… by September 2017, we learned we were pregnant!
Fast forward to January 2018, I am 20 weeks pregnant, so excited about this little baby, about the nausea finally subsiding, and the bump that had started to show. We were planning a gender reveal and going in for an anatomy scan. My anxiety at this time of my pregnancy was beginning to heighten and I should admit, I was not always easy. When I’m feeling panic, I want control and order, I want simplicity. But our life didn’t feel like any of those things. We were planning a kitchen remodel, and we didn’t agree on baby names. A gender reveal was being planned but I wasn’t allowed to be involved. My mom and my siblings were so far away, and I couldn’t find a sense of calm.
We learned Patrick would be born with a cleft lip on January 11th, 2018. It was confirmed with a second ultrasound on January 12th. My family flew into town for our gender reveal on the 12th.
Shaun and I decided that we would wait to share the news after the parties we had that weekend, we wanted more time to digest, and felt talking about it, might spoil the mood.
Looking back, I wish I did this differently, maybe the weekend would have been able to go differently, maybe we could have had an adjustment in the plans where I might have felt more comfortable. But I didn’t and that’s life.
We’re having a boy! I knew the whole time, I could feel it, or sense it, I was sure this little baby was a boy. I wasn’t surprised, but I was exhausted with fear and crimpled with anxiety. I wanted to run away and hide under blankets until I could process, until I could come up with a plan. But I was at a party and people wanted to hug me, and talk to me, and rub my belly. I smiled and I hugged people back. I could feel my knees want buckle underneath me and I could feel my armpits tingle with sweat. Everyone was so excited, but no one knew what we just learned. I held my belly hoping I could protect my son from what people might say, what people might think, how the world might accept him, from the surgeries he would need, from the extra care I didn’t yet know I would need to give him.
The next few weeks after this party I did just what I had wanted that night, I hid in my blankets and I researched, I planned, I called doctors, and googled bottles, I scheduled meetings, and I researched questions to ask. I was game planning, I needed a plan and I needed to make order of what I didn’t know.
I spent the following 4 months of my pregnancy in various states of anxiety, and calm. After meeting his cleft team at Stony Brook Hospital I felt confident in what we needed to do, I felt relief that we had such an amazing team so close by. I felt an incredible sense of warmth and community when we first publicly shared the news of Patrick’s cleft. Our friends and family reached out to us with such acceptance, support, and love.
Patrick’s birth was not at all as planned. Obviously! We were separated for the first 7 hours after he was born. He was taken to NICU for feeding evaluation and I had a low temperature they had to bring up. The day after he was born was our “initiation” I like to think into the life of a baby born with cleft. We saw more doctors and specialists each day than I ever expected, some I didn’t know existed, and others I didn’t know to plan for. I remember my mom standing at my side, anxious to hold her grandson, but more concerned with taking care of me. She and Shaun ran all over the hospital to make sure I got my pain medicine, enough water, what pump should I have, and she hasn’t eaten yet today. She was my rock and I knew the question was coming… do you want to talk to someone about managing the anxiety?
I should have, right? I mean one of the biggest concerns for moms post-partum is mental health. But I felt this strength in me that I hadn’t before. I didn’t want to give in now, but I promised we could keep talking about it. (** I should say, that mental health is not a game of strong enough to beat it! What I felt was different that just being strong, I had known in the past when I truly needed the medication and I don’t believe it’s a sign of weakness to accept help medically when it comes to mental health. If you or someone you know if struggling, please reach out to someone and get help, take the pill, and be proud you’re doing the right thing for yourself and your family.**)
The next time I really thought about medication was right before Patrick’s surgery. It was the hardest thing to imagine. I didn’t want to change his face, I didn’t want him to look differently, and I absolutely didn’t not want him to be in pain. The recovery for this surgery is hard, and I had been prepared for the physical and emotional pain moms feel. So many incredible women who have gone before me, were there by my side, texting, and sending their support and their advice. I really thought about it. Not that I was trying to be a hero, because I’m not, but I still felt that new strength I hadn’t felt before, I felt centered, and focused.
The day of surgery was a test of mental stamina for the best of us. Handing your baby back and walking away for hours, sitting, waiting, wondering. I asked that Shaun and I be alone. It was advice I was given, and grateful for. It was important that we do this together for our son, and that we do so without any extra voices. Good or bad, it was the best thing we did.
In the days to come, we needed those voices, and hands, and hearts, and legs. For about 2 weeks Patrick only slept for 1-2 hours at a time. He would wake and cry to be held. He hated eating and it was a real fight to get every ounce into him. His reflux was so bad he couldn’t keep anything down, and we were all concerned about his weight.
I took more help in the 3 weeks after Patrick’s surgery than I have ever accepted in my life. I have never been more grateful for people in my life! My husband who constantly asked what I needed and never got mad when I lost my patience, our family who checked in, and stopped by, our friends who came over to cheer us up, and distract us, the incredible support from everyone online, and in our support group!
We rolled right from 1-2 hours of sleep to just days later, Patrick started sleeping through the night. Once he was truly recovered, once we made it through the weeds, he was better than ever!
2018 took me from one of the hardest, most difficult weekends of my life just 12 days in, to the happiest day, the birth of our son, and then the hardest days after surgery, to the best most incredible Thanksgiving with all of our family, a memorable trip to Buffalo, and a beautiful Christmas with the Houlihans.
2018 you were a bitch, and a blessing, the hardest year, and the best year. Now that we have survived you, I think we can survive anything.