Life at 10 months…

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.

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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.

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10 months old today!

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.

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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.

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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.

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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.

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A Mom You Should Know…

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.

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Kristen and her beautiful family

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.

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“out of my way! I get my complete palate today!”

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.

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Getting an 8 month old to take group pictures….

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1 in 700 babies are born with cleft world wide.

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For all things embroidery and vinyl check out her adorable Etsy shop: Sew Vinyled.

https://www.etsy.com/shop/SewVinyled?ref=seller-platform-mcnav&fbclid=IwAR0yioX3x4hkMmafSVX03zzT_xuxOJNCtagVOKgg9O1JTVoAZuO9EGYVxs8

One year ago…

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.”

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Getting ready to go.. My bump was getting so big!

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?

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We received this sonogram image the next day, where they were able to confirm the cleft.

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.

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Patrick went right to NICU, he was so big, and juicy, and yes PERFECT!

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.

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Reading this book right now about Growth, this quote really hit me.

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.

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2018… my bitchy best friend.

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…

  1. I have never wanted anything so much my whole life, as I wanted to be a mom.
  2. 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.

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The first sonogram that showed his cleft.

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.

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Looking at these pictures can be difficult for me, the night was so emotional.

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?

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We were together at last, and I couldn’t have been any happier!

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.

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Right out of surgery. I wanted so badly to look into his eyes, his face was so new to me. But I was so happy for him to rest, back in my arms!

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.

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Amidst all the pain, and frustration, he would smile for us, and it made it all worth it!

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!

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This day forward really changed everything, once the arm restraints were gone, he started to sleep so much better!!

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.

 

What’s Next?

I’ve been a little MIA… we have been super busy enjoying some first Holidays celebrations and preparation. We have also had a lot of follow up appointments. Two and a half months post-op Patrick is doing so well, and we are so grateful for how he is healing.

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Patrick had so much fun in Buffalo making cookies!

I recently shared that Patrick’s cardiologist saw him and we learned that his VSD, the small hole in his heart, has closed. When Patrick was born and we learned that he had a heart defect, I was terrified. I didn’t expect to learn anything about his heart, and I worried about what this meant in terms of complications for the surgeries, and his life. I worried about things like; would he be able to play sports, would he need heart surgeries?

We learned that the VSD would show symptoms while eating, causing sweating and difficulty breathing. His doctor believed based on the size of Patrick’s VSD, that it would not show symptoms, and that it may eventually close completely. We prayed that it would, that he wouldn’t have to experience the added struggles. At our pre-op appointment in September they cleared him for surgery without any additional measures necessary; the VSD was getting smaller and they were so happy with how he was doing.

While the expectation was that the VSD might close, when we got the final clearance, the absolute relief, and joy was overwhelming. I was holding Patrick, hugging him to my chest and I just kept crying. We love his cardiologist, but to learn we can take him off of our list of concerns, no more visits necessary; it was such amazing news! I could still cry of joy thinking about it.

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His cardiologist made him a balloon animal to celebrate!

We also met with his cleft team last week and scheduled Patrick’s next surgery for April.  I have mentioned and spoken to people about this surgery and they’re surprised or confused.. “Another surgery so soon? He looks amazing though.” This surgery will repair what you can’t see, the cleft of his palate. While Patrick looks absolutely incredible, the cleft of the palate is a structural defect, one that makes it impossible to create true suction. Until his palate is repaired he would not be capable of successfully using a traditional bottle, sippy cup, or straw.

Just like the first surgery, we have prep to begin for the second. The biggest piece of prep for us is getting Patrick to drink from an open cup. You will start to see us posting pictures and maybe videos with his cup, and I know the first reaction will be “So Soon?!” It is incredibly early for a baby to begin working with an open cup, most children would start working on a milestone like this around 14-18 months old. However, after Patrick’s surgery he won’t be able to suck for 4 weeks, so the bottle will go away again, this time for good.

After his lip repair, we weren’t able to use a bottle and instead we fed Patrick mostly through a syringe and a special bottle called a tender care feeder. Both were super annoying and he hated them. The goal for this second surgery is that he is weened from the bottle completely and successfully drinks from an open cup. Our surgeon and speech therapy team have talked to us about how important this is, babies who are successful with this have a much easier time with recovery and fewer days in the hospital! We’re very motivated and so far Patrick likes his cup. He goes through the motions of drinking from the cup. We’re working on actually swallowing, I get so excited when he does!

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Patrick with his Reflo Cup

We are so beyond grateful for a few months where we can enjoy a little break. Most of our medical team has cleared us for 2 months, which means January and February will be slow months for appointments and I have never been more excited about the idea of the pajama days! Since Patrick was born we have had an average of 2-3 appointments per week. Some weeks we might only have 1, but others we would have an appointment every day. Thinking of 2 months free is almost inconceivable. Best Christmas present we could have received.

 

Mama Drama

I am a member of an online support group for moms with children born with cleft. The group is much larger than that though, it consists of mothers, but also fathers, grandparents and of course individuals born with cleft themselves. The group’s only rule “Be Kind.”

My mom actually found the group and shared it with me not long after I received the news Patrick would be born with a cleft. Initially the group felt both a bit overwhelming even scary, and yet comforting and informative. There were days early on, I had to force myself not to go on, it was too difficult and I was too emotional. Other days I would scour the group with intense curiosity and a sense of community- we weren’t alone.

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Our first sonogram, showing Patrick’s cleft.

The group on a whole I would describe as supportive, open, and accepting. Members geographic locations are diverse scanning all regions of the United States, and many regions of the world. With this diversity comes a large range in quality and access of care, insurance struggles, and saddest of all, local community acceptance of their children. I have heard stories that break my heart and others that warm me. Overall, I am grateful to witness the general warmth these parents receive when they come to the group for advice, support, and overall, a safe place to vent.

It came as shock to me you’ll understand when 9 months after joining this group, I log into Facebook to see a firestorm of drama unfolding on the page this morning. Someone had posted what I would describe as a rude, trying to start shit, post. She asked “why do so many people call their kids clefties?” (A term a number of people use to describe their cleft affected children. It’s a slang for the longer term cleft cuties” ) It bothered her, and she thought we should all accept our kids for more than the way they were born.

Personally, I don’t use the term. I get it, I don’t hate it, I think it can be cute the way people use it, but I don’t. The way the mom said it bothered me though. And as you can imagine, it realllllly bothered a lot of other people. Now the comments were HUGE! I started to read some, obviously sucked into the vortex of this drama unfolding online. I mean lets be real, this was car crash level, you wanted to look away, it wasn’t right to stare, but you just couldn’t!

There were so many comments I didn’t read all of them, but many were nasty, on both sides -defending the post and agreeing we needed to stop using the term. Others bashing her for not being accepting. (ironic when we harass someone nastily for not accepting us, while not accepting them.)

The post was taken down, and the admins all made a post reminding us of our only rule in the group “Be Kind”. A lot of comments continued, apparently there was a comment I didn’t read that really went below the belt. YIKES, I really wish I had seen it. (so wrong, I know!)

I tease, but watching this unfold in a place I truly believed to be one of compassionate and accepting parents reminds me of just how low we can go when we believe someone disagrees with the way we parent,  the way we get through a day, the way we choose to survive raising tiny humans.

The thing is, we will never all do things the same way. We don’t think the same things, and we haven’t walked the same path as each other. I am the youngest of 4 children, all of us parents ourselves now. All four of us have chosen to parent our kids so differently. Imagine now, we grew up in the same home. We, as a larger community come into parenthood with different experiences and perspectives that shape what we believe is the best way forward.

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My siblings!

Organic foods vs non? Breastfed vs bottle? Purees vs Baby led weaning? Cry it out vs Rock them to sleep? Private school vs public? Working mom vs Stay at Home? Tough love? Help with homework?

We are never going to do things exactly like our friends or family, or neighbors, or kid’s best friend’s parents. That’s not how this works. There is no one size fits all parent, and the choices we make, or actively don’t make, are part of the journey to surviving being a parent.

I would have told you at 23, I knew exactly the kind of parent I was going to be. I would never let my kids sleep in bed with me, I would breast feed all them until they were at least a year old, and tv or screen time should be seriously limited!

Guess what? My baby has been bottle fed formula, slept in bed with me for 3 months, and we play cartoon nursey rhymes every day! HA!

Life. It happens, and not always the way we expect. But I believe with all my heart that all of us make choices every day that we ultimately believe is in the best interest of our kids.

Those nursery rhymes for my 5.5 month old? Maybe not the best for Patrick, but they keep him quiet for a little while, which is good for me. Good for me is good for him.

Let’s be nicer to each other. Let’s talk nicer to each other. Let’s stop talking behind each other’s back!

These moms in my group who call their kids clefties? They say it in the most endearing and loving way. They love their kids, and find the term loving and adorable. They don’t believe it’s a bad thing. They’re raising their kids to embrace who they are in all ways.

The moms who hate it? They are working with a different mindset. They believe giving them a nickname of their birth defect would then define them this way. They are working on showing their kids that they are more than just how you were born.

Both of these kinds of parents are right, because they love their kids! You will inevitably agree with one of these two things. Just don’t hate on someone when you learn that they think differently.

Let’s agree to support each other, even when we don’t agree. Let’s agree that we will always believe moms, and parents are making each decision with the intention of doing what is best for their kids, and their family.

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My cute baby this morning, because look at that smile!

This is it

The last two days are exactly why I started this blog. So here I am, Patrick is finally napping and I am at my computer to vent, or share, or commiserate. If I lack all logical grammar and thinking you’ll have to forgive me!!

Yesterday, Wednesday, Patrick had a regularly scheduled appointment to follow up with ENT. He had tubes placed in his ears at the time of his lip and nose repair to help drain excess fluid he had in his ears. We had an appointment to follow up and make sure everything was looking good.

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Bracing ourselves. Note my shirt #goforit

On Monday I had called to follow up with his dentist to see when they wanted to see us on Tuesday. We had an appointment with them the week before to get mold for an obturator. (A device that is placed in the roof of his mouth that helps create a hard surface. It looks like a pair of dentures without the teeth.) When we had gotten that mold last week  we were told he was going to need to get a second mold done since his mouth had grown more than the dentist had expected. We were supposed to be seen this Tuesday, but the office hadn’t called to give us a time. When I called on Monday they informed me he didn’t have appointments available for Tuesday. SIGH. We really needed our obturator back. (We had to be without the obturator for at least 4 weeks post-surgery.)

 

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Patrick’s 1st and 2nd obturator side by side. (Today he received his 3rd!)

The dentist that takes care of Patrick is one of my favorite providers we have, and that is a tall order to fill. He is sweet and super caring, he has been going above and beyond from day 1. So, after I hang up with the office, he texts me! He is so sorry about Tuesday- his office manager has left for another job opportunity and not been replaced yet, he is been super busy and now without his right hand. BUT he can squeeze us in Wednesday at 11am.

This is a horrible time for us, but knowing his schedule and that we really need this done, we take it!

Just break this down with me. The team that takes care of Patrick is a division of Stony Brook Hospital here in Long Island. They all have offices either across from the hospital, or about 5-10 minutes east of the hospital. We live exactly 27 minutes from the hospital without traffic, and 20 minutes from the main offices. We see Dentistry at 11, and ENT (10 minutes away) at 1. Our appointment with dental is typically about 30-40 minutes. YIKES!

End result? We spent the day at Stony Brook.

We left our house at 10:30, saw dentistry, Dr. Larsen is the best, but getting a mold of your mouth is annoying for anyone, and a bit traumatic for babies. Patrick gags and screams, and gags more, while they shove a tray full of clay into his mouth until it hardens and then they pull it out ever so gently so as not to disrupt the perfect mold of his little mouth. Keep in mind this time (for the second time) Patrick is 5 weeks post op from a major surgery on his lip. I imagine it’s not the most comfortable for him.

We leave dentistry around noon, with the plan to return tomorrow to pick up our new obturator that Dr. Larsen is making overnight for us! (Did I mention how much we love him?) Patrick is exhausted and hungry! I feed him in the back of my car, and since his reflux has really been acting up, he is supposed to sit upright for 30 minutes after eating. I don’t feel like we really have 30 minutes to sit, but we do for about 15. I get him back into his seat, much to his dis-like and we start our short drive to see ENT.

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Always bring friends, they make everything better!

Patrick has now been awake since 9am and is extra tired from the fight getting his mold. He falls asleep in about 2 minutes. I drive around as long as I can so he can get a few minutes of sleep. Unfortunately as soon as I get him out of the car he will wake up. He sleeps a total of about 15 minutes before we have to walk in to our next appointment.

The doctor is running late but then we’re seen – drama free here! And we get ourselves back in the car around 2pm. He falls asleep again about 10 minutes into our 20 minute drive, giving him another 10 minute mini nap. We get home, he is up and about, and starving again.

Days like yesterday are so difficult for us, and impossible for me emotionally and mentally. I feel extreme guilt for exposing him to a schedule like that. I work so hard to keep only 1 appointment per day, but some weeks, it just isn’t possible. We need to see these doctors and they have very full schedules. When they take the mold in his mouth and I hold his arms down, I could cry that he has to experience this. I keep thinking it will get easier, but it just doesn’t

I should say, he is a such a trooper! I mean, he is exhausted and for all intents and purposes, sleep deprived, but when the pretty brunette nurse walks in the room, he goes full flirt mode, giving those dreamy shy eyes and heart melting smile.  He knows how cute he is, and plays it up!

We both got home yesterday completely exhausted. He finally went down for a nap around 4:30, and I finally look around my house to the mess I left behind in my rush to get out this morning, I have laundry in the dryer that really needs to be folded. It’s 4:30, and should really figure out what we’re having for dinner. Instead I called Shaun and got him to bring home tacos. I mean I deserved it!! I leave the laundry, and try to at least straighten up the kitchen.

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Dr. Larsen! He even takes selfies with us !

Unfortunately a sleep deprived day where our routine is really off also means a horrible night of sleep.  So today, when we head back to the dentist for the final fitting of our new obturator, I know it’s not quite time to get back on track. We had another mini nap on the way home, and fought hard to get back down for a much needed nap.

I have to force myself at the end of stretches like these to find a way, somehow to see the light here. So at the end of this rant let me say this: Patrick’s new obturator fits beautifully. He ate like a champ when we got home and I am feeling incredibly hopeful that it’s going to make a difference for us. He is napping now, which leaves me with hope for a happy afternoon, and very best of all- tomorrow we are appointment free!! Can anyone say pajama day?!?!

Let’s Get Real

So many have reached out to me about how grateful and interested they have been to follow in our journey with our son Patrick. Sharing our journey was a decision that felt natural and yet complicated. I constantly want to share my beautiful, perfect, and wonderful son with the whole world, I always would have. I also really want people to understand this “thing” that makes my son unique. This thing that I knew nothing about less than a year ago.

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Our 3D ultrasounds were the best!

Shaun and I talked at length about how to first share our news publicly. I’ll never forget, one evening, we were discussing making a post for facebook, I had tears in my eyes, emotional over sharing Patrick’s cleft and finding out how people would react. Shaun interrupted me and said rather sternly “My son is not a pity party”. It took me back a minute, but I knew the second he said it, that he was right.  How we felt about this and how I shared it with everyone would affect how people understood and embraced it. I didn’t want my son to be a pity party, I did not want to nurture an environment where my son would have people feel sorry for him, but rather where he would grow to be strong and confident because of who he is, not just how he was born.

This simple comment has shaped how I have worked on sharing our journey. It gave me a new perspective. I had been sitting with the idea of the things that wouldn’t be “normal” and I WAS feeling bad about it. I am grateful for the time before Patrick was born when I could be sad, and I could mourn the loss of the picture I had in my mind of what it would be like to have my first child. I allowed myself the natural ebb and flow of emotions and I believe it was important for me to feel that natural reaction as it came. I never allowed myself to stay there long, I would tell myself, “You can cry and be sad for an hour, then you pull yourself together and know how much you have to be grateful for”.  I changed the amount of time based on how sad I was, sometimes 20 minutes, sometimes a whole day.

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Our first real snuggle

The truth is, the reality is very different than the picture I had in my mind, but it’s no longer something I feel sad about. It is something that is very hard, and more challenging than I ever expected, but Shaun, Patrick and I, we aren’t sad, we didn’t lose anything, not even close! My son is such a joy, he smiles and laughs all day, he loves to move, and flirts with every brunette he lands those baby blue eyes on. I love him more than I thought possible, and while we have had some hurdles, I know that its only strengthening the bond we share.

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That smile !

Now that we can be clear about this ultimate love and incredible bond we share… I should note that I realize in my ultimate desire to be positive and paint a picture of strength and the show the joy we still experience everyday, that I may be painting a false image.

That’s what we do on social media, right? We show the beauty and we paint the picture we want people to see. We put filters on to make ourselves look flawless, we smile and pose for pictures in a restaurant and then look down at our phones. This generation of social media has created an impressive machine to share our lives. You know what stinks most about that? So many of us believe we know what happens in someone else’s home because we let each other in, but only with what we think they want to see.

I hear so often how strong I am, and how impressive it is the way I am handling everything we have going on. I’m grateful for these compliments and so appreciative of the love and support from everyone. But I should be honest, most days… we really are a mess. He cries, I cry, he doesn’t sleep, I don’t sleep, he struggles to enjoy eating and that breaks my heart. His reflux makes the laundry almost unmanageable, and has made getting him to gain weight an added challenge. You have seen the heart melting smile, and I have showed you the joy he brings everyday, the light that gets me through.

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My snuggle bug

I still don’t want you to feel sorry for us, the truth is that being a mom is hard, it is exhausting, confusing, overwhelming, and isolating. I have spoken to so many young moms who are fighting their own unique battles and feeling the same way I am. Becoming a mom is the thing I looked forward to most in my life. I know I am not alone in that. I also know I am not alone when I say, some days I feel defeated, and lost, I feel like I’m making all the wrong choices, like I can’t get it right.

I am starting this blog as a mom who wants to provide a platform to be real about our life. We have a lot of unique and regular milestones I will continue to be interested in sharing. I hope this blog might find another woman waiting for the birth of her child who will be born with a cleft so she can know her feelings are real and natural and healthy and that it will be okay. I hope this blog might find a mom of a newborn confused and overwhelmed, feeling like everyone else around them seems to be more of a natural. I hope this blog might find other moms of young children who know and remember all too well what it’s like. I hope this blog can become a better tool for our friends and our family to continue to follow in our journey.

Please return to find more in depth posts where I will get real about some of the most common questions I get asked!

“What was the hospital and delivery like? Was it different than a “regular” baby delivery?”

“How many doctor appointments do you really have?”

“Breastfeeding, and our journey through feeding”

“Surgery day and surviving that first big hurdle of that recovery.”

“What comes next?”