To the Mother of the Newborn with Treacher Collins…

One of my oldest and dearest called me the other day to let me know that there was a friend of a friend who just had a child with Treacher Collins. As I heard her say the diagnosis that has shaped my life for two years, I swiftly made space in my heart for this mother. For the entire family. Saving space for when they need us, our support, and our love. They found out at the baby’s birth just like we did. Same shock and confusion, mixed with joy and hope. 

I quickly realized this may be the first family and mother I might truly be able to help. But where to start? What advice do you really give when it’s a journey that each mother takes in her own unique way?  When I reflect on those days in the hospital and a few months following, I realize I would have given anything to hear from someone just like me that had lived this life for a couple years. To not feel so alone. And this sentiment of connecting with other mothers through this blog, no matter what you face, is always my goal. To provide a place for people to come and feel a part of something. 

This blog post is for you. For the mother in the NICU googling “what is treacher collins” to the parent of a child with any special need that’s wavering between happiness and crippling sadness over what may or may not be lost. I hope this helps in some way…

The Information Overload.

It’ll be overwhelming. It’ll be confusing. Let it be. Know that you will eventually know all you need to know, and you don’t have to know it in a week. It’ll take time, it’ll take a fresh pair of eyes and a clear head. So don’t forget to really sleep. Don’t forget to take care of yourself in any way that you need to have that clear head. I remember this suffocating feeling of too many terms, too much information, thousands of forms and acronyms. I couldn’t retain it all.  As new mothers, we’re depleted and our brains just work differently. Tell your mother or your sister or your friend to buy you a huge plastic filing bin. Stick all papers in there. You’ll eventually organize it, but it doesn’t matter when. Just find a home for it all so it feels organized in your brain.  

In order for you to properly process the amount of change happening, you must also choose you. Try yoga. Try running. Try something for yourself when you can. Make the time for you so that this information can seep in while you do it.  It really makes a world of difference. If you don’t put yourself first every now and then, the pressure will take over. Doing whatever makes you your best self is what you choose instead.

The Basics.

The basics of feeding and caring for your baby will be more difficult. It just will. Your birth story may be hard for you to come to grips with for a while. You will eventually. But you’ll master your new mothering craft just like all mothers of kids like yours have before. You might not breastfeed because TCS babies’ mouths are different. It might not work for you. That’s completely fine and your baby will thrive and be just as healthy. You’ll have to find special bottles. Maybe even special formula. It’s annoying… for sure… but you can do it. You and he/she will get the hang of it together and feeding time will still be a special bond for y’all.  You might see a new mother nursing her child effortlessly and feel guilty, angry and resentful. While it’s natural to feel these things, just remember that YOU are doing what’s best for YOUR child. You’re showing up and giving it your all. Nothing else matters.

You’ll probably be living in the NICU, unlike most of your momma friends. It’s a very dear place but one you probably hate visiting. It signifies how different your story is. How everything you’d planned in your birth plan has changed. You’ll get to a point where leaving is all that consumes you. And then when you do, you’ll sob. This experience will make the word “nurse” sound the same as “hero.” 

Friends.

In the beginning, those friends that are sisters… the ones that have seen it all with you and still love you… they’ll rise up. They will be nervous of what to say. Let them be. They’ll want to cry with you like it’s their baby. Let them cry. Your friends are who will pull you out of your deeper holes. They will help you keep perspective when it’s too hard to smile.  Let them in. Share things with them that you’d rather keep private. It will keep you sane. 

There will also be friends that will break your heart. New or old, there are women that will not be sensitive to what you’re going through. That won’t call or write or come see you and the baby. There will be new friends that will complain constantly about baby or toddler things that you’d give your left arm if that was all you had to worry about. New friendships can be treasures… but some will not get you. And that’s okay. Weeding out the unhealthy things or people in your life will come naturally. Just let things be and cherish the friends that rise up. 

The amazing thing is that you will meet an entire new family of friends because of your child. Friends that you’ll possibly never meet in person but it doesn’t matter. You’ll text and email and love each other’s children. It’ll feel like you’ve known these women all your lives. It’s a wonderful club. 

The Marriage Story. 

You can be the world’s closest couple who never fights or the couple that battles constantly yet loves endlessly. It doesn’t really matter what you’re working with when you enter this journey… it’s gonna get hard at times. You just gotta keep the faith. You’ll both handle things with this child differently. You may resent him or her for their lack of emotion. You may not understand why you do all the speech and feeding therapy alone. Just ask him or her to help. Just ask and share in these experiences. Once I finally asked for more support, to share in the therapy… I felt a million times better. 

Your marriage will probably change for a while as you adjust to your new role as special needs or TCS mother. You will focus on the babe for a while. You’ll need to in order to gain some control over your whirlwind of a life. And that’s okay. Let it take over for a bit but don’t forget that other person. As you grow more confident as a mother with all you’re now handling, let that love come back to you from your husband or partner. Let it return and try to put them first every now and then. Talk very honestly about all you’re feeling. Share in anything together from dishes to a movie. Sharing is key. Love wins if you let it.

The Future Perfect. 

When you were pregnant I bet you had those daydreams about what it would be like with this baby and what your family would look like. How you’d be in the world. ETC. At first after your child is born and the shock of what is happening to them still has its grip around you, it’ll be hard to see those dreams. To see what the future holds. Slowly and surely as your child reveals herself or himself to you… it’ll return. And your dreams will be grander. You’ll see and feel their purpose of being incredibly important as you start to learn from them. When I look at Landon now I just see this incredibly bright light. A light that others gravitate towards. She doesn’t have special needs to me anymore… she is just incredibly special. And people feel it. They want to be a part of it. It makes my heart sing and I know she has an unbelievable life ahead of her.

The Hunt for Therapy.

The process starts quickly. I went from learning the term TCS- to filling out forms for NY State Early Intervention- to having an evaluation all before I had figured out how to breastfeed in public or pack the diaper bag. It was a messy nightmare where I didn’t know what she had, what to call her hearing loss, what the terms for her ears were, and so on. I was so lost. That is the moment when you reach out to someone else who has been there. On Facebook, on Instagram or here. Find a friend who has been in the trenches before.

When it comes to your actual therapists, you won’t know what you’re looking for and that’s fine. Let it begin and let the relationship unfold. As you learn the craft of speech therapy and/or feeding therapy, remember that you have a voice. Remember that when you feel frustrated or concerned. Speak up and make a change if you need to. If you live in a state where Early Intervention is a struggle (basically anywhere outside of NY)… you’ll need to put your helmet on and get aggressive. It’ll test your patience. Your sanity. But in it you’ll learn there is no limit to your strength. When there’s a breakthrough you’ll feel like superwoman. And you are.

The Surgeries.

They will come. Some children face them sooner and more often than others. My only advice on this score is to find the surgeon or specialist you are most comfortable with. You’ll know when you’re not. Trust those instincts. We met with several teams before choosing her cranio-facial team. That research and time spent in awkward meetings made me a specialist myself. After a little while I felt completely capable challenging and questioning and presenting our family to rooms FULL of doctors. For a while, you will spend countless hours in waiting rooms when you should be on the playground. It does suck, I’m not going to argue. You may feel resentful of the pictures your friends post online playing outside while you wait in a cold, sad waiting room. Don’t let the resentment win. Snuggle your little one tighter and remember that you can do hard things. Small or large, you were built for these hard things. And when you leave the doctors, go do something totally normal like sit in a park or push your little one in the swing.

The surgeries never get easier to prepare for. You will find your way through them in your own unique way. I like watching hilarious or ridiculous movies with noise canceling Bose headphones. I drown out where I am as best I can so that I can actually breathe. You must breathe. Oh and having my mother there. That’s the other requirement. 

The Fighter Still Remains.

You’ll learn to become a fighter. For her needs and then for other’s needs. While at first you will ask your mom, God and anyone close to you… “Why was I chosen for this?” You will wake up one day and realize it’s because you have the fight in you. You’ll champion your child and others. You will pay it forward and feel more complete than ever before. You will write this note to someone else in two years’ time. 

You can do this. If you ever doubt it, let me know. I’m happy to remind and encourage. To all of you wonderful mommas, welcome to the club.

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xoxo,

Eloise

A Birth Story

I was really inspired today to finally sit down and write her birth story. I’ve touched on it in a couple of posts, but I always navigate away from the raw details. Revisiting what I experienced that day and the five that followed is sometimes really hard for me. I feel guilty, confused about exactly what I felt, overwhelmed, overjoyed and I remember the pain. The pain of simply realizing that what we’d planned for, packed for and imagined was… well… different.

September 4th, 2012. I had these odd pains. They ran from front to back, were not consistent and were sort of dull. “This cannot be labor,” I told Bo as I paced the floor of my office. “This would feel different I’ve read."  Yeah… like those stupid websites actually tell you what it feels like. They do not in my opinion.  Cut to that night…they got worse and I’d tense my body together to help them pass. Still I thought…not labor. Maybe digestion issues from ALL that Pinkberry. I took a photo and forced a smile. Remember this day.

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September 5, 2012. By 12pm the next day it dawned on me for the first time in 24 hours.  These are contractions. Call your husband.  At least I was smart enough to "work from home” that morning. The doctor said I needed to just get checked out and see what’s what.  Fast forward. Hours later I’m in the Au Bon Pain in the hospital lobby b/c the nurses said to eat something before the epidural and that I had time.  And the pain went to about an 11 and i had to rest my hands on the wall by the bread and grunt breathe deeply.  How many people did I scare?! 

I was a week early, not 100% mentally prepared, but I was ready. The nursery was ready to have it’s accent color added but it was in order. (We waited on the sex so it was navy and waiting for orange-boy or pink-girl to be added). I had packed, bought everything any blog told me ever to buy for a baby. We’d taken the classes, read the books (okay I read the books). I had this perfect blonde haired, blue eyed baby in my mind who’d be so beautiful and this amazing lacrosse player and we’d do art projects and enjoy museums and picnics and… and… the list goes on. My mind had created exactly what this child looked like. This snapshot of idyllic childhood things.

But the pain came fast and like the mother Mary in the Bible, there was no room for me.  Yep, been at the hospital for hours but when it came time for needing a room (so new york) and needing “the juice”… all the rooms were taken. So I labored on the front desk of the trauma area. I wanted her to watch if she wouldn’t give me a room. Watch me cry, pace, lean over with my hands on bo’s shoulders feeling like I was just going to die if someone didn’t give me the epidural.

When that finally came I was so ready. “I’m an athlete, I can do this,” I kept telling Bo.  Which is hilarious b/c running has nothing to do with pushing out a baby. Anyhoo…. then it happened. The baby’s heart rate dropped. Suddenly and furiously the world tilted on its axis for the first time. It came back up, but then happened again. I knew something was amiss immediately. After the last time it happened, and I was at 10 cm… it was Emergency-get-the-hell-outta-the-way-scream-for-nurses-20 doctors later- chaos…C Section time. Thank God I knew that this entailed Bo not being able to join us. I knew that I’d have to find the strength and resolve to do this alone. Emergency C’s need to be sterile rooms and fast so no daddies.  When I felt an incision, they had to knock me out. And knock me out they did.

I woke up from a dream where I was in a room with all of my New York girlfriends. They were around me in a circle telling me that I was having a girl. I remember Neely and Haley and Martha Anne’s faces. All of the sudden I was conscious but could not breathe. I felt like I was suffocating. I willed myself to put my hand to my mouth and nose and heard the nurse say “Give her oxygen!!” Finally I could open my eyes. Where am I? What happened? I’m cold. Where was my baby? I had wanted that moment of “IT’S A …..!” But instead, as I was wheeled down the hallway to c-section recovery, while holding my bucket for me to throw up in (so pretty), I heard someone ask “Do we have a name?” And I heard my darling husband say “Landon Glover Southard.” The girl name. I smiled. And held my pink bucket.

Bo came over to my bedside while a nurse held her and said. “There is something with her ears but it’s nothing to worry about. They took her to the nursery but she’ll be in soon for you to meet her.” I have some parts of this period that I do not remember. They are so fuzzy from the anesthesia and bits of strange information Bo or a nurse would say. Ears? What do you mean strange ears?

I don’t remember who, but someone brought her over, wrapped in a swaddling blanket and in a knit little hat and I knew. Something was wrong. Slanted eyes stared up at me. Tiny little ear lobes and not much more of an ear stared up at me. What is going on?  I literally thought for a second “Who’s baby is this?”. For all of us mother’s who have experienced a shock like this, I think it’s important to admit what we truly thought. That way we can reflect that what happened next was magical and full of pure love.  But that dark cloud existed. It sat by my bed for 6 days.

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Finally getting up to a room and able to drink water felt like such a journey. I was exhausted. I  hadn’t seen my daughter since that one minute of holding her and then she was whisked away. I was SO out of it so I didn’t think twice about where she was being taken and why.  I was put in a shared room until a private room was available.  I was given my epidural push pen (genius), percocet and then an ambien b/c I could not sleep. My brain I think knew what was coming and it was alert and ready to handle it. It was 5am so I sent Bo home. Get rest, something is happening with our daughter. 

One by one they filed into my section of the room. And in NYC, this room is TINY. They introduced themselves- Genetics, Head NICU Nurse, regular nurse. My stomach flipped over and tied in knots. My world was about to be shattered and I’m on drugs and alone. Where is Bo? Where are his giant hands that I need to hold my face?

The geneticist cut right to the chase. “Your daughter has a rare syndrome we believe to be Treacher Collins."  "We need to move her to the NICU because we’re worried about several things and she can be closely monitored there."  I almost threw up. I was frozen. What did she just say? This isn’t happening. This isn’t fair. The entire pregnancy was perfect. My vision. My snapshot. Were perfect. I stared up at them and broke. I sobbed without any hesitation that they were all just standing there and I hadn’t even introduced myself. The nurse that was there for me grabbed my hands and pulled out her own cell phone. "Type in your husband’s number.” I did and poor, tired Bo, who had been told already and was waiting to tell me after I’d slept agreed to come back across town. I stared up at them and begged them to get me a private room. Begged for a room to be alone and to cry in. As if the angels heard, I was in that room in 10 minutes.

The NICU mother’s wing is eerily quiet. There isn’t a nursery attached to it for obvious reasons as the NICU is downstairs. The women are generally huddled in their rooms grieving or healing with loved ones.  When Bo finally walked in my room it became real. This thing they’d told me was written all over his face. He’d been sobbing also. We sat and cried. We let it wash over us. We had no idea what to say to each other.

After an hour or so he left to nap. His dad was coming in town any minute and the poor dog needed a little love and probably to pee. I met my nurse that would will me back to walk, and realized my entire vision and life was going to change. The snapshot needed to be altered. My vision of my baby would need to include special needs. What were those needs? I had no idea. My version of what she looked like was confined to two one minute sessions when I was drugged up. I could not get out of bed though, and she was in an incubator. So I couldn’t see her. For 36 hours I didn’t see my newborn daughter. I was in so much pain, I could not walk from pressing my epidural pen too much. My God the pain.

It was time though I decided on Friday morning. Get out of the fucking bed. I had started to pump but I really wanted to nurse her. I hated the thought of this tiny little baby being fed by a stranger. She needed her mother. I needed her. I needed to stare at her and feel the love that all mother’s explain they feel instantly. I needed my moments back. I didn’t get the right after she was born moment. I didn’t get my “IT’S A GIRL” moment. I didn’t get the moments when family and friends come in and I’m holding her in bed and they oooooh and ahhhh over her.

I finally got in my wheelchair. I had put on my own clothes that I’d brought with me. I had my boppy. I was ready. Almost 2 days after having her, I met my daughter.  I cried and cried. She was so small and slept, nestled up against me. The amazing thing to remember is how scared I was of her. This 6 lb baby baffled me. She had nodes all over her that monitored her every move and they’d constantly go off. How do I feed her? Change her diaper in the incubator? Forget it. The questions of “what is TCS”, “will her looks change”, “why is this happening to us?"  I think of the intense love I have for her now and those days seem completely foreign to me. I’m ashamed to be honest about what I thought. She is THE cutest baby in my eyes but her differences made me so nervous that first night. I felt like a terrible person. A terrible mother.

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I remember calling my mother the morning of her birth after I’d slept a couple hours. I couldn’t form words. She was on the train from DC coming up. Landon was born at 1am on the 6th so I told her to just come in the morning. She kept saying "what’s wrong?"  "Tell me,” she said.  I finally got the words out: “She has something called Treacher Collins.” I have seen or heard my mother cry about 5 times in my entire life. Her voice was caught in her throat and she said “We can do this.” “We can get through anything.” When she got there I didn’t want to let her go. She made me whole again, my mom. She made me feel like I could be a mother myself to this little tiny thing. I spent the next days going in and out of protective mother-mode to intense crying. When it was time for her to eat, I had to be there no matter who wheeled me down. I took one task at a time. With my amazing nurse’s help, I got my body upright and I walked again. Four feet to the bathroom but hey… I could stand up enough to shower. I put on makeup.  I remember friends asking why I bothered and it was for some sort of control. I needed to look a little like myself again even though I cried all my makeup off every day.

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I texted my four best friends from home and college and my two best friends from work. It was time for the world to find out. My inner circle. But they were sworn to secrecy. No one could know.  I have no idea why. I think I needed information to feel confident. I was in pieces. Google was my enemy. I didn’t eat much. I just wanted pain medicine and really soft tissues. And my friends. The four of you that came to the hospital know the raw, real me. I laid it out there for y’all to see. You saved me from myself and helped me feel like me again. You brought flowers, magazines, snacks, books and what you don’t realize is that you brought me so much love. I could smile again. I could eat again. My friends reminded me who I was.

And then there’s Bo. This man who I thought I knew everything about. He amazed me. He spent almost 24 hours in the nicu with her when I couldn’t be there. He couldn’t leave her. He knew every nurse. He gave her any bottle that he could. He helped them bathe her. His love for her was so instant and SO BIG. His love for me was patient and kind. Just like the prayer that was read at our wedding four years ago. He made me feel okay about every single emotion I felt. God he’s amazing.

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When it was finally time to go home, I felt like I’d been to war. I had battle scars. Nothing that used to matter mattered. And I was in SO MUCH PAIN. Research meant everything to me in those days. Breast feeding was so hard. I cried and cried. Any friend that came over, I just cried to them. I was a mess. Pediatrician appointments left me in a puddle. She wouldn’t gain weight. My love for her was so intense but I had no control. No control over protecting her from all the appointments with specialists. From her getting poked and prodded. Covered with nodes for tests. Weighed twice a week. No control over her latching.

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And then, one day, it got easier. It was when she was about 6 weeks. As my body and the universe seemed to want it, I gave up breast feeding. She gained weight. I picked up my iPad and wrote down what she had. And then I published it on a blog. Whoa. It was out there. Since my blog feeds stories for me to Facebook… it was really out there. And the love I received was amazing. From all parts of my life there was warmth, stories, and virtual hugs. Hand written letters and gifts from people’s friend of a friend. These amazing souls that circled our lives showered us with comfort. Healing began and I started to realize we were going to be great. That perfect life existed. She really was cuter than I’d pictured in my head. She was my perfect bug. She held onto my long hair and grabbed my finger. She would stare into my soul when she looked at me. She was mine.

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Since then, as I know you can tell if you’ve read the blog, I am madly, deeply and crazy in love with this child. She’s my life and center. She makes me better every day. I cannot imagine our story being any different. It’s made me who I am this minute, this day.

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xoxo

Eloise

Patch me up

Just surfacing from our ophthalmologist appointment. With an eye patch that is. It’s common, I’m learning, for TCS babies and children to have strabismus and therefore have to wear a patch. I’m not going to lie. The wonderful doctor, I love this guy, told me that she’d have to wear it and although I don’t feel strongly about it (truly) my voice caught in my throat. I choked back tears. All the sudden, my control over our situation felt slightly out of whack. 

I have grown used to and am happy about our baha softband, and I literally know everything there is to know about how the ear works. That’s been my focus- all about the ear. I know people in that community. I’m used to our speech therapies. And I had just started to not get freaked out when her eyes don’t match. The plate was full though. Me back at work, the poor ignored dog, trying to get back into “fighting shape” and be a wife also, along with Landon’s speech and hearing issues, knowledge there was strabismus in her eye, craniofacial teams and future surgeries.  There wasn’t room in my emotional cup for something even as small as a baby eye patch. 

Choking back tears is an art form I have mastered now. The burn in my throat… I know it well. So the tears remain unshed. Later I said. I focused on the doctor’s words. I even got some questions in. Even when he said the “s” word (surgery) I didn’t buckle. My friends’ and family’s prayers held me together like glue.

Now that we’re home, she’s just completely unfazed. She amazes me. She’s playing in her skiphop “gym” and just as fascinated by the animals, “talking” wildly and kicking her legs like crazy. All with her eye patch on. It will hopefully make her lazier eye stronger, which will in turn allow it to match up with her stronger eye. We pray.

So…two hours a day we will patch her left eye. Momma will suck all this up and be even stronger. We can do this. The doctor mentioned this may mean surgery on the nerves at 8 months or a year.  And you know what… that’ll be okay if that’s what we need to do. I’ll cross that emotional bridge later when I know what’s what. 

Her giant smile she just flashed me and her hugging my neck is all the therapy I need for today. Her love keeps my fear at bay. She brings me back to the present and makes me enjoy her normal babyhood stuff.

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She is just so precious to me. Growing up more and more every day.

xoxo

eloise

Lessons for my daughter

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I read a version of this on Huff Post and saw another on a blog. I’ve hijacked some of these b/c they were already perfect, and rest are my own.  I’d like to think I’ll update this over the years as this changes and she grows up (eek!).

Lessons for my daughter:

1. Don’t smoke. Seriously so gross. Oh and guys…they think it’s disgusting.

2. Manners. Yes ma’am and no ma’am all the way. Sounds stodgy, sure. But manners open doors, and cast you in a certain light. They take you places. You’re of southern heritage anyhow, child.

3. Don’t worry about the boy you love at 13 who won’t love you back. At 30, you won’t remember his last name.

4. Do, however, worry a little about the boy you love at 25. He might become your husband, as your dad became mine. But if he doesn’t, that’s ok, too. You are only 25.

5. Give back. Whatever charity sparks your interest, no matter how big or how small… give back. I also like to call this paying it forward. It’s the Christian thing to do as we’ll teach you. I need to do more of this and truly look forward to doing this together. 

6. At your wedding, should you choose to go that route, all that really matters is the marriage… although the details will be really fun. Oh and choose a band… so much more fun. 

7. Don’t get in cars with drunk people. Call home instead, no matter the time or how old you are. Ask for your dad.

8. Don’t stress about the cool kids. The less you care about them, the more they will care about you. And don’t let them talk you into smoking. Genuinely kind and sincere friends are cooler anyway. Also, “going along” with the cool kids and doing something mean to someone else is not “cool”. Remember what happens in Mean Girls.

9. Treat others as you’d like to be treated. Repeated over and over again throughout my life, it’s so true.

10. Learn to appreciate art. I’ll probably overwhelm you with art projects and museums. It’s one of the most special things I share with your grandmother and I’d love to share it with you as well. Love of art will have so many meanings over the course of your life.

11. Work hard at your school work. Take it seriously.  It’s one of the most common regrets I hear from family and friends… that they drifted. Working hard and succeeding in high school leads to a good college, and then you actually know how to work hard at your first job. As someone who hires for a living, you can’t teach hard work.

12. You can’t change people. Not men, not your friends, not even your mother. Accept the ones you want to accept, move on from the ones you don’t (except your mother, of course).

13. Put down the electronics and go outside. Explore. Find your sense of “play”. Maybe take a camera and see what a city, a town, a backyard looks like through that lens as well.

14. Go to Paris. And then go again. And then go again.

15. Spend money on expensive shoes and handbags. At least one of each.  The crap from Canal Street is just that…. crap.

16. Consider living in New York at some point. I truly feel that I grew up here. I (re)met your father here. It’s a city of endless possibilities.

17. Don’t feel you always need a boyfriend. I feel like I always did have one and wish the majority of that time was spent with my girlfriends. They mean more now than those silly old relationships and should have then.

18. Take the high road. There will come a time when someone you love (a friend or a boy) will disappoint you, hurt you or God forbid… humiliate you. Don’t stoop to their level… remain yourself at all times. If you’re not sure who you are… ask me.

19. Don’t let anyone, I mean anyone tell you that you are not beautiful. Sure, there are hearing aids, there are differences. Those things contribute to why you are SO beautiful. When people say beauty on the inside matters most… they are telling the truth.

20. You can hate me sometimes. And I am sure that when you are a music blaring- embarrassed-by-me, sharp-tongued, rebellious teen, that I’ll have issues with you. As long as we both remember that underneath any animosity, there is a love like no other.

I love you and you’ll hate the nickname eventually but you’ll always be my little bug.

Love,

your momma

xoxo

A hat

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A  little white hat made me sob today. During presents. It wasn’t just any hat though. Grandma Krissie found it at a store here at the beach in SC made by a mother who’s child has Treacher Collins. This little ole’ store in their hometown just happened to carry this brand. The mother’s story is on the back of the tag.  Her heartache. Her triumph in championing and celebrating her child.  Her story.  My story.  I still haven’t even finished reading the tag. I had to leave the room…. to sob on Christmas.  Even though there was guilt for crying… I couldn’t help it. Her story is mine. I have only lived three and a half months of it but I know it.   

And then there’s Landon. This sweet, loving, curl-up-under-the-neck snuggly baby who I love SO much.  It is her first Christmas and although she has no idea what today is, it’s so much more special now because of her. I honestly, no seriously, didn’t want anything or need anything. I just wanted to hold her today. This is cheesy but….. she’s my gift. 

Back to the hat. After reading this mother’s story, I realized a few things. This sadness or pain isn’t going to just go away b/c I want it to. It’s going to live in my heart maybe forever. It’s not as easy to trigger anymore which is progress. There is real meaning behind why I cry now.  Another thing is to acknowledge my intense, recent anxiety. I wake up about 5 when the baby is sound asleep. I sit and stare at the ceiling and stress about working and being without her.  I have my mother-in-law and then a wonderful nanny lined up, but she is still just SO SMALL.  There are developmental things that she isn’t doing yet and it’s worrying me.  The questions- is it b/c she’s so small, b/c she can’t hear perfectly, or is something else very wrong?  OR is baby center designed to drive me insane?    How do I stop it?  Seriously, reply or email me with suggestions.  So far only sleep aids help or working out intensely (when there’s time of course) so that I’m exhausted.  

But… she is so loved and so happy.. it’s very easy to forget all this during the day. I uploaded an obnoxious amount of photos of her this week to Facebook. Pictures of her feel like part of my therapy. They make me so happy. This is the confusing part… the happiness and sadness are interwoven. Some nights I honestly go from laughing at her overzealous open-mouth gummy smile to tears streaming down my face in a matter or moments. 

I realize it’s Christmas and this isn’t the traditional uplifting post. I know I am SO blessed. I think it’s just also time to remember to be alright with my healing process. I do not have to always be okay.  And the white hat reminds me that I am not alone. There aren’t a lot of us, but us TCS mothers have a story that I am just starting to learn how to tell. 

Merry Christmas to all and to all a good night!

xoxo

Eloise

Proud Mother

I’ve had a breakthrough. It wasn’t a sudden rush… it happened over time. I’m almost overly proud to be Landon’s mom. 

That has to be a very strange statement for people to understand. Everyone is proud to be their child’s mother. Let me explain.

When we brought Landon home- at first- I was feeling really private about what she had. I didn’t want anyone to know. I didn’t want my small circle to tell anyone. I was really secretive about her malformed ears, somewhat different shaped eyes, how incredibly tiny she was. I can’t explain exactly why. I wanted to protect her…. and me.

It’s like the story in my previous post about Holland, it just wasn’t what I had expected. I wasn’t prepared. All my preparations had been about the nursery, what diapers to buy, strollers, diaper bags, Baby Bjorns. About how to calm a baby, how to breastfeed, how to swaddle. I read baby center everyday.  I had always fantasized about being a mother. I was so proud to be pregnant.

So when the geneticist, nurse practitioner and nurse marched into my room 5 hours after my c-section and told me they were moving her to the NICU “because she has deformities and a rare syndrome” … my world was shattered.  I had a very healthy pregnancy – even working out the day before I had her.  The word surprise doesn’t cover it.  Did I mention they told me when I was alone and on 3 different types of drugs? Yep.  Enough about that day though. 

So I just didn’t want to tell people.  I didn’t want to face the stares, the “poor yous”, the discomfort that people feel when they realize something is wrong with your child and they don’t know what to say to you. I wanted to live in my bubble of Landon, Bo and Kingsley and not face the scary world. 

I posted photos on facebook at first when you couldn’t see her ears. I bought 30 hats.  I just couldn’t deal.  But slowly, over time… things started to change.  I met my Clarke School friends.  We got our baha hearing aid and met other babies who also wore a softband. I became educated about the syndrome, hearing loss, how the ear even works.  I emailed with a mom who’s child also has Treachers and found another mom’s email that lives in NYC. 

Slowly I came out of my shell about what she had. I wrote about it on here and I started to feel normal again.  Hundreds of people emailed me and told me their own very personal stories of adversity, fear, and loss.  The healing really took hold of me. I started to tell people her story- without crying.  That was major.  My voice would catch a little at first, but I could make it through the story without waterworks. It got easier and easier. 

We put on our softband in public, in the bjorn, and would gladly answer strangers’ questions about “the little box” on her head.  My pride started to swell. We just attended our first baby party and I could not have been prouder of every little thing Landon did. Proud of her softband, proud of her Treachers. Beyond proud that I’m her mother. Proud that I can help other people. That other moms trust me to tell me what they have been or are going through. 

I feel whole again. We will have tough days. I will cry again. I will have to face scary surgeries and therapies.  But my pride is here to stay and it’ll only grow from here. I love her so much I could burst.

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