I don’t even mean to… but we’re just a Zara house these days. I love looking for stuff for bug during their crazy good sales like the one they have right now! Don’t forget to check out their boys section also for our girls… like her first (incredibly awesome) t-shirt shown below. Enjoy the sale!
Outfit One: T-shirt: Zara; Shorts: Target; Shoes: Vans; Baha Hearing Aids: Cochlear
Outfit Two: Romper- Zara; Shoes- Zara; Baha Hearing Aids: Cochlear; Bow: Etsy
Every now and then I read a post on some site like Huffington Post or a friend of a friend’s blog about how overexposed kids are these days with the internet. One girl posted how upset our kiddos will be when they’re older and see what ridiculous pictures of them were posted online when they were little. "Naked bath pictures! Ugh! Struggles with relationships?! Don’t you know your kids will read this some day?"
It always makes me stop in my tracks.
Well… hell… I am the guiltiest of the guilty when it comes to super-imposing bug’s picture on the internet, Instagram, Facebook. You name a site and I’ll find a way to show off my kid. Those that proclaim “they would never” or look down their nose at those of us that over-share… I want to tell you that I choose to do this very deliberately. I choose to share Landon and our story because I want everyone to know how proud I am to be her mother. I share our story because I want other struggling mothers to see her, read our story, and say “hey, we’re going to be great.” I share everything to show very earnestly and honestly the evolution of a family. The good and the bad. With or without special needs, raising a family is HARD. Being a wife is HARD. I felt sincerely that not enough of us were being honest about those two facts. We women like to pretend it’s all rosy in our gardens. As if admitting otherwise would make others judge us instead of embrace us.
At the start of Landon’s life, I was a struggling mess. Blogging helped keep me sane and the influx of love kept me going. It probably was selfish back then. After two years there has been a shift. I endeavor to reach those that need to hear that their rough starts to parenthood will work themselves out and that they can do very hard things.
I have thought long and hard about what it truly will be like if she reads this blog some day. Will she be upset? Will she be frustrated and hurt that I was SO open about our lives, her little life, our marriage, raising her and our triumphs and low points? I deeply considered stopping blogging all together as my guilt ridden brain cannot fathom if these people are right.
I received emails from other mothers. Mothers of children with Treacher Collins, Down Syndrome, hearing loss, women with post partum, mothers of children born missing a limb or with malformed hands. I received emails from grown adults with TCS or kids in college. They say that my writing changed something for them. There was a healing element to the honesty they read. They reassured me that they themselves share my fears and it’s nice to have someone be so open. Some have been so bold as to tell me my writing will help Landon always remember the support and love that surrounds her. God I hope so.
I have made this choice to share her and our lives with all of you, believing that our story has a purpose to help others. To connect us all as we fumble through parenthood and adulthood. After reading the wonderful response to my last post, I’m now more confident this little place online has this purpose.
From here on out, when I doubt, I will shout it outloud. This imperfect mamma is here doing her best. Showing up in motherhood, as a wife and hopefully a guide to connect other mothers on their own unique journeys. Reminding y’all to choose happy.
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 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.”
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.
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.
Happy Fourth of July!!!
Top: Oshkosh B’Gosh, Skirt: Gap Kids; Sandals: Salt Water, Bahas: Cochlear
Little break from the general heaviness on our blog. I’ve been reminded that there is great lightness as well in our lives that I forget to share sometimes. This lighter side is found in designing our home. We made this process a partnership… something we truly share with one another and I treasure our “design meetings.” Not only does Bo have great taste but also surprisingly we share the same vision for our new home. Thank goodness, right?! We also share a passion for fashion and all things design so I’ll be sharing whatever is currently trending for us each week.
Trending this week for me is designing one of our guest bedrooms. We have two guest rooms and we’ve each chosen one to design as if we’re holding our own HGTV competition. And we’ve set a very low budget for these rooms, choosing to spend the bulk of our budget in our master bedroom and downstairs.
For my guestroom, I wanted it to be more feminine. Since all the rooms I’ve “designed” in the past were in rental apartments… they’ve been more masculine to make my hubby happy. I wanted this room to be an oasis for our guests and one that made them feel like they were in a fabulous hotel room. A serene and a lovely escape. And as with many things in this house .. it all started with Kelly Wearstler.
This sample of Bengal Bazaar confirmed the direction with it’s light grey (reads blue in this photo) background. One of my money saving tricks that will allow me to use this fabric is to have great pillows made on Etsy.
Bed… I found this so far for the bed on Overstock. I love a high arched headboard and nailheads. This felt far more expensive than it is and you can’t beat Overstock’s prices.
For the bedding, here’s the current plan… I love John Robshaw’s woven quilts and plan to use his braided white coverlet possibly as part of the bedding in the master. To save some $ in this room, I feel like West Elm has the best copy out there at half the cost. And with the very warm Charleston weather, a coverlet is the way to go. I will add a simple duvet in the late fall and a throw.
Coverlet & Shams: West Elm
White and grey throw: Serena and Lily
This room has one french door leading to an upstairs porch/terrace and one window. I am so lucky to have my incredibly talented mother at the helm of fabric pulling from the DC Design Center where she very luckily works. She found this amazing fabric for the windows from Zimmer & Rhode that pulls out the lighter orchid color with has a grey weave. Love. Plan to do roman shades on the window and door.
Side Tables: Target (!!). This is NOT a large room so finding small side tables is important. Loving these as a thought to also save money. Always loved mirrored bedside tables.
Lamps are still TBD. I just can’t commit :)
Chair in corner: Bella Ivory Arm chair, Overstock
Accent pillows for chair and bed done in these great Zoffany fabrics, that I plan to order the fabric and send to Etsy sellers to use on the front of throw pillows. Another design on a dime trick!
For the Walls: Canvas White by Benjamin Moore
In adding crown molding in a small room and painting it… you add such great depth. A great grey shade for this would be: Sherwin-Williams’s Magnetic Gray SW-7058 and I’m sure there’s another easier to find Benjamin Moore grey (must check paint deck!)
For Art… I’ve only landed on one piece so far… from my favorite photographer Gray Malin above the bed.
Our Jack and Jill bathroom that connects the two guests has a white with grey floor tile so incorporating a light shade of grey was ideal. The tile are 4x36 pieces so this square image doesn’t do it justice.
So there is my guest room so far. Hope y’all enjoyed Design on a Dime for our Trending Tuesday!
Blogging is a complicated business sometimes. What if I want to be a private person yet still reside partially in this public space? There is a portion of my heart, my pain, my experiences that I do not share here. I don’t put out into the ethos for my friends and readers to know. That piece of myself is struggling right now. I’ve had to remind myself several times in the last week to breathe. Breathe in deeply and let it out. Just like my mother taught me long ago. Breathe in the good, breathe in the happy, let go of the pain.
I’ve spoken before of struggles I’ve had to overcome & obstacles here and there. I derive so much from sharing my life on this blog. New friends, reconnecting with old friends, learning of other women’s struggles & all they do for their families. Learning that I help some of you. It’s a gift to hear that.
Yet still, I’m not strong enough or brave enough to share all of me on here. So I dance around it. Sorry…. but it’s all I can do for now. Know, however, the struggle continues. My fight to choose happy, as some of you see from my Instagram page continues as well.
Friends of mine who know darkness & know what I mean when I say darkness, whether it’s children that have suffered or are suffering or marriages, have asked me before “why do you think God chose us for these battles?” Or “why me?” I have a variety of answers depending on who is asking. We’re chosen because of the strength of character we possess. The grit, the ability to rise above. Because of the families we have to help shoulder the struggles. Because we… are… capable.
In this moment I know and see clearly that God gives us opportunities. Gifts and faults alike are also given and it is our choices that make up our lives. I’ve chosen this man, I’ve chosen to say my vows. I’ve chosen to raise my daughter a certain way with our hearts open and our heads held high. My choices. These choices are complicated of course by what other people we love choose. They are tested by strangers comments and stares. Again, it’s what we do next that defines our character.
As I mentioned, I’ve written about my decision to choose happy on here and on Instagram. It’s a grammatically incorrect phrase…of this I am aware. That’s on purpose, friends. Anyway… this decision, this admission and this statement came about during this time of particular struggle. These things happening around me and in my heart led me there. I have to consciously choose happiness these days. I have to push through things and cast off frustrations and make this choice. This is not a 100 happy days campaign. This is not something forced either. It’s my decision to see my glass as half full…. even now. Even when I’m struggling. It’s the hardest thing ever. EVER. I ran this morning and when a sad tale was sung by Blind Pilot, that’s all it took to unlock the tears. I stopped. I shook my head. I said outloud… choose happy. And I kept running.
The truly gut wrenching hands that some of us are dealt are tests. From God, from fate, from whomever or whatever you believe in. It’s what we choose to do with these tests that define us. These battles are also meant to be shared. If you’re fighting one now and want to share, please don’t hesitate to email me. Reach out to someone and let them know you need a friend. We women are able to connect and find beauty in dark times together if we share in it.
Without detail or context, I ask for your continued prayers for my strength. I ask those friends that I know and have yet to meet. I love all of you.
Hope y’all have wonderful, wonderful weekends
Outfit One: Romper - Local from Hannah B’s - monogrammed there- seen similar ones on Etsy also; Beads- her own; Shoes: Vans; bahas: Cochlear
Outfit Two: Top: Osh Kosh; Shorts: Osh Kosh; Leggings: Genuine Kids; black eye care of jumping off a slide at church; bahas- Cochlear.
I say this phrase almost every day. When people ask how I am. How we are. What’s the latest with Landon. It’s always something. As I lay on my exercise mat this morning, avoiding an ab workout, I thought… no phrase has ever defined me so much as this one. And I don’t like it. In fact, I’m down right fed up with it. Why the hell does it HAVE to always be something with me…. with us?
As I surmount one hurdle, another one rears its head. I find myself telling people I’ve just met here a mini synopsis of our life and it sounds absurd. Most of the time, they stare and say “seriously… that’s ridiculous and down right stressful, honey.” Or they try to hand me a cocktail. Our life is always peppered with this one phrase.
This goes back to before Landon. Before marriage. To avoid reopening old wounds, let’s just say “it’s always something" has hung around my neck since my early twenties. With my parents, with my father, and then with Bo. To resurrect some humor during my darkest hours, I’ve said this to others. To let friends know that I saw the absurdity in just how bad things had gotten. Or that I could see my way out of whatever it was.
After we became a family, it was something that should have been put on a needlepoint pillow. We had this incredible girl and she has a rare syndrome. It’s always something. We took her to specialist after specialist. Waiting rooms, long subway rides. Therapy and not meeting goals. Breastfeeding or the lack thereof. It’s always something. While still in New York, as a couple, we started failing each other and being less of a team. It’s always something. So we moved. We started over. Living with his family and trust me… around here it truly is…always something. But now, as we build our house and see this dream out there… almost within reach… Bo lost his job. It’s always something. I’ve now gone back to work from home full-time. It’s exhilarating to use my brain more often and with adults (!!) but now Landon prefers someone else reads to her. When I run into the room after working all day to pick her up from her grandfather, she cries when I take her. It’s always something. And the highs and lows as you work together to find jobs, find insurance, keep up with Landon… there have been many somethings. And these things keep getting in our way of just being happy. Just being anything other than put-through-the-ringer exhausted.
This new normal is not just a life with a child with special needs. This new normal is riding on a roller coaster. I stop and think some days that surely all of these tests are preparing me for some unbelievably hard thing that’s coming. Surely there is a larger plan at work. God has this road map that I am following.
And this morning, as I lay there, I reminded myself that even if He does have this plan for me, my choices matter each and every day. My choice to be be warm and supportive to Bo instead of cold and challenging sets the course for that day and sometimes that week. Making more of an effort myself to leave my phone OFF or in another room when playing with Landon is my choice. Saying something truly positive when someone asks “how’s it going?”… my choice. My choices can offset this “it’s always something” attitude. That phrase is actually negative. “Sure this sucks and I’m in pain but this happens all the time to me, what’s new?!” It’s gross.
I want to break this habit. I want to make choices that break this habit.
I want to choose happiness and light instead of complaining or casting emotions aside. I want to stop assuming something else negative will come our way, because acting like “it feels like it sure will” isn’t helping anyone.
And today especially… all I wanted to do is come here and rant and rave about how frustrated I feel. How mad and sad and annoyed I am that it’s always something. But, after writing and thinking and writing some more… I’m choosing another route.
I am always preaching “choose kind” from the book Wonder. I promote the Kind Campaign on social media. So now… I want to choose happy. This will be my hashtag (and mom I’ll explain what that is later). No matter what someone else is doing, what energy they are throwing my way… I will choose happy. It’s not easy. I’m not saying it’s as simple as deciding. This choice will require a paradigm shift in how I think and interpret what’s going on in my life. There is darkness in this world and things are unfair, but dammit… this is my goal. I am plain old tired of being frustrated and feeling like I’m cursed. My choices have led me here after all. I’m a mother to the world’s most special child. I have an amazing family and husband.
And I… choose happy.
Who’s with me?!
I should rename these the anything goes squares because I’ve added and subtracted so many things in these bars while trying to keep them healthy. These have no flour, are gluten free and you can keep them relatively sugar free if you take out the chocolate.
Landon devours these so I add extra bananas to sneak fruit into her diet. I love them before the gym in the morning so that I have more energy and in the afternoon when I have to have something sweet. Another note is that I prefer them kept in the fridge especially in this SC heat. If you keep them out… they are just too mushy for me.
I adapted this recipe from about 5 different ones on Pinterest. Enjoy!
Happy long weekend y’all! Enjoy!
OutOutfit One: Toile Romper- Baby Nay (found on vacation, but sold at Neimans, Amazon and other small boutiques from what I found); Shoes: Angel, Bahas- Cochlear
Outfit Two: Top and bloomers: Sadie loves Kiki; Shoes: Robeez (old)
Outfit Three: Sorry about picture quality- tested out a new setting and it’s too dark! Top: Target, Toggle striped sweater around neck: Jojo Maman Bebe (old), Jeggings: Zara (old)- they run HUGE fyi, Shoes: Converse.