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.