12 Lessons from My First Year as a Special Needs Mom

The Emotional Load is constant…and complex.  

1. Most people dont know what to do with an uncommon or permanent diagnosis
   Everyone seems to have a story about a preemie who “caught up by second grade” or their nephew who was early and sooo tiny but now plays varsity basketball. We smile and nod, knowing they mean well. But our sweet girl will likely always be small. And that’s okay. Her hearing aids spark either awkward sympathy or enthusiastic “they’re so cute!” comments, but what often follows is discomfort when we speak plainly about her reality.
   We’re not afraid of her diagnosis. We’re not sad. You don’t need to be either. She is exactly who she’s meant to be. 
   
2. You never get used to taking your baby into surgery. 
   Even as it starts to feel more routine, it doesn’t actually get easier.  In fact, I think my anxiety has ramped up a little bit more with each one we have had.  Nothing really makes sending your baby off to the OR easy, and nothing really makes the waiting anything less than excruciating.  
3. It’s okay to feel a lot of conflicting emotions at once.
   There is a balance of grief and joy, jealousy and contentment, excitement and frustration that comes with having a kid who is different. And all of it can live in the same moment. It’s very much a both/and experience oMy daughter is so full of life, joy, and wonder.  And she brings so much hope, joy, and delight to everyone around her.  I can celebrate Dot’s tiny victories—like working so hard just to roll—while still grieving that things aren’t easy for her. I can feel jealous of babies her age who are cruising furniture and also feel deeply proud of my daughter. There is no “right” way to feel—only grace for whatever comes and faith that she is moving forward at her pace and in God’s timing.  
4. Some days, surviving is the success.
   It’s okay for the day’s accomplishment to be “We are all alive.”  That’s not failure—it’s parenthood. I’ve spent entire days nursing, rocking, and trying to stay ahead of the overwhelm. Some days, it takes all I have to keep it together, even as I rock and soothe my screaming child.  After a year, Dot still nurses every three hours.  There are days I struggle with feeling like I a glorified dairy cow.  I become paralyzed by the endless to-do list. I wonder if I’ll ever exist without a child attached to me in some way shape or form.  But I’m learning that those days, just being there, fully present, is enough.

The Normal Rules don’t really apply and that’s Okay.

5. Milestones look different. 
   There are so many “mini milestones”  the baby steps that get you from one skill to the next.  Every new skill is the result of effort, therapy, and time—and deserves a full celebration.
6. Routines and schedules for people who have routine lives.
   Ours are filled with appointments, therapies, and unexpected changes. For the longest time, I felt like I was failing because Dot didn’t have a predictable nap schedule. But…naps happen when they happen.  Typically when she is tired…imagine that!
   And you know what?  It took a year, but she has started to settle herself into a routine.  I am learning that the more secure and confident she feels, the more independent she becomes. So the days she refuses to be put down and only wants to nurse and contact nap?  Well, we roll with it.  Because if she needs extra Mom time? Well, then it is my privilege to gather that little bean up in my arms and sit at the window with her to read stories, cuddle, nap, whatever.  
7. Perfection is the enemy of progress. 
   No, the nursery isn’t how I imagined it. But it’s cozy and filled with love. My house isn’t spotless, but I’ve found peace in small wins—like an empty sink or a made bed. Making the bed makes the messy room feel a little less overwhelming.  Emptying the dishwasher in the morning keeps the sink from getting too full during the day.  And dusting seems a little less daunting when the coffee table is clear.  

You become an Expert—Fast

8. I knew I’d need to advocate for my daughter. I didn’t know how quickly I’d become her expert.
   No one told me how frustrating it could be to go to a new doctor and realize that you have to reestablish yourself as the functional expert on my child’s health.  I never imagined I would end up becoming fluent in medical jargon simply because it is the fastest way of both telling the provider what is going on while simultaneously getting them to take me seriously. I have had to get comfortable asking hard questions, pushing for answers, and calling out what doesn’t feel right. And I’ve learned that my voice matters.
9. I get to build our care team—and I can say no.
   It’s not just about medical credentials. It’s about trust, respect, and communication. If a provider makes me feel small, unheard, or unseen, they don’t stay on the team. My daughter deserves a support system that can work together as a team for her—and so do I.
10. There are a million resources… but not all are accessible, realistic, or helpful.
    It’s overwhelming. If you don’t have the exact right keywords to search, or know what questions to ask, you may never find them.  And sometimes they are just out of reach.  For example, the county to the south of us offers a Parent Infant Program for families of deaf children.  They have a teacher come to your house to teach you ASL.  I live 30 minutes too far north, so my husband and I are trying to make sense of online classes and app resources.  There are a million resources and life can be so overwhelming it seems impossible to try to work one more thing in.  Not every resource will work for you, your child, or the season of life you are in.  It is okay to take a breath, step back, and implement what you can, when you can. 

You have to find Joy (and Yourself!) in the Chaos.

11. I’ve learned about the little luxuries of life. 
    Getting to finish a craft, having free hands to knit, going to the store alone, sitting in the parking lot for a half hour just to enjoy the silence of not being needed, and the bliss of a long, hot shower or bath.  There cannot be any guilt in these, and the goal is to have at least one little luxury in every day.  Because without them, your cup will run dry far too quickly.  Some days the beds don’t get made, and I opt for a bath instead of doing the dishes.  Not every day, because dishes do need to be done, and beds still have to be made.  But rest is vital.  You can only pour out so long as you have something in your cup.
12. Celebration is necessary—especially when life is hard.
    I am finding that even in the midst of chaos, hardship, and frustration, there’s usually still a reason to celebrate.  And it’s okay to go over the top!  This spring, we hosted a Kentucky Derby party.  We know nothing about the Derby.   Neither my husband or I are horse people, we had just been informed that we were going to need to consider a tracheostomy for our daughter, we were navigating the tragic and unexpected death of my grandma, and it was objectively the absolute wrong time to have a party.  But I wanted to wear a fancy hat and drink Mint Juleps.  So we had a party.  Planning it gave me something to look forward to, and the party itself was a break from our stressful reality.  It can be so hard to find reasons for joy and fun when you feel like you’re just barely hanging on.  Celebrate anyway.  Make fun a priority.  Our bodies arent made for sustained stress.  Joy is not a luxury, it is a survival skill. So give yourself a break and find a reason to celebrate.  

“Consider it all joy, my brothers and sisters, when you encounter various trials,  knowing that the testing of your faith produces endurance.  And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing”
-James 1:1-4 NASB