Everything about life with Hudsyn (Grade III HIE at birth, spastic quad cerebral palsy, Lennox Gestaut Syndrome (epilepsy), g-tube dependent, etc) takes more energy, time and brain space to manage. We never in a million years thought we’d be living a life of medical appointments, therapies and the constant need to advocate for her needs. I wake up on days like today – a gloomy, cold Sunday in February – and look back eight years and wonder…how in the hell did we really do all this? Dan nods his head in agreement through sagging, tired eyes as he sips his third cup of coffee.
From day one of her diagnosis, I felt Isolation knock at the door of our NICU pod like the grim reaper. I wasn’t enjoying time with my newborn by breastfeeding and stroking her face against my chest like the others in my Bradley class were doing. I wasn’t writing her birth story, happily referencing the timeline of events that occurred the evening before. As soon as she was born, she was whisked off to the necessary help she needed while I sat in my hospital recovery room, oblivious to what was really happening. No one was communicating and my blood loss was so intense, my chest felt heavy with dull pain from my heart working so hard to pump blood throughout my already drained body. I was alone in this new battle. She was alone. And we were both fighting for our lives right from the start.
My world became very small all of a sudden. Friends and family who visited were all puzzled by what had happened. “What went wrong?” “How did this happen?” And the infamous…”Why?” None of these questions came at me like soft whispers…they were intense, flame throwing accusations that I was completely unprepared to handle in those first few days. Isolation grew even stronger. I wasn’t part of their world anymore. I now had a baby…a broken one. And no one really understood how to help or what to do. People brought gifts, gave hugs, even sat with me for awhile while we waited for news of improvement. But no one really “got it.” No one understood the level of grief both Dan and I were experiencing and that was incredibly isolating all in itself.
I don’t write all of this to ask for your sympathy. I write all of this to reach out to the mom or dad who is just beginning this road. Who is sitting in the NICU right now with a brand new, yet broken baby. And you’re not really sure why or how you got there. We get it. We feel your pain and intense grief right along with you. We know what it’s like to not have any idea if tomorrow will come with good news….or the dreaded bad news. We know and understand what it’s like to feel the fear of NOT taking your baby home and what in the world you’re going to do with that beautiful nursery you spent months preparing and bragging to your friends about. Can your heart even handle this? Will it just explode right there in your chest? I worried mine was going to rupture anyway with the amount of blood loss I’d experienced. Couple that with a heartbreak so deep over how Hudsyn came into the world, I was certain it would happen.
Somehow, though, between the intense emotions, the non-stop barrage of medical terminology and brief time periods for napping, I began looking online for others who were “like us.” There had to be someone else out there who was going through this that I could talk to…or maybe communicate with on social media. My gut was right…I did find that tribe. Some of them are still a huge part of our lives and some of them have faded away for various reasons…much like normal friendships experience. And in those first few years of reaching out, I learned we were far from alone. In fact, there’s a whole WORLD of other mommas and daddies who have gone through this. Isolation started to fade a bit.
As Hudsyn progressed and we began lots of therapy (for her and for us), life started creating its own “new normal.” We were told this would happen. The interactions weren’t as intense and even when things changed suddenly or she went back to inpatient for a new illness, we were learning how to handle this new world. I remember her 2nd inpatient stay for a UTI, and I was being instructed by the intake nurse on the process and what would happen next…I smiled politely and said, “I’m aware, we’ve been here before.” For whatever reason, that little bit of confidence helped me step up and manage her care from a more powerful perspective rather than one of helplessness. I knew where everything was…I knew her team, her care plan and I knew what we needed to do to get back home again. I could DO this…we could do this.
Life went along like that for quite some time. Isolation followed along of course – anytime we had a new diagnosis (like her hip dysplasia or starting the Keto Diet for her seizures), it reared its ugly head. The grieving process started all over again and we had to process those new dips in the roller coaster with each other and our family. It still shows up now…like last spring when Dan’s brother and sister invited us to join their families in Mexico for a nice, long family vacation. For them, it’s a no brainer…you just hop on a plane and go swim in the ocean for a week. Their kids would love it and have a wonderful time. For us – we immediately think: “Let’s see, there’s no wheelchair accessability where they’re staying – how will we get Hudsyn to and from the beach or even into the room we’d be staying in?” Or “What if she has a medical emergency while we’re out of the country…what hospitals and clinics are nearby?” Or “There’s no nurse to travel with us, so if she has a long week of no sleep (common occurrence) – we’ll just be taking shifts caring for her in the room while everyone else enjoys their vacation.”
And there it is – Isolation…that long-lost shadow that peaked its head into our hospital room on day one…BACK again to say hello. It’s like a punch in the gut, coupled with disappointment, sadness and the oh so familiar thought of, “I wish she didn’t have special needs.”
Isolation is always there. My best tips for keeping it in check, and not allowing it to completely overrun your life, is to take small, baby steps to build your tribe and support system over time:
- Family – In the special needs club, sometimes we have supportive families and sometimes we don’t. My family is incredibly involved with Hudsyn’s day-to-day and week-to-week care. They have been since day one. My dad retired that first year and became our live-in nanny for awhile as I learned how to go back to work full time and Dan needed the extra support while learning to care for a complex baby. My sister and her husband are at our house weekly, helping out in a variety of capacities when we need it. But, Dan’s family isn’t really involved. Although, they have watched Hudsyn (and Damek) a handful of times in the last eight years, they really haven’t shown the interest in helping us out like my family. I do not fault Dan’s family for rarely wanting to be involved (they have their own kids to care for, of course). So instead of making it a big deal, we focus on the gratitude and extreme gifts my family has so lovingly bestowed upon us.
- Friends -Not everyone has a supportive family. Sometimes this is due to strained relationships already existing before children were born. But sometimes, parents don’t have family that live locally to them after a diagnosis…in the same state or even in the same country. This type of Isolation is incredibly overwhelming. You can turn to friends. Some of our friends really enjoy giving us a break – and some of them are still fearful to hold or touch our daughter. All of this is ok. I do not punish or ignore the friends who are scared of her. You just have to find the tribe that works best for you. And this can take considerable time. Be patient as you seek this out and ask for support. Reward these friends. Dote on them. Tell them how appreciative you are when they do come over and dive into your world without complaint. These friends are keepers and truly those (in my opinion) who are living the most faithful existence. Sometimes you can also reach out to graduate nurses through a local college or university who want some experience with in-home care. This is a great way to build some support and benefit them (if you have a little extra money you can throw their way). SIDE NOTE: If you do this – I highly recommend using Care.com for payroll so you’re following all state and local laws regarding in-home staff. Many times, Medicaid waiver programs in your state will also pay for full-time in-home care if your child qualifies.
- Faith – It wasn’t hard reconnecting to the church after her birth. We had a ton of support from the faith family we had already been part of before Hudsyn was born. But as she got older (and bigger), we felt more physically removed. Why? Well, many churches aren’t designed to handle Hudsyn’s care if we wanted to drop her off at the childrens’ program. So, we just brought her to the sanctuary with us for a few years. She loved that – the music, the message, etc. But if she had a diaper or needed a break from the experience, there were very few places to be able to take her to get this done. Eventually, our accessible van became that place. But then, that meant Dan (or I) had to physically leave the church and miss the full message being given. Now, we just try to get our prayer and meditation in each week through podcasts, online programs or the like. Hello, Isolation again! There’s a huge need in most spiritual communities to provide more support and understanding for special needs families. Programs like SOAR, iCare Mass, and the Church 4 Every Child ministry network are making great strides to get this done locally. Many churches are now starting to offer free respite programs and childrens messages, specifically for those with Special Needs. Seek this out in your community and if it doesn’t exist, I’m more than happy to have your clergy/ministry talk to the ones here about how they’ve done it. It is possible and yes, YOU can make a difference in your church community.
You see, this isn’t a post about how to get rid of Isolation. I’m afraid that is likely an impossibility. Getting rid of Isolation would be comparable to getting rid of Fear, or even, Love. These are all emotions that are PART of life regardless of the special needs journey. There was a time when I wished I could stop feeling so much…to keep things black and white where life was “safe,” and decisions were easy. I’m sure even as you read this, you’re thinking…well that’s ridiculous. And it is. Because, even though our life isn’t typical, it’s still LIFE. This post is more about how to process Isolation, move through it and then create an environment that you can fall back into with peace, love and hope. That’s what our whole message is about on this site and in our YouTube channel! I wish I could say I had a magic wand that “made everything better.” But then, living in that type of mental state is unhealthy because that’s NOT what’s happening. And it’s not healthy to constantly wish Hudsyn was different. I don’t want her hearing that message from me or anyone else, either. Would you say that to your typical child if they weren’t a star athlete or didn’t have the hair color you had wanted them to have? Of course, you wouldn’t. She arrived how God intended and she’s our gift. Yes, I said, our GIFT. It took a lot of processing, therapy and hardcore work to get to that level of thinking, but it’s important you really read and take to heart what I’m writing here.
So, when you’re ready…reach out to us. We’re several years down this path and can provide some level of hope and insight that might just be your next breath of fresh air (Lord knows we get few of those that first year). You can do this, too.
You are Loved and you are amazing!
