There are some great resources out there for your little ones, but there just aren't that many sources of comfort for you-- the parents. The unexpected new life Jay and I began living with Nolan was unbelievably difficult to navigate emotionally. Fortunately, we had the Lord (or the Lord had us). He has had His hands wrapped around Nolan since birth and we've felt His presence and peace ever since. We've also been lucky to have fantastic family and friends to support us along the way, too (to literally carry us through surgeries and close calls).
Still, I had to learn a lot of things on my own. Jay had to get back to work once we got home from the NICU and there I was-- the sole provider of Nolan's emotional, physical and spiritual needs in addition to having to become a SPECIAL NEEDS PARENT. Why is that so different? I know that every new mother faces a huge learning curve and that we all face adversity, but yeah... It is different. Here's what I wish someone would have told me when Nolan was born with special needs:
1. You must grieve.
I know to someone who hasn't walked this road before that that statement might seem cruel since you haven't "lost your child". Well, you did lose something, though. You lost your hopes and dreams briefly and within a few hours (likely) had to completely redefine your family's life! Jay and I were told all of the things that were "wrong" with Nolan first. We were bombarded by closed doors and lists of no's when we had thought our little bundle would be born to a world of yes's and unlimited possibilities. So, we had to grieve that. We both grieved it differently, also, and I'm not sure exactly when it happened. I guarantee you we didn't grieve at the same time or about the exact same things, but our families also grieved. It was just the shedding of one ideal and the adoption of a new one-- the health and happiness of our unique child.
Not only do you have to assume a new set of dreams for your family-- attainable ones as you learn exactly what your little one will be capable of in the years ahead-- you have to navigate intense isolation! I was in a lovely group of expectant mothers-- my "birth group". Our little ones were all going to be born the first week of March. We were all first time moms. We were all newly married and possessed a similar worldview. In short? I had an instant network of friends for my little one once he burst on to the scene. Or so I thought. You know, we had planned on baby/mommy swim classes. We had planned on park dates and book clubs.
Nolan came on the 18th of February-- so none of my "total best friends" had a baby anyways. Isolation. Then as some of them came knocking in our tiny NICU room (a very small amount of them), I saw them shrug off the terror of "this won't happen to ME, right God?" as they awkwardly visited with the family they thought they knew. Isolation.
"Well, once you guys get home, just call me and we'll take them to the pool", I remember them saying.
"Um...Nolan breathes through a tracheostomy, so we can't put him in pools. Also, he couldn't wear his hearing aid in the water and I'm not sure if his feeding tube is safe to be submerged." I replied with a tear.
By the time we did get home, that birth group consisted of now successful first time mothers with scheduled play dates and perfectly healthy, breast-feeding chubs.
It's going to happen. You definitely will still get visits from old friends and you definitely will feel the love, support and prayers of many, but you will also (likely) have no immediate family or close friends walking your specific path. It will be rough as you adjust, but you'll survive it!
I've told everyone this: the first few months, I wasn't allowed to just snuggle up to Nolan, breastfeed and bond. In fact, Nolan's cleft palate and tracheostomy meant that I had to exclusively pump 8-10x a day and administer G-Tube pump feeds of my milk to him, taking care to not wake him, as he was likely recovering from a procedure the day before. I was a nurse first, mother second. I learned his specific hardware. I became a champion of suctioning and cleaning a tracheostomy and listening for a dying hearing aid processor...administering medicines and applying special ointments...stretching inactive muscles of a 3 week old and massaging specific places on his face as a physical and occupational therapist in training. That was my day-- my new normal. I didn't have time for myself, and I didn't have time for my husband. All I knew was a strict schedule of care that Nolan needed to receive-- and that's how I showed him that I loved him. It's all I could do for that first little chunk of time.
You will not only fully understand the medical jargon surrounding your child, the resources available to him, the specific team of doctors and therapists (and how to reach them with two different extension numbers all hours of the day), but you will also (in no time at all) arm yourself with your family's rights. You will understand your legal rights and be prepared to remind anyone else of them if they are denying your family care or services. You will study your state's ISFP laws and learn where your specific family fits into that. You will learn to advocate for your child's specific special circumstances so that they don't receive a one-size-fits-all medical care or education! It seems daunting, but it just sort of happens. I didn't crouch over a computer with twelve Red Bulls and turn into a special needs advocate overnight. Loving your unbelievably IMPORTANT and VALUABLE child means that your momma bear instincts will be of superhuman proportions. No one will but your baby in the corner!!
*I wish someone could have encouraged me about educating myself and constantly checking in with hospital administrators, insurance companies and case managers to make sure I was up to date on Nolan's treatments, guys. You've got to do it. Knowledge is power...and it's also peace of mind! <3
I didn't really come to terms with and find joy in my son's genetic syndrome and his journey until I surrounded myself with other families of TCS. Guys, there are FB groups for nearly all genetic syndromes-- support groups on steroids, basically. Once I found the greater TCS community, I found groups of mom friends again! I found people who could answer my questions and help me advocate for Nolan better. I saw other children making their own unique milestones to encourage me on tough days. I saw children struggling more than Nolan and families grieving over lost littles to constantly remind me that it can always be worse and that out there right now, someone is struggling much more than us. Constant perspective, fellowship, and encouragement came from this community. It's invaluable. I cannot wait to show Nolan teens just like him when/if he's having a bad day. He's not alone. We're not alone. You're not alone. Network! Use hashtags that are associated with special needs and your special little one to find even more families!
Outside of Facebook, I love Instagram for this purpose. I took my profile off of private specifically because I wanted to be a resource for others and because I wanted to be able to be found (it's scary, but I haven't had a troll say something harmful about Nolan yet and I'm trusting in God that that will continue as the norm). I use the Treacher Collins hashtag sometimes...or cleft palate...or whatever specific surgery Nolan is having done...or cute hashtags I've picked up on like "tubiekids" or "trachkid" and I've made a large handful of new friends as moms have found Nolan's images and realized they are not alone! Empower yourself and you can empower others.
This one took me a long time to really believe, but the truth of being the parent of a child with special needs is that you are the only one who really can KNOW what is in your child's best interest. Therapists and doctors have an excellent idea, though, as that is there job. You have to go through the doors that they direct you to, but there are times where you will need to say no! At about the 6 month point, I figured this out for Nolan, and our lives really took off. Nolan really settled into a routine, gained some weight and hit milestones when I slowed down and simplified our schedule.
Nolan had a GI doctor, an ENT, his PCP, his PCP's case manager, his OT, his PT AND his deaf and hard of hearing specialist. Long story short, they all wanted to see him multiple times a month. It just wasn't possible, and I had to learn to put my foot down. If NOLAN hasn't changed in any way since the last visit and is perfectly healthy, my rule of thumb now is that I don't schedule multiple appointments. If his GI's office calls to schedule, I now ask "what is he needing to come in for". They typically have to actually check on that, and come back with "his weight-- general check-up" to which I then give them his most recent weight and assure them that his feeding tube is working properly. Instead of driving 80 miles, I'm learning to really understand an appointment ahead of time-- we've REALLY wasted our time and exhausted Nolan before by literally getting weighed and checked in on for a grand total of 4 hours.
Recently, Nolan needed a sedated CT scan before his next procedure. We got it done. Then we got a call that they didn't mean to do it on such an early date and needed to do another one a few days before his surgery. Yeah... I said "no" and faxed them the images from two weeks prior myself (cutting out the middle man of our PCP's office and the time it might take to reach them with what I needed). The surgeon said no, too. When I told him about that, he said it was ridiculous. I'm learning that my instincts are right and that I have the RIGHT to voice them!!
You know, a few nights ago I was sitting with my in-laws at dinner. They love Nolan to pieces. He was sitting there merely 8 days after a major surgery on his jaw and ACTUALLY successfully eating tiny chopped up pieces of chicken with the family-- in a high chair-- babbling, BREATHING and radiantly alive. I was beaming. Often I'm overwhelmed by how far he's really come. I looked around, though. No one seemed all that impressed with his chicken nibbling. Every small triumph is noticed by Jay and I. They have made us cry. They have made us happy dance through the living room. They have made us give the largest thanks straight up to heaven, but other people might not get it. Even people that do love Nolan and are involved in his life might not be on the same wavelength with you. It's ok. We KNOW. Nolan KNOWS. God knows.
With the same token, people might not get how scary a situation is...or how stressful it is. They might laugh off your "irrational fears" not understanding at all what an ambulance ride from your home feels like...or a major red flag. That's ok, too. You can't let that irritate you.
If you want to, take the time to share why four crumbled chicken pieces are so exciting to you. Share why it's no laughing matter that your little fell on the playground or had their insurance decline some extra medical equipment. People can't read your mind, and haven't spend any actual time in your shoes, so communicate your extreme joy or sadness to others and you will feel SO MUCH better. Give grace to others, too. They might just really not get it.
They might say things that are offensive and not realize it, either. Kids might blurt "What's wrong with that kid" at the store. Without anger, sarcasm or tears (guilty of all of it) take the time to educate a small child...or a bratty pre-teen. You are a lawyer, nurse, advocate, important community member and parent of the coolest kid alive, after all, remember? You can do this!! They just don't get it.
Adults might ask "Is he eating chocolate at 9AM?" and you can take the time to explain that he used to not be able to safely eat anything orally or SPEAK and that today he ASKED for chocolate after a long therapy appointment and safely sucked on a piece as you brought him to the car. You can respond. They just don't get it!!
You know, in meeting with and learning about likely thousands of special needs families, I have heard of INSPIRATIONAL and SUCCESSFUL ones, and I have also heard horror stories. I have cried over kids that aren't being advocated for or given the very best shot. I believe that no matter what your kid is struggling with... no matter what cards your family has been dealt...you can experience joy and you can overcome! If you felt that baby kicking inside you and decided "I love this baby and will do anything for it", you CHOSE to be the kind of parent that will raise a child in LOVE and SAFETY. You either choose to equip your little with the tools to succeed or you don't. I'm guessing that everyone that is reading this, whether your child has special needs or not, has chosen LOVE and actively pursued this journey of parenthood. My favorite quote is "God doesn't call the EQUIPPED; he EQUIPS the called". I know that I was called to special needs parenting because I told Jay OUT LOUD that I wished God would send me those babies that others don't want because I knew that I could love them and give them a great life. Then Nolan was born! I'm sure I'm not alone here.
Sure enough, I've been equipped every step of the way. Thank God!
At a certain point, shortly after taking Nolan home from the NICU, I decided that Nolan was going to be Nolan...not "Nolan the little kid with Treacher Collins syndrome, special needs and stuff I need to inform other people about". I realized quickly that the language I use to speak about my little boy is what is going to shape his sense of self. If he hears me say to a doctor "I just wish you could help his eye look a little more normal so that he isn't teased...I mean he has enough stuff stacked up against him" that it would be beyond detrimental. To remedy that, my statement would be "I just hope his eye can close all the way at some point so that it isn't so light sensitive and has better function for Nolan. Hopefully we can do that in the future. I just don't want Nolan to feel anything but normal because that's what he is. He's stinkin' handsome, and I hope he knows that-- with or without a lower eyelid".
I want Nolan to be defined by all that he has overcome, not by the things he might still need to work towards. I want him to understand that there is no such thing as a disability because he is not UNABLE to do ANYTHING if he puts his mind to it and that his dad and I will be there to insure that every step of the way. That he is Nolan. That he has brown hair, brown eyes, a hilarious machine-gun chuckle, awesome quirky dance moves and a love of chocolate. That God made him for an amazingly unique purpose and that there isn't a person alive who is PERFECT. We are all flawed. We are all uniquely created and capable of great things. I'd love for him to say "Hi, I'm Nolan. I'm 4. I like Jake and the Neverland Pirates and running through wide open spaces" instead of "Hi, I'm Nolan. I'm 4 and I have Treacher Collins. It's a pretty scary condition and I still have a hard time hearing, eating and breathing sometimes. I've had 9 major surgeries, though, and don't want you to be freaked out because I can do anything I put my mind to".
That may come later, but I'm learning that this is my responsibility TODAY. I wish someone had showed me that when I was in the NICU googling Treacher Collins and getting wrapped in a world of hopelessness and scary hypothetical situations!!!
Your family is going to have an amazing story to tell someday. More importantly, your kid is going to learn all about their journey at some point and (likely) will be permanently transformed by that knowledge. In the interim, write down every detail! Take way too many pictures. Find joy in all the moments you are experiencing and please realize you are not alone and that what you are doing is AMAZING. No one is on your specific journey, and you were given the absolute coolest kiddo. Keep up the good work!!!!!