When you become a parent, there are so many things people will tell you- what brand of diapers is the best, who's the best pediatrician in town, why you should or shouldn't vaccinate, what the best car seat is, how to get them to sleep through the night after just a few days, how to potty train early, when to take them to the doctor and when not to, what detergent to wash their tiny clothes in... from family and friends to complete strangers, people everywhere will give you (sometimes unwarranted) advice about your new life as Mom.
I heard it all after I had London. Some was appreciated and some was not. Some was great advice and some was absolutely ludicrous. But NONE of it applied solely to my becoming a 'special needs mom' when London was diagnosed at about 3 months old. Suddenly nobody had any advice to give. Maybe they were scared to offend me at that point, maybe they understood that their little tidbits of good intention had no merit in my new world, or maybe they simply had nothing to say, but no matter the reason, I was no longer bombarded with "oh just FYI..." or "when my kids were babies..." or even "recent medical studies show that..."
I'll admit, it was kind of nice. I knew that I knew (know!) London better than anybody else in the world knows her. I carried her in my belly, I'm with her almost 24/7, I take her to all her appointments... So I never really felt like I needed much advice. But these last few months I have been thinking of all the things I wish I had known 5 years ago when our journey was just beginning. I wish I had had a little insight into what my life would be like today. The things people don't tell you when you become a special needs mom...
They don't tell you that after your child is diagnosed (or after you start seeing her seize, or notice that her development is lacking) that suddenly the only things that matter are the things that pertain to your child. Your favorite pastimes from before will no longer hold your interest. You'll scour the internet, the library, and your child's specialist's brains for information about what's going on. You might find helpful articles or studies, you might not. They just don't tell you that you'll become obsessed. Questions about your child's medications, therapy, insurance, diagnosis, and symptoms will keep you up at night.
But that's not the only thing that will keep you up. Every single noise, every single movement, every single delayed breath will have you running to the crib to check on them. I know this is true to an extent with any new parent, but when you have a medically fragile child the paranoia is multiplied by about a bazillion. You'll look like crap most days because your haven't slept, you either rarely remember to eat or you eat all the time because you're trying to please some part of your psyche that feels rejected and inadequate. You'll be scared to get in the shower because you're convinced that it will be in those two and a half minutes that your child will die alone, scared, and crying for you.
You'll sometimes feel homicidal... or suicidal. Most the time you'll feel nothing at all. You'll become numb to sleepless nights, the fact that the house is a total mess, and that you even once had a sex life. You're marriage might suffer. Your marriage very will might END because of the stress that will be put on it. In moments of clarity, you may look at it and say it's worth fighting for- even if fighting means leaving your child with a sitter and having a date night that you can't fully enjoy because you're too worried about your child and you are constantly checking your phone because now would be the time that your child dies, in the care of someone else, crying for you. After all, it didn't happen when you showered that morning...
In some cases, your marriage might become stronger. You might grow closer to spouse now that you've come to understand what's really important in life...
Sometimes you'll be able to get a lot accomplished in a day, and sometimes just getting through the day without crying is an accomplishment. When you're up to bat, and the bases are loaded, and you're doing what needs to be done for you child, you might find that emotions take a backseat so you can focus on what HAS to be done. But when you're home alone, and the house is quiet, you'll cry. Or maybe when you pass by that dance studio in your neighborhood and see a dozen girls in tutus practicing their arabesques you'll have to pull the car over because you just can't see through the tears.
You'll fantasize about what you thought your life was supposed to be... and then you'll look around at what your life is... There will be days when you feel cheated out of the dreams that so many other moms are living. Dreams that you really didn't know you had until they were gone. It's part of coming to learn what's really important in life. Having healthy, able-bodied children who can eventually become independent. Watching your child figure things out for themselves. Seeing them complete a new task without assistance. As difficult as it might be to the typical mom (and I know this, because I'm a 'typical' mom as well) for our kids to grow up and not need us, it's more difficult to know that they'll need us forever. Trust me on this. Then there's the whole issue of who's going to be there to care for your child if they outlive you. It's enough to cause a mental breakdown all on it's own... To have thoughts that it really might be best to outlive your child is something that only fellow special needs moms will understand.
You'll learn things that you really don't want to know. How to change feeding tubes... hell, how to even USE a feeding tube... How to administer injections... The names of so many medications you're halfway to becoming a freakin' pharmacist... Things to look for on an EEG... There will be countless things you'll learn throughout your new life that you'll never have even thought about before.
You'll lose friends. Some because they are jerks. Some
because they just don't know how to treat your and child and so they
slowly slip out of your life... so slowly in fact, that you might not
realize they're gone until years later. Some might come back, others
will be gone for good. Sure, there's the occasional "Happy Birthday"
over Facebook from
those who used to call you all the time to go to dinners, movies,
parties... but you really can't consider them your friends anymore
because, let's face it, they no longer know anything about you.
If you're lucky, you'll find a whole new family of other special needs moms. This will most likely happen online, as the internet and social media will become one of your only connections to the world outside your bubble of insanity. These woman won't always know what you're going through, but they'll always be standing by with what is truly needed: not advice, but comfort. Of course, they'll help you navigate through your stormy waters, but more importantly they won't be afraid to just talk to you. They'll understand that you have a unique situation but they'll also still treat you like you are your own person. They'll know that, deep deep deep down, you still have ambitions, goals, passions, and feelings. They'll be some of the ones to see you through your darkest days. This family, as well as your blood family, will become the only group of people that you truly trust.
Some days, you will literally worry yourself sick. Your back is going to take a beating. You're probably going to put your physical health on the backburner because: 1) You can't afford to do anything about it when you are drowning under the medical debt of your child. 2) You really don't realize that anything is wrong until you, God willing, get a small break and take inventory of body. 3) Ain't nobody got time for that.
Things might get easier as your child grows. Then again, they might get a hell of a lot harder. Things will change- seizures will change, medications will change, therapies will change, doctors will change... and you'll feel like, with each change, that you're starting all over again. Back to square one. And it will be so hard.You'll feel frustrated all the time. You'll feel guilt (more on that in a different post)... You'll feel like an idiot sometimes because you might not be able to keep up with the flow of conversation in the ER when you take your child in for a reason you can't even define (as if being able to understand what is basically a foreign language is a realistic expectation... but you'll still feel that way)
Being a special needs mom is often the loneliest job in the whole world. You'll go for such long periods of time not speaking to an adult that when you do finally get some peer interaction, you're going to be socially awkward. You'll lost the capability to converse about anything other than your child. You'll listen to the conversation between what few friends you have left as you sit around the table at The Olive Garden and you'll think, 'this is the stuff that's important to you guys!?' You won't care who won the heart of The Bachelor or that coveted mirror ball trophy. You can't be bothered with Housewives, Honey Boo Boo, or any of the Kardashians. You might not know what's happening in other countries because you haven't picked up a newspaper or watched CNN for who knows how long. And all this, will make you a bit of a shut-in.
People will offer to help you, God bless them, and you'll kindly decline those offers 99% of the time. It's not because you won't need help, or want help, it's just because you won't be able to relax with someone else caring for your child. You'll have to teach them how to care for your child- how to feed them, how to hold them properly, what things not to do, and what to do in case of a seizure (because believe it or not, it WON'T always be call 911). But you'll appreciate the offer, nonetheless.
Even those friends who have stuck by you after it was all said and done will stop inviting you to hang out. It's not because they don't still love you, it's probably because you never come when they do invite you. It's just too much. We're expected to care for this child, keep up on housework, keep the fire going in the bedroom, in some cases care for our other kids, in some cases hold down a job outside of the home, juggle appointments, therapies, medication refills, AND socialize outside of the nurses and doctors we have come to know as friends????? That's a lot to ask. Try to do it. TRY. But don't feel ashamed if you can't.
Some days are harder than others, as with any parent. But most days are harder than that of the average mom. True, I didn't know all this stuff before London was diagnosed, but I also didn't have such an understanding of true love. So no matter the bad, scary, stressful things that come along with this new life, remember: there is good too.