Tuesday, July 23, 2013

What They Don't Tell You...

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.

29 comments:

  1. Although my son will be 20 in 2 weeks I completely understand how it feels.. Reading this was like reading my life in a nut shell... Very well said and I can tell you it does get easier but you will always feel the loss and sadness of what if... You are an amazing momma and I loved reading your feelings...

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    1. thank you so much for your comment! it's nice knowing I'm not alone, even though being in this 'club' is devastating

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  2. OMG - hit the nail on the head! I am only 17 months into this journey but we knew what was coming since he was born at 27 weeks. Sort of. No one really ever knows. But I related to every single word. Thank you for writing this! http://livingwithsuperman.com

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    1. thanks for your reply! I'm glad that I can speak honestly and have people relate.

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  3. Some of this really rang true with me. Well written and honestly it does get easier or maybe it's just that you have become so adept at juggling so so much that you don't notice how hard it is. My son is now 15 and looking back, I just cannot believe where the time has gone. Keep smiling.

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    1. thank you, Lyndylou! sometimes smiling, even through tears, is what gets me through the days that there seems to be nothing to smile about

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  4. I felt like I was reading my life. U couldn't of daid it any better. True, it gets easier in so many ways, and u end up not researching/asking for answers unless its a horrific new develop that just breaks ur heart. My daughter just turned 17. I was always afraid I would be so burned out by the time she reached her teen years, but too my surprise im still going strong, or so I like to think. As my daughter gets older, every minute w her means so much more to me, I just want to spend as much time w her as I can because I know that dreadful day is coming. Very well said! Thank u for this.

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    1. thank you for your response! I'm glad to be in the company of other strong moms like you!

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  5. The friendship part...so true. I try not to be heartbroken about it but it definitely hurts sometimes. Friends that we've had for over a decade just vanished.

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    1. thank you, Rob... it's one part that, at first, hurt the most. now I've learned to look at it as their loss... I feel like anyone who chooses to not get to know my daughter is missing out on an amazing light

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  6. What a beautifully written piece. Thank you for this.

    -Brigid
    www.thepinkrollercoaster.com

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    1. thank you for your kind words! I'm a slacker at responding... lol

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  7. My daughter's 15 and this is so much my life. Thank you for putting in words what I couldn't. Hang in there "mom" you are doing an AWESOME job.

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    1. thank you, Elizabeth. I sometimes feel like my words come out as a big messy jumble of nonsense... thank you!

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  8. Priceless reading for all of us. Well written x

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  9. Funny...we all seem to have a secret little bond, don't we? We're at an interesting place now. As I read about your little daughter and the comments from parents of teens, I feel like I'm floundering in uncharted waters somewhere between your island and theirs......I had to buy bras for my 10 year old! :O

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    1. thanks for reading! I certainly feel like moms like us have a unique bond! one that is surely looked at with some puzzlement from other moms lol

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  10. am a mom of a 12 yr old boy who we adopted from foster care. we got him as a foster child at 9 mos and adopted at 4 yrs for yrs he has had behavior issues and has had a total of 7 different mental disorders until july 2012 what changed was we had a complete evalation done and found out he has aspbergers ( mild autism) along with several learning disabilities. i have learned to take the good days allong with the bad cause we have more bad days then good. i love your story cause it is how my life haa been since this boy came into my life 11 and a half yrs ago.

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    1. thanks for reading! I admire your strength and love for sorting a child with any kind of special needs! it couldn't have been easy!

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  11. Sad that we all share this in common, but encouraging that we are somewhat united.

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    1. thanks for reading, Ben.
      it really is comforting, no matter how heartbroken we might be at any point, to know that there are others out there feeling it

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  12. This is well written

    My son is now 34 and has Down Syndrome. Three of my bests friends and I were all pregnant at the same time and gave birth within a two month time frame. I was the only one who had a child with a disability and that really hurt. Not that I wanted their children to have anything wrong, and my friends were wonderful, but I felt that I was not part of their world. It was really difficult but as Mike got older, he became more important as a person and his disability somewhat slipped into the background. I realize that Mike was not medically fragile, just developmentally delayed - I never thought I'd put it that way! I have made the most wonderful life time friends along this journey and met some of the greatest educators, along with courageous Special Olympics athletes. My life has been very different than I expected, but blessed none the less.






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    1. thanks for responding, Pam! I was pregnant at the same time as my best friend, and I vividly recall a conversation with her about a shadow they found on her baby's brain during one of her ultrasounds... Her daughter, thankfully, turned out healthy and beautiful. I can understand those feelings you talk about... we'd never wish this on someone or their child, but sometimes it's like salt in an open wound at first...

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  13. thank you all so much for reading, and I love getting comments ( it's that whole i-have-no-life-outside-of-social-media thing)... this blog has been great for me to just vent and be real so I'm so glad that others are reading it and relating to us!

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  14. Thank you for this. I know it took much courage to press the "publish" button. So many of us feel a loneliness that's unbearable. if the hardest thing you will ever do in your life is being a mom, then we are the Mt.Everest climbers of motherhood. Thank you!
    Www.autumncalvert.com

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    1. thanks for your kind words! it has been very difficult to be so open and honest, and the things I've written so far barely scratch the surface of the thoughts in my head...

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  15. Very well put and so incredibly accurate, that I have nothing to comment that either embellish or contradict what you have written. Thank you for sharing this. TheFireBreathingDuck.com. missmiras.blogspot.com

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    1. thanks so much for reading and responding!

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