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.

A Little Heartbreak...

As always, it's been a while since I've been on here. And as always, I know I've been busy but I can't pinpoint with exactly what. It seems like I am constantly do things that need to be done, but at the end of the day, I feel like I've accomplished absolutely nothing.

For the past several months now I haven't felt like my normal 'self ' ... I've been overly tired, but unable to sleep. I've been moody, but with no apparent cause. I've had migraines, but never had them in my life before. I had been working out and making healthier food choices and I was feeling good but then all of the sudden I completely lost all motivation. All I want to do is sleep and eat. I find myself falling asleep if I sit down for even a minute or two. But even when I allow that to happen, or even when I get an adequate amount of sleep one night, I wake up feeling no more rested than before. I have just been in a slump.

So back in the end of May, I found out I was pregnant. I was really excited! I felt like I had a little pep in my step and I smiled every time I thought of sewing a new crib quilt, choosing a name, or digging out the kids' old baby clothes... I really was thrilled, regardless of how 'ready' we were or were not. I figure, there really IS no 'ready'. New babies come along, families and finances adjust and things work out just how they're supposed to. Regardless of the excitement I felt, there was a small voice in the back of my head saying it was too good to be true. I had taken a pregnancy test one morning and got that positive result then the next evening I got a negative. I figured it had to do with the time of day that I took those tests, because my body was SCREAMING that I was pregnant! I had all my normal signs- weird taste in my mouth, fatigue (although I was already experiencing this, as I said above), I could smell every spice in the cupboard... along with the more common things a woman feels during a pregnancy. Still, this voice nagged at me. I felt like it just wasn't real. Something wasn't right. And that voice was correct. Just three days after testing positive, I had a very early miscarriage. They call it a chemical pregnancy. As if it's just a fluke. Chemical pregnancy?? Like it's not even a valid concern or loss... My doctor told me that it happens with about 20% of conceptions- basically the egg is fertilized but never attaches to the wall of the uterus. She said that often times, it's the body's way of dealing with something that isn't going to 'work out'- like a chromosomal abnormality. Because it happens so early on, most women don't even know it happens. It's why many doctors discourage early testing- because I guess they assume what you don't know can't hurt you.

It does hurt. Even though there wasn't even a heartbeat yet, it hurts because of what it was supposed to be... it was supposed to be a brand new life. It was supposed to be one more little light in our world. It was supposed to be a surprise, because I was already pretty much decided on not finding out the sex of the baby. It was supposed to be my third baby.

I feel like I'm the only one hurting. Maybe because it was my body that did this. Maybe because I just think of it in a totally different way than anyone I told... I don't know. I feel like everyone had an attitude of 'oh well' while I was truly, genuinely sad about it.

But life moves on whether you're sad or happy.

I helped my sister with her wedding plans. I did my day-to-day stuff. We watched my husband's cousin graduate high school. We spent time as a family at the zoo...

On June 29th, my sister married a wonderful man in my parent's backyard. It was beautiful! We had all of my family together and we had extended family in from Colorado. It was a hot day, but a gorgeous day. After the festivities, as it got late, my husband decided to take London home while Kannon and I stayed to play and help clean up. He called me about 45 minutes later...

Our sweet Louis dog was dead.

He was tied up in the backyard and had knocked his water dish over and the heat was just too much. So we buried him in the backyard the next day and planted a tree there with him... We were all a little heartbroken. I broke the news to Kannon that very night, but I've since had to break it to him several more times, because he keeps asking where Louis is...

So I'm still not feeling like my normal 'self '... I lost what was supposed to be a brand new life... and we're one less pet in our family...

That's where we're at, I guess.

Welcome, Summer. Go easy on us.

For anyone who has ever watched London for an extended period of time (ok, so that's only family), they know that she can sometimes just be fussy. All. Day. Long. So like every year when school gets out for the summer, I'm a little worried about losing my sanity on these long hot days while Thomas is at work. There are days that she cries and whines and fusses all day unless I'm holding her. I wish I could just hold her all day, every day, but it's just not realistic. Moms have other tasks to accomplish, right ladies? And let's not forget trying to get a little mom time in during the day- reading for 20 minutes, daily exercise, or even just standing under the hot shower for 2 extra minutes. I also have Kannon to think about. So, obviously, my time can't be devoted solely to sitting on the couch with London in my lap.

So far, that's exactly what she seems to want. Unless we're out and about, she just wants to be held. I can neither go out with them every single day or keep a firm grasp on the few remaining ounces of sanity that I have left if I have to sit on that freaking couch all day. I sure love her, but I also love having clean underwear...

We got a zoo pass this year and we've already gone enough times to pay for it in the past two months. I can't take them swimming by myself (I'm sure you can guess why)... London doesn't do too well in the extreme heat so going for walks are sometimes out of the question... The grocery store is losing its appeal to all of us, and the mall just makes me want to spend money we don't have... So I guess I'm feeling a little stuck lately. Summer just started and I think we're all already bored. Pair boredom with the fact that I just haven't felt like myself for the past several months and we're all a little ornery and short-tempered some days.

This is not the post I had planned on putting on the blog next, but as I've been crazy busy with other things, I haven't had time (or peace and quiet!) to sit down and tackle everything I had in mind for the blog yet. Hopefully soon, though! Thanks for loving London!

~Danielle

The Baby Bug

So it's probably no secret to those close to me that I'd like to have another baby... and lately it seems like pregnant women are following me. Through the grocery store, next to me at the gas station, in restaurants and the mall... They seem to point their bellies at me, casually stroking their unborn or resting their hands just above those bumps of teeny tiny wiggly little beings... Ok, maybe I'm exaggerating a little, but seriously, today I went to lunch with one of my oldest and dearest friends and literally in the time we were there, which was maybe 25 minutes, 4 pregnant women came in; probably following the cravings of pregnancy to the nearest Subway. And this is not a busy Subway. We laughed about having to either be pregnant or geriatric to eat there today.

And it's not just in my real life that this is happening. I swear every day for the past 6 months I get on Facebook and see that someone had their baby the previous night, or just announced that they're expecting- not to mention those who are in the middle of that long road to parenthood for either the first time or possibly the fifth... Just the other day I logged on to see that a friend recently discovered that she's having twins. (Did I mention I'd LOVE to have twins?? Call me crazy...) She's a gorgeous mama- patient and loving and genuine. These two babies will be her 5th and 6th and no doubt just as beautiful as her others.

Every time someone announces a pregnancy, I send up a few prayers (ok, more than a few, I might be a little obsessed with it) that their babies will be strong and healthy and able-bodied. It doesn't matter if the mom-to-be is my sister, an old friend, or someone I barely spoke to from middle school- it's always the same feeling that goes through me... Maybe some surprise, then undoubtedly a happiness that comes only with the news of a new life, some jealousy (I won't lie!), and then the hope that the new little bundle of cells with grow and develop just the way it should.

Of course I'm happy when someone is happily sharing news of a new addition to their family. It's a step that should be shared with smiles, perhaps some happy tears, and congratulations all around. It's just that with every "I'm pregnant!" I hear from those around me, I relive the news of London's diagnosis, or I see her in her crib, jerking her arms forward, her very first seizure... I think about how hospitals smell, and the weight of the air in the neurologists office. I recall having to puncture her flawless, pale, perfect skin with needles and pump steroids into her fragile little legs because there was a small chance of it taking her seizures away. I remember getting her wheelchair or her leg braces; I think about sitting in the waiting room as she had surgeries or procedures done and being with her in the recovery room, with wires and tubes going out every which way from her little body. I count her doctors. I think about the relationships I've made with complete strangers in different countries, all because our kids just happen to have the same rare disorder.

It's not hard to be happy for my friends, it's just so hard to NOT be sad for what we've missed out on.

A Lazy Day...

So it's Wednesday, and London is out of school on Wednesdays so that means that we have a lazy day midweek. I usually have a hard time on these days because I feel like I have so much other stuff that I need to do and can never get around to, but I'm not complaining today! The past few weeks have been extra... something. Stressful? Exhausting? Something...I haven't been getting any good, restful sleep and with so many sick days and appointments, my routine had been way off. I feel like I'm going through the days with lead feet, and simple tasks like making lunch sometimes seem insurmountable. I have been short-tempered and have had headaches on a daily basis. I thought I was getting sick but nothing points to any sort of virus or infection. And no, I'm not pregnant. lol

We took London back in to the doctor for her re-scheduled VNS appointment and after discussing how she had been acting for the past month, we decided to go ahead and turn down the device to a lower setting and leave the frequency at which it turns on the same for now. I'm desperately hoping to see results. Last night was the first night in a long time that she didn't wake up multiple times with either seizures, pain, or just general unrest. I woke up and thought something must be wrong but other than being a bit more sleepy than usual today, she seems ok.  We also had to go for her routine blood work the evening of that appointment and yesterday the doctor called me with the results; everything looks fine apart from her Depakote levels being a bit low. Depakote is one of the meds she's on for seizure control, so the level was not normal; we possibly forgot to give her the Depakote that morning.

So, at the moment, I'm sitting with a sleeping London in my arms enjoying a movie with Kannon. Just before she fell asleep, London was looking right up at my face, her eyebrows ever so slightly furrowed, as if she was concerned. Her eyes seemed to be searching for something, it was like she was trying to silently communicate an important thought to me... she was clear and focused, something that rarely happens, especially for such an extended amount of time as this. How I wish I knew what she was thinking!

Sometimes it's like I can look at her and see an outline just under the surface, of who she SHOULD be--- a care-free, energetic, creative, curious, active little girl with crooked pigtails, skinned knees, and an infectious giggle--- much like the way I can make out the outline of her VNS device just under the skin at the left side of her collar bone...

VNS update

London has now had her VNS turned up a few times... I felt like things were going well with it even though we weren't seeing significant seizure control. She seemed to be a little happier and alert and I'll take small improvements like that any day! But after this past appointment to turn it up, it seemed that she was right back to grumpy London who wanted nothing but to be held all day, every day. I thought she must have an ear infection and it turned out I was almost right. Her right ear was a bit red, and since 'a bit red' ALWAYS turns into an infection for London, we get her on antibiotics for it right away. Typically, when on antibiotics, kids get diarrhea, but not London! She had been backed up before and the meds just made things worse. After I got that problem taken care of (thank goodness for PRObiotics!!), she still was grumpy so I called in for another Rx thinking the first one just didn't get rid of the infection entirely. And when THAT didn't work, I took her back in to make sure it wasn't still her ear. And it wasn't. So we were back to no answers... until I remembered that the VNS leads can cause pain up near the ear. I figure this is the problem...

We were supposed to go to the doctor today and I was going to see about turning the INTENSITY down, but turning the FREQUENCY up to see if we could get happy London back, but as soon as I put her in the car to leave, she puked everywhere. And most SN moms can relate to this: when our kiddos puke, there's no grabbing a wet wipe and getting on with the day as planned. I reluctantly rescheduled our appointment and London slept for the next several hours, puking once in her sleep. I was able to get a few things done around the house, but I look forward to our appointment so I can talk to the doctor about how the past month has been going.

I'm exhausted. London has also been waking up several times each night- another side affect of the VNS is insomnia (which is just now become a problem) Sometimes she wakes up crying out in pain, sometimes she seems hungry, and sometimes I think she just wants to have someone in her bed with her (that one still shocks me, as she's always been one to kick and push me OUT of the bed)... I feel so bad for her because if she can't sleep and she in pain, I'm sure she has just cause to be fussy and sad and irritable... but sometimes after hearing her fuss all day nonstop unless she's being held really wears me thin mentally and emotionally.

I feel like this past month has just been completely draining. After 5 years, you might think that a mom like me is totally at peace with their child's disabilities... but I feel like I have to re-accept it every single day. My heart breaks all over again each morning when I wake up. 

Homemade Maple Brown Sugar Oatmeal Packets

I've come to learn that, since I can't 'fix' London, it's sometimes theraputic to just create. And since I'm completely addicted to Pinterest, lately I've been trying things that I see on there... The only problem is that sometimes when I try things I see, they don't measure up. So I do things my way... Which is how I came up with this recipe. You'll have to forgive me, I don't have the links for where I found the two recipes that I altered/combined... But I had tried both of them, and didn't quite get what I wanted so used parts of both of them to come up with something that my kids and I would like. And sorry the photos aren't that great- Ain't nobody got time for that. :)

Ingredients:
1 cup brown sugar
2 tblsp maple syrup
1 1/2 tsp salt
Quick Oats (I use 1/2 cup per packet, and I think I got about 11 packets per recipe)
Powdered milk (I use 1 tsp per packet, but honestly this could probably be totally optional. I only used it because I had purchased it for another recipe and figured I might as well use it. I haven't tried it without the powdered milk yet.)
You can also sprinkle some cinnamon into each packet; completely optional.

 Start with your brown sugar in a shallow dish, add the syrup and the salt. 

  (Ok, so I didn't actually measure the salt, I just threw some in there.)

 

And for those of you who like pictures of ALL the ingredients, here's the salt that I left out of the first pic.

 

 Mash the crap out of it all with a fork. It will be lumpy, just keep mashing. You can take a break if your hand gets tired. I did.

Oh yeah, and here's a picture of the baggies I used. In case you needed to know.

After you have your sugar mixture...well, mixed, put a half cup of quick oats into a baggie.

 Then add 4 tsp of the sugar mixture to the oats.

 Add 1 tsp of powdered milk... Repeat until you've used up all your sugar mixture. Seal 'em up for storing. Add as much or as little hot water as you like and enjoy!

*You will have to mash up the clumps of the sugar mixture when you make them*

And don't worry if this happens while you're making up your packets. Just eat those little crumbs and get on with it. We wouldn't want to waste anything.

 And you can just go ahead and eat this too...

According to my MyFitnessPal app, these are about 231 calories per packet... which is more than the ones I was purchasing from the store, but the servings are bigger. And who cares.