I was on my friend @Psychmama’s Facebook page the other day and saw that someone had commented on her sharing of the What I Would Tell You post (if you haven’t read it, you really should. Well worth it).
This is the long comment I saw. And of course, I couldn’t help but respond, because, well… I’m me. (click to see it full size)
Caring and ‘getting it’ are two vastly different things.
You can SYMPATHIZE but you cannot EMPATHIZE if you have never been a special needs parent. And there is a deep and wide chasm between sympathy and empathy in the special needs world.
That would be like me telling a doctor that I care so I should be allowed to do surgeries. I guarantee that doctor would be taken aback and insulted.
See… the big difference between special needs parents and someone who hasn’t walked in our shoes is that we see our kids as normal. They are normal to us. They are our children and we live every day with their disability. That is OUR normal. When people come up and try to do the ‘I’m pretending I’m treating your kid like they’re normal’, it pisses us off. Because the first thing you noticed was not their smile or how much they love to laugh. It was that they can’t walk/talk/eat/fill-in-the-disability. So we slap on the fake smile until we can escape and shake our heads about the people who think they understand, but really don’t.
We don’t want pity for our children. We want our children to be accepted for exactly who and what they are; to be treated like any other child. Not to be marked by their challenges. Unfortunately, yes, we are a ways off, as a society, from being there.
And the old ‘God will never give you more than you can handle’ IS bullshit. Because there are days when we are totally overwhelmed with it all. After your child hasn’t slept for weeks, or months, or in many cases, YEARS, you wake up and think ‘I cannot do this today. I just can’t’. And you dream of normalcy. And you have yourself a good cry in the shower before you go on with your day. Because being a special needs parent isn’t easy.
I won’t lie. There are the good parts. I’ve met lots of wonderful people because my daughter is special needs. But those friendships are not like normal friendships. Dawn and I have spent the last month supporting one of our friends who’s daughter has been close to death in the hospital. Every day we are there to listen, to research, to offer advice, and just to be there while she cries. And then we go back to our lives and cry ourselves because that could be our child in the hospital and part of us is so glad it’s not. But we understand on a level that most people can’t. And that is why, in crisis, we turn to parents who have been through what we’ve been through. Parents who can speak in medical terminology and acronyms, for that is the secret language of special needs.
And being friends with special needs parents brings other challenges. If anyone has so much as a sniffle, playdates are cancelled. They’re also cancelled because their kids or mine are feeling too overwhelmed/tired/anxious/overloaded/overstimulated on that particular day. Parents of normal kids get frustrated when we cancel last minute because of these things. Special needs parents just say ‘Oh, no worries. I totally understand,’ and you know they do, because the next time it will be their turn to cancel.
Special needs kids are wonderful and unique and challenging. As much as I love my daughter, I would never wish a special needs child on anyone. Not because I think they are ‘less than’, but because there is so much that goes on day-to-day that cannot be shown on some TV show. I’m talking about the doctors appointments, meeting with therapists, documenting of medicines, organizing of supports, purchasing of special support equipment, dosing meds, special exercises and the list goes on and on. So much of our days are consumed living with special needs rather than living with a child.
Therapists don’t parent our children. They are not nannies. They give us the resources to help our children reach their milestones. But much of the actual work, still falls to us, the parents. Where you would sit and play with your child, we consider what developmental area we’d like to work on and pick toys or activities appropriate to that.
When you leave the house, what’s the first thing you pack? Diapers? Oh your child is potty trained? Yeah, my almost 5yr old isn’t. Special needs, you know. How about meds? Oh you don’t need to carry a med case? Ours goes everywhere with us. Inhalers, spacer, anticonvulsant, oral steroids, fever meds, allergy meds, pulse-ox, stethoscope, thermometer, and of course My Little Pony bandaids…can’t forget those for when her balance goes and she does a faceplant in the gravel. And then we have to make sure we’re home in time to give her the evening doses of meds (unless we make a special point to pack those and bring those with us). This is all part of normal life for us. Not the glamorized medical docu-drama you see on TV.
You seem to have romanticized being a special needs parent. For that reason I hope you never are, because your world would come crashing down. Being a special needs parent is being vomited on every day (sometimes several times a day) for years. Being a special need parent is wiping feces off walls from kids who should be old enough to know better. Being a special need parent is cleaning up tube feeds that have spilled the entire contents of the feed bag over the floor. That is being a special needs parent. It’s the furthest thing from glamorous.
Is it rewarding, though? Yes, in the way that parenting any child is rewarding. You celebrate the milestones and the successes. They just don’t always come where and when you expect them.
But when you come up to a special needs parent and tell them you would love to have a special needs child, don’t be surprised if the reaction is less than favorable.
Mama bear instinct. Most mothers have it. That need to protect, not only our own children, but any child we see being neglected or abused.
I used to be very vocal in my judgment of parents who weren’t, in my view, perfect.
That, of course, would be before I had a child with special needs.
And let me digress for a moment and say something about those two words ‘special needs’. I’ve always hesitated to use them in regard to Vista. Outwardly she appears normal. Most people passing her on the street would never guess she’s anything but. She looks just like your kid, and your kid, and yours. Only she’s not.
Did you spend an hour this morning laying in bed with your child, not cuddling them, but restraining them while they shrieked and screamed and fought to get their hands free so they could punch and hit and attack you, as you softly talked and sang to them, trying to refocus their attention and calm them down? No? I did. But you’d never know that to look at my daughter, happily playing an hour later, while I still struggled to suppress the anger and frustration I felt over the incident. That was before 7am this morning. And that is not an unusual way to start or end my days. But, she looks normal.
And that exasperation may have come through as I snapped at her as she dawdled to the truck, fiddling with her umbrella in the rain, this morning. “I’m wet, you’re wet, group starts in 10 minutes… LET’S GO!”
But all you would have seen is me snap at her. And I’m sure the words “What a bitch” would have flitted through your mind as you walk past and felt sorry for my daughter at having such a horrible mother. You wouldn’t have noticed the long sleeve shirt and jeans I was wearing to cover the bruises left from her lashing out yet again. Nor would you have noticed the cap I was wearing to hide the fact the hour spent restraining her had used up the spare moments I might have had to grab a shower or even actually run a brush through my hair.
And yet, there you would have stood in judgment because that mama bear instinct is to protect the child…not the parent.
I don’t condone the actions of the parent. Did she cross over that invisible line of what is acceptable in private, never mind public? Yes, probably.
But consider this, if you will. Every mother out there has had one of those days where they’re at their wits end with their children. Where they just want to escape and can’t handle one more second of the whining/fighting/arguing/tantrums/crying/insert your child’s favorite button-pushing behavior here. Now imagine having those days EVERY DAY FOR MONTHS ON END. That can be what having a special need child is like sometimes. At some point, if you don’t have the supports in place to help you deal with this sort of stuff (like I’m lucky that we do), you will lose it. And sometimes that happens in public.
I’m not saying the child in this story Janna wrote about was special needs. I don’t know. I have no idea what issues the mother might be dealing with. Because Janna’s instinct was to protect the child and say “I can do this better”.
Rather than approach the mom with an accusatory sentence of “I don’t think you should talk that way to your son,” as most of us (myself included) instinctually would, why not go up and say “Is there anything I can do to help you?”
Find out what is going on that has brought them to the point that they have completely lost it in public.
And they may not want your help, and there may be nothing you can do.
But never think you can do it better until you know what’s really going on and have walked a mile in their shoes.
We are so quick to judge and hate each other. Would it be so bad to hold out a hand instead and say “I understand. Let me help”?
While Vista napped this afternoon, I sat in my favorite chair in the living room, surrounded by a sea of scattered toys, jotting down updates and notes in her Care Notebook.
Next month will be her third birthday.
Three years of test results, assessments, letters from doctors, and all her Early Intervention visit records sit in this binder.
I have pages full of names and numbers for doctors, nurses, and therapists of all kinds. Lists of things to ask and review with her pediatrician at our appointment tomorrow.
It has been a hard fought battle to get where we are today.
But I finally feel like we are in a good place.
A place where we’re being heard.
A place where Vista is getting the support she needs.
When I noticed she woke up again with tremors, something she hasn’t had since starting her anti-seizure meds, I was able to place a phone call to her neurologists office, discuss it with them, and get her meds adjusted over the phone.
Thursday I’ll be attending a parent orientation session for a 9 week preschool child development treatment program that Vista’s been accepted into. This will give us access to an Occupational Therapist, a Speech Language Pathologist, a Physiotherapist, a Child Psychologist, and a Social Worker, on a weekly basis. These people will work with Vista and give her, and us, the tools we need to help Vista with some of her sensory and behaviour issues.
We’ll be working with this team and with Vista’s doctors to try and qualify for government funding so Vista can have an aide to help her at school. She may qualify on a medical diagnosis because of her seizures, but that’s going to be a wait and see game. I’m hoping it’ll go through, so she can go to preschool a few days a week in the fall.
And thanks to the wonderful people at the Calgary Cerebral Palsy Association, Vista now has a bike to ride this summer. It’s wonderful to see her be able to do some of the peddling on her own as she squeals “Look at me, Mommy! Look at me!”
I’m looking, baby girl, and I’m so proud of how far you’ve come.
For the past couple of months there has been an elephant in the room. Everywhere I turn, there it is. I try to avoid looking it in the eye. It sees and looks away. I avoid talking to it. It walks to the corner and sits down. But still, there it is.
And I’m tired of it.
I’m tired of skirting the issue. I’m tired of talking in double speak. I’m tired of innuendos, allegations, comments, blah, blah, blah. I’m sick of it.
I’ve been playing along, keeping my distance. But this isn’t who I am. I’m not a sheep to follow a crowd.
Anyone who knows me knows that I will always tell you want I think. I’m blunt to the point of being brutal. But at least you never have to guess where I stand. Yet, for the past few months everyone has been guessing, questioning, wondering what I think of this elephant in the room.
You want it? Well here it is.
There I said her name.
OMG. I said it again. Are you still reading? Great.
Yes, Nic and I were friends before the drama. Yes, we created and hosted Blog Her @ Home together. Which, by the way, I’ve been asked several times why I haven’t removed her from that site. Why? Because Blog Her @ Home was not my idea. It was not my brain child. It was hers. And you want me to remove her from a site that she conceived? Why? What purpose would that serve?
Everyone wants to know what I know. I know what you know. No more, no less. I don’t have some magical insider information. Nic has not changed her story about what happened, just because she’s talking to me. She has continued to stand by what she says happened to her. That has not changed through any conversation I’ve had with her.
Nic and I have spent hours going round and round about what she believes and what I believe happened. Yes. Those are two different things.
But the reality is I’m faced with a friend. Is she dramatic? Sure. That’s who she is. She’s never apologized or made excuses for that. But she is someone who has been there for me. Who has spent hours on the phone with me while I cried over whatever my latest life crisis was. Who has been there to offer her support when I needed it most.
And in the past few months she’s really needed a friend. And where was I? Not there. Yup, pretty crappy, eh?
I was the one standing in judgment of her. Standing with hands on my hips saying “I don’t believe you. PROVE IT”. Demanding an explanation. A reason. A rationalization for what had occurred. Throwing accusations. Screaming at the top of my lungs “YOU OWE IT TO US”. Owe. Owe for what? Payment for a debt? Because we made the choice to tweet, post, blog, whatever? And we’re embarrassed by what happened and therefore we make it her problem. “I believed you, therefore you owe me.”
But what happens when she believes herself?
Trust me when I say we’ve talked about it from every angle.
Truth, lies, reality, fiction, sane, mentally ill, this disorder, that disorder. And still, we’re no closer to being on the same page. And we never will be. Ever.
And there it is.
So the decisions I have to make is this: How important is this to me? Is it worth the cost of a friendship? And do I have a right to stand in judgment.
That last one what the big one. And something I only just realized. And what prompted me to write this.
Who am I to stand here and judge her?
Even if I thought she was completely lying and made the whole thing up (no, that’s not what I think), have I never, ever embellished a story? Never lied about anything? Ever? I wish I could say I hadn’t but the truth is, of course I have in my life time. No, none of the stories on this blog are fabrication or embellishment. Unfortunately I have enough drama in my life, I can write fact and that’s enough.
In our last conversation, Nic asked me what I wanted. She can’t change how I view the events. That’s my reality. I wasn’t there, so I can only go by what I think happened. But what do I want. If I say I want the truth? Well she has given me what she believes to be the truth. But I don’t like that truth. So whose problem is that? Hers or mine?
Most of us have been trying to make that her problem. I don’t like what you’re telling me, so give me a different story. But she won’t because she can’t. And so it goes.
Let me lay bare what I do believe. I believe that Nic believes what happened to her. She has owned it. That is not going to change. If you don’t like that truth then I can’t help you.
I need to start owning what I believe. And if that costs me friends / followers / influence so be it.
I don’t blog to make money. I don’t blog because I’m trying to be the latest up-and-comer.
The fact is, I blog because I enjoy the people I’ve met and the connections I’ve made.
As flamboyant, outrageous, and in-your-face as she is, Nic is one of those people.
There are lots of things her and I don’t see eye-to-eye on. This isn’t the first and won’t be the last.
But I’ve decided to stop imposing my expectations, insecurities, and judgments on her, and just be a friend again.
I can remember writing essays on the topics of silly things like ‘Who is Your Hero‘ and ‘If You Could Have Dinner With Any 3 People, Who Would They Be‘ when I was in school. I invariably took the lazy route and chose someone easy like Madame Curie, Catherine the Great, or Ghandi (yeah, my beauty pageant answer would have been ‘World Peace’…. what’s your point?)
But now, years later, I’m older and (I hope) wiser. Oh sure, it would be fascinating to have a conversation with someone brilliant like Einstein, or be inspired by the likes of Mother Teresa. But if I could spend an evening with anyone, it would be little Madeline Spohr.
Beautiful Maddie, who’s smile has inspired and touched so many people.
(Happy Birthday sweet Maddie)
How I wish I could send her a birthday gift to thank her for everything she has taught me.
To appreciate what I have, rather than taking if for granted.
To put down to phone, computer, work, and focus on what’s important – my family.
To be thankful for Vista’s health, my health, Bil’s health.
To never let a day go by without saying ‘I love you’.
So, if someone asked me tonight, who I would invite for dinner, my answer would be Heather and Mike and their darling Madeline. What I wouldn’t give to be able to allow them one more evening with their Maddie.
But all the wishing in the world can’t make that happen.
What I can do, though, is tell you about Friends of Maddie, a charity founded in memory of Madeline Spohr. A charity who’s mission is to provide support to the families of critically ill babies in the NICU.
As the mother of a child who was in a NICU and Special Care Nursery when she was born, I will never underestimate the importance of what the Spohrs are doing.
In celebration of Maddie’s birthday, I am asking each of my readers to consider joining me in donating to the Friends of Maddie. Even if it’s only $1, it still can make a difference.
Today, Bil, Vista and I will be sponsoring a Family Support Pack as our way of saying “Happy Birthday Maddie. We will always remember you. You will always be our hero.”
It’s a powerful beast.
And I’m not even talking from the ‘social media’ perspective.
I’m talking from the perspective of a mother.
The day Vista managed to get a huge sliver in her finger that I couldn’t get out , I mentioned it on twitter and immediately had a dozen suggestions on different tricks that might make it easier to remove. And it worked. Sliver removed without crying and fuss.
The day we took V to the hospital for yet another round of gastro issues, I twittered it. I was overwhelmed with support from mom’s who had been there with their kids. Who walked me through different meds. Who twittered me about different procedures the docs might suggest and what they all meant. The pros and cons of each. They offered phone numbers and then sat there on the phone offering support while we waited to be seen in the ER. And most people just offered support, good thoughts, prayers. All of which meant so much.
On Monday night of this week when I mentioned V had spiked a sudden fever and a cough, Dr. Twitter pronounced it Swine Flu and advised me to get some Tamiflu for her. I should know better than to doubt the all powerful Dr. Twitter. I put it off til she got worse on Wednesday. Took her into the local ER and walked out with our Tamiflu prescription.
Then yesterday afternoon, I mentioned on twitter the wheezing when she was breathing and the barking sound she was making when she cried. Several experienced mom’s popped up to tell me Vista had croup and I should take her in. I brushed it off, attributing the symptoms to the flu (yes, silly me…. I’m a slow learner).
Later that night, after V decided to drop a soup can on her big toe (why yes, it’s been the week from hell. Thank you for asking), the first place I went was twitter. I was informed by the Mom’s Who Have Been There Done That that the toe would need to be x-rayed and then the nail would probably need to be punctured and drained. Guess who was right again?
We bundled up Vista, took her into the ER. The nurses took one look at her and said “She has croup”. We explained that we weren’t actually here about that. That we figured it was probably the flu and we were actually here to have her toe looked at. After they picked their jaws up off the floor we were informed it was lucky we brought her in because of her toe. The wheezing (stridor) we were hearing when she was at rest was NOT a good sign in terms of croup. The doctor refused to do anything about the toe until the croup had been looked after for fear of getting her upset and sending her into respiratory distress. So she was plied with steroids and popsicles to take care of the croup. Later, as per the Twitter consensus, her toe was x-rayed (verdict was no visible break) and after a quick puncture of the nail we were on our way home.
Time and time again, my friends on twitter have been there for me. With advice, recommendations, personal experience, and support. I have learned that doctors give you REALLY funny looks when you say “My twitter peeps think this is the issue”, especially when it turns out they’re right on the money. But I have learned to turn to these people first. They are my rocks. My support. They are what keeps me going when I just want to sit down and give up.
- PsychMamma ,
To all those amazing people who are constantly there for me, there’s only one thing I can say.
We’ve all been through stuff with our family when we just needed to vent and get it all out there. Unfortunately, if you have a public blog that your family knows about, it’s not always the best place to do it (unless you want to cause a lot of family tension, drama, headaches…)
So when my good friend Lu told me she needed a place to ‘throw her dirty socks around’, I told her to come on over and let it all out. I have enough dirty laundry posted on this site; what’s a few more socks?
After reading her story below, I can totally understand why she would need to get this off her chest and blow off some emotional steam.
So, without further ado, the lovely Ms Lu….
So I got the call yesterday. the call that I was expecting to get actually. It’s funny how just because you expect a situation or manifest it in your mind, it doesn’t make it any easier to deal with or understand.
My brother and his wife are expecting.
After giving two other children up for adoption.
****Some history is probably in order.****
My brother, G was in 10th grade when my parents moved our family (not me I was already out) from our home town to a new state. For a high school student something like that can be hard and for my brother it was the beginning of the end. Without 5 pages worth of information to say it shortly my brother is a hippie, a drifter, a musician, a dreamer, not much of a do-er. He met A, his now wife, a few weeks after starting school in the new town. They began dating and also an intimate relationship, rather quickly. A was actually there the morning some of my family died, and was caught “fleeing the scene of the crime” which of course, she was cleared of any wrong doing. Well, except she was 15 and had no business being in my brother’s room overnight. (Letting your HS son have a room in the basement was NOT the best idea Mom, shit.) Given that she has been with my brother through all of this they have an unbelievable bond, which I can understand. They also really love each other and always have.
When they were just finishing their senior year of high school A got pregnant. When this happened I think it was just over a year after dad and the boys died and the prospect of a new baby brought a swirling of emotion to our family. We (mom, me, hubs, and sis) said we would back them, help them, and support them emotionally and financially. For a while there they had decided they would marry and keep the baby. My brother was entertaining ideas of joining the military so he would have a way of immediate support and medical care. We said we would support whatever they decided. Then A’s family started convincing her that this baby was going to ruin her life and had she even considered any other options? Her mother made her go to a meeting with an adoption agency and shortly after that they decided she would give the baby up, to an open adoption. So G & A could pick the family and have some involvement in the baby’s life.
Now I can not even begin to imagine what this feels like. Especially now as a mother myself the emotions are a thousand times more intense. I can not imagine how hard it is to carry the child full term and give her away. At the time this was really hard on our family. Especially my mom. Who was immediately accused of “trying to replace her sons.” Anyone who is a parent knows that if you lose a child they can NEVER be replaced. Just typing that out makes my stomach turn. You can not replace a child, even with another child of your own, much less someone else’s child. It is not possible. Yet they accused her of it. Repeatedly, because she wanted them to keep the baby. I was just supportive of whatever they wanted to do because I was young myself and although I was married I wasn’t “ready” for a baby either. However I really struggled to understand how G & A could honestly let the baby go. They both come from decent families who would have helped them through and teach them and support them. But they were both in the time of their life where freedom was finally theirs and ultimately the baby would cramp their style.
G finally let me in on his view. Since they were working with this open agency they would be able to see her and have some involvement, but still get to be kids themselves. The agency would also be paying them enough money that him and A could move out on their own. So not only would they not have the “burden” of the baby, they would be able to get some free money. From the agency AND the adoptive parents. The agency & adoptive parents paid their rent and utilities and any other expenses to make sure their baby would be in the best healthy environment possible. G & A were “hood rich” and loving it. At this point they pretty much quit communicating with us for the most part, but especially in regards to the baby. They felt guilt or ashamed I guess. I don’t know.
So a beautiful little girl was born. A little girl who I have never met. A little girl who not only has my blood running through her veins, but also strongly resembles me.
G & A went on with their lives which includes a horrible cocaine addiction and a stripping career. Two years went by and A gets pregnant again. Oh and guess what? The adoptive parents of the first child would just love to adopt this one too. So yeah, my brother and his wife basically sold them the baby. It was through the agency…but still, we all saw what was going on. I never came out and called him a baby seller to his face, but we a knew it. It was just too painful to address correctly especially with still feeling the pain of losing the first one. So here we go again. Except this time, the never even considered keeping it. Ever. He later admitted to me that the adoptive parents had been asking for months for another baby.
Fast forward a few years and G & A get their life somewhat on track. They aren’t hooked on drugs anymore (just a little lot of pot) and decide it’s time to get married. I mean they have been together forever anyway so why not. Soon after they figure out another way to get free money, school grants and loans. They rack up thousands of dollars in loans only to have that idea fizzle out as well. They both struggle to maintain school, jobs, and their hugely important social life. Soon after the money runs out they find themselves in despair once again.
Once again my mom opens her arms and home to them. During that time they are trying to figure out what the hell they can do with their life now. They literally have nothing left but some personal belonging and each other. So how can we get money again??? HMMMM. This time it was the military. During a time of war. They are so desperate to get something for nothing. So A joined but G was denied. A has worked her butt off, and it turns out, it wasn’t something for nothing. I will give her credit for that, for sure. All along though, I just keep wondering what kind of scheme they will come up with to get her out. So the first thing they did to keep her from getting deployed was sign her up for bunion surgery. Then they tried to deploy her again, so she signed up to have her other bunion removed. They were here for a weekend in between the surgeries. During a casual conversation about what would happen after that, how long she would recover before being deployed my brother pipes in with, “well if she gets pregnant, she won’t be deployed.” AH HA.
So it begins, again.
So now you are caught up.
She went in yesterday for her second surgery only to find out she is pregnant. My brother called me and said, “I am going to be a father.” My natural reaction/response was, what does this mean? He was like, what do you mean, what does this mean? It means I am going to be a father. Of course I am thinking, um, you already are, so what the fuck does this mean??? Now I never said, so are ya keeping it? I guess he just thinks I am supposed to know they are. I mean, what is different now that I am supposed to be anymore happy about this than the last two times you “were going to be a father.”
My mom and I are literally afraid to get invested. Afraid to get excited. Afraid to love.
We have been beat up emotionally a million and a half times by my brother and his wife. For way more than the two other babies. G & A are the type of people who if you piss them off they will use this baby as a pawn to get what you want or make you feel bad. I am so afraid.
I am afraid for the other two babies to ever feel like they came from a family that didn’t want them, but then we wanted this baby. We wanted those little girls, they were loved before they were ever born. We would have loved them forever.
I know that my brother can be an amazing father. I just hope he follows through this time.
And I don’t mean like a good bra (although that is worth it’s weight in gold)
I’m so lucky to have a great group of people I chat with on twitter and through blogs. September was a rough month at our house because of sleep issues and sensory problems rearing their ugly head. These ladies have given me so much advice and support. Everyone should be so lucky to have people like them to turn to.
- PsychMamma is teh awesome in my books. I love this lady. She has been a wealth of information and support for me this month. She’s amazingly insightful and perceptive.
- irishsamom is the sweetest, kindest person. She’s always there with quick word or thought to put a smile on my face. And the fact that her dog is just as bad as mine cheers me immensely some days.
- heathersebi98 is a pillar of strength. She is an inspiration and one of the first people I think to turn to with questions as she’s ‘been there, done that’. Oh, and it’s her Birthday today! So go send her some happy wishes and read why today is extra special for her.
- mom2nji is having quite the month herself. Their latest trial is a house full of swine flu. Doesn’t that sound like fun? And yet she still finds the time to answer questions and offer support. Amazing.
Don’t forget to head over to Ali’s blog, My Life With Them, and check out the other Follow Friday’s. And make sure to add your Follow Friday post to her link so other people can find you!
After my post earlier this week about pity parties, what to I find myself doing? Yeah, because I like to be all hypocritical like that. Hey, just sticking with my strengths here.
I spent the morning scrubing and disinfecting the bathroom (while scrubing and disinfecting V in the tub) after yet another unexplained puking episode. They are random, cause unknown. And doctors can’t be bothered to find out. We did have a Gastro-Intestinal specialist for V, but she basically shrugged and said “Yeah, she might just be like that until she’s older”. F*cking super. Really? Well in that case, you come to my house and clean up after her, hold her while she sobs, because she’s so goddamn tired of throwing up herself.
After getting V out of the tub and drying her off, 3 hours of her crying non-stop began. She’s exhausted, but can’t tell me what’s wrong. I’m frustrated, she’s frustrated. Nothing distracts her. I tried singing, telling stories, massages… she just cries. Again, the doctors shrug and say “She’s kind of a mystery. We have no idea”. Well that’s f*cking super. Then you come over and spend all night, every night, for weeks on end while she bawls her eyes out and screams in pain. And then the hitting starts. She starts hitting herself over and over and over trying to soothe herself. And you have to restrain her, which just makes the whole thing worse.
I’ve tried to get an appointment with our family doctor. That call was placed on Monday. No one ever bothered to get back to me.
I am so sick to death of fighting to try and figure out how I can make my daughter feel better. I’m not the one with the god damn medical degree here so why am I doing the job of a doctor?
And, yes, we have seriously considered bringing her down to the States. The only thing holding us back is the fact we haven’t won the lottery lately and a trip like that would be extremely expensive.
I’m officially throwing up my hands and saying I give up. I don’t know what else I can possibly do at this point.
I’m lucky that I can call Bil at work after an especially impossible day and he’ll try to come home a bit early if he’s able to.
For those women who don’t have a support system like that in place… well…
I told someone once that I could understand how shaken baby syndrome happens. I get why some women get to the point they end up murdering their children. I don’t condone it. I would never, ever, in a million years, let that happen. I just understand how people already teetering on the edge eventually break and take that step over into the horrible. You can hate me for that. You can stop reading right now. Feel free to tell me how awful I am in the comments. But until you’ve gone three weeks without sleep, while rocking and doing everything in your power to calm your child, when even drugging her doesn’t work, and the doctors won’t do anything to help? Then, and only then, can you judge.
People are always telling me “Just wait til she’s a teenager.” At this point I’m just trying to make it through the next week.
Children are wily creatures. Oh, they may seem all cute and cuddly, but underneath it all they’re badgers. Rabid badgers. Who among us has not been bitten at least once by a toddler? Yeah, I rest my case. Badgers. The whole lot of them.
Vista, I suspect is a vampiric badger (they’re the worst kind). She prefers to sleep during the day and come out at night. Which is damn inconvenient, because despite my convictions otherwise during my goth teenage-angst years, I am not a vampire. I like to sleep. No, screw that. I NEED to sleep. But this little vampiric badger of mine… oh she’s smart. Very cunning that one. She spends a whole month lulling us into a false sense of security.
I’m sure in addition to be a vampiric badger, she also possesses some sort of strange magic. Magic that makes us forget things. She’ll look at me with big blue eyes and tousled blonde hair that says “Sure I’ll sleep through the night mommy. Just watch” And so she does. And I think “This isn’t so bad”. Because, you see…magic. I forgot that just the month before we spent night after sleepless night up with her.
And then I feel silly for calling the nice people at Family Support for Children with Disabilities (FSCD). I feel silly that the nice FSCD lady came all the way to our house. And I feel silly that she approved us for respite care so we could get a break. Because the magic makes me forget. And when she sent over the contracts for us to sign, I let them sit there. Because the magic was at work. And I thought ‘I’m sleeping through the night, and this isn’t that bad. And she’s doing so well. We don’t need respite care anymore’.
But then the evil rabid vampiric badger snarls and laughs at my foolishness. Laughs at my cockiness, thinking that I, a simple mother, could handle this alone. And the sleepless nights begin again. And the agitation and aggression returns. And the screaming. Oh the screaming and the howling. Because everyone needs to know that that badger is back in town.
Take heed and be warned. And don’t forget to make sure there are tranquilizer darts in the gun… because those badgers, they’ll eat you alive.