Count this as an RSVP, we WILL be there! 6 reasons we WILL make your event!

Yesterday, I came across a post titled '6 Reasons My Husband and I Probably Won't Make Your Event, and Why We Don't Want You to Take it Personal...' While reading it through, I was battling a headache that came to a peak last night and turned into a full blown, category 5 hurricane Migraine with little tropical storm bursts of nausea. Fun fun. I was also making plans for the next day... clean the house on my day off from school... get my homework done... get the big little to school, and monitor the littlest little's rash... color a friend's hair and help her trim her infant's nails since it makes her nervous... will I head to the store? Who knows. 

Anyhow, it got me thinking... we've attended a lot of events over the past few years... weddings, baby showers, dinners, graduations, senior pinnings, and more. I can't fathom using my kids as a never ending excuse as to why both of us cannot attend, or even one of us. It blows my mind... We have to teach them to act at these events, or they will not know what behaviors are expected of them. It's why we take them out to eat when we can. Anyhow, we always take them to events when we can. Our friends have never had an issue with it, and while illnesses do come up, with the littlest little's immune deficiency, we still make it so that ONE person, generally, will attend if at all possible. Why? Because you put too much time and money into your event for us to dip out last minute. It's even worse when we RSVP. 

RSVP's are your guarantee that, as long as no one is deathly ill, you will be there. You do not send it in if you think you may flake out. The person throwing the event is dishing out serious money to provide food for you, in the case of an RSVP, or is reserving you a space that they are paying for. (Sometimes you will have to pay your own meal) If someone is asking for an RSVP so they know what they will need to purchase, for, say, a wedding... you do not dip out because you don't feel like dealing with the random crap that comes up with being an adult, or because you wanna be a 2 year old and say "But I don't wanna!" You suck it up and go, because you have already put down that you will be there. Don't be rude, or a douche bag, and yes, this makes you a douche bag. Kids or not. If someone is forking money for you to attend and you dip out last minute, then you're a douche. 

My big little dancing with her Aunt Taylor at her wedding.
 Proof that kids can do events too. 

So, here are my rebuttals to the arguments in the blog above. 

  1 -      WE HAVE KIDS! So, they will want to see you, and since they need to learn acceptable behaviors in public places, they will also be attending as long as you are alright with that. Oh, and don’t worry about random things that happen… aside from illnesses, which we don’t want to spread and don’t want the littles to catch, a blow-out diaper can be changed, clothes can be changed and washed, and entertainment items can be brought for the littles. We can even manage to keep the littlest little occupied after a nap gone awry and keep her from whining the whole time, generally speaking. It’s amazing what some attention and a coloring book or a snack can do for a whiny child.

  2 -      We are TIRED!!! However, this is not your problem, and we should not miss a big event in your life because we don’t want to be adults today. We can take some vitamin B12, chug a Monster or a coffee, and we can attend, at least for a short while. We feel as though your company is more important than Netflix and Chill. Even though we are very busy with two kids, one who is special needs in multiple departments and one in pre-k, after school events for the bigger little, University for me, and full time work for him, plus general housekeeping, we will still bite the bullet and support you or spend time with you, because you are important to us.

  3 -      We DON”T HAVE A BABYSITTER!! That means that the littles will be there as well, and if that’s ok with you, that is ok with us. We, again, use events like these to teach our kids how to behave. We don’t do house parties, clubbing, or things like that, so if that’s what your event is, then we will respectfully decline, but only because we do not personally go to those anymore. We’re grown adults with responsibilities, and we can’t be out all night, and we don’t even drink anymore. We’re lame, you don’t want us at your party, lol. That said, any other event that kids can attend, like, say, a dinner, well… if you are good with it, so are we. The littles would love to see you! 

  4 -      If ONE of us can’t attend… then the other will attend. I mean, we’re not Siamese twins, we’re not super glued together. One of us will be glad to support you in the event we both cannot. It makes us no less of a pair, or a team, but it means that every once in a while we can peel apart the PB&J sandwich and be a PB or a J sandwich without it being the end of the world. The one who does attend will give you lots of love from the one who cannot be there, and will probably head home early to assist the other one who is not there, but someone will be there. We may even split the littles up and one will be home, while the other comes to wish you well with your life event!!

  5 -      We actually DO have a FINANCIAL BUDGET and RESPONSIBILITIES!!! That said, if we know in advance, throwing 10 bucks aside every week to save up is not tough. We can do it for things we want to do, like trips to AwesomeCon, so we can do it for you, our friend. We love you and we will do all in our power to put aside the amount that we would spend on coffee or work lunch or some other thing we spend our spare cash on, and will get our needs, and then we will do all we can to be there. 

  6 -      WE JUST DON’T WANT TO GO! That said, as adults, we have things we don’t feel like doing every day. It’s time to pull the big girl panties up and be a grown up, and show some support for you, because you do the same for us. We can spend time together during and after the event, it’s not like you’re separating us in different rooms and saying “NO, you stay away from each other!”. You want us there together. You care enough about our family to invite us all, including the littles. We will reciprocate that love and be there. 

   Look, sometimes things DO happen. Stuff comes up. I get that. I've had it happen, as I said I have a special needs kid, trust me it happens. That said, I also know that by RSVPing I have said I will attend. My kids do not give me special rights to dip out last minute and not look like a pretentious douche. As a parent, I work around my kids. I bring them with me. I ask one of the 2 or 3 people I trust on the regular to watch my kids, if they can. If not, then Mike will go without me, or I will go without him. It's not hard. It's part of being a parent, and it's part of being an adult. Which is something more people should try sometimes.

Original Blog : 6 Reasons My Husband and I Probably Won’t Make Your Event, and Why We Don’t Want You to Take it Personal…

Why staying educated on your child's health is important.

Long time, no blog…at least for me that’s how it feels. I’ve been super busy with school and the kids and doing some fun things with them.

Anyhow, this is a good and a bad blog entry.

We have a diagnosis. A tentative one, at least… One that is being 100% verified and retested in October, but still, a diagnosis.

After almost a full year of testing, blood draws, and pretty much torture… after a year and a half of constantly being sick… after a surgery to help her with ear infections and the speech delay that has accompanied them… we now know something.

Getting ready for her surgery

Chloe has a Selective IGA Deficiency.

My last entry, or one of the last ones I’ve done, I mentioned having Chloe at the Dr. again, which is not a big deal because she’s in and out of ERs and Dr. offices… However, during that visit, we did a blood draw. That blood draw was the missing puzzle piece, so to speak. Her IGA levels were in the toilet. The test does not give you a definitive number below 7, due to how hard it is to read, right? Well her levels were 5. Anything under 20 is a deficiency. Anything 7 or under is considered to be SIGAD. Basically, her first part of her immune system, the part that stops her from being sick, is pretty much non-existent. Hence why she has always been sick, and why she has had so many ear and respiratory infections, and her asthma and allergies, and even her tummy issues. It’s all linked to this immunodeficiency.

There is no real treatment.

There is no cure.

It is a forever diagnosis.

 

She cannot have blood transfusions unless it has been washed of its IGA. She will have to be monitored, because this deficiency can later lead into lupus and leukemia and a slew of other immunoglobulin and blood disorders. She needs a medical alert bracelet. She is higher risk of pneumonia, and her live-virus vaccines will make her sick, as her body attacks them full force.

But, it is manageable.

We can do what we have been doing to manage this. We were told that the fact that she has not had pneumonia at this point in her life yet is a testament to how on top of things we have been. She cannot have more live-virus vaccines, but her dead virus vaccines she is more than able to have, and are in fact her friend. She can still do fun things, she just needs to be sanitized some while she’s riding rides and things of that nature.

She can go to school later on in her life, but she will be sick more than other kids.

Yes, she has a harness, and before anyone asks, it's because she's still having
communication issues. She still holds hands, but it's an extra line
of defense. No, I didn't ask for your opinion on harnesses, thanks.

And I have to admit, while knowing it’s permanent with no real treatment scares and hurts me as a mother, at least we know what we’re dealing with. Her language skills are improving every day, and she’s hopefully going to catch up in her self-help skills soon.

And she is, despite the hell her body is going through, happy.

Kids like her are the ones I feel the worst for… the ones with an invisible illness. The ones who get written off by people who are not around her all the time, who are told , “it’s no big deal” or “you’ll get better!” . No… please don’t tell my child she will get better. Don’t tell her you will pray and God will heal her. Don’t tell her that if she prays hard enough or eats better that she will be better at some point… because that’s not how her illness works. And you are not the one who will deal with her disappointment when she is old enough to realize that she is not getting better no matter what she does.

This is not a face I like seeing people...
Don't make her make this face, please.

And to any mothers who think something is wrong with their child in their gut and is being written off… don’t let anyone write you off. Push the issue. Push the doctors. If I had listened to my first pediatrician, I would have no idea what’s wrong with my child right now. If I had listened to the first two immunologists, I wouldn’t have a diagnosis. All it took was one Immunoglobulin count to not be run… IGG, IGM, and IGE were all run and normal, so no one checked her IGA. That is actually common for her disorder, all other counts are usually normal except for that one, the IGA.

Oh and the kicker? It’s mostly considered a boy’s disorder. So while SIGAD is the more common of the immunodeficiencies, it is far rarer for girls to get it rather than boys. Note, I said rare. Not impossible. So while she is a rarity... it should not have been 100% overlooked like it was. No excuses. 

Anyhow, parents everywhere, if you ever see this post, what I want you to take away from it is not that you should not trust doctors… but that you should be diligent. You should do your own research and trust your gut if something feels truly off. You should take a very active role in your child’s health and well-being and not blindly follow the advice of physicians… remember, some physicians have not researched or looked up new studies in years. Before you do something that can make your child have later consequences, such as giving solids without a medical reason before 4-6 months… do your own research.

The phrase, “But my pedi said it’s ok!” should not be enough for you. You have all the information in the world at your fingertips, all you have to do is want to learn and be open to new info, and be open to making a decision that does not line up with your medical professional. You're the parent. It's your call.