pink is for girls.

yesterday i took my littles to the earth day thing they had going on in old town yesterday, there were some fun vendors with upcycled crafts, music, a bounce house, and of course the farmers market was going on..  so a fun little day.  i got this sweet tiny vase from a fantastic crafter that you can find at http://www.etsy.com/shop/ebm126 you should definitely check out her stuff, we also picked up a few of her domino magnets.

we also came across a tupperware vendor that was selling some sale items.  i was actually looking for a tupperware cup for the big boy so i decided to look through some of their stuff.  i found what i was looking for in pink, which was fine because asheys favorite color is pink.  but i kept looking through just to see what else they had; while i was looking, the daughter of the vendor says 'oh, i think thats the only color we have in that.'  i tell her thats fine because pink is his fav anyway.  so then the girl (who is probably between 19-22) says to her mom, 'mom, this lady wants to buy this pink cup for her son here.'  im not sure why she needed to specify who i was buying the cup for, but then the mother looks at me with this face, and her daughter immediately says 'mom, keep your mouth shut.'  absolutely awkward.  i say, 'its fine, he loves pink.'  then the mother says, still with the judgy mcjudgerson look on her face, 'well, what does his father think about that?'  im sure i had a pretty snotty expression on my face when i told her that his daddy is fine with it, and that our son is allowed to like whatever he likes and love whatever he loves.  i almost didnt want to buy the cup after all of this just because i didnt want her to have my money, but i did buy it because my son did want it, and i didnt want her to think that she had changed my mind about letting my son use a pink cup.  i was just shocked that we were being judged over the color of a cup, and so openly... 

the offending cup.

it was sad, not for me because i dont care what she thought.  but sad for her that she felt she could make this assumption about the person i am based on what i allowed my son to have, and the very thing she looked down on is probably one of the things im most proud of.  she probably thought that im not doing my job right in not teaching my son that pink is for girls.  but i think im doing a great job of letting him know that he can like whatever he wants, and im totally cool with it.  i absolutely love that im raising this awesome and unique kid that is and will continue to be an amazing brother to his sweet baber. 

two awesome bros.



three things.

i have tons to write about today, so get ready...  ha ha!

1.)  we had an absolutely fantastical weekend!  a whole gang of us (19 strong) headed down to virginia beach for the MDA walk.  we had friends and family...  all the way from Mississippi join in the fun to walk for my sweet sweet fennel seed.  we got an award for raising over $1000 (we raised over $5000), and we got an award for the first runner up for the most money raised, and we did it all in just 10 weeks!  Way to go 'fins to the left'!

it was almost overwhelming to have so many people travel to be with us for the weekend, im sure i did not do an adequate job of letting everyone know just how much it meant to me.  but, truly, i dont know if ive ever felt so much love.  having so many people come together to support my family, my baby, one of the best feelings...  with all of this love and support, i have no doubt that we will rock the eff outta some md.  and md better watch out...  it messed with the wrong family.

 

2.)  and some less awesome news.  we were supposed to have our first appt with the md clinic in may, and i got a call the other day that it was cancelled...  theyre currently trying to fill some vacant positions, so we are on the waiting list for june with no guarantees that well get in.  so im currently trying to get us in with Hopkins in Baltimore, ive been back and forth with them a few times, hopefully this will work.  im just really worried that we havent even been seen yet and were already getting shuffled around, and i hate that its starting out like this...  i dont want finny to be overlooked because no one really knows where were coming from or whats been done, or what weve been told.  ill just have to push buttons... 

 

3.)  and the last thing i want to talk about is the importance of being your childs best advocate.  after having a conversation with someone i love that is also going through some health issues with her son, i realized, not for the first time, that women are often brushed off as 'just being moms' when it comes to our concerns for our children.  now, im not saying i wasnt sometimes a crazy person when i first brought home my sweet little 5 pound 10 ounce baby ashey...  i was.  but, once you get in the swing of things, you know whats normal and whats not, and you also have this weird mothers instinct and you know when somethings wrong with your child.  so if you truly believe that something is just not right, then you have to do whatever you need to do to make sure you get the answers youre looking for.  people might think youre crazy, or being over protective, or even seeking attention, but who cares about them?  and if youre wrong about the issue, thank god!  but at least you cared enough to fight for your child.  end rant.

not a carrier.

rememeber when i said that we were gonna have a month free of doctors visits, well i definitely lied. 

last week the big boy had some kinda stomach thing and vomitted for 48 hours with a fever.  then blood in the vom, so i had to take him in. not fun.  then sunday night the little one refused to sleep...  at all.  the second we layed him down, he immediately started to scream so i kinda thought ear infection.  yesterday he had a pretty high fever, so i took him in and, da da da daaaa  mom of the year right here...  ear infection.  hes on antibiotics.

BUT.  we got some really great news yesterday too!  the genetics lab called and i am not a carrier!  woohoo!  that means that it would be really unlikely that ashey has md.  and that we could possibly visit the idea of more children...  although there is still a 15% chance we could have another son with md.  well talk more about all that when we got to his appt with the mda clinic in may. 

as much as im happy that im not a carrier and all that that means, its kinda sad too...  my poor kid has a weird genetic mutation that came outta nowhere, unfair.  not that its fair that anyone ever has to have this diagnosis, but for his genes to just go rogue and do what they want.  not cool genes, not cool. 

http://mda.org/newborn-screening

so any of you new moms, soon to be moms, or even parents that want to be in the know...  check out the link above to learn a little bit more about trying to get neuromuscular diseases on the newborn screening checklist.  your baby could have it even if no one in your family has ever had it before.  not that its something you want to worry about, but in terms of treatments...  you never know, it might be better to know earlier one day.  progress is being made on a daily basis.

eb.

the happy baby had a pretty good weekend. 

we had a glow in the dark easter egg hunt the night before easter at meme and pop pops so, of course that was awesome.  then when we got home, the big boy thought he spotted the easter bunny in some bushes so obviously we had to do some investigating and exploring around the neighborhood, we heard him a couple times and thought we had him cornered, but he got away... 

but before the glow in the dark hunt, we dyed eggs with the meme and pop pop and finny had a first!  we finally heard an unsolicited 'i love you,' from him.  so cute!  but, he said it to his cars which took a little of the sweetness out of it... ha ha! 

oh, and remember when i said we had an entire month free of drs visits?  i totally lied.  we were supposed to have had an appt with finnys neurologist yesterday.  but in my defense, i thought we cancelled that thing when finny had to go in for his eeg.  apparently we did not.  so after some back and forth between myself, the receptionist and the the dr, we decided that we dont need to go back in for a follow up because everyone is in agreement that the neurologist at the mda clinic will be able to follow finnys progress...  so well see how that goes.