Thursday, September 25, 2014

MAFOS and MOFOS!

YAY! Jaylyn finally got her MAFOS! And surprisingly she is adjusting very well to these strange contraptions.  They dont seem to even slow her down with her little crazy army crawl she uses to get around. I cant wait to see even more progress with physical therapy now that she has the support she needs to stand. Will she do it on her own? Will she ever walk? I most certainly hope so and have faith that maybe one day she will. Baby steps! We still have speech and occupational therapy in our near future too.
Yet with the good, comes the bad. Today I realized just how difficult and frustrating a simple thing like shoe shopping can be. Money is tight, so of course I did exactly what I promised my mother I wouldnt do, and used the gift card she sent me for my birthday on someone else. She even carefully chose a store she didnt think I would shop in for my kids to reinforce the fact that I was to get something for myself. I fully intended to get some much needed things for me, but my kids come first.
Not being savvy to this particular higher end department store, I was not aware just how unaccomodating they are even for shoppers with typical children. Their shopping carts are adorable,  no doubt. However,  they lack a seat and even have warnings that the basket is not for children to sit in. They had 1 wheelchair, adult sized. So I was faced with either carrying Jaylyn around or going back out to the car in the pouring rain to single handedly get her stroller while simultaneously holding her. I decided,  due to the fact that my time was limited, to suck it up and carry her to the shoe department I made sure to familiarize myself with online prior to going. I knew exactly which shoes I wanted to look at.  I was mumbling under my breath what a pain in the ass the store was for not having "normal" shopping carts. Of course the shoe department was at the farthest point from the entrance, but I was on a mission and knew exactly what I wanted so I wasnt going to be long. I couldn't have been more wrong!
The large variety of shoes, widths, styles, brands displayed on the store's website was an extremely poor representation of what was on their shelves.  Half a rack, divided in half again to separate boys shoes from girls shoes and of course the styles and brands I had anticipated were not there. So I had about a half an hour to start from scratch.  No cart, no stroller, no seats to sit and try on shoes. The frustration was already mounting.
The process must have looked ridiculous.  Holding Jaylyn and a giant diaper bag. Selecting a pair in various sizes to see which would fit with her MAFOS. Shimmy all this and baby to the floor. Discover the shoes dont fit, and manage to scoop it all back up and repeat. After about the third or fourth pair, Jaylyn let out a sneeze followed by what I could only describe as a clear yellow dam that finally broke free. So adding a runny nose of Niagra Falls proportions to this already crazy experience added to the rush to get out of there ASAP. An employee had walked by me a couple of times and I know he noticed my difficulty just as fast as I noticed he was wearing dress shoes with no socks. He seemed to purposely rush by as if what he was doing was of such urgency, that if he had stopped to assist me would have dire consequences.  I took the hint. I also became less considerate about where I reshelved the shoes that we had tried on.
My daily alarm alerting me that my other daughter will be dismissed from school in 30 minutes had just gone off.  I had tried on every shoe in the girls department. All were too narrow. Unless I wanted a shoe that was 4 sizes too big, even accomodating the MAFOS. I worked my way over to the boys shoes although I was secretly hoping I could get Jaylyn a cute pair of Disney Princess shoes. After trying on several pairs of boys shoes, managing an intolerant baby that was becoming feverish ( and with that, fear of seizures) I found a pair and a lightbulb had gone off as well. Slippers! Slippers with traction would be great! And slippers are sold everywhere! Shouldnt be a problem to pick up a cheap pair of cute character slippers in a large chain department store, right?!?! WRONG! I tracked down the no sock wearing employee, I was a bit winded, frustrated, and on the vurge of tears. Im sure my feelings of being overwhelmed were overwhelming but I managed a smile and asked him where I could find children's slippers. "For her?!?!" "Yes" I said. "To fit over these" as I pointed to the more than obvious plastic contraptions with bright purple velcro straps attatched to the baby I was holding's legs. Trying to lighten the obvious bad mood this dude was put in by my interupting his "busy work" of cutting up a box, I smiled, and gave Jaylyn some encouragement to say "Hi". She smiled her flirtatious smile and then laid her head on my shoulder as she often does when playing shy. She then peaked up to see if the guy was paying attention,  smiled and then hid her face again. But not before sneezing right into mine, all over my black shirt and down her upper lip. We were directed to the children's wear department,  which was on the way out, but of course all they had were $14 slipper socks that were akin to the kind you would get in the hospital,  only cuter with sock monkeys and duckies. "Eff that, we will go to Payless or Kmart" I mumbled to myself and rushed to the register to pay for the shoes.
Now with this giant diaper bag that also substitutes for my purse, digging for my wallet, keys, all while holding Jaylyn who doesnt exactly cooperate with being held, yet cant stand or walk, the cashier obviously doesnt have a clue. Even the simplest gesture of putting the receipt in the bag would have been a huge help. Instead, she extended it to me as if she were expecting me to sprout a 3rd arm just for her. I juggled and shifted things around to accomodate her. Put my keys in my mouth and muttered a few subliminal unpleasantries on my way out the door.
I then had 2 minutes to get to my daughter's school that was 10 minutes away. Hooray for technology and talk to text! After that was all straightened out, me, my snot covered shirt, and my girls had to rush right to an appointment so I had no time to de-snot, change or disinfect myself. Hooray for antibacterial hand wipes!
So the lesson of the day here folks is if you see someone struggling, even offering to put a receipt in a bag is a huge deal and can make a world of difference in someone's day! Dont be a MOFO!

Wednesday, September 17, 2014

Just another bump in the road, right?!

I am about to embark on probably the scariest part of our journey yet. Although temporarily,  and having my older children at my side, I wont have my partner in crime. My rock. My best friend. He is about to have major surgery.  A scary surgery.  And yes "that" thought has crossed both of our minds. He has been so vocal about it that I had to get medication to cope with the stress and anxiety of it all. I havent slept or eaten properly in days. Jaylyn still manages to brighten my day but I cant imagine, nor do I want to entertain the thoughts that Jays feelings have planted in my mind. So for at least 5 days Im flying solo. And thats if everything goes well. This is all going on in the midst of 3 field hockey games, 2 practices, 2 doctors appointments,  and Jaylyn's physical therapy. So many people ask me how I do it. I do not honestly know how 1 person can do all I do. But I do know that I couldn't do it without all the help my son gives. Where a typical 19/20 year old young man should be focusing on girls, video games, friends, school etc, Dev has set those things on the back burner to help care for Jaylyn.  I thank him every single day and tell him how much I appreciate all that he does. I know how much he has sacraficed. And now I believe he understands just how much I have had to go through when he was younger too. It doesn't ease the guilt I feel but the woman who is lucky enough to capture his heart will be the luckiest woman in the world. I am hoping once Jay recovers that he will be able to have a more active role and be able to participate fully as a parent and member of the household. Since his illness had started just prior to Jaylyn's birth, he neglected to care for himself amongst all the chaos and heartache of Jaylyn's diagnoses.  This is why it is so very important for parents of special needs children to take care of themselves too! The problem was ignored for so long that it has become serious and possibly life threatening.  As if all of the "what ifs" we face daily about Jaylyn are not enough....Now? There are so many "what ifs" about her daddy too. Happy Birthday to me!

Monday, September 8, 2014

Dear "typical" parent

Dear typical parent.
I hear your complaints loud and clear. Chasing after your toddler is exhausting. Wiping up those messes from spilled cups and tipped over lunches does get redundant! Wishing for those days when all your baby did was "lie there" not making a peep. Believe me I do "GET IT".  I was once that typical mother too. Twice in fact. All the babble, chatter and sound effects my son would make drove me INSANE! Not being able to turn my back on my typical daughter because she would get her self into something that would result in injury or a big mess. Oh how I long for those days now. Oh how I wish my "quiet", "lazy" baby would be loud, babble, talk, scream and screech until my ears bleed. Oh how I wish she would have full use of her arms and legs so I can chase her away from the stairs, have to worry about her dumping and flushing goodness knows what down the toilet. How I wish she was able to dump her milk all over the table and dump her food over her head. I would love and long for the day she asks "whats that" and "why" a bajillion times a day! Even repeating words she shouldnt! So when you have to replace your carpet, have a plumber come out at odd hours, or youre so mad that youre wiping food off the walls for the 5th time in 2 days, remember just how lucky you are. Those tedious tasks are a privilege bestowed on you as a parent. Just as it was my privilege with my older children. I just didnt appreciate how much all those things I once bitched about would really mean. Now I have the privilege of modifying everything in my home and my life for my miracle baby who despite it all still manages to get into trouble in her own way and I LOVE IT!