I've been thinking a lot lately about how life threw us a curve ball. One that we didn't have any choice but to accept and I have definitely come to terms with it, but have been reflecting on life a lot lately. This blog isn't to bring pity to our family, it's more sharing awareness and how life has changed, sometimes for the better, and sometimes for the worse.
My reflection started when I had someone contact me recently to connect with another mother who was having a difficult time accepting her new role as a special needs parent. It is extremely hard to take on this role. You're thrown into it without having the chance to look back. No time to think, only time to act. I shared with her what I thought to be very valuable information and assured her that life would get better. Not easier, but better. I shared the story of traveling to Holland, which helped me in many ways accept the life I've been given. I've had time to reflect on my trip to Holland recently....
You see, I didn't CHOOSE to become a stay-at-home mother. I was FORCED to become one. I enjoyed my job, the interaction with adults, and the daily routine of going to work. Of course, it did seem appealing...getting up and drinking my coffee, watching GMA while my kids hapily played, getting laundry done, playing blisfully in the backyard, making wholesome meals, until my little Emily entered the world. Our first few months were spent weekly back and forth at the hospital getting heart checks, thyroid checks, and advice from feeding specialists for my little low-toned, floppy air-way, slow eater. Now, life is filled with constant trips back and forth to therapy. We see four different therapists along with an Early Interventionist and a handful of specialty doctors including feeding specialists, endochronologists, cardiologists, and doctors specalizing in children diagnised with Down syndrome. It's hectic.
When I thought of the life of a stay-at-home mom, I assumed I'd be able to attend all school functions for my children, happily drop them off at carpool and be about my day cleaning and primping. I have yet to attend a single PTA meeting for either child, or participate in a school function this year. You see, my children attend two different preschools. Not by choice, but again, by force. Lilly's school would not accept Emily into their program, they were not "equipped" with the staff or means to provide for her. She is absolutely NO different than any other typical child right now. She stands, creeps, crawls at the speed of light, eats like a horse, rambles and defies...shes "normal". I began my role of child advocate right then and there, finding a school that would accept Emily and everything that came along with her. I could not be happier with her placement and plan on switching Lilly next year. Lilly's school needs education about children with special needs. I understand them not wanting to take children with special needs, but before they turn one down, perhaps they do a little research into that child's particular diagnosis before saying "no!".
A life with a special needs child is spent on the telephone 50% of the time. Rescheduling therapies, calling for an IFSP update, aruging with insurance, Medicaid, HIPP and various other providers. After teaching, I was thrown from teacher lingo to special needs lingo. PT, OT, SLP, SMOs, HIPP, IFSP, ECHO, Free T4, TSH. The typical mother wouldn't know what these mean, yet I've learned them all in my last two years (any many more!). My child has had an unhealthy amount of x-rays, blood transfusions, ultrasounds, and ECHOs, yet there is one damn thing I can do about it. It's part of her life, my life, our life.
While at the beach, I had a lady, who happens to be a home-health nurse ask me Emily's age. I happily stated that she was 22 months old. The next comment out of her mouth regarded walking, and why she wasn't. I explained that she had Down syndrome and most milestones came later than that of a typical child. My "Mongoloid" as she stated, looked beautiful. She didn't understand why we had prenatal testing, and my only reply was that "knowledge is power". It has nothing to do with my religious beliefs, nothing to do with terminating a pregnancy, but everything to do with how our delivery would carry out and the appropriate steps that would be taken during Emily's first few hours of life. My explination ended with a "have a good day" and my reflection into her narrow-mindedness. Mongoloid is a term used for those with DS back in the early 1900s. It is no longer an appropriate word to use and is for lack of better words, extinct, from all medical research. I also didn't have to have an amnio (which she gawked at) because there are many, many more new non-invasive blood tests used to determine genetic anomilies. This promopted more of my reflection. Knowledge is power...
Emily is joy, blessing, mystery, and the light of our lives. She has opened our eyes, made us think twice about everything we do and given us a new purpose to life. She has paved way for a new path that we must take, one that is mighty different than expected, but one that has made us "up for the challenge". I challenge you to be kind to those families of special needs children. Take a minute to step into their worlds. If they turn down a playdate or date night, it's mostly due to sheer exhaustion. Maybe their child has had 4 viles of blood drawn that day, gone through an hour if rigorous therapy, or just plain had a tired day...be kind, accepting, and willing to work with them, because life is a different path for us all.
Wednesday, October 8, 2014
Wednesday, June 25, 2014
BELIEVE
Well, hot damn, do you BELIEVE your eyes!?? I'm BLOGGING! I've had so many people ask me why I haven't blogged in a while. There's really no excuse...so here I sit, with Billy by my side, at 9:54pm on Wednesday night, Michael Jackson blaring in our bedroom, writing to you all.
The last year has really been surreal. I stopped blogging after my mom called me out on several occasions after I'd been negative in one too many ways in my blog. I'd been going through a difficult time, comparing Emily to others, and in general, just hating everything that came along with T21 (Trisomy 21, or the 3rd copy of the 21st chromosome). Are there times that having a baby with Down syndrome sucks, ABSOLUTELY. But, with that being said, I would not ever, ever, ever change my sweet Emmie Kate for the entire wide world. She literally runs my world.
In the last year, she has decided to actually develop a personality. It took a little extra time for that to come about, but let me tell you, she is all sass, just like that little sister of hers, Lilly. Emily has learned to crawl like a mad man. She can get wherever she needs, in a hurry. We bit the bullet, like most typical parents, and screwed the baby gates into the walls to keep her trapped upstairs or in the kitchen...much to her dismay. We are currently working on getting her to stand and it's like most things, a constant battle. Physical therapy is no walk in the park. On Thursdays, I bite the bullet and endure an hour of crying. Working on standing, or any other type of "work" our therapist deems important immediately results in crying. Next time ANYONE decides to get me a gift, make it be Bailey's so that I can add it to my 8am coffee for PT.
We also go to Occupational therapy every Monday which is much more fun. It requires Emily to stack blocks, pull doggie toys, push buttons...all which seem normal to the typical parent, but given the fact that Emmie was basically born without muscles, these items are like obstacles. This therapy is at 10am, so mimosas would be a little more appropriate.
I have asked our Early Interventionist (yes, there are like 1,000 names for the 1,000 people that help run Emily's life) for speech therapy. We will begin that in the fall. So, basically, once the school year begins, never, ever, ever call me and expect me to be able to do anything. PT and OT once a week and speech 2x/week...oh, and we are on the waiting list for aquatic therapy (supposedly, it's good for those lazy joints and muscles). I'm busy, our babysitter is making a small fortune, and my head is about to pop off!
It's crazy living this life. I still sometimes feel like giving God the bird, but hey, He gave me what he felt like I could handle. My husband busts his ass working two jobs so that I can stay home, although I have absolutely no idea how I would work right now. I occasionally walk into our shed and look at the melting crayons and dried up glue and wonder if I'll ever head back into teaching. I long for the adult interaction and the fulfillment of teaching youngsters new things. When I left the world of teaching, it was bittersweet. I absolutely LOVED the kids I taught when Emily was diagnosed and their parents were so wonderful to me, coping with the days off I took and all the appointments that came along with growing a little special needs baby. I miss it daily.
The other thing I miss the most ever, ever, ever is Charleston. It's a pain deep in my heart that I don't think will ever go away. Our friends there were family. Period. They will always remain family and it absolutely pains me that I've missed so much in my "family's" life lately. If the time ever came about, I am 99.9 % that Billy and I would move back. Right now is not the time, but one day, it just might be. Both of our children were born there, and we have deep memories that will never fade. Our family in Georgia is literally the best. I don't know how we would ever do it without every single person. I'm always calling someone to complain or ask for advice and they're right there. We're all in this together and EK has brought us all closer together than I could have ever imagined. Family means to world to us, and I'm pretty sure that without them all, I would have suffered a mental breakdown by now!
Having a child with Down syndome will never be easy. I look at our basement every time I go down there and think "this will be Emily's house"...will it? Like really? Will she ever live alone? Will we travel to Italy? Greece? Bora Bora? Our "Bucket List" places? All my friends tend to think in the real world and reassure me that she will live independently, but really, have you all done the research? No. Most likely, she won't live alone. Bring on the $30,000 basement reno. My baby will forever live with me...but you know, if she's as sweet as she is now, I'll take it. I could rock her for hours and hours and hours. Having a T21 baby isn't as scary as it seems, and I'm beginning to realize that, slowly, but surely.
The last year has really been surreal. I stopped blogging after my mom called me out on several occasions after I'd been negative in one too many ways in my blog. I'd been going through a difficult time, comparing Emily to others, and in general, just hating everything that came along with T21 (Trisomy 21, or the 3rd copy of the 21st chromosome). Are there times that having a baby with Down syndrome sucks, ABSOLUTELY. But, with that being said, I would not ever, ever, ever change my sweet Emmie Kate for the entire wide world. She literally runs my world.
In the last year, she has decided to actually develop a personality. It took a little extra time for that to come about, but let me tell you, she is all sass, just like that little sister of hers, Lilly. Emily has learned to crawl like a mad man. She can get wherever she needs, in a hurry. We bit the bullet, like most typical parents, and screwed the baby gates into the walls to keep her trapped upstairs or in the kitchen...much to her dismay. We are currently working on getting her to stand and it's like most things, a constant battle. Physical therapy is no walk in the park. On Thursdays, I bite the bullet and endure an hour of crying. Working on standing, or any other type of "work" our therapist deems important immediately results in crying. Next time ANYONE decides to get me a gift, make it be Bailey's so that I can add it to my 8am coffee for PT.
We also go to Occupational therapy every Monday which is much more fun. It requires Emily to stack blocks, pull doggie toys, push buttons...all which seem normal to the typical parent, but given the fact that Emmie was basically born without muscles, these items are like obstacles. This therapy is at 10am, so mimosas would be a little more appropriate.
I have asked our Early Interventionist (yes, there are like 1,000 names for the 1,000 people that help run Emily's life) for speech therapy. We will begin that in the fall. So, basically, once the school year begins, never, ever, ever call me and expect me to be able to do anything. PT and OT once a week and speech 2x/week...oh, and we are on the waiting list for aquatic therapy (supposedly, it's good for those lazy joints and muscles). I'm busy, our babysitter is making a small fortune, and my head is about to pop off!
It's crazy living this life. I still sometimes feel like giving God the bird, but hey, He gave me what he felt like I could handle. My husband busts his ass working two jobs so that I can stay home, although I have absolutely no idea how I would work right now. I occasionally walk into our shed and look at the melting crayons and dried up glue and wonder if I'll ever head back into teaching. I long for the adult interaction and the fulfillment of teaching youngsters new things. When I left the world of teaching, it was bittersweet. I absolutely LOVED the kids I taught when Emily was diagnosed and their parents were so wonderful to me, coping with the days off I took and all the appointments that came along with growing a little special needs baby. I miss it daily.
The other thing I miss the most ever, ever, ever is Charleston. It's a pain deep in my heart that I don't think will ever go away. Our friends there were family. Period. They will always remain family and it absolutely pains me that I've missed so much in my "family's" life lately. If the time ever came about, I am 99.9 % that Billy and I would move back. Right now is not the time, but one day, it just might be. Both of our children were born there, and we have deep memories that will never fade. Our family in Georgia is literally the best. I don't know how we would ever do it without every single person. I'm always calling someone to complain or ask for advice and they're right there. We're all in this together and EK has brought us all closer together than I could have ever imagined. Family means to world to us, and I'm pretty sure that without them all, I would have suffered a mental breakdown by now!
Having a child with Down syndome will never be easy. I look at our basement every time I go down there and think "this will be Emily's house"...will it? Like really? Will she ever live alone? Will we travel to Italy? Greece? Bora Bora? Our "Bucket List" places? All my friends tend to think in the real world and reassure me that she will live independently, but really, have you all done the research? No. Most likely, she won't live alone. Bring on the $30,000 basement reno. My baby will forever live with me...but you know, if she's as sweet as she is now, I'll take it. I could rock her for hours and hours and hours. Having a T21 baby isn't as scary as it seems, and I'm beginning to realize that, slowly, but surely.
Sunday, September 8, 2013
Back in the game...
Our family is beyond ready for the fall weather and change of pace to come. This summer, as we all know, has been filled with rain, humidity, and HEAT! I took Lilly to the park today and it was a miserable experience. It's was just so hot. She was ready to leave after 30 minutes. It's sad when you kid tells your that she just wants to stay inside because it's too hot. We have resorted to front porch rocking with popsicles many times this summer to cool down. I cannot wait for the day when we can play outside alllllll day without continuous sweat and the worry of baking under UV rays with an index of 10+. With cool weather brings sweatpants and lounging around, football and tailgaiting, some of our family favorite things to do! We cannot wait to test out the fireplace at our new house, too. In the past, we have always spent countless evenings at Billy's parents with his sister and husband, enjoying beverages and a warm fire and now we can finally experience it at our own house. Our home in Charleston didn't have a fireplace and we longed for one for five years!
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| Summertime wagon ride |
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| Yellow River Game Ranch fun! |
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| Silly animals! |
Since this is an Emily blog, I must update you on her! She's continuing to make excellent progress. She's rolling over constantly. Her days of playing under her jungle gym are long gone. She doesn't stay under it for more than 30 seconds. We are still working really hard on getting her to sit up, but she's still not very sturdy. We primarily work on that during therapy. Lately, therapy has been nothing but misery and it's really stressful. Emily is a week shy of 9 months and doesn't even attempt one iota to sit up. It's got to get boring laying down all the time! We play in the Bumbo too, but that doesn't promote good posture and she really needs that strength so it's not an item that's used too often. So, what it all boils down to is me sitting, holding her up, and her getting pissed. It's also hard because we spend a lot of time in our playroom and Lilly desperately wants to me to play with her babies but I've always got one hand on Emily. If she could only sit up.... She spends plenty of time on her back and thankfully, she doesn't really have a flat head. Whew!
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| Hiding from the inevitable....THERAPY! |
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| It never gets old sneaking in on a sleeping baby just to get one last glimpse. |
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| Rolling so much she gets stuck! Guess it's time for a new toy... |
I am getting anxious about wanting to start speech and occupational therapy. Our physical therapist does it all for now, but Emily is approaching 9 months and I'd like to start her on some finger foods and the beginnings of drinking from a sippy cup. We need OT for the food and ST for the drinking. Plus, I'd like speech to come and watch her eat her solids to make sure that she's not thrusting her tongue too terribly bad. That is a common trait of those with DS. If you're ever holding her and she's hanging her tongue out of her mouth, kinda like a dog, gently push it back in. We also don't have any teeth yet and I keep checking. One mom on a private FB group said her son is 14 months and still without teeth. Tooth eruption is a common delay in those with Down syndrome. Maybe we will get one by her first birthday, but if not, we will continue to love that little gummy smile she give us daily. Speech will also help us learn how to properly sign with Emily (although we already do) and help her communicate with us. She doesn't coo like the typical baby. Her "speech" is more like a long, drawn out moan. It can get confusing deciphering this from fussing. She doesn't babble much. When she does, it is soooooo cute though-even cuter than it was with Lilly because we heard it from her daily. It's a once a week occurrence with Em.
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| EVERYTHING goes into the mouth.... |
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| Mouth again... |
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| Annnnnd more mouth. WHERE are her teeth! Hiding I do suppose... |
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| Picking out some paint at Lowe's |
Raising Emily isn't always roses and sunshine though. I re-read the Trip to Holland story recently and I'm reminded that even though we are not going to the same place as most parents, our place is just awesome and full of surprises and joy. Emily definitely has a little mind of her own lately. She doesn't like being left alone and does have the "stranger danger" affect going on. Her hardest time of day is from 5:00pm-bedtime, which seems to be getting earlier and earlier lately. She's just really, really, really fussy around 6:00pm so we go ahead and do bottle and bed. She rolls around in the bed for at least 30 minutes, but I guess she likes being in her own space and in her jammies. She doesn't cry, she just lounges. Her other vice is that she is definitely a mommy's girl. I am her primary caregiver and she knows exactly who I am and longs for me, and only me. This can get taxing at times and leaves me exhausted by the end of the evening. Billy is gone for work from 7am-7pm which is before she wakes and after she goes down. It's hard and tiring. Many moms have a desire to be a stay-at-home mom, but it's not always everything it's cracked up to be. I am FOREVER grateful that I have the opportunity to stay home, but I seek adult interaction-constantly. If I'm ever around you and I talk your ear off, just smile and nod...I need adults! I wouldn't trade this job for the world, don't get me wrong despite the bitching that sometimes goes on.
Our little firecraker, Miss Lilly started school and is having a really good time. On Friday, her teacher commented that she didn't finish her snack because "she was into everyone else's business." My mom was there with me and we both just laughed because she gets that honestly. My brother, mother, and I are constantly stirring that pot. Poor thing! This week she begins going the normal "full day" from 9-12. Last week was just two days and a warm up for only two hours. I'm really looking forward to the time alone with Emily and time alone with myself! Time to organize, clean, shop, or lounge-peacefully! Lilly thrives on structure, school, learning, reading, crafting, and interacting with others. I am confident that this school year will make her a happy (ier) girl once again since pulling her out in March.
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| Patiently waiting to meet her teachers |
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| First homework assignment completed...check! |
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| First day of preschool! |
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| Lounging |
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| Day 2 of preschool :) |
Before I wrap up for the night...don't forget-if you want to participate in the Buddy Walk (Sunday, Oct 13th at 1:00pm at Centennial Park), make sure you REGISTER to walk with our team. Also, the deadline for ordering shirts is WEDNESDAY. If you are even considering wanting one, please send me your size. We specifically didn't put the date of the walk on the shirts so that we can use them year after year-which also means that if you can't walk this year, you may be able to next year and will still sport our team wear :)
Time for some R&R. Busting up the walking trails with my mom in the morning to work off some of the ice cream that keeps making it's way into my mouth on a nightly basis.
Sunday, August 18, 2013
A handful of frustration and irritation, but a healthy dose of milestones!
Sometimes I could kick myself for not writing down the things that I actually want to blog about. I think of all the wonderful things while I'm alone, shopping, cleaning house...things that irritate the hell out of me or things that bring tears to my eyes. One day I'll learn to keep a running list of "things". This week has been a week of irritation. There is no justification as to why, it just is what it is. My list is chronicled below and some of you moms may say, "Hey, that bitch is talking about me!". Oh well.
Irritation of the week # 1: I ran across information overload this week which pissed me off from the get-go. I became a part of some Facebook groups just for moms of kids with DS. They are WONDERFUL to be apart, as long as you don't read every single link posted. You see, these links lead the already worried mother to read more pages filled with more worrisome information that causes you to lose sleep overnight. My most recent information overload came from researching nutrition and supplements for those with DS. Holy cow. There are some mega vitamins out there that supposedly help with all kids of issues that those with DS have, and of course, there are positive and negative comments about them all. I have never been one to supplement with vitamins, besides the Women's Day stuff, but all the other crap...I just don't believe in. I can ASSURE you that my grandmother did not take fish oils when she was 5 to help with whatever it helps with. And to this date, she is slightly more energetic than I am. I also don't sprinkle Emily's food with flax seed or any other seedy material. She shits more than me and all bowels are a go. However, with that rant, it does leave me to wonder if these vitamins can "help" Emily become "smarter", because, come on, we want her to be high functioning, right! Doesn't every parent with a special needs kid want that! Or, just a regular ol' kid. Hell, I think Lilly is gifted and talented, but of course, that's the motherly bias there. Lilly eats fruit snacks (aka, little chewy figures made purely of sugar), she could out-drink anyone in an orange juice drinking contest, she loves canned Spaghettios, and eats organic only when it's on sale or I shop at the Mehlinger grocery store AND gasp! she watches the Hannah Potty Movie sometimes three times in a row just so I can empty the dishwasher. There. Bad mom.
Ok, as I continue researching I am left reading endless articles about DS people needing to eat gluten free diets and having milk allergies. No ice cream? No cheese? These are staples in our house! I am left with the extreme guilty feeling of needing to change Lilly's diet because by the time Emily can eat unassisted, she will have to eat a more nutritious diet. Not only is this due to potential "allergies", but she has hypothyroidism which will naturally lead to her having a weight struggle her entire life. She's not going to be 5'6, so all the extra weight will spread evenly through those cute, chubby arms, legs, and already robust midsection! That midsection is already causing me issues. She can wear 3-6 month pants in length, but boy oh boy, that belly is losing circulation. What's a girl to do?
Irritation of the weeks # 2: An over-the-top-you-have-too-much-time-on-your-hands mom posted a picture on one of my DS pages of her child's "play area" at her house. And. there.were.a.lot.of.toys. She said she ran across several articles stating that babies with DS need a large variety of new toys to help with stimulation because they are "tools for development", or can be therapeutic. So basically, what this does to a mom (me) that's already irritated makes me look at all my toys and want to run over them with my car. Don't use the Bumbo. It doesn't promote good core strength. Don't let them lay too long on the play mat. Flat heads. Don't carry her on the hip. We definitely don't want her to become anymore bow-legged. Negative Nancy over here, I know, but hey, sometimes it's just that way. I did come across a great little file that contained wonderful information about specific toys for those with DS.
http://www.btha.co.uk/wp-content/uploads/2012/10/DOWNSSYNDROME.pdf
It's good stuff. Now, with this all said, I spent entirely too long at Buy Buy Baby recently looking at every single baby toy ever made and wanted to instantly buy them all. For that gifted and talented stuff, right? Sometimes, having to buy special toys and constantly have to worry about stimulating your child in the best way possible takes all the fun out of actually playing. It makes it a chore, which it should not be. Lilly can play baby all day long. I know we'll get to that point one day, but I can only help but think in the now. We never said raising Emily would be easy, and this is just one small hurdle we must jump over.
Positive Patty #1: When I think I'm having even a REMOTELY bad day, I think about everything we/she/the entire family has already been through and all that negative thinking is just a walk in the park. It's actually really hard to remember the days of the feeding pump, worrying about picking her up due to her incision, and surgery...I can hardly remember. It's a good thing I have a million pictures to look back on. The feeding pump was by far the very hardest part of raising Emily so far. Yes, the surgery was difficult, but she was comfortable and relaxed with all those happy drugs. The aftermath was what hit her hard. The Enfaport was the most disgusting formula in the entire world, and Emmie certainly let us know. Almost every time she ate, she projectile threw up the entire bottle. Some days, I knew it would just be easier to lay her down, hook up the pump, and let the milk drip into her belly. The pump was only for the night though and I didn't want her to forget how to suck from a bottle. THOSE days were hard. So on days like this, when no one, for no particular reason is pissing me off, I remind myself of those days and take a step back.
Milestone # 1: Sweet, sweet, sweet rolling over!!! Emily is a rolling machine. Front to back, back to front and over, and over, and over again. She turned 8 months old this past week and I never thought this day would come. Slowly but surely, progress is being made. Her core is strengthening and she's thinking about sitting up alone. My goal is by next week when PT comes, she can sit alone for at least 10-15 seconds. Goal.
I'm off to eat a piece of fried chicken. Because I can, and because I'm pissy. Maybe I'll even wash it down with a cold Miller Lite. It's 5:00 somewhere, right?
Irritation of the week # 1: I ran across information overload this week which pissed me off from the get-go. I became a part of some Facebook groups just for moms of kids with DS. They are WONDERFUL to be apart, as long as you don't read every single link posted. You see, these links lead the already worried mother to read more pages filled with more worrisome information that causes you to lose sleep overnight. My most recent information overload came from researching nutrition and supplements for those with DS. Holy cow. There are some mega vitamins out there that supposedly help with all kids of issues that those with DS have, and of course, there are positive and negative comments about them all. I have never been one to supplement with vitamins, besides the Women's Day stuff, but all the other crap...I just don't believe in. I can ASSURE you that my grandmother did not take fish oils when she was 5 to help with whatever it helps with. And to this date, she is slightly more energetic than I am. I also don't sprinkle Emily's food with flax seed or any other seedy material. She shits more than me and all bowels are a go. However, with that rant, it does leave me to wonder if these vitamins can "help" Emily become "smarter", because, come on, we want her to be high functioning, right! Doesn't every parent with a special needs kid want that! Or, just a regular ol' kid. Hell, I think Lilly is gifted and talented, but of course, that's the motherly bias there. Lilly eats fruit snacks (aka, little chewy figures made purely of sugar), she could out-drink anyone in an orange juice drinking contest, she loves canned Spaghettios, and eats organic only when it's on sale or I shop at the Mehlinger grocery store AND gasp! she watches the Hannah Potty Movie sometimes three times in a row just so I can empty the dishwasher. There. Bad mom.
Ok, as I continue researching I am left reading endless articles about DS people needing to eat gluten free diets and having milk allergies. No ice cream? No cheese? These are staples in our house! I am left with the extreme guilty feeling of needing to change Lilly's diet because by the time Emily can eat unassisted, she will have to eat a more nutritious diet. Not only is this due to potential "allergies", but she has hypothyroidism which will naturally lead to her having a weight struggle her entire life. She's not going to be 5'6, so all the extra weight will spread evenly through those cute, chubby arms, legs, and already robust midsection! That midsection is already causing me issues. She can wear 3-6 month pants in length, but boy oh boy, that belly is losing circulation. What's a girl to do?
Irritation of the weeks # 2: An over-the-top-you-have-too-much-time-on-your-hands mom posted a picture on one of my DS pages of her child's "play area" at her house. And. there.were.a.lot.of.toys. She said she ran across several articles stating that babies with DS need a large variety of new toys to help with stimulation because they are "tools for development", or can be therapeutic. So basically, what this does to a mom (me) that's already irritated makes me look at all my toys and want to run over them with my car. Don't use the Bumbo. It doesn't promote good core strength. Don't let them lay too long on the play mat. Flat heads. Don't carry her on the hip. We definitely don't want her to become anymore bow-legged. Negative Nancy over here, I know, but hey, sometimes it's just that way. I did come across a great little file that contained wonderful information about specific toys for those with DS.
http://www.btha.co.uk/wp-content/uploads/2012/10/DOWNSSYNDROME.pdf
It's good stuff. Now, with this all said, I spent entirely too long at Buy Buy Baby recently looking at every single baby toy ever made and wanted to instantly buy them all. For that gifted and talented stuff, right? Sometimes, having to buy special toys and constantly have to worry about stimulating your child in the best way possible takes all the fun out of actually playing. It makes it a chore, which it should not be. Lilly can play baby all day long. I know we'll get to that point one day, but I can only help but think in the now. We never said raising Emily would be easy, and this is just one small hurdle we must jump over.
Positive Patty #1: When I think I'm having even a REMOTELY bad day, I think about everything we/she/the entire family has already been through and all that negative thinking is just a walk in the park. It's actually really hard to remember the days of the feeding pump, worrying about picking her up due to her incision, and surgery...I can hardly remember. It's a good thing I have a million pictures to look back on. The feeding pump was by far the very hardest part of raising Emily so far. Yes, the surgery was difficult, but she was comfortable and relaxed with all those happy drugs. The aftermath was what hit her hard. The Enfaport was the most disgusting formula in the entire world, and Emmie certainly let us know. Almost every time she ate, she projectile threw up the entire bottle. Some days, I knew it would just be easier to lay her down, hook up the pump, and let the milk drip into her belly. The pump was only for the night though and I didn't want her to forget how to suck from a bottle. THOSE days were hard. So on days like this, when no one, for no particular reason is pissing me off, I remind myself of those days and take a step back.
Milestone # 1: Sweet, sweet, sweet rolling over!!! Emily is a rolling machine. Front to back, back to front and over, and over, and over again. She turned 8 months old this past week and I never thought this day would come. Slowly but surely, progress is being made. Her core is strengthening and she's thinking about sitting up alone. My goal is by next week when PT comes, she can sit alone for at least 10-15 seconds. Goal.
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| From this....newborn.... |
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| To this...post surgery... |
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| And right back at it....she's a damn miracle. |
Saturday, August 10, 2013
It's that time again!
Ok...well first let me start by saying I drafted this entry like three weeks ago and I never posted...we have had such a busy summer and the past few weeks have gotten away from me. I can VERY, VERY, VERY happily say that all of Emily's doctors visits are pretty much done for a while (except for endocrine which is next week) and we will actually have some time to catch our breath and enjoy the kids without shuffling them all over town.
Over the past few weeks, we've spent some glorious time at the Mehlinger beach house for the second time this summer. It was really sad to leave this time because we're not returning until October (such a hard life, right!?). The trips with our families this summer have been some of the best of our lives. So. much. fun. My waist line and liver can attest to that. Sometimes, I regret when I stopped pumping. I was literally pumping away the pounds. I got nice and skinny for about one month. I could eat and drink whatever I wanted and it didn't matter. Oh, the days. Now, it's back to watching what I'm eating (kinda if I'm gonna be truthful) and drinking (unless I succumb to peer pressure, which usually happens).
Lilly actually learned to swim this summer, with the help of a life vest, but hey...it's a start and she had a blast doing it!! I am going to get her to my mom's pool everyday next week after nap to wear her out! Emily is also a water-lover which is why we are really eager to get her into aquatic therapy. Hopefully, once we get Medicaid, we can get her into that. Our primary insurance doesn't cover it and we are not in any position to pay for it out of pocket at this point in time. Both girls had a blast swimming with their cousin, Maggie and of course, all their grandmas and grandpas.
Lilly is gearing up for school is September and I think we're all pretty excited about it. She has had a lot of fun lately reading books and I've actually channeled my inner Pinterest mom and gotten some arts and crafts ideas from there for Lilly to do. I've said it a million times, but she really does thrive on structure and there hasn't been too much of that around here in the last four months. Her behavior, as most of you have read, has kinda gotta out of control and we are totally to blame. She has had a ton of adjustment in the last four months with moving, Emily's surgery, constant doctor appointments, a new house, no school and being shuffled around town when Emily's needs must be met. I've started making her sit again in the high chair and put the timer on her to eat dinner. She would drag it out for 30 minutes with only one chicken nugget eaten. I've put her to bed many times without dinner and she hasn't died yet from starvation, so I guess I'll keep at it. She hasn't been allowed snacks anymore either (except at the designated times of 10am and 3:30pm). Her behavior has improved and she's learning to go to her room on her own when she's about to have a meltdown or doesn't like my answer to something she wants. Ohhh, the joys of (almost) three year olds.
In the month of June, we also visited Lilly's BFF, Elloree and they had the best time ever. I literally had a smile plastered on my face the entire time because they played so hard together.
Emily is continuing to make great progress in her physical therapy, and really, every other aspect of life. She definitely doesn't like it when she's given a challenge, but one day, she'll realize that challenges will be thrown her way on a daily basis and she must work to overcome them. Her biggest accomplishment this week was ROLLING OVER from back to front. When she got done and we all shouted and praised her, she gave us the biggest smile in return. We did it over and over until she got, well, pissed! We're also working on getting her to sit up and she's doing quite well. She actually does better without the assistance of the Boppy because it allows her to scoot down and lay back for a little R&R. Our therapist also said not to allow too much time in the Bumbo because it doesn't really promote good posture. It allows her to slump down. We still use it and she actually has gotten much better in just the past week about not slumping forward. She's really using her core to attempt to sit up.
In the past few weeks, Emily has seen the ENT for her ears and as expected, she has fluid in her ears. She also did not do well on her hearing test, so we will go back in 6 weeks for a reevaluation and determine if she needs tubes. We also went to the eye doctor and she checked out perfectly for her vision. She does have clogged tear ducts which makes her eyes constantly water. Sometimes, if she gets really, really mad she cries tears of blood, literally. It's all part of those clogged ducts. We also go back there in 2 months to see if they are any better. If not, she will have to have surgery on them to repair the ducts. This is all very common for those with DS. Emily also got her 6 month shots and DID NOT like those. She cried as soon as she saw the nurse tear open the rubbing alcohol. It was only temporary and she cried so hard she knocked herself out in a matter of minutes. The best part of this visit was that she has indeed gotten bigger, which was already evident from her growing out of 3 month clothing. She weighed in at a porky 13.6 pounds! She's actually in the 25% percentile for her weight (on the DS scale). Yay!
Speaking of Emily, we are ASTOUNDED at the amount of money raised already for the Buddy Walk! I cannot believe how generous you all have been thus far. Please don't forget to also walk with us. We want everyone to actually come to the park and walk. We have designed our t-shirts and I'll have them posted next month for you all to order if you're walking, or if you just simply want one. This walk will be a family and friends event from now on since the proceeds go to help educate, advocate, and promote awareness of Down syndrome.
We are also working diligently of completing her Katie Beckett application and it's driving me crazy! I cannot believe how much paperwork it entails. They literally need every single financial statement and medical record in the history of Earth for her to be approved. We have worked for several hours on a daily basis and as soon as we get our medical records, we can put it all together and submit it. Hopefully, we will get accepted the first time and we won't have to resubmit. By getting this, we will not have the enormous medical bills to pay anymore. It really sucks because we have to fight so hard for something that Emily never had a choice about. She was born with this disability and there was nothing we could have done to prevent it. It just sucks that we have to go through all this.
Alrighty-for now, I'm signing off. Time for dinner! Until later...
Over the past few weeks, we've spent some glorious time at the Mehlinger beach house for the second time this summer. It was really sad to leave this time because we're not returning until October (such a hard life, right!?). The trips with our families this summer have been some of the best of our lives. So. much. fun. My waist line and liver can attest to that. Sometimes, I regret when I stopped pumping. I was literally pumping away the pounds. I got nice and skinny for about one month. I could eat and drink whatever I wanted and it didn't matter. Oh, the days. Now, it's back to watching what I'm eating (kinda if I'm gonna be truthful) and drinking (unless I succumb to peer pressure, which usually happens).
Lilly actually learned to swim this summer, with the help of a life vest, but hey...it's a start and she had a blast doing it!! I am going to get her to my mom's pool everyday next week after nap to wear her out! Emily is also a water-lover which is why we are really eager to get her into aquatic therapy. Hopefully, once we get Medicaid, we can get her into that. Our primary insurance doesn't cover it and we are not in any position to pay for it out of pocket at this point in time. Both girls had a blast swimming with their cousin, Maggie and of course, all their grandmas and grandpas.
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| Lilly and Emily splashing around :) |
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| Maggie and Lilly "sharing". This basically consisted of Lilly giving Maggie toys and then taking them away. |
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| PLEASE ignore my toenails. This was the only bad part of our trip...I broke my pinki toe and then dropped a beer bottle on my big toe :( |
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| Having a blast!! |
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| Catching a few ZZZZZ's on the beach. |
Lilly is gearing up for school is September and I think we're all pretty excited about it. She has had a lot of fun lately reading books and I've actually channeled my inner Pinterest mom and gotten some arts and crafts ideas from there for Lilly to do. I've said it a million times, but she really does thrive on structure and there hasn't been too much of that around here in the last four months. Her behavior, as most of you have read, has kinda gotta out of control and we are totally to blame. She has had a ton of adjustment in the last four months with moving, Emily's surgery, constant doctor appointments, a new house, no school and being shuffled around town when Emily's needs must be met. I've started making her sit again in the high chair and put the timer on her to eat dinner. She would drag it out for 30 minutes with only one chicken nugget eaten. I've put her to bed many times without dinner and she hasn't died yet from starvation, so I guess I'll keep at it. She hasn't been allowed snacks anymore either (except at the designated times of 10am and 3:30pm). Her behavior has improved and she's learning to go to her room on her own when she's about to have a meltdown or doesn't like my answer to something she wants. Ohhh, the joys of (almost) three year olds.
In the month of June, we also visited Lilly's BFF, Elloree and they had the best time ever. I literally had a smile plastered on my face the entire time because they played so hard together.
Emily is continuing to make great progress in her physical therapy, and really, every other aspect of life. She definitely doesn't like it when she's given a challenge, but one day, she'll realize that challenges will be thrown her way on a daily basis and she must work to overcome them. Her biggest accomplishment this week was ROLLING OVER from back to front. When she got done and we all shouted and praised her, she gave us the biggest smile in return. We did it over and over until she got, well, pissed! We're also working on getting her to sit up and she's doing quite well. She actually does better without the assistance of the Boppy because it allows her to scoot down and lay back for a little R&R. Our therapist also said not to allow too much time in the Bumbo because it doesn't really promote good posture. It allows her to slump down. We still use it and she actually has gotten much better in just the past week about not slumping forward. She's really using her core to attempt to sit up.
In the past few weeks, Emily has seen the ENT for her ears and as expected, she has fluid in her ears. She also did not do well on her hearing test, so we will go back in 6 weeks for a reevaluation and determine if she needs tubes. We also went to the eye doctor and she checked out perfectly for her vision. She does have clogged tear ducts which makes her eyes constantly water. Sometimes, if she gets really, really mad she cries tears of blood, literally. It's all part of those clogged ducts. We also go back there in 2 months to see if they are any better. If not, she will have to have surgery on them to repair the ducts. This is all very common for those with DS. Emily also got her 6 month shots and DID NOT like those. She cried as soon as she saw the nurse tear open the rubbing alcohol. It was only temporary and she cried so hard she knocked herself out in a matter of minutes. The best part of this visit was that she has indeed gotten bigger, which was already evident from her growing out of 3 month clothing. She weighed in at a porky 13.6 pounds! She's actually in the 25% percentile for her weight (on the DS scale). Yay!
Speaking of Emily, we are ASTOUNDED at the amount of money raised already for the Buddy Walk! I cannot believe how generous you all have been thus far. Please don't forget to also walk with us. We want everyone to actually come to the park and walk. We have designed our t-shirts and I'll have them posted next month for you all to order if you're walking, or if you just simply want one. This walk will be a family and friends event from now on since the proceeds go to help educate, advocate, and promote awareness of Down syndrome.
We are also working diligently of completing her Katie Beckett application and it's driving me crazy! I cannot believe how much paperwork it entails. They literally need every single financial statement and medical record in the history of Earth for her to be approved. We have worked for several hours on a daily basis and as soon as we get our medical records, we can put it all together and submit it. Hopefully, we will get accepted the first time and we won't have to resubmit. By getting this, we will not have the enormous medical bills to pay anymore. It really sucks because we have to fight so hard for something that Emily never had a choice about. She was born with this disability and there was nothing we could have done to prevent it. It just sucks that we have to go through all this.
Alrighty-for now, I'm signing off. Time for dinner! Until later...
Monday, July 1, 2013
Two Beach Babes :)
Whoooooo weeeee, it's been too long since I last touched this thing! I have not even laid my hands on a computer keyboard for almost a month. Summertime has come and is taking us by storm with all the fun we've been having! We've spent the majority of our summer so far at the beach, bronzing our skin and turning our hair even blonder. Both girls have their first little suntans and it's oh so cute! Lilly's hair is snow white and Emily's...well, it's still brown--borderline red. Where that comes from, I'm not sure! Maybe the mailman.
Emily is progressing along just like she should. She's hitting the milestones that we'd like her to achieve like holding her head up, spending some quality time on her tummy, reaching for toys with purpose, and becoming stronger and stronger at sitting up. She still has very, very low muscle tone in her arms and back, but our physical therapist is fantastic and she is teaching us so many tricks and therapies to get her stronger! I really hope that in a month or so, she'll be sitting up. Fingers crossed!
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I attended a class at Emory on raising children with Down syndrome and it was so informational! There were lawyers, financial advisers, and pediatricians there to help answer questions and provide helpful information. It's extremely important that we have someone in charge of our finances that has Emily's best interest in mind once we're gone. We definitely learned that and all about Special Needs Trusts...basically the only account that we can have for Emily that won't affect her receiving financial assistance. The pediatrician that was there harped on making sure we were on track with all the doctors that we need to see....so after that, I now have a whole new slew of doctors to visit. It's time to get her eyes checked, 6 month shots, visit an ENT, and become established at the Down Syndrome Clinic. Whew! In additional, we have weekly PT which comes at 8am! Talk about getting an early start to the day. Our physical therapist, Mary Elizabeth, is so kind. The whole family approves of her, even Luke. You must get into his circle of trust to become a family member and Mary Elizabeth will be a very important part of our family for the next 3 years. She's a graduate of UGA (which we definitely approve of!), she's young, and attentive to both my needs and questions as well as Emily's willingness to "participate" in PT. Even at a young 6 months, my little sunflower has quiet the attitude and will let one know if she's not willing to work.
Emily has learned how to blow bubbles with her mouth and wiggle her way around the entire crib with her buns of steel. She uses her lower body constantly. She will have very muscular legs, that's for sure. She loves to hold her hands to her mouth and give the biggest smiles...this is especially done when she's eating, much to my dismay. Speaking of eating, she is a PIGlet when it comes to eating baby food. I have not come across one food that the child didn't love. We may be in trouble! She is literally inhaling the baby food. Now that she gets the good stuff (well, I wouldn't say pureed carrots is good...), she doesn't think she needs bottles anymore. I still have a little breast milk left, but that's going to come to an end soon too. When I say she's a piglet, I mean it. I guess she's making up for all the lost time and struggle of feeding before surgery. Anyhow, she's doing GREAT and loving life.
Our other little angel is just that, an angel, that occasionally wears devil horns. The things that she says these days baffle me. Where do two year olds come up with some of their comments?!! As I am typing, she is asking me what I'm doing and with no response from me, she yells, "TALK TO ME!" and proceeds to tell me that I'm not very nice. She talks 24/7, literally. She doesn't rest her voice. The beach was a whole new experience for her this year and after one whole week of being terrified of the ocean and waves, her uncles finally convinced her to go in the water and play. From then on, it was perfect! She loved building sandcastles, chasing the birdies, and swimming in the pool after her 3 or 4 hour(yes, you read right) nap. I suppose all the fun in the sun just wore her out!
Lilly is in love with gymnastics and does somersaults all over the house on a daily basis. I think doing something like dance or gymnastics is just what she needs. She can run and jump and hop and which is perfect for her petite little frame. She is such a munchkin. After being at the beach for two weeks, I became very frustrated at the fact that over 1/2 of her new bathing suits were too nig in the waist. Once we got back from the beach, I headed to the attic to big through last summer's tub of clothing and drug out all her old suits as well as some shorts that STILL FIT! She wore an 18 month outfit yesterday and is wearing 12-18 month shorts today. She is nothing but skin and bones-and trust me...we don't go light on the fruit snacks and goldfish over here.
Life is about to get just a weeeee bit harder because my paychecks from work have officially....S.T.O.P.P.E.D!! Yikes!!!! This is definitely going to be very, very, very hard to a girl like me that finds an errand to run daily. It's also hard on "slow" days to sit around the house and think of all the decorating that needs to be done on a negative budget! We now live in this big house with only 75% of it furnished. Maybe we will win the lottery or fall into some big fortune by a long, lost relative (that we don't know of).
Mothering is calling me now. Emily is winding down for the night and this is her fussy time---which is why I gave into the pact that Billy and I made that we would not have a beer until our anniversary (this Friday-5 years!)....the 6:00pm hour calls for beveraging. Plain and simple. I give in. Oops!
Until later...!
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| Reading with her Papa Joe at the beach. She loves being read to! |
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| Enjoying the ocean breeze! |
Emily is progressing along just like she should. She's hitting the milestones that we'd like her to achieve like holding her head up, spending some quality time on her tummy, reaching for toys with purpose, and becoming stronger and stronger at sitting up. She still has very, very low muscle tone in her arms and back, but our physical therapist is fantastic and she is teaching us so many tricks and therapies to get her stronger! I really hope that in a month or so, she'll be sitting up. Fingers crossed!
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I attended a class at Emory on raising children with Down syndrome and it was so informational! There were lawyers, financial advisers, and pediatricians there to help answer questions and provide helpful information. It's extremely important that we have someone in charge of our finances that has Emily's best interest in mind once we're gone. We definitely learned that and all about Special Needs Trusts...basically the only account that we can have for Emily that won't affect her receiving financial assistance. The pediatrician that was there harped on making sure we were on track with all the doctors that we need to see....so after that, I now have a whole new slew of doctors to visit. It's time to get her eyes checked, 6 month shots, visit an ENT, and become established at the Down Syndrome Clinic. Whew! In additional, we have weekly PT which comes at 8am! Talk about getting an early start to the day. Our physical therapist, Mary Elizabeth, is so kind. The whole family approves of her, even Luke. You must get into his circle of trust to become a family member and Mary Elizabeth will be a very important part of our family for the next 3 years. She's a graduate of UGA (which we definitely approve of!), she's young, and attentive to both my needs and questions as well as Emily's willingness to "participate" in PT. Even at a young 6 months, my little sunflower has quiet the attitude and will let one know if she's not willing to work.
Emily has learned how to blow bubbles with her mouth and wiggle her way around the entire crib with her buns of steel. She uses her lower body constantly. She will have very muscular legs, that's for sure. She loves to hold her hands to her mouth and give the biggest smiles...this is especially done when she's eating, much to my dismay. Speaking of eating, she is a PIGlet when it comes to eating baby food. I have not come across one food that the child didn't love. We may be in trouble! She is literally inhaling the baby food. Now that she gets the good stuff (well, I wouldn't say pureed carrots is good...), she doesn't think she needs bottles anymore. I still have a little breast milk left, but that's going to come to an end soon too. When I say she's a piglet, I mean it. I guess she's making up for all the lost time and struggle of feeding before surgery. Anyhow, she's doing GREAT and loving life.
Our other little angel is just that, an angel, that occasionally wears devil horns. The things that she says these days baffle me. Where do two year olds come up with some of their comments?!! As I am typing, she is asking me what I'm doing and with no response from me, she yells, "TALK TO ME!" and proceeds to tell me that I'm not very nice. She talks 24/7, literally. She doesn't rest her voice. The beach was a whole new experience for her this year and after one whole week of being terrified of the ocean and waves, her uncles finally convinced her to go in the water and play. From then on, it was perfect! She loved building sandcastles, chasing the birdies, and swimming in the pool after her 3 or 4 hour(yes, you read right) nap. I suppose all the fun in the sun just wore her out!
Lilly is in love with gymnastics and does somersaults all over the house on a daily basis. I think doing something like dance or gymnastics is just what she needs. She can run and jump and hop and which is perfect for her petite little frame. She is such a munchkin. After being at the beach for two weeks, I became very frustrated at the fact that over 1/2 of her new bathing suits were too nig in the waist. Once we got back from the beach, I headed to the attic to big through last summer's tub of clothing and drug out all her old suits as well as some shorts that STILL FIT! She wore an 18 month outfit yesterday and is wearing 12-18 month shorts today. She is nothing but skin and bones-and trust me...we don't go light on the fruit snacks and goldfish over here.
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| Poor bear. If you look closely, he's wearing Luke's dog collar. Lilly could play with her bear for days! |
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| These two pictures capture her personality to a T! |
Life is about to get just a weeeee bit harder because my paychecks from work have officially....S.T.O.P.P.E.D!! Yikes!!!! This is definitely going to be very, very, very hard to a girl like me that finds an errand to run daily. It's also hard on "slow" days to sit around the house and think of all the decorating that needs to be done on a negative budget! We now live in this big house with only 75% of it furnished. Maybe we will win the lottery or fall into some big fortune by a long, lost relative (that we don't know of).
Mothering is calling me now. Emily is winding down for the night and this is her fussy time---which is why I gave into the pact that Billy and I made that we would not have a beer until our anniversary (this Friday-5 years!)....the 6:00pm hour calls for beveraging. Plain and simple. I give in. Oops!
Until later...!
Thursday, June 6, 2013
Summertime is here!
Sweet, sweet summer is here and the fun has begun! It stills feels weird to be spending our summer in Atlanta and not in Charleston. This summer is an adjustment for all...Lilly is not in school and staying home all day, there are TWO kids, not one...and it's a loooonnngggg way to the beach :( I got a little taste of Charleston fun last weekend when I went to clean out my classroom, thus closing that chapter in life for a while. I know that at some point, I must return to the classroom, or at least something in the educational field. Six years of teaching fit onto two shelves in our shed. It was kinda sad looking at it all packed up. My friends talked about the impact students said they made on their lives as they looked back on the school year and I miss that feeling, a lot. My sub said kids were crying about not seeing me one final time. I didn't really want to go back the day school ended and get them all fired up. All teachers know what the last day of school is like and coming in would have created a disaster! Anyhow, that chapter is closed-for now-and I am enjoying my new occupation as "mothering". Those that say a stay-at-home mom has an easy job deserved to be slapped. It's much more difficult than people think. Sometimes I long for a day at work in a building other than my own home. I'm jealous at times that Billy gets to go and talk to ADULTS! With all this said though, I wouldn't trade this job for the world :)
A few weeks ago, I enrolled Lilly in gymnastics and she loves, loves, loves it. It's such an outlet for her to go somewhere and run WILD. She thrives on structure and the class provides just that. As I was watching her yesterday, I was reminded of how much she needs school and really enjoys the routines and structures of teachers. It's just her personality. She has a blast here at home playing babies and kitchen, but August will be fun for her when she goes back to school part-time. (I am currently watching her "read" to her baby that's in Emily's carrier-so sweet).
I know that Lilly is really happy to be near all her aunts and uncles and grandparents, especially. She begs to see all her Papas and never, ever, ever looks back when she has a sleep over at Grammys. She's out the door before I even have a chance to say goodbye. I remember staying over at my grandmothers as a young girl and it was so much fun! We did things that mommy's and daddy's don't do. Soon enough, Emmie will be flying out the door right along with Lilly.
Lilly also had a playdate this week with a new friend, Astrid, and she had so. much. fun. It was awesome for her to get out and play with someone other than myself and her pretend dolls. She conversates with them on a daily basis and it was nice to see her actually interact with someone else and see the joy the day brought to her. She's currently napping after wearing herself O-U-T!
Emily is doing great as time progresses! She's still working on strength and she's definitely stronger. When I pick her up out of the crib, she's much sturdier and not as floppy. You still can't carry her on your shoulder without her flopping backwards, so one hand is always a must. In addition, she still can't be carried on the hip-which I long for! Our therapist said not to do that anyways because it's not good for the hips (in kids with DS). Boo on that. She's doing really, really, really good with tummy time and is holding her head up for extended periods of time. She don't love tummy time, but I haven't met a baby that did.
Even with all the positives, there's always some negative to my week in the realization that I have a special needs child. Will I ever get over that and just accept it? I always seem to look for other kids with DS and judge them (because I'm known for judging). I just can't seem to help it. I look at height, necks, arm length, eye structure...and I wonder deeply what Emily will look like. At gymnastics class, there's another mom that has to bring her baby while her toddler plays and she's two weeks younger than Emily and at least twice her size. While the toddlers were playing with balls, the other mother had her baby on the mats, SITTING UP all by herself. Whattttt? We work tirelessly in the Bumbo and the Boppy trying to get some back strength and nada. No sitting up. No attempt. Falling only. Even though kids with DS meet their milestones much later, it's still hard to accept. It seems like I will always be judging Emily based on other kids. I know that I will stop, but it's only been 5 months of having her in my life. Do all parents with special needs kids go through this? I'm taking a class this Saturday on raising a child with DS and it helps parents understand milestones and what to look for (as well as coaching me on this damn Katie Beckett stuff). Later in life, there are even more battles to fight when Emily gets older. While this may be very aggressive, some parents actually have their kids tubes tied that have special needs. What if Emily goes off to special needs camp and falls in love with another camper and they do the wild thing? And she gets pregnant! It's highly unlikely considering those with Down syndrome are usually infertile, but it could happen. Some get a hysterectomy because they cannot manage their periods. WWWWHHHHAAAATTTT? I mean, this is crazy, right!!?? Despite how wrong I see these things as-they are realistic, and they are things we must think of because we really don't know what our path will look like 15 years down the road. We gotta think long term and short term. I'm stuck in the short term, but I think that's what I need. One. Step. At. A. Time.
Anyhow, despite all this thinking I've been doing, life is grand and Billy and I are really happy to be in Atlanta closer to family. We have our own first slumber party this weekend with friends and the kids are spending the night at Grammy and Papa Joe's house while mommy and daddy act like fools. All this serious business we've been through calls for a little playdate of our own :)
Off to take 5 minutes to relax before one of my children needs me attention :)
A few weeks ago, I enrolled Lilly in gymnastics and she loves, loves, loves it. It's such an outlet for her to go somewhere and run WILD. She thrives on structure and the class provides just that. As I was watching her yesterday, I was reminded of how much she needs school and really enjoys the routines and structures of teachers. It's just her personality. She has a blast here at home playing babies and kitchen, but August will be fun for her when she goes back to school part-time. (I am currently watching her "read" to her baby that's in Emily's carrier-so sweet).
I know that Lilly is really happy to be near all her aunts and uncles and grandparents, especially. She begs to see all her Papas and never, ever, ever looks back when she has a sleep over at Grammys. She's out the door before I even have a chance to say goodbye. I remember staying over at my grandmothers as a young girl and it was so much fun! We did things that mommy's and daddy's don't do. Soon enough, Emmie will be flying out the door right along with Lilly.
Lilly also had a playdate this week with a new friend, Astrid, and she had so. much. fun. It was awesome for her to get out and play with someone other than myself and her pretend dolls. She conversates with them on a daily basis and it was nice to see her actually interact with someone else and see the joy the day brought to her. She's currently napping after wearing herself O-U-T!
Emily is doing great as time progresses! She's still working on strength and she's definitely stronger. When I pick her up out of the crib, she's much sturdier and not as floppy. You still can't carry her on your shoulder without her flopping backwards, so one hand is always a must. In addition, she still can't be carried on the hip-which I long for! Our therapist said not to do that anyways because it's not good for the hips (in kids with DS). Boo on that. She's doing really, really, really good with tummy time and is holding her head up for extended periods of time. She don't love tummy time, but I haven't met a baby that did.
Even with all the positives, there's always some negative to my week in the realization that I have a special needs child. Will I ever get over that and just accept it? I always seem to look for other kids with DS and judge them (because I'm known for judging). I just can't seem to help it. I look at height, necks, arm length, eye structure...and I wonder deeply what Emily will look like. At gymnastics class, there's another mom that has to bring her baby while her toddler plays and she's two weeks younger than Emily and at least twice her size. While the toddlers were playing with balls, the other mother had her baby on the mats, SITTING UP all by herself. Whattttt? We work tirelessly in the Bumbo and the Boppy trying to get some back strength and nada. No sitting up. No attempt. Falling only. Even though kids with DS meet their milestones much later, it's still hard to accept. It seems like I will always be judging Emily based on other kids. I know that I will stop, but it's only been 5 months of having her in my life. Do all parents with special needs kids go through this? I'm taking a class this Saturday on raising a child with DS and it helps parents understand milestones and what to look for (as well as coaching me on this damn Katie Beckett stuff). Later in life, there are even more battles to fight when Emily gets older. While this may be very aggressive, some parents actually have their kids tubes tied that have special needs. What if Emily goes off to special needs camp and falls in love with another camper and they do the wild thing? And she gets pregnant! It's highly unlikely considering those with Down syndrome are usually infertile, but it could happen. Some get a hysterectomy because they cannot manage their periods. WWWWHHHHAAAATTTT? I mean, this is crazy, right!!?? Despite how wrong I see these things as-they are realistic, and they are things we must think of because we really don't know what our path will look like 15 years down the road. We gotta think long term and short term. I'm stuck in the short term, but I think that's what I need. One. Step. At. A. Time.
Anyhow, despite all this thinking I've been doing, life is grand and Billy and I are really happy to be in Atlanta closer to family. We have our own first slumber party this weekend with friends and the kids are spending the night at Grammy and Papa Joe's house while mommy and daddy act like fools. All this serious business we've been through calls for a little playdate of our own :)
Off to take 5 minutes to relax before one of my children needs me attention :)
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