Thursday, October 20, 2011

Missing You

It feels like it's been FOREVER since I've been on when in all actuality it has only been 6 days since I posted last. Well I would have probably posted sooner or later but my mind has been elsewhere lately, which has kept me from writing. What better way than to write about what my mind has been consumed with, I MISS HIM!!!! There I said it lol now let me go on so I can vent and move on.

I may say it nonchalantly like it's no big deal but lately it's all I've been thinking about. I think about him all day long and some days it's easier than others to just get on with my day and not mope around but lately it's been sucking my brain away. I miss him all the time but when it consumes me sometimes I just don't know what I should do so recently I've just been on the move going to stores that I really don't care to go to or really need anything from, helpful was my neighbor when we went on an all morning extravaganza with the children and just let them run around, but I always end up here with my mind wrapped up in all that is him. It's mostly the little things that get to me, that end up adding up and filling my bottle. Things like Marley just walking, we all waited so long for her to do what she is doing now with no effort at all she works those legs as if it's what she has been doing for years. Or when Marley spontaneously says something that makes your heart melt like her signing "I love you" out of absolutely nowhere, or watching her play and talk, talk, talk words you don't understand. They are just the things you always wish to share with the one you love and coming from Marley it just means so much more because you know how hard she has worked to get to where she is now. Things that can get captured by my camcorder or camera yes but not being able to look to your side and celebrate the little things together sometimes just really kills inside. Going out to lunch sitting with your toddler and no one around to chat with over your meal, looking around and seeing people with their friends, boyfriend, or husband and still your there alone BLOWS!!! Not complaining I know what we signed up for just venting where my mind has been. Sometimes it feels good to just let go cry when no one is looking because I work so hard to be a strong wife and mom so Marley won't see me cry and not know what is going on, it always makes me feel bad every time (which is very rare) she stares at me with a confused look in her face like "mommy what's wrong". I stay strong for them because it is my job to keep it together and make sure things run smoothly but it feels good to let it out talk about it and not have to be strong even for just a second. SO here I am writing about it so I can move on to the next subject, task, or activity of the day.

Thinking of You Thinking of Me

I love you Daniel Brown you have taught me so many things in the years we've been together. I wouldn't be the person I am today without you. The strength I have and carry on the daily is all because of you. You do the most for us on a daily for us, for your country and you never complain or show pain. You do what you do with perfection and I have never known a man that compares to you. When times got ugly you kept it moving, when they got sad you kept a smile and it doesn't matter what it is that has happened or will happen because I know with you there, here, anywhere I have you in my heart and by my side no matter what. I can't tell you how much love I have for you words cannot express the amount of appreciation and respect I have for you. You Daniel Brown are the man ;) lol. One day were going to be able to look back at the sacrifice of time we've made and be able to sit back and smile because these few months/years we are apart will not amount to our happily ever after. I thank you for everything and appreciate it all that much more I can't say it enough. Taking everything just one day at a time, we all know life doesn't stop when someone is gone or away so as time passes things become easier and we "embrace the suck" as it comes and keep it moving the best way we know how.


It feels good to let it out thank you for listening :-)

Thursday, October 13, 2011

Days Out And About

Some days it's easier than others to find the motivation to get out the house and explore the beautiful island we live in. Whether it's a back yard exploration, a day at the beach or just fun at the park Marley is happy no matter where it is that we go or don't go. Now when I say some days it's easier to go out it is only because of my fear that has always kept us from getting crazy and adventuring every day. I've never been one to enjoy and embrace the outdoors; I'm what you would probably call a homebody. However since Marley just started walking it has indeed helped in our outings with just her and me. When she was younger I had extreme fears of germs or of Marley getting ill or hurt so in a sense I bubbled her a bit and never really tried to go outside of my own comfort zone. It was also a bit of a struggle because as she got older she wasn't completely mobile and parks especially aren't really very accessible for children with special needs so the amount of activities were always very limited to mainly the bucket swing. She has always enjoyed swinging as we used to do it all the time in the Lycra material provided by the therapist so even when going to the park that is one of the main spots we hit.

Going out on our own is a bit of a task it involves a lot of support and without the help of another adult it tends to be somewhat stressful. Marley still needs a lot of help and support when doing things and at times she wants to do things that I cannot help her do alone. Going down the slide for example is one, it can be done alone of course but with the help of another body it allows one person to guide her down and one to wait at the bottom just in case, there isn't much climbing of things like the jungle gym just yet those skills have not been formed just yet, and walking around is still a supported kind of thing depending on the surface.

Our favorite park we like to visit

While there it is hard to get pictures or recordings alone because I have to constantly be with her every step of the way (not complaining) some things would just be great to get captured. A back pack is handy instead of a diaper bag; I can fit more than just diapers and an extra set of cloths. In the backpack I carry extra activities just in case Marley gets bored we can pull out a blanket and sit down color, read, or practice signing. I also carry snacks or her lunch depending on how long we plan on being out. Her stroller can help with the storing of some of these things but it is also an extra accessory that turns into a hassle and being the only one there (not that anyone would steal it) you somewhat have to worry about your property and the things you may be carrying, because I'm following Marley so closely everything in my backpack becomes vulnerable. You may be thinking, "why don't you just wear it" and I do mostly but getting into the structures or following her around gets a little tiresome with a bag full of goodies and the sun out on blast. A lot of this may sound like excuses or complaints but like I mentioned before I'm a homebody so things like this require some mental preparation on my behalf to get out.

The beach is another task in its own Marley is a daredevil and will throw herself into the deepest parts of the ocean if you let her so being there solo can be a little hard as well when she gets a little wild in the water and try's to push herself off and away from you. This girl has incredible strength that at times makes her over power my little no muscle having self and walking on the sandy beach isn't the easiest thing in the world to do with her, yes it helps her build those leg muscles but with it being so hot and flip flops being a little different to maneuver I revert to just carrying her to make it easier for her and so she won't burn her little feet. Our outings always turn into a great experience after passing my own stresses but this is just me venting. I'm not looking for sympathy or anything like that, I guess I just had to admit to myself that it all really isn't that bad I just need to "man up"! :-)

When traveling I have to be well prepared Marley does not like being in the car. She gets fussy rather quick so in order to make our trips out I have to make sure I pack books or toys that she can play with or else she will cry the whole way there and back. My saving grace has been the portable DVD player which has kept her content ever since I started taking it with us. It may be a little sad to admit that Finding Nemo saves my life every time but I'm just glad something can help entertain her while we go out and about. Another thing I have to keep in mind while anywhere is her schedule. Marley has always been on a fixed schedule so anything we ever do revolves around that because like most people with DS they are used to that routine and schedule and when diverting from the schedule it causes irritation for the rest of the day, well at least for Marley it does.

The backyard is by far the easiest for me of course it being here and not having to travel anywhere. With the help of the OFF clip to keep the mosquitos from eating me alive our time in the backyard has become a fun activity  She loves the feel of the grass underneath her toes and tearing up the leaves and throwing them all around, this girl doesn't need any toys she makes her fun out of nature. She is also pretty cool to watch.

It is extremely cool to see Marley become more interested in kids her age and want to interact with them so going out to any place is fun to watch her learn and explore and as her skills increase it has definitely become easier to want to go out and do things and enjoy our time away from home. I'm practicing a little more and more each day to step out of my comfort zone because I know it isn't good for either of us to be inside most of the day and Marley truly does benefit in going out. It is wonderful stimulation for her to go out and see people and interact with others as much as possible. I've been learning from Marley since day one, she makes me a better person each and everyday and so in becoming a better me I know what I need to do, not just for me but for her and it's a beautiful thing to get out of the house experience and live life, so with that said GET OUT!!! :-)

Marley & Bella (her bff)

Monday, October 10, 2011

Marley's Therapy Adventure

Boppy/Tummy Time
Let me start at the beginning well I want to say this was the beginning its hard to recall when the real start was but I will call the Boppy/tummy time the beginning. So any who as I mentioned in the Marley section I took her into our local Early Intervention program when she was just 5 days old, now being that she was only a tiny little baby there really isn't much you can do therapy wise, they did however offer suggestions and support if there was any concerns with feedings mainly seeing that other than sleeping and pooping babies eat so for the first few months that was therapy and of course tummy time. So after the crazy time (OHS time) the "REAL" started :). All of Marley's main services started up. Her PT (physical therapist), DS (developmental specialist), and a little OT (occupational therapist) started coming out to our home. Now that was an amazing thing offered from the services they were free and home based and I couldn't have been any more grateful than I was, but back to the "REAL" Marley's PT suggested proper positions to encourage while Mar is just hanging out or whenever we got a chance to just post her up like the first picture shown and I cannot tell you how long it took for us to get Mar to post up with her head up like that. Children with DS are born with Low muscle tone and every child is different and every case of DS is different and unique and so after Marley's OHS it took us a while to get back on track because of her recovery and so step one was to get her comfortable enough in this position to build up enough muscle to get her to roll over now that in itself also took quite some time but Mar has always worked really hard and has never failed to amaze us when she finally builds up the strength and courage to do what she knows how to do best. :)

BUMPO TIME!!! Marley was probably closer to sitting up before the whole rolling over tummy time phase she has never been one to like the whole tummy time aspect even now she prefers to just sit so the bumpo also provided by her PT was GREAT! I would suggest it for any baby really no matter what, they are great! So the PT was coming 2x a month and always has with a weekly option to see her at a group therapy session with other children in the Early Intervention program and my favorite not only my daughters DS but an AMAZING friend of mine Tanja Ford started coming weekly and I cannot begin to tell you how much I have learned from her. She has so much experience and knowledge and has worked with Marley better than anyone I have ever seen try. There is something I haven't shared about this cute lil thing and that is that she is one stubborn child. Now most are but there is this special spice Marley has that not many are able to see but Tanja never gave in and never let Marley own the situation because if you let this girl win she knows she can get away with not working to her potential. With every task provided Marley worked so hard to do and with each task came a lot of time offering the opportunity over and over again and with that Mar NEVER does anything until she is 100% sure she has it down but with Tanja, our PT and myself working with her she always did her best (tried to get out of it with tantrums but none the less). So back to the bumpo great tool to help build her core strength and we did a lot of focus on teaching Mar to bring her arms to mid-line to build up strength in her arms and shoulders. It was an awesome tool for her therapeutic journey.

Lycra Fun
OMG!!!! The Lycra is the most amazing piece of material ever invented!!! Not only does it feel awesome but it has many purposes. I cannot begin to tell you how much this piece of material helped in this adventure. We did a lot of work with Marley in this great piece, not only did it help assist in helping her sit up without the use of the bumpo but it helped her gain the confidence to roll over all on her own. It has very many fun purposes as well along with rolling her over in it we still are able to swing her in it and bounce her too. With the motions she uses while in the Lycra she is able to push off using her arms and legs building those muscles up and is also able to build up more core strength while sitting up in the material. It's a great therapeutic piece of material and would recommend it to anyone.

Big Girl Toys
The last set of toys or helpful objects on Marley's therapy adventure have been the ride on/ push toys. Never saucers though I've been told by many that those have never been useful especially with children with DS, they tend to promote bad habits and end up being contraptions our little ones depend on. After working those legs so hard by standing in one of those sit ins the kids are able to just plop themselves down and are able to sit as if nothing ever happened and so to take them out of the contraption and not have that same result outside of it leads to a dependence in it and a lack of wanting to do the rest of the hard work themselves and so NO saucers people!  But the ride on toys where they are able to work those little leg muscles and push themselves around are great! They allow the child to be able to push down on the feet and extend those legs and build up those muscles needed to walk and such. Marley was never crazy about it mainly I think it's because she knew what our angle was and she knew what we were trying to get her to do. It was a fun process though and as soon as it wasn't we pulled her right off and moved on to another activity so she wouldn't grow resentment towards the toy. Now the toy shopping cart was always good times. We were able to make a lot of fun activities using this toy and getting her to push and walk around with it. One of the activities Marley enjoyed was "shopping". We would place different objects throughout our home and push the cart and pick them up and when the cart was full we would drop them off at "home", in her room. Sometimes the game would last long enough to get all the way there but again sometimes she would figure it out and know we were working her out. This activity allowed Marley to walk assisted and work those legs in bending down to pick objects up and put them in her cart also giving her more than just one task to work on. With a lot of hard work on her behalf, patience and consistency Marley has always been able to accomplish and exceed the goals set out for her, they may not all happen right away but again with consistency on our part along with routine she is able to do everything and much more. We are all so proud of her, she has come such a long way and is now walking on her own more and more as the days go by her scooting/crawling on the ground has become something we see less and now she is just walking her little legs off. A big girl indeed 

Sign Language 
Now that you have heard Marley's gross motor adventure let us talk about her communication skills. Marley has always had a lot of love for books. I wouldn't call it an obsession but it's an extreme love for them and she may not let you read every word of it but she will sit there for hours reading it to herself or just flipping through the pages really fast and moving on to the next. When speaking to her even as an infant she was always so attentive, babbling and listening to everything anyone had to say. Along with many things delayed in our kiddos communication is also one of them and so Marley may not be able to form sentences for years so what better language than Sign. A beautiful, amazing language that I have come to love more than I ever thought I could. After finding out the benefits of ASL I took it upon myself to take a few courses in it at my local community college and 3 semesters in I look forward to continuing on in the future. I've always had love and a fascination for ASL and was beyond excited to get a fire burning to finally get involved with it, but back to Marley, I couldn't think of a better way to ease a potential frustration barrier or help her any better than to teach her an alternative way to communicate. Since she cannot get things out verbally she is able to tell us exactly what she wants with the use of her hands and slowly she is starting to pick up on actual words. She may not be able to form sentences but with the use of simple signs for example water, cup, food; she is able to tell us what she needs. I am excited to continue teaching her ASL even after she is verbally communicating and I am happy to share that to date she has over 65 words. Marley is taught by repetition and consistency. I would show her a picture of the object or the actual object and then repeat the word and the sign simultaneously, she has always had the skill to pick up on the word and they all just went on from there. At times she would enjoy the Signing Time videos but she is mostly a hands on kind of girl but every little bit helped. Below is a video taken some time in April of this year of Marley showing most of the signs she knew back then, we didn't hit them all and as time passes her knowledge and skills increase by the day. In the video it shows her skills at 16months, the opening page says 7 months as a mistake I made while forming the clip and I haven't figured out how to fix it so excuse my mistake and enjoy the few minutes of Marley showing off. 

Marley's Signing Video

I didn't touch base on her fine motor skills or eating much but I'll just give you a quick low down. Marley has always been an amazing eater and being the stay at home mom that I am Marley's meals were always 100% organic. I would steam and puree everything that baby ate and when it came time to make the food with a thicker consistency it was never a problem. Finger foods became a pro food eating experience, it's like she had that little pincer grasp within seconds she loves food so much. We did run into a chewing hiccup where it didn't seem like she was chewing any of her food but as soon as Tanja introduced a pickle Marley had it down so fast there was no need for an OT really.
I also wanted to discuss the "we" when I write. Everything Marley does she does it on her own time and on her own free will "we" might be the ones guiding her along and teaching her but she is the one that deserves all of the credit because she is the one learning and putting in all the work to get where she is now. I don't want it to seem like no one else deserves the credit but I'm sure you know what I mean. I appreciate everyone that has helped her every step of the way. Now the "we" includes everyone in Marley's life that has been there for her including her therapists, friends, and family most of all she wouldn't be able to learn all that she knows without our help and support so thank you all for all that you do and still continue to do and you know who you are. :-) We love you so much and appreciate everything you have done in our adventure that continues on today. I can continue on and list the many beautiful people that have been there and continue to be a big part of this journey but you know who you are I mention this again and so Marley has nothing but wet besitos for you all. 

Thursday, October 6, 2011

Mini Rant

Okay I may have to go on a small rant right now after running into a blog post on a clearly tagged Down Syndrome topic page. Alright I don't know why but some people seem to think using the "R'" word( it being the word Retarded) as a go to word when discussing certain things. Now I'm not going to pretend I'm miss high and mighty and have never used the word when speaking but not until it was pointed out to me did I realize how ridiculous I sounded using it. So I will go on this minor rant for those who were like me and have never realized they are using a very offense filled word. Being a mother to a daughter with a disability I know this word will be used to describe certain lack of abilities but to use it in vein is something a person should really think twice about especially if ever effected by it personally or not. There are other words you can use instead of the "r" word, use dumb, use stupid, use ridiculous but don't use the "r" word. People do suffer from mental retardation and it shouldn't be used against them seeing that it is nothing anyone has control over. So for a person to use it without knowing the meaning behind it sounds out of line. The word seems to roll off the tongue easy or something because its not just people in your every day run ins that may be using it but the word is ALL over television used jokingly and in "funny" situations like "don't act "r", or "you look "r", and seriously I'm some what surprised people think its so funny, BUT again you may be one of those people that like myself and have never realized your choice in words and I know I've been one to point it out to friends and family and it was never a word used to be made offensive so everyone has understood. I would never want someone to use that word when describing my daughter and I have no idea why it has never been made known to writers or producers all around the world seeing that there are so many different types of Intellectual disabilities and levels or forms of them that more people haven't stood up for what they believe is right by it. I know I may not be the only one offended by it and I'm sure people have tried but for all of you who know me or don't and remember ever using the "r" word just think twice maybe in the future and if you have friends that happen to use this word in your presence if you could just point it out to them because they just may be like us.
It is October and also the month where we celebrate all those who have changed our lives in the most positive way and try and share it with anyone and everyone. It is Down Syndrome Awareness month and if I can post this and get even just one person to pass on the message of using the "r" word I'm a happy camper. DS is a chromosomal defect in the 21st making the out come of chromosomes 47 instead of the usual 46, causing differences in appearance and the way of learning. The severity range from mild to high in the abilities of those effected by there extra chromosome but no difference should it make to those on the outside looking in. Those effected by DS see the world none of us will be able to, they are able to do other things we will never be able to do and they are happy always fun, loving individuals that don't need anyone's pitty just understanding. Though they may not be able to function the same as a person with 46 chromosomes they are still beautiful human beings that deserve all the respect anyone gets regardless of having an Intellectual Disability. For all of you who didn't know now you do and for many who still use the term mental retardation that is the clinical term to use but its synonym is Intellectual Disability so if that helps reduce the use of the "r" word in vein I'm glad to share it.  Below are some links for those of you who may not know about DS or if you are interested in more information about it.

(I Feel Better lol)

Sparks, NV Buddy Walk 2010 :-)

 National Down Syndrome Society 
Kids Health
Down Syndrome Facts

Monday, October 3, 2011

Paitiently Waiting ...

So I'm not gonna lie and say its easy to be away from the love of your life for long periods of time not like anyone seems to think think that but after a month or two you sort of get into a routine. You start doing things more and more on your own and gain some sort of independence I suppose I'd call it and things get easier. You start becoming less afraid of going out on your own and I guess in some ways become a single parent. You always look forward to the hour when you know he's going to call, wait for the days you think he might have off and anxiously wait to see him even if its just a few minutes on Skype and then your days just go on from there.

Its a day to day basis with this kind of situation because you never know what to expect and you have the back of your mind running a million different things that can go wrong. Its also on a day to day basis because some days you can wake up and know your just one day closer to seeing him again and other days you wake up and he's not on his side of the bed and your heart just melts... Its hard the days you wake up and realize you truly are alone because you know your best friend is on the other side of the world and you do things wishing he was there, but then you remember just why it is you have decided to do the things your doing not individually but as a team. You both have decided what is best for the family and what sacrifices you have to make to be able to get where it is you want to be. There are definitely pros and cons to any decision made when it comes to decisions of the home but that is why you are a team and not one person can be stronger than the other because if one person is not confident in the decisions made the whole dynamic can and will change and it all ends up a messy situation. I am thankful for the partnership, relationship, marriage and bond that I have and I can say with pure confidence that we are making the right choices and appreciate all the opportunities but I can also say I have never missed someone so much in my entire life.

My husband Daniel Brown is currently working as a civilian contractor over seas. Currently he is stationed in Afghanistan. The first time around he went from Afghanistan to Iraq then back home after 5 months. His stay at home was short well to me it was short it lasted 4 weeks and then just as soon as he came he left again. So this time around it will be longer than the last he is not expected to be back until probably March or so and I can't say I never expected this to be the way it is you see Daniel (Boon, Cain all different aliases) is prior military Navy to be exact and some part of me has always felt that once you've served that is where your mind is you become a different breed of human, you see things others don't and you are trained to be who you are. Now in the whole time I've known my husband it never mattered what job he did he has ALWAYS given more than 110% in what ever he does he works hard and it never matters what it is he is doing whether it was changing tires, patrolling security, or  putting out fires in the Sierra Mountains he does his best BUT these are all civilian jobs in the civilian world where the structures are not the same and peoples work ethics are different and so being as miserable as he was making ends meet when this opportunity came along it couldn't have come at a better time and been more meant to be than it has been. The time we spend apart will all be worth it in the end we are sacrificing little to gain for the bigger picture to be where we want to be and to be able to do things we want to be doing.

After Marley was born things changed fast I was not able to get back to work because of the unexpected turn of events Marley needed me and he has always done the most to make it so I could be a stay at home mom and I am beyond grateful for it all. All though I cannot have him here everyday I know when he comes home I can have him 24/7 with his undivided attention (aside from the Xbox who I compete with lol) and our time spent together is something words cannot describe. I know there are thousands of military wives that have their husbands go out on deployments and wives who have husbands like mine that although they aren't military they still go out there and do what they have to do so the military can have all the things they need to make their jobs easier and possible, I am not alone when I say some days just suck and others just fly by so until the days get closer and until I can start my official countdown to his return I will sit here patiently waiting...

P.S I Love You Daniel Brown Now Always And Forever! 'Till Death Do Us Part