Monday, January 24, 2011

{Dreaming of Heaven}

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I remember learning about heaven when I was a little girl.  I had this vision of a city on a giant cloud with lots of gold and a slight resemblance of Willy Wonka's Chocolate Factory -- you know the part where they all go hog wild in the edible forest like place with that chocolate river.  No one really knows what heaven actually is like, and I think God likes it that way.  I totally believe it is one of those, can't even comprehend it until you actually are there, type situations.  

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Today in the car as we passed Gavin's grave, as we do almost everyday, Madi asked me out of the blue if when she dies, will Gavin be old or will he still be three.  I love when she asks these questions -- they are so real, so innocent, so totally what faith is all about.  I explained to her that I just didn't know, and that no one knows, we just have to wait until we get there.  I told her that personally I would really love it if Gavin was just the same as the day we said good bye -- she happily agreed.  

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One of the many things I've learned as not only a mommie to now three cool kids, but also as a mommie who has walked this kind of path, is that there is so much power and healing that comes in just saying I don't know.  Madi has had so many questions since her brother's death, some of which are difficult even for a person removed from the situation to be able to think about.  I really feel like allowing our children to see us as imperfect beings -- not having all the answers and simply saying I don't know holds a lot of power.  I have found that it allows Madison to create her own dreams and visions with of course some gentle guidance by Adam and I.  

Heaven has taken on a brand new meaning for me.  Instead of visions of chocolate waterfalls and streets of gold I now envision my little boy walking.  

Even better, I can almost feel his touch once again -- almost.  

Thursday, January 20, 2011

{Embracing My Inner Lunatic}

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This week my mind has been opened to the world of caring for a child with non-life threatening medical issues.  It sounds crazy to say, but I think caring for Gavin and his intense ICU level needs was so much easier.  I've spent the greater portion of the week making phone call after phone call, faxes and emails and so many times I've been sent on little side trails that only make getting to my goal destination more complicated.  Things are readily available to children who need then in order to survive -- but I have to question --  shouldn't a little girls quality of life be just as important.  I know I could get so many different opinions on this matter but I feel like I have the right to question -- since I've now walked both sides.  

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The word lunatic keeps creeping into my mind this week -- mainly because after making phone call after phone call -- and getting nowhere I begin to feel just like that -- a lunatic. 

So I looked it up.

One definition of lunatic is, widely foolish.  Oh. My. Gosh. -- that is totally me -- and I like it.  After all, I think we all have a inner lunatic waiting to come out in one way or another.  In the world of special needs and medically fragility, being a lunatic can really be a key element in your success.  I'm learning that it's just not about persistence -- but pushing the limits.  Just because it written this way and stated in that way means that it is accurate or best for your child.  Before entering this world both with Angela and Gavin I remember taking my doctors/therapist words like gold -- truth is, they are just humans walking the same streets as us and eating the same food we eat.  I've learned that the best docs/therapists don't want to hold our hand but rather push us to walk along side them in giving our children the best life possible -- taking diagnosis and keeping them just that -- a diagnosis and not a determination of life.

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So today I'm embracing my inner lunatic and allowing myself to dream things for Angela, Madison and our family that the medical/services world may not assume to be possible.  

Enough said.


** Might I just add that obviously these girls are worth it all!

Monday, January 17, 2011

{Seven Years}

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Seven years seems like a lifetime but I guess in reality it hasn't been all that long.  I remember those early years with Adam and it totally makes me smile.  I remember all the silly things we would do -- just to be together.  We would sit in his apartment until all hours -- little did he know that my bottom was so sore from sitting and I was totally bored -- but I didn't care cause he was my man and I wanted to be close to him.  


Most people don't know this, but Adam was my first and only love.  My first kiss came from his lips and well he was the first person to make me drunk with love!  We just fit together.  We are total opposites in so many ways -- he wrote out his wedding vows, and well I Googled them -- but we still mesh together and make an awesome team.

So much has happened since this day seven years ago.  So many people wonder just how we have stayed so strong with all we have been through.  I don't really know how to answer that other than we just took what life handed us and make it awesome -- even in the most difficult of times.  We certainly have been though difficult times but we made the commitment to stick with each other through thick and thin and we did just that.

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Our culture makes out marriage to be this amazing dream that never has it's valleys -- only breath taking highs.  And if by chance one would get even a taste of the low times, the marriage for sure must be doomed and ended.  This is totally a messed up way at viewing marriage or any relationship for that matter.  People need to remember that even in the valley's there are still so many mountain highs hidden in the pit.  It's just a matter of working hard to see them and holding on to the hope that we will be standing high once again.

I'm far from a relationship expert -- and I'm sure Adam would agree that I'm the difficult one in this marriage, but what ever we are doing right, I certainly don't want to stop.  I consider myself one of the luckiest women alive.  But then again, I guess I'm not lucky at all but rather so loved by God that he would place a man like Adam in my life to love me, guide me and lead me -- to walk beside me in the happiness of life and also hold me tight in the sorrowful of moments.  

I love you Adam -- don't ever change, no matter how much I make fun of your electric slide, your crazy roller skating and all your other "Adam ways". I love each and every one!

Saturday, January 15, 2011

{Special Needs iPad 101}

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Ok so, I'm certainly not the expert on using the amazing technology the iPad has to offer little ones with special needs but I'm learning quickly how it can revolutionize a child's life who has impairments such as our little girls.  This winter Angela was given an iPad by an amazing blog reader who just wanted to simply give with no strings attached -- how awesome is that?  I'm kinda wondering if she knew just how much this thing has changed Angela's life?  It's just pretty darn cool.

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This first thing that makes the iPad so essential for Angela is that she has severe vision impairment due to Cortical Visual Impairment, which was either the result of her birth issues or also could be in part to her genetic condition.  No one really knows.  Either way -- we know one thing -- Angela can see light. She doesn't perceive it in the same way we do, for example she can stare into a light source where people with normal vision would naturally look away.  Anyway the iPad offers a brightly lit screen, which she seems to be able to see rather well, as has been demonstrated in her ability to track the iPad across the room and also sense when someone else is playing with her very cool toy.

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Since she can see the iPad her world is opened up on so many levels.  So much development comes from simply seeing.  The whole concept of cause and effect, spacial reasoning, speech, among so many other developmental keys are hindered when one cannot see the world around them.  So now that she can see the iPad screen, her development, though on a bit of a detour, can use this tool to continue to move forward.  So many children with CVI and other visual impairments use a light box -- well the ipad is essentially a much more portable light box, especially with apps such as flashlight, which simply is a plain white screen, with the option of changing the color. Of course there are so many other great apps that we use, that utilize that great white screen such as Baby Finger, which also gets her hands moving and helps teach cause and effect -- and also provides a great range of sounds including Madison's favorite the farting and toilet flushing.

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Then there are the wonderful communication apps.  These range from the most basic, which we use, due to Angela's age and cognitive level, to the most amazing app Proloquo2go, which mimics a program used for many years on other assitive speech machines, which cost over seven thousand dollars.  We have been utilizing the Tap Speak program, which allows us to make prerecorded phrases and Angela hits the large button and will "speak" that phrase.  This is useful when in social situations where people ask her name and age.  Also, a friend gave me the idea to program prayers for dinner and bedtime so she can participate more in our daily family rituals.  This brand also has a choices program which we will begin to use at some point.

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Angela also enjoys all the fun apps like piano, drums and lost of books that read to her and other music games.  Little does she know that every time she touches the iPad it has some sort of therapeutic benefit to her.  We also recently purchased an iPad mount for her new wheelchair, which I'll post about when we have it and have used it.

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I think I could go on and on about how great the iPad is.  Socially it's cool, which sounds kinda vain, but considering our poor kids with special needs often have to carry around huge honkin ugly pieces of equipment -- it's just kinda cool to be the envy of other typical kids.  Of course this new technology doesn't replace all the other things that we need to be doing with Angela -- the hands on, down and dirty therapy, but this is a great place to start.  It's gives her some independence -- the ability to play and see, which make this mommie very very happy.

Wednesday, January 12, 2011

{Taming Mommie Bear }

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What a crazy few weeks it has been.  I have had so many moments where I just really wanted to sit down and write -- let my mind deflate, but it's just not happening right now.  This week both girls began their swimming lessons at the Spring Valley YMCA.  I've done many posts before on just how amazing this place is.  Their facility is totally handicap accessible and they staff is willing to do what ever it takes to give families with special needs children a chance to just simply be a family -- having all the same experiences the rest of the world enjoys!

Angela had her lesson on Monday and she did just great!  She loves the water, although she tends to almost be a little too relaxed.  We would like to get her to the point where she realizes just how easy it is to move her muscles in the water.  Thanks to some good friends I was told about special neck rings or collars made just for little ones like Angela.  The ring can provide the support she needs for her head and frees up mommies hands to help her move her arms and legs and get the full benefit of the water.  Her ring came in yesterday and it was amazing.  It was great to put her in water where she could "stand" -- or at least feel the pool floor on the bottom of her feet with help from me pushing her tootsies down.

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Then there was Madi.  Madison has always done great in the water.  She has never taken lessons but can swim pretty good.  The only thing is that she doesn't exactly swim to "swim test standards".  After her lesson her teacher came up to me and said Madi wasn't ready for this level swim class and that I should put her in the next class down. Well, I was a little taken back.  I look back on the whole conversation and I just have to chuckle.  It was no big deal.  I know Madison can not swim the entire length of the pool freestyle, yet mommie bear emerged and I got so defensive.  It kinda makes me smile is some ways and also want to kick my self in other ways.

I want the best for my little girls. But I realized something yesterday that I really need to work on -- I need to embrace my children's weak areas.  If Madison sees that her weaknesses are totally cool with mommie, she will see that's it's really no big deal if she isn't the best at something.  Self-confidence is so tricky.  I want to push her to be the best she can be but also I want her to know that she is perfect just the way she is.  If she never excels in athletics, which, if she has my genes is a real possibility,  than that's just fine with Adam and I.  Not only is she wonderfully made in the eyes of Adam and I but more importantly I want to let her know that God sees her as a beautiful creation -- both her weaknesses and her strengths.

For now I need to make sure I keep the mommie bear in check.  

Tuesday, January 4, 2011

{New Year -- Here We Go..}

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I've got nothing deep and inspirational to start the new year off with, only the stories of my sweet little ones, who inspire me each and every day!  We were all ready to start the new year out with a nice beautiful routine, however yesterday, which marked the end of Christmas vacation, Madison got sick and has been home from school, extending our vacation, with the addition of an nasty ear infection.  In a way I kinda think this was needed -- Madi needed some extra attention and, well she got just that.

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Angela is doing great!  This past week we took her to duPont to the seating clinic and had her fitted for her very own wheelchair.  She currently is using Gavin's first wheelchair -- the Kid Kart.  This has been and is a great chair but Angela's positioning needs are much greater than this chair provides.  It was recomended that instead of purchasing another push cart type chair we should just go ahead and get a full wheelchair.  There were two reasons -- the first is that a standard wheelchair can offer much better support simply becasue it is made of more steel and can hold positions much better.  The second was becasue typically around the age of 3 or 4 children size out of the smaller chairs.  Eventhough Angela is very tiny, we expect her to grow and don't really want have to go through the process again anytime soon.

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We decided on a chair very similar to Gavin's power chair, minus the power of course.  Madi helped pick out the hot pink color and we decided to go with a custom head rest to help with the wear and tear on her beautiful hair!  I'm really excited to get the new chair in -- which can take up to four months.   Long wait, but we know it will be worth it.

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As you can see in the photos we also have gotten Angela's awesome new stander all set up and fitted to her!  Thanks to a friend whose son progressed way beyond needing this peice of equioment -- Angela totally loves it and will stay in it for ever if we let her.  We have seen a major expolsion in the use of her arms and hands when she is upright in the stander.  We still have some adjustments that seem to be needed but I'm thinking as she grows she will fit a bit better into it.  Most people don't realize this but the stander's benifits goes way beyond helping a child gain leg strength.  The body was designed to be upright -- without time in this position things like bone health and density can take a huge hit.  Being upright also is extrememly helpful in digestion along with basic development.  Just imagine if you only viewed the world lying on your back -- throw some major visual impairment in there and you can see how being in this position all the time can cause some major developmental problems.

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Things are going amazing but I would be a big fat liar if I were to say that I'm not completly exausted!  People forget that adoption is often just like having a baby - even if the child is not a baby per say.  I've found that I've had all the same typical emotions that a mother experiences after birth -- both the up's and down's.  It's a huge change in life style and it's taking some time to readjust.  Eventhough we have done this before, Angela is a new different child!  She needs constant one on one, which doesn't suprise me at all.  Considering her physical impairments and also the visual aspect -- keeping herself entertained is very difficult.  She has made some great progress, but still needs the world brought to her compared with normal toddler who can explore his or her own world.

So I'm trying to figure out this whole new world again -- I'm trying to figure out ways to take good care of me so I can be the best mommie possible.  I need to get my butt back to the gym and revamp my writing and photography -- not as part of some wacky new year's resloution but just back to the normal routine, plus one amazing child.