It's a sick, twisted world when money is the only thing that stands between a mother and her children; when money is the only thing that stands between children having a life and not having one. 

Sad.

Sick.

Devastated.

Defeated.

iMarissa

All of us are born for a reason, but all of us don't discover why. Success in life has nothing to do with what you gain in life or accomplish for yourself. It's what you do for others.    ~Danny Thomas

Many months back, I made an announcement here that Marissa was named as one of 40 recipients of an iPad through a 'contest' hosted by another blog.  Without drudging up all of the ugliness that has ensued over the past several months surrounding this 'contest', I'll just say that the promised iPad was never received.  I have no idea the real circumstances and although I have my own personal feelings and suspicions on the subject, I'll keep them to myself because I am no more qualified to act as judge and jury than anyone else.

Anyway, back to the purpose of this post.  Some other contest 'winners' decided to take it upon themselves to right some wrongs and single-handedly restore the faith of the special needs community as a whole and created Mission iPossible.    This group of folks is truly amazing and took on this task with nothing to gain for themselves.  They had no idea how they were going to do it or how long it would take, but decided that their mission was to get an iPad into the hands of every kid who was promised one and whose family still wanted to proceed.  Selfless - yes!  Compassionate - yes!  Crazy - totally!  Ken, Heather, Maureen and Darcy have given birth to something big and I don't see it ending with these 20 iPads.  Recently, they have also partnered with The Gwendolyn Strong Foundation, another incredible organization dedicated to improving the lives of others.

Honestly, I didn't expect to receive an iPad for Marissa, at least not for a very long time.  Not because I didn't trust Ken and crew.  I just couldn't imagine four people getting together on a whim and making this happen.  Heck, I know how hard it is to raise money.  I know how hard it is to try and convince people that what you're doing is worthwhile and important.  It's nearly impossible.  Truthfully, being a small part of this mission (as a recipient), watching iPads land in the hands of deserving children has meant so much more than getting something.  It has given me a renewed faith in humanity.  It has reminded me that goodness still exists in the world.  TRUE goodness - you know, people who not only talk the talk, but actually walk the walk!  Those people are hard to find nowadays.  I have 'met' some truly amazing new friends through this experience.

Well, this week, it was Marissa's turn!   I've pretty much been speechless since I got the email from Ken that funds were secured and Marissa's iPad was due to be purchased.  We all know speechless is something that I'm usually not.  It's "just" a computer, right?  To us, it's a door opened for ALL of our kids.  When I think of what this piece of technology might be able to provide for Marissa, Esen, Kamila, B & H with all of their unique needs; it brings tears to my eyes.  This is not something we would ever have been able to justify spending money on so it is truly an incredible gift!  I will admit, I'm a wee bit frightened of it - after all, we still live in the land of the free flip phones and yes, there is still a walkman hanging around our house.  No, we don't have an iPod, MP3, XBox, or any other type of gadget; heck we just finally bought a laptop less than a year ago!  But, we're eager learners and I'm pumped to find an 'app' that might just do the laundry for me!

So, on to the million dollar question - how do you properly thank someone who has changed the lives of your children for the better?  I don't have the answer yet, but knowing the Mission iPossible team, I think, for now anyway, this will suffice just fine:

Ethiopia Updates

Our dossier left Atlanta bound for D.C. on 8/4.  It usually takes 2-3 weeks IN D.C. to go through the translation/authentication process.  Then, it returns to Atlanta, gets checked over, packaged and sent off to Ethiopia.  On 8/17, yes a mere 13 days from departure, I got an email stating that our dossier was bound for Ethiopia!!  AMAZING turnaround!  THANK YOU D.C. folks for your expeditious handling of our paperwork!

Now, the panic is starting to set in.  We’re still not entirely sure how things will play out.  We are guardedly hopeful that we will still be issued a court date for November, but will not find out until after court reopens (tentatively Oct 15^th).  Notice could be very short.  We have SO FAR to go in terms of raising the funds necessary to complete the adoption process that some days, okay, most days, I feel completely overwhelmed and hopeless in that regard.  We have worked so hard to get where we’re at.  We have been blessed by the generosity of many.  Unfortunately, we have been chastised by more. 

Pardon me, for a moment, while I step up on my soapbox.  This is my blog, after all, and that means I get to write whatever I want.  People are entitled to their opinions and I'm fine with that.  Generally, I can let it go and bite my tongue.  However, discovering recently that we are not the only ones with these experiences, I have to get something off my chest. 

I’ve often wondered how anyone could look into the eyes of a child in need and not feel the desire to help.  I’ve wondered how people could turn their backs on loved ones or strangers in a time of need.  How could people be so content living within their four walls, ignoring all of the pain and suffering in the world.  I realized I used to be one of them.  Then, we set out on the path of adoption and my world was forever changed.  My eyes were opened to an entirely different world.  I began to see things more clearly.  I began to connect with many other families who, like us, were faced with many of these same adversities.  Over the years, I have been chastised, berated, and scolded.  I’ve been told in no uncertain terms that “if we can’t afford to adopt, we shouldn’t be doing it.”  To clarify, I’ve been told this ONLY by parents of biological children.  I can say with 100% certainty that not one of these parents walked into the hospital when it was time to give birth to their children with 30, 40, even 50 thousand dollars in their pocket – ready to hand over to officials when it came time to take their baby home.  Perhaps they could argue that they pay good money for insurance to cover that.  Well, so do I and so does every other hard-working American.  So, parents of biological children who have felt the need to educate ME on why I should not fundraise to adopt – you’re welcome!  I and every other insurance-premium-paying American are so happy that WE were able to help YOU foot the bill so that YOU could build YOUR family.

Now that I have that off my chest, let me say that overall, I will never complain about our adoption processes.  We chose this path of family-building.  None of the processes have not been easy, but nothing worth having in life ever is.  The path to each of our children has been unique, exciting, emotional and rewarding.  I feel so lucky to have met and befriended some amazing people along our adoption journeys.  I have grown and changed.  I have learned some extremely valuable life lessons.  I now have a firm grasp on what it means to have and to be a true friend.  I have learned that there are people who will stand by me and support me even if they don’t always agree with me – THAT is a true friend.  I have learned that blood is not thicker than water.  I have learned that I am a much stronger person than I ever thought I could be.  I have learned that true selflessness still exists out in the world.    I have learned that we can do without a lot of 'things.'  I am so grateful for these lessons.  I am so grateful for what we have, where we have come and who I have become.  I can’t wait to see where the rest of our journey will lead.    

I know that what we’re doing is controversial to some.  I know that some don’t understand and may not agree.  Those who love us unconditionally will continue to support us.  Those who don’t won’t and those are the people who we do not need in our lives.  Harsh, but reality.  Yet, there are virtual strangers out there who “get it”, who understand us, who respect us, because they have lived the miracle that we are living.  After all, how can bringing children from poverty and loneliness into a loving family possibly be wrong?

So, we press on, we hold onto hope.  We pray that we will find a way.  We know that we will not give up; we will not rest until all of our children are home where they belong.  Life in an institution is not life.  There are three children missing from our home, our arms, our family; and with the
support of those who “get it,” we WILL complete this leg of the journey.

THANK YOU to those who continue to hold us up.  THANK YOU to those who pray for us and for the health of our children.  THANK YOU to those who have shown us support - financially and through kind emails and messages when I've needed them most.  We couldn't do this without you! 

GI Marissa

Another specialist.....why not?  A couple of weeks back Marissa had a repeat swallow study and an upper GI to try and get to the bottom of her constant self-gagging, intermittent vomiting and decreased appetite.  The upper GI showed significant reflux -and we're not talking "oh we all have some acid reflux" kind of reflux.  We're ta

lking an esophageal-gastric sphincter muscle that just doesn't do it's job and stomach contents that have a nasty habit of travelling back up into the esophagus pretty regularly.  Of course, the acid can do a lot of damage to the lining of the esophagus if it's not controlled.  She's been on a medication to control the acid for 18 months.  The hands down the throat trick is probably her way of either trying to "push" things back down or get relief by forcing herself to vomit.  In any case - it is constant and just plain hideous!

Our meet and greet with her new GI doc yesterday went well.  I really liked him and am soooo pleased to have yet another phenomenal specialist to add to our list.  There is not one doc she has that I am not thrilled with - there's a lot to be said for that!  We've got one phenomenal hospital and one phenomenal physician group!  He explained in no uncertain terms that surgical repair for her was not without risk and he would absolutely not consider it unless this became a life-threatening issue; i.e., chronic aspirations caused by the reflux, severe erosion of her esophagus risking bleeding and rupture, etc.  He also explained that kiddos like Marissa who are significantly delayed and have a multitude of medical diagnoses, especially CP and neurological impairments are more affected by reflux, BUT CAN improve over time on their own as long as we control the acid production, manage their diet and follow other "rules of reflux." 

So, the plan is to completely eliminate dairy from her diet in an effort to allow any possible allergens time to leave her system, do an EGD in a few weeks and take biopsies of her esophagus and gastric lining.  Depending on what all of that shows, surgery in the form of a Nissen may or may not be discussed, but I'm thinking not.  She may need some tweaking of her medication and diet yet, or it could turn out that this is all just Marissa's self-stimulatory behavior of choice.

As with everything Marissa.....we wait.

Water Baby

Marissa's new port allows us the freedom of regular baths and she LOVES splashing in the water!

Wake-up Call

One particularly.....challenging.....day last week, Esen said to me "I wish I was Marissa."  I asked him why and he said, "because you love her."  I told him I loved him, too (as we do at least 100 times a each day), to which he responded "she gets everything and you pay more attention to her."  Ugh - knife, meet heart.

It is true, she gets more attention, she sees a million doctors, she has five therapists who see her weekly, she receives medication three times per day and requires pretty much constant one-on-one care during every waking moment.  Esen has matured far beyond his age over the past year and it is hard to remember sometimes that his is just a little boy who still needs to be treated as such.  That day, that moment was a huge wake up call for me.  We need to slow down, take a breath, lower our expectations of him just a bit and remember that he needs time and attention just as much as Marissa does, just in a different way. 

I know that his life as a big brother is going to be very different from the lives of his peers.  He so often talks about 'when Marissa is bigger and can walk,' or 'when Marissa starts to talk,' 'when Marissa grows up and rides her bike.'  Sometimes he gets that she is different, but definitely does not yet see the degree of her differences.  I think it won't be clear to him until they are both just a little bit older or until friends start to point out to him just how different she is that he will realize the impact her medical needs will continue to have on her and our family life.

That all said, I do feel a small sense of loss for him.  It makes me sad that he may one day look at her and wish she was different - wish she was "normal."  Yet, on the other hand, she gives him a great gift as well - the gift of acceptance, patience and understanding that other children do not and will not have.

So, for me, for us, it means we are not doing a good job right now of balancing.  I'm glad my little guy was able to verbalize this to me.  I'm glad I have a chance to address this now and not let it go on.   Yes, we are adding more children to our family.  Yes, the challenges will grow and yes, some think it is the wrong choice.  For us, it is not.  Children are not a mistake, they are not an accident.  We do not walk away when things get difficult, we don't shy away from challenges - we face them, deal with them and move on.  The new kiddos will change our family dynamic for sure, but I believe the change will be a positive one.

Today was a perfect rainy day and the perfect opportunity for some Esen and Mommy time.  We went to see The Smurfs (a super inexpensive 10:00 a.m. show) and then to WalMart for Kindergarten school supplies.  It was so fun and Esen loved having 100% of my attention.  He was pretty squirmy during the movie, but there weren't many people there, so it didn't matter much.  I LOVED The Smurfs growing up and the movie was really very cute!  I opted to take him to the early morning, non-3D one because I didn't figure he'd use the glasses anyway and I wanted a smaller crowd for his first theater experience.  School supply shopping was pleasantly brief and fairly inexpensive.  I haven't gone through his fall/winter clothing yet and I know he'll need a few things, but I don't think it'll be too much.  The list sent out from school was quite short and my frugal, reasonable, fiscally responsible son decided he didn't need a new backpack or a new lunch bag because "the ones I have at home are just fine."   I LOVE HIM!!

Esen got a big kick out of finding the items himself and checking them off his list.  Kudos to the Elementary School for putting the exact pictures of the desired items next to the descriptions for ease of locating!  I can't believe that in less than a month my 'baby' is going off to Kindergarten!!

Nap time??

This is pretty much what happens at nap time around here lately. This goes on for about 20 minutes and then she wants out! It's cute, yes those are giddy squeals, and at least it IS 20 minutes that I can sweep the floor or throw in a load of laundry. Sorry, not much to look at - the video is more for the audio. :)

Getting It

It was another "routine" trip to the hospital today for Marissa and I.  We do them all the time, nearly every week or sometimes several times a week for one reason or another.  Sometimes it's just a clinic visit, sometimes it's for an outpatient procedure, sometimes we're there to stay a while.  In any case, every time we go, we experience something new and I learn a little.  Today was a kind of a big one.  Today we entered and registered through the adult side since Marissa was just having an upper GI and swallow study in radiology. On our elevator ride up, I was greeted by a mom with a very rambunctious what I assumed to be two-ish year old boy. She looked at me, looked Marissa up and down, and said flippantly, eyes diverted, "nice custom stroller - wish I could afford something like that for my kid."   I politely informed her that it was, indeed a wheelchair, covered by insurance, and that my only wish was that my child would be able to walk someday and wouldn't need it.  Then, I kissed my daughter and politely exited the elevator.  I get these comments all the time and for some reason they bother me more and more.  I shouldn't care what people think and normally I don't, but when it comes to Marissa, comments upset me more. Why do people feel the need to open their ignorant mouths?  Did their mothers never teach them that if they didn't have anything nice to say to say nothing at all?  People don't know what Marissa has been through.  She deserves respect and she doesn't get enough of it.  People still call her a baby, they (strangers) still come up and touch her, it drives me crazy!  I've talked about this before it in a post called Secretly Disabled. 

I digress.

So, blood boiling ever so slightly, we headed off to radiology where we found our usual spot in the far corner of the pediatric section of the radiology waiting area (as far away from everyone else's germs as I can get her) and there was one other mom and her daughter in the room.   The mom was, I would guess, in her mid-late 60's and her daughter in her mid 20's.  She was in a wheelchair, had spastic CP and was significantly delayed.  I couldn't help but watch this mom, the way she very gently placed her daughter's splints on her wrists, they way she fluidly stretched and exercised her muscles, they way she stroked her hair, the loving way she wiped the drool from her chin.  I was in awe over how slow and patient she appeared, how softly and kindly she touched and talked to her.  Then, it hit me.  She has likely done these things every single day for over 20 years.  I can only assume that she rarely, if ever, has trusted anyone else to these critically important tasks.  She will never be an empty-nester, she will always care for her "baby".  Other people in that waiting area saw her and no doubt felt very differently than I.  Pity is the word that comes to mind.  I don't believe that mom has ever felt pity for herself or her daughter.  I don't believe she has ever looked at her beautiful girl as a burden, but rather as a gift.  She looked over at Marissa and me a few times and smiled and I know she knew.  I am her twenty years ago.  I recognize that look.  It's a quiet, personal glance shared between parents of kiddos with needs, an unspoken understanding that says "I get it-you will be okay".   We may be strangers, but we are living a life that few understand and we can look at each other and at each others' children and see things that the average person doesn't see.  I have no doubt that she looked at us and saw the scars, the nystagmus, Marissa's McKee and AFOs, her CP posture, her wheelchair and she got it immediately.  I have seen parents in clinic and in the hospital and a few I have talked to.  I have given "the look" to some who needed it and I have received "the look" a few times when I needed it.  It's amazing what simple understanding can do for the soul when you feel all alone.

I looked at my little girl who has gone through so much and who, at times if I can be brutally honest, has pushed me to the brink of patience lost; and I want to tell her that I am in it for the long haul.  I will never turn my back on her.  I will be by her side until I take my last breath and I am okay with that.  I understand that she will likely not leave home to go to college or get married.  I understand that she will be with us forever.  I understand that will not be empty-nesters planning vacations and moving to a condo.  Our lives will forever revolve around caring for our child.  A burden?  Absolutely not!  An incredible, amazing, beautiful gift!!

Our Little Hero

We've always said it, but it's nice when others recognize it, too.  Marissa has been recognized as a Little Hero through Inspiration Through Art (formerly the Little Hero's Project).  As such, she'll be receiving a photo shoot by local photographer Michelle Allen.  Michelle has so generously offered to not only photograph Marissa, but our entire family AND give us a CD loaded with images AND the copyright so that we can print the images!  We are so grateful as it just wasn't in the budget this year to get our annual family pictures done.  After the shoot, Marissa will be written up on the Inspiration Through Art website so that hopefully her story can inspire others.  We're humbled and honored to have received this gift for Marissa.