Thankful

As we sat around the Christmas tree, with my Mom and Dad and my family, I could not help think at how blessed my life is.  I have two beautiful children who were in awe when they came downstairs to see all the presents that Santa had left for them.  I have a husband, who I literally could not live without, he is my everything.  My parents, who traveled in snowy conditions just to be part of our Christmas day.  I was truly thankful for the gifts in my life, and the most precious ones were not under the tree, but surrounded it.

The last couple of days have been very out of the ordinary for me.  Ever since the story aired on the news, we have received an outpouring of support from so many people.  I have watched my Facebook page blow up with likes and I have been getting emails from all over the world reaching out to us in many different ways.  It has blown me away.  What I thought would be a local news story was apparently sent to other news stations across the country and the response is overwhelming.  When I clicked on the link for the news story, I saw the title and the most beautiful picture of my son.  I was in tears before I could even read what Anistasiya Bolton wrote.  I thought it was a wonderful article and am grateful that they did it so well.  Chris Hansen did a great job of capturing my children.   I am so grateful to all that have read my blog or my Facebook page and contacted me with kind words, or a picture or an inquiry of how to send us something.  I really am overwhelmed by people’s generosity.  I know that our local news station 9news KUSA, has dedicated a portion of their news everyday to showing positive, uplifting stories about our community and I am proud that we were one of their stories.  I love knowing that they are showing the good in our community, because there is so much good out there.  I was at a place were I did not believe people cared anymore, but I now know that they do.  I have felt the love and it is so heartwarming to know that people are good and that they care.

We have had people we don’t know bring gifts to our house for our family, we have had another family offer to donate a vision reader which is like the one he uses at school so that we have a tool at our house to use with him for his school work.  I am blown away!!

Words could never adequately describe exactly how I am feeling, only thankful.  Thankful for all that read this and spread the word, or send a card, or even just think about us.  It means the world to us.

We wish you all a Happy New Year that is filled with love, peace and joy!

Stacey

Advertisements

News Story

We received word today that the news story about Madison and Nathan will air on Friday, December 21st at 9:00 on Channel 20 and 10:00 P.M. on Channel 9 news. If anything changes, I will let everyone know. Once it airs, I will post a link so that those of you who are not in the Denver area can see it.

Thank you-
Stacey

No Words….

I don’t even know where to start.  I have thought about this since Friday, about what I could possibly say that would in some way make sense of the tragedy that occurred in Newtown,  Connecticut, it has occurred to me that there will never be a way to make sense of this.  It was the most vile of tragedies and it rocked me to my core.  I shook and sobbed, wept and cried and held my kids close.  It was this overwhelming sense that my children are not safe anywhere, not a high school, a college, a movie theatre and now,  not even an elementary school.  That frightens me on so many levels.  I leave my kids every morning with the sad assumption that I will see them that afternoon and I can’t help but think how many of those parents thought the same thing.  My heart aches for those parents,  the siblings and the entire community that will be forever changed by this senseless act.  An entire portion of that generation is not there anymore.

There have been many reports that have been put out into the media and while I understand it is their job,  I think they have an obligation to wait on information until they know they have the facts straight.  Reporting immediately that the person who had committed this heinous crime was on the Autism Spectrum, without any knowledge other than they think he was socially awkward.  Yes, that may be one of the symptoms, but not enough to diagnose someone who they have no information on at this point.  Having a son on the Spectrum it made me so sad.  I don’t want people to assume that because you have Autism or a form of, that you will wind up having violent tendencies.  Studies actually show that someone who has Autism is more likely to be a victim of a violent crime rather than cause one.  I do not want my son lumped in with someone who clearly had so many other things going on.  But that is the most I will say about that person again.  I do not wish to see his picture, know his name or his history.  Chances are we will never know why he made those choices and I think it too many situations we remember the names of the bad guys and not the ones that were lost.  That is where our attention as a country needs to go, to the victims.  From the hero teachers who helped save entire classrooms and the Principal and teachers who lost their lives saving the students.  For the first responders and the horror that they had to witness.  We grieve for them.

I had to sit down with my daughter over the summer and explain to her how a really bad guy went into movie theater here and shot a bunch of people.  While visiting Nathan in the hospital we would go by the memorial site and she could not fathom the idea of someone doing that.  Then on Friday when I picked her up from school, she could tell that I was visibly upset and wanted to know what was wrong.  I had to sit her down and tell her that a bad guy went into a school and hurt a lot of innocent people.  I should NOT have to have these conversations with my 10-year-old child about people killing people at schools.  She started to cry and said that she is scared to go to school now.  I did not want to give her too many details as to not traumatize her any more, but every parent explains things differently and all these kids talk, so I am not sure what she will hear.

I cannot say that I will drop them off without holding my breath, but I think it will be a collective breath held by every parent across the world.  This is the place that we take them that they have always been safe.  It does not feel that way anymore.  While I know that this is rare, it does happens but I pray that we can stop this violence from infiltrating any further.  For now let’s remember:

Charlotte: 6, Daniel: 7, Rachel:29, Olivia:6, Josephine: 7, Ana: 6, Dylan: 6, Dawn: 47,  Madeline: 6, Catherine: 6, Chase: 7, Jesse: 6, James: 6, Grace: 7, Anne-Marie: 52, Emilie: 6, Jack: 6,  Noah: 6, Caroline: 6, Jessica: 6, Avielle: 6, Lauren: 30, Mary: 56, Victoria: 27, Benjamin: 6, Allison: 6.

For these are the ones we should never forget.

Stacey

Another piece of the puzzle

I received a call from a Neurologist at Children’s Hospital on Friday evening at 5:30.  Of course she called my cell phone and I did not hear it so she left a message.  She said that she came across some reports while cleaning out her office from when Nathan was in the Hospital over the summer.  One of his tests came back abnormal and she wanted to be able to do another test to see what the results were.  Of course, she then said to call her back Monday – Friday.  As a side note, you should not leave messages like that for parents, all it does it make us worry.  Jay and I called her first thing Monday morning and she told us that when he was inpatient at the hospital they were called in to do a consult due to his Optic Atrophy.  They had ordered some lab tests and one in particular came back abnormal.  It is the polg1 test.  Now, I have done as much research as possible and it still does not make a lot of sense to me.  But, the way I understand it is that his polg1 test had a genetic marker missing.  They want to perform the test again to see if in fact that marker is missing or if there was just an anomaly in the test.  Since he had genetic testing done back in May, they are going to call Baylor to see if they can use the blood that they already have to perform this test again.  We asked what this would mean if it came back that it was missing.  She indicated that it would give more evidence to an underlying condition and help determine treatment going forward.  It may mean a medication change or supplements or maybe more.  We do know that there is a link between this and the liver.  It will take a while to get the results, but will keep everyone informed once we know.

As always with Nathan, we are just discovering more pieces of the puzzle.  He is unique, quirky, funny, smart and wonderfully made.  But, he is not broken.  My hope is that if one day we can put all the pieces together, maybe some of this will all make some sense.

Stacey

Heartwarming

Today I went on my front porch and found that a package had been delivered.  It was a big Starbucks box.  My first thought was who sent me Starbucks??  Then I looked at it was addressed to Madison (and only Madison).  I brought the package inside and told her something had come for her.  Her eyes lit up and she carefully checked to make sure that it was just for her.  It was sent from one of my oldest high school friends.  Inside was a beautifully written letter that told her what an amazing big sister she is and how it must be hard sometimes for Nathan to receive all the mail.  She thought it would be nice if she was able to get something that was all her own.  I, of course was crying as Madison read the letter to me.  I could not believe that someone had sent her a whole package!  As she unwrapped the package, her eyes got bigger and bigger.  It was a shower bag with all sorts of goodies in it.  Nail polish, manicure and pedicure sets, sleep mask and yummy lotion.  She was jumping all over the house yelling “how did she know that my favorite colors were pink and purple?”  She also has a 10-year-old, so of course it worked out beautifully.  Immediately, Madison said can we call and tell her thank you?  I got on the phone and told my friend how she did the perfect thing and the perfect time.  Madison has mentioned that it is hard to see all these things come for Nathan and not always have her name on it.  I have tried to explain to her that while it may have started as postcards for Nathan, it has turned into an adventure for the whole family.  We all get to see these beautiful places that we may not ever get to.  But being 10 years old, having something come in the mail with your name on it is HUGE!  So for my beautiful, kind, loving and wonderful friend who is reading this, you will never know the gift you gave me.  You may have given my daughter the gift and she is thankful, but you gave me a greater gift by seeing the smile on her face.  You know I love you!

On to medical news….We took Nathan in for his eye appointment on Friday and they did all the usual tests.  In May he was 20/400, in July he was 20/200 and on Friday, I am thrilled to say he was 20/125.  The Dr. did caution us not to get too excited as his eyes will continue to fluctuate up and down.  However, at this appointment they fluctuated up and for that I am thankful.  We will take all the improvements we can get.  He did recommend a supplement that they give to older patients with retinopathy, so I will need to look into that.  I was convinced that his eyes had gotten worse, so I was completely surprised when he told us the news.  We are so grateful for positive improvements in anything with his health.  He is doing good in school and was very excited today that he got to go into his general classroom and participate in decorating something for Christmas.  I was happy for him as I worry about him being alone and not with his peers enough.

Postcards are coming!  Daily we are receiving more and more and even from Nathan and Madison’s classmates.  Our stack is growing to the point where I need to figure out something more creative to do with them.  I think I am going to get a map of the world and put it on Nathan’s wall and put colored push pins in all the places that we receive them from so he can see how far they have traveled.  The news team that came on Thursday was blown away by how many we received.  The news anchor is from Russia originally and brought Nathan and Madison both gifts from Russia.  She also sat down with them and dug through all the postcards to find the ones from Russia to show them that is where she came from.  It was such a neat experience to see what goes into putting a news story together.  They were with us for 6 hours and it will probably turn out to be a two to three-minute story!!

Thank you all for everything.  I will never get a chance to personally thank you all, but please know that you have touched our hearts in ways that we cannot describe.

Stacey