Tag Archives: developmental disabilities

Why I hate Batten Disease

Posted on by So That He Can See

I could give an endless list of all the reasons why I hate Batten Disease.  I could explain to you all that it has taken from my beautiful little boy. He was once this healthy young boy who ran around the house and climbed on everything.  He played sports and was pretty good at them too!  Over the years things have changed and that is what caused us to seek answers.  However, it seems that since we got our diagnosis, things have changed or perhaps we are just hypersensitive to it.

The little boy who once ran around this house, walks very slowly.  He has to feel his way around everything.  We have not moved the furniture in 6 1/2 years and he seems to have become more unfamiliar with his surroundings.  He wears braces on his legs now.  The doctors said “they want to keep him walking as long as possible.”  The little boy who used to be able to make up all these wonderful, imaginary stories now has a hard time speaking.  He has to concentrate on each and every word.  He stutters and gets stuck on the same word.  If you were not around him often, you would not understand what he is saying.   The little boy who used to see everything, now has to have everything described to him so he can imagine in his mind what it looks like.  I know how devastated we are by all that Nathan has lost, I truly can’t imagine what it must be like for him.

Our days have become increasingly difficult.  Trying to navigate his wants and needs in the middle of meltdowns.  Trying to get him to take his medicine so that he will feel better while he is screaming is extremely hard.  Watching him scream for hours about things that do not make any sense is exhausting.  For him especially, but I would be lying if I didn’t say that it takes a tremendous toll on the whole family.  Trying to rationalize with him when he is so upset and not being able to satisfy him with anything is so frustrating as a mother.  I am supposed to be the one who can fix anything.  I cannot fix this. I want to so badly.

The last few days have been extremely hard on me.  Over the weekend, he wakes up and he just screams and cries for hours.  He has come home from school the last two days and is just mad.  He will sit on the driveway and refuse to come into the house and just scream.  He calls me names and yells at the tops of his lungs. Today it got to the point were two of our neighbors had to come over to offer me help.  They were trying their best to diffuse the situation but I can’t help but feel a little embarrassed and so exhausted by the behavior.

The fact of the matter, is that this is not my son.  This is not the little boy I used to have.  I know that I have to understand and accept that this is the way it is, but I am so angry.  I am angry that it is taking his sweet personality and affection and changing him.  I know that behavior changes are part of Batten Disease, but I hate watching it.  I feel like I am losing him day by day.  My heart is broken and I do not know how to glue it back together just so it holds a little longer.

I have cautiously watched what I have written here over the years as I never wanted to portray Nathan in any kind of a negative light. However, this is not Nathan, this is what Batten has done to him.

I truly have tried to focus on the positive, but I feel like I have to be honest as well.  Things aren’t so great.  It is tough to not have help.  It is tough to not be able to leave the house to run to the store.  I feel horrible having to call Jay to ask him to stop and get dinner on his way home because I could not cook dinner.  I feel horrible that I don’t keep up on the house work because by the time Nathan goes to bed, I am so physically and emotionally exhausted that I can’t even do a load of laundry.  I hate that Jay and I can’t go on a date whenever we feel like it.  I hate that I can’t have an uninterrupted conversation with my daughter.  I hate that she feels so left out.  I could go on and on about all the things that I hate, but one fact remains.  I love my son with every part of my being.  If you could go back in time and tell me what my life would look like now, I would never, ever change it.  Of course I would take away this horrible disease that has settled into our lives.  But I am blessed with the most beautiful family in the world.

As always, I ask that you please share our story to help spread the awareness of this disease.  For more information on Batten Disease you can always visit http://www.bdsra.org.

Thank you for praying for our family and for all the kind words that you send.  We appreciate them and are so thankful to everyone.  Thank you for loving my family.

Stacey

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What a difference a weekend makes

Posted on by So That He Can See

On July 9, 2015, Jay, Madison, Nathan, my Mom and I traveled to Chicago, IL for the Annual Batten Conference. I have to admit, I was a bundle of nerves.  I had run through every scenario in my head. It started with arriving at the airport.  How would check in go, how about the flight?  Nathan can have a hard time on long flights and I don’t like to disturb anyone. How far would the drive be to the hotel?  We were traveling early and the first event was that night.  Would he last the day without having a meltdown?  As you can see that is a lot of worry just to get us to our destination.  Then I had the additional stress of the conference.  I had NO idea what to expect.  I was thrown into this world on June 10th and had no idea the family that would be waiting for us.

We had been corresponding with several families via Facebook on a Batten page for families and we were eager to put faces to names.  But I would be lying if I said I wasn’t scared to death.  It is really hard for me to go into new situations . Especially situations where I don’t know what to expect.  I remember being nervous walking in and the very first thing we did was go to a newly diagnosed family meeting. That is where all the families who have been diagnosed over the last year would meet their host family and have a chance to ask questions or just take a deep breath.  I remember being very overwhelmed in that moment.  We then went on to a cocktail party where we just got to visit with all the other families.  I finally got to put so many faces to so many of the children’s pages that I follow.  That is the night Nathan met his new buddy Joey.  It was like looking at a mini version of Nathan.  Joey is so similar to Nathan is so many ways.  For the first time ever I felt this amazing feeling like there is another kiddo who is like Nathan.  Nathan has always been so unique.  It was like no one ever understood him but in 3 minutes of their meeting, Nathan and Joey were buddies. To follow Joey, please go to Joey’s Journey – Juvenile Batten Disease page on Facebook, he is an amazing little boy with a phenomenal Mom!

The next morning started with Jarrett Payton speaking.  We arrived a few minutes late and were not quite sure who he was.  I kept asking Jay, “who is that?”.  All he could say is, “I think it must be an athlete of some sort.”  He kept talking and there were stories of Michael Jordan being at his house and going to basketball games and seeing Scotty Pippen.  Even I, who doesn’t know much about sports, knew those names.  But I still couldn’t figure out who he was.  He gave a wonderful speech and near the end made a comment about his Dad being called “Sweetness”, Jay leaned over and said that is Walter Payton’s son! Ok, even that one I knew:)  He finished his speech and a few minutes later left.  I have no idea what came over me but I became very emotional.  I needed a minute to myself.  I left the conference room and was walking towards the door in the lobby and I could see Jarret walking back in.  As he got closer to me, he grabbed my arm and said “Are you ok?’  I immediately started sobbing and told him that no, I was not ok.  I proceeded to tell him that our son was just diagnosed on June 10th and was feeling very overwhelmed and needed a minute to breathe.  He told me at he was in his car and ready to go home but something was telling him to come back in and that I was the reason he needed to come back.  He gave me a huge hug and comforted me.  It was a very odd encounter.  I had not cried up until that point except for at the Doctors office in June.  And here I was crying to a complete stranger.  He told me a really nice story about is Dad and we had a nice conversation until I could compose myself a little better.

We spent the next three days in jam packed sessions.  We met with Scientists, Doctors, Researchers, affected families and extended members of those families.  In fact there was one scientist who was there that 24 hours prior had been running with the bulls. He jumped on the plane to be at this conference. There were over 400 people in attendance at this years conference.  It was the biggest turn out yet.  We had mini sessions that we would go to.  We learned about how to better navigate an IEP, how to communicate our needs to our spouse, how to speak with Doctors and get them in touch with the experts in the field, what new doctors might be good to add in to our mix.  There was one session on caring for the caregivers.  It taught us that it is ok to ask for help, which is something that Jay and I both struggle with but are trying really hard to get better at.  One night Jay and I stayed up until 2 in the morning talking to a couple other Dad’s and that night I could have been an expert on seizures.

It is amazing what all these families have gone through.  All of these children are so different, but yet we have all traveled such similar journey’s.  Some like us it has taken years to get the proper diagnosis.  Trying different medications to try to curb an undesirable behavior when in reality, that was never the issue. I think about all the things that we have put Nathan through that maybe we didn’t need to if we had known.

I believe that Nathan has always tried so hard to fit into a box that didn’t quite fit him.  Yes, he has had friends at school and he is happy, but I have never seen him as happy as he was during those three days.  He fit, he belonged and people just got him.  He discovered that he was quite charming with the ladies and there were several marriage proposals and kisses on the checks or hands.  And he even discovered all the gentleman’s beards and was not afraid to ask to feel them.  Everyone obliged and were very gracious about it. There was not single person there that didn’t understand when Nathan was having a problem.  It was normal behavior and I cannot tell you how good it felt to be surrounded by understanding.  I said it many times that weekend that I didn’t want to leave the bubble.

There were groups for the siblings as well.  Madison had lots of kids to hang out with that finally knew EXACTLY how she felt.  They did day trips and went to the Aquarium and to dinner at Medieval Times for dinner.  There were lots of activities she could have participated in if she chose to, but she was uncomfortable.  We were reassured many times by the older siblings that this is very normal behavior.  It is very understandable for her to be completely overwhelmed by what she was seeing.  It may take several conferences for her to feel comfortable with her surroundings. We just want her to be assured that the support is there for her.  We know how hard this is for her.

Looking back I wish walking into the conference I could have known that I was going to feel like I found a second family and maybe taken a little more time to relax and enjoy it and take a deep breath.  Next year for sure.

Stacey

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Update on Nathan

Posted on by So That He Can See

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I know I am not the most eloquent writer, but I write this with an honest and heavy heart.  The last few weeks have been hard on us to say the least.  We are emotionally and physically drained.  We have received what seems like blow after blow and I would be lying if I said I was not ready for some good news.  

We took Nathan in for his MRI and EEG on March 4.  He went under general anesthesia and had the MRI.  He was and is always so brave at doctors’ offices and hospitals.  He came out of the anesthesia very agitated.  They had an IV in his hand and he was not happy about it.  The nurses could not seem to get an accurate answer if he would need it at the EEG unit and they did not want to take it out in case they had to put it back in.  After the recovery room, the wheeled him up to the Epilepsy Monitoring Unit and were able to remove the IV.  He was much calmer after that came out.  We then spent about an hour and a half with them hooking up all the electrodes to his head.  He lay on the bed so patiently while the technician used a sharpie to mark his head and glue that stunk and then finally wrapped his head with gauze.  He had to carry around a pouch with the monitor if he got off the bed.  He was very pleasant the whole time we were there.  I had been nervous that keeping him in a room for 24 hours would be more difficult, but once again, he just amazed me.  I would love to say that the sleeping arrangements for Jay and me were ideal, but let’s just say, I got to snuggle with Jay’s feet that nightJ

The next morning the Doctors came in and told us that his EEG was normal!  There were no signs of the min seizures that they were looking for.  They did say that his brain slowed down at night, which is indicative of all the things that are going on with him.  We really don’t know what that means, but do have another big appointment coming up that we will have a chance to talk in depth more about all of this.

On Friday, March 7th I received a voicemail from Nathan’s Neurologist that went over the results of his MRI.  I was glad that he left a voicemail since there was no way I could have ever repeated the information to Jay.  It made it easy for Jay to listen to it himself.  His comment was that Nathan had “Progressive diffuse cerebral and cerebellar volume loss since 4/2012”  They compared this MRI to the one they did in 2012 and have determined that there is volume loss to his brain.  Basically he has lost brain matter.  He said clinically, it is what was expected, but still they do not have a reason as to why.

Next up, was our Ophthalmology appointment on March 13.  That was terrible news.  We were told that his eyes were significantly worse since November, 2013.  He said that he is basically almost completely blind and considers him “light perception” only. All of this information together just got to be too much to hear.  We are completely devastated by the fact that 5 years ago, we had a healthy little boy who we never would have imagined this would happen.  I don’t know why this is happening.  Jay and I unfortunately are in the place where we are racking our brains trying to figure out what we may have done to cause all of this.  I know in my heart that we did not do anything, but as a parent, I can’t help but feel responsible.

On April 1st, we will meet with the Neurologist and the Mitochondrial DNA department heads to hopefully get the results of the DNA they took back in November.  It was sent to Harvard for analysis.  The tests that they are looking for are life threatening/ life shortening illnesses.  The fact of the matter is

that we have to somehow gear ourselves up to hear potentially bad news and for the life of me, I don’t know how to do that.  

Something is going on with Nathan.  He is regressing in a way that no one understands.  It is always so frustrating when you take him to the best of the best Doctors and they just don’t know.  The truth is that on April 1st those tests may not reveal anything and we would have to go to a 3rd round of DNA testing, which would mean another 4-6 month waiting period.  We need answers so that we can help Nathan.  

I would desperately like to ask all of you to please say a prayer for Nathan as well as our whole family.  This affects Madison, Jay and me in a way that I can’t describe.  

Thank you,

Stacey

 

Moving on….

The other day I decided it was time to pack up all of the postcards and other trinkets that Nathan had received over the last year.  Honestly, they have stopped coming and I really needed my dining room table back for Christmas:).  But in reality, I did not know what to do with them anymore.  He can’t really see the pictures and I was not sure what to do other than put them in storage for a memory down the road.  One day we can pull the tubs out and look back on the journey we went on, literally around the world from our own house.  I have to say it was a bittersweet moment for me.  I was glad to do it alone.  I was able to go back and look through all the postcards, the trinkets and the words of encouragement.  There were so many.  Literally, thousands of postcards made their way through my front door.  Letters of hope and words that made me cry. Stories that made our situation seem so small and others that made me realize I can make it one more day. It still makes me smile to think of all that everyone did for us.  But there was a sadness in packing it up too.  I realized that Nathan won’t look at these again.  He won’t ask the questions that he once did about the places he saw.  It marked one more what seems like last moments for us.  We struggle to hang on to every little piece of the here and now with him so that we do not lose focus of what we have.  But I would be lying if I said we don’t think about the future, A LOT.  We do not know what the future holds and unfortunately our imaginations get the better of us at times.  Thankfully, Jay and I have each other to remind ourselves at times not to get ahead of ourselves.

I wanted to take a moment to thank each and every one of you who sent a memory to us.  They have been cherished.  It gave our family an opportunity to sit and look at the world in a way that we may have never been able to do.  

Nathan came home from school for Christmas break with a new tool.  He is now equipped with a cane.  He was so proud to walk to the car and show me how he uses it.  I took him to the store and it was the first time in a year where he was not holding on for dear life to walk.  He held my hand, but used his cane to get around.  He had a sense of Independence that I have not seen in a long time.  It was quite wonderful. He did proceed to tell everyone that he came in contact with that “This is my cane, it is not a weapon and it is not a toy, I use it because it helps me”.  It was sweet.  He has been doing well in school and the school has been absolutely wonderful in accommodating his needs.  He truly is a unique person with special needs and they have stepped up to the plate and really come through for Nathan and for us.  We are working with Social Security and Disability now to see what he is eligible for and that has been quite interesting.  That will be a long road, but one worth pursuing.

We have received the first of Nathan’s genetic testing and I am thrilled to say that it all came back normal.  We have appointments in January to meet with a Neurologist. We are nervous wrecks about all of this, but trust that God has a plan.  We know that we are in good hands.  Jay and I are Nathan’s biggest supporters and will always stand by him and fight for whatever he needs.  Our prayer is that his road is just a little easier than it seems right now.  We pray that his life is full and that he is happy.  As long as we have that, what more could we ask for.

From our family to yours, we wish you the Merriest Christmas and Happy 2014

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Time to share

Posted on by So That He Can See

So I have been trying for a couple of weeks to sit down and summarize what all has transpired in our lives and every time I try, it is a little overwhelming. I feel like if I write the words then it is true and I so badly do not want it to be true. I want to wake up and have all of this be a bad dream, but it is very much our reality so I guess it is time to share.

As I stated before Nathan started doing some strange and unusual things with his eyes over the last couple of months. We noticed it quite a bit on our vacation. He would roll his eyes back into his head and stay like that for short periods of times. When we would ask him what he was doing he would act like he did not know what we were talking about. When asked to put his eyes back, he would tell us he couldn’t, that it hurt. Honestly, it was disconcerning to look at, but I attributed it to another thing that he did. I think it bothered Jay more than me.

When we returned from our vacation, a much needed one at that, the teachers at his school noticed the same thing with his eyes. Apparantly, one day while walking inside from recess, he was holding on to two of his friends and when he got inside he became upset stating he couldn’t see. They noticed his eyes rolled back and they said in total it took about 45 minutes to subside. They had him lay his head on the table and indicated that he seemed panicked about it. This occurred in late October. At that time we had an appointment to see his eye Dr. for a regular checkup on November 13th. The vision specialist that works with Nathan at the school said it would be worth a phone call to see if they wanted to see him earlier. I made the call on Tuesday and we were in to see him Friday, November 1.

The nurse examined him first and did the same series of exams we had seen before, but you could tell she was taking more time and seemed to notice things that made her “redo” certain tests. When she was done she looked at us and said she was sorry but his vision had decreased significantly. We asked her what that meant and she said the Dr. would go over it all with us. The Dr. came in and did his exam and looked at Nathan and said “Buddy, I am sorry, but your eyes are worse”. When we asked him how much worse he said that they were more than 125% worse since May 2013. Nathan was sitting on my lap and I had my head on his shoulder. He turned around and asked if I was crying and I said yes. He said “don’t worry Mommy, I am strong!”. The Dr. also noted that his Optic Nerve was paler than before which is a sign of degeneration. At that point he indicated there is nothing that can be done. There are no surgeries, no cures, no fixes… nothing. He recommended that Nathan be trained with a cane as soon as possible, which we are in the process of. He is in the beginning stages of early Braille. We left the appointment feeling very deflated.

On the following Tuesday, we received an email from his eye Dr. that indicated he had met with the head of the genetics department at Children’s Hospital. We had met with him back in May of 2012 and had some genetic screening done that all came back normal. He presented Nathan’s case and they have indicated to us that there is a possibility that Nathan may have a degenerative Nuerological or Metabolic disorder that they have not discovered yet. They have always said that he had Optic Atrophy. Now they think there is a real possibility that he has an underlying disorder that had caused the Optic Atrophy. They wanted us to get back in to see the genetics department.

We called and they were scheduling out into January. The Dr’s. always recommend not to google what they talk about, because believe me, it is scary. Of course we don’t usually listen to that advice and we started reading what the possibilities were. Jay immediately got on the phone and called the genetics department to see if they could see us sooner. He contacted the eye Dr. to see if he could pull some strings. We were told that Wednesday that a couple of months is really good and some people wait up to a year. HOWEVER, we got a call on Thursday letting us know an appointment had “become available” the next day, Friday the 15th. Of course we took it! I think Jay’s persistence paid off.

It was an early appointment and I had asked if my parents would meet us there to help with Nathan. There always comes a time when the Dr’s need to talk to us and it is hard to focus when he is in the room. We don’t like to talk about him and the things that are “wrong” with him in the room. As it turned out at the last minute my parents couldn’t make it. I was a little nervous. When the nurse went to get all his vitals he refused. He would not stand on the scale or let her measure him and I thought oh boy, this should be fun. We went into the room and there was the metabolic Dr., a student and a counselor. A few minutes went by and then this young lady walked in and announced that she was with child aid and her job was to entertain and play with Nathan during the appointment. Thank God! She came at the perfect time and played Legos and Star Wars with Nathan so that we could concentrate. The Dr. explained to us that they want to do a secondary DNA screening. He said there was one particular disorder that they really wanted to rule out. He flat out told me he would not tell us what it was ( darn google). They will do a enzymatic test that takes about 3 weeks to get the results and then they will do a full DNA test that they send to a lab in Massachusetts that will take 4 months!!! It will look at over 220 things that could be affecting Nathan. He also wants Nathan to see a Neurologist to have a full exam and is recommending another MRI. They want to compare it to his previous MRI done over a year ago and see if there is any change to his grey matter. We have that appointment set for January. We have the follow up appointment set for April 1 to go over all the results with all the Dr’s at the same time.

So, a lot of information for a long wait. We have done our part and now we just pray that if they find something, it is something that we can get him help for. We do not want to see him struggle the rest of his life. I want him to live life to the fullest and not be restricted in so many ways.

Thank you to all of you who have hung in there with us. You know when we have needed to talk and when we have needed to cry. You have also respected when we just don’t have the words anymore because it hurts to say it out loud. We love you and are forever grateful for your love and support of our family.

Stacey

A trip to see the Mayor

Posted on by So That He Can See

A couple of weeks ago, I was contacted by the Parker Mayor’s office.  They indicated that they Mayor had received something from overseas for Nathan and would like to present it to him in person.  I did not get any additional details other than when they were holding their next town hall meeting and if we could be there.  Of course we agreed to come and were intrigued by what it was.  The meeting was last night and we prepped Nathan for what we thought he could expect.  I have never met a Mayor and was not sure what this adventure would look like.  We reminded him to say “Thank you” to whatever it was that he was given and that more than likely he would want to shake hands (we practiced that as well:).  We got to the town hall and they had a  pamphlet that said there would be a presentation to Nathan.

They started the meeting and then the Mayor, Mike Waid walked down into the public seating area and turned the microphone on and started to speak to us.  He indicated that he received a letter in the mail from Nicaragua.  The envelope only said  “The Office of the Mayor Township of Parker Colorado”.  He said he was interested in what would be in this envelope.  Inside was a letter to him from a gentleman who lived in Nicaragua and had heard our story on CNN.  Apparently, they only provided Nathan’s first name and that we lived in Parker, CO.  He wanted to send Nathan some postcards before Nathan’s eyesight declined any further.  He assumed because this story made national news, that Nathan must be receiving postcards from all over the world and that if he just put Nathan, Parker, CO on an envelope, the post office would know how to get it to us.  unfortunately, his letter was returned to him.  As he stated in his letter to the Mayor, he could have stopped there, but he didn’t.  He went on the internet and Googled Parker, CO and obtained the address for the Mayor.  He then asked the Mayor if he could help to locate our family.

His letter went on to say that whatever it would cost to locate us and send us the postcards, he would reimburse the Mayor.  He asked that in return he simply receive an email letting him know that he received the letter.  Inside of the letter was another envelope that plainly said “Nathan, seeing the world through postcards, Parker, CO”.  I love the fact that he thought that it would get to us.

I am touched that this wonderful gentleman didn’t just throw away his letter and forget it.  He spent his time and money to make sure that we received his beautiful postcards from his home.  He wrote a letter to Nathan and the last line had me in tears.  He said, “Nathan, Be brave, for the world is watching and you are leading the parade!”

It is moments like these that I am in awe of others.  I have no words to express how much it means to me that he sought us out and that it was important for him to make sure that we received his letter and postcards.  It is people like him that have made such a lasting impact on our families journey.

Nathan and Madison got an opportunity to meet the Mayor, sit in his chair, bang his gavel and were given a lot of cookies:) I am very grateful for their hospitality and making us feel so welcome.

Please make sure you click on the link below that says letter to see this amazing letter that we received.

Stacey

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Rollercoaster Ride

Posted on by So That He Can See

I feel like I am on a roller coaster lately.  We have been receiving so many responses since the news story aired about our family that it is hard to catch our breath.  It is overwhelming but in the most wonderful of ways.  I am feeling very humbled by people’s responses to our situation but also so grateful as I know that our story could be so much worse.  I have seen it first hand.  I spent the entire summer at the hospital with Nathan and saw sick children everywhere and every time I saw one I thanked God that it was not my child that was laying in a hospital bed.  I know that it can always be worse.

However, lately, things have changed with Nathan.  He is so tired all the time and I am wondering if it is the effects of his medication or the cold he is recovering from.  I will speak to his Dr. about this and see if there needs to be a change made.  Also lately we have had some of the anger issues come back.  He seems to be very agitate in the afternoons and it is directed towards me.  I think he tries so hard to hold it all together at school, that once he gets home he just let’s go.  I try to get a snack in him as soon as we walk in the door and let him have some “down” time, but he never has “down” time.  He does not know how to sit still.  He is always going 100 miles an hour until his head hits the pillow at night.  We have been trying to put him to bed a little earlier in the hopes that it will help him be more alert at school and keep him calmer when he comes home.  So far, it has not been working out too well.  I get reports from his school that he is falling asleep and I just can’t seem to figure out why he is so tired.  So, Mommy is on the hunt for information.  Perhaps he needs a supplement or something to help perk him up.

It has been so cold here the last few days that they have had indoor recess and he has been able to go into his general classroom and play with his peers.  That seems to be the highlight of his day and he is eager to tell me about the kids he is playing with.  It is so nice to hear that he is playing with some new kids and I hope that he is developing some new friendships.  I want so badly for others to understand him and want to be around him.

As for me, I am tired.  I want a normal existence, but I realize that this is my normal and honestly I am ok with it.  I truly wouldn’t trade my life for anything, but I am not going to lie, it is hard.  Ask any parent of a special needs child and they will probably say they are tired.  We don’t have baby sitters because honestly, I don’t trust anyone to understand my son.  I have left my kids with my parents, my brother and sister-in-law and my neighbor.  That’s it.  I know there is respite care out there that is fantastic and maybe someday I will be more comfortable going that route, but for now, we keep it in that small circle.  He is comfortable with all those people and they understand him and love him more than anything.  It eases my mind when they are not with me to know that they are with someone who loves them.  For Christmas, my parents gave us a gift card for dinner and a night out (over-night) and I cannot wait to take them up on the offer as Jay and I need a date night.  It has been way too long and I miss having just us time.

Again, to all of you out there who have taken time to send us a postcard or a letter or some other special object, it means the world to us and we are grateful for all your thoughts and prayers.

Stacey