a whole lot of updates!!!

My head is full of varying topics today and I am not feeling well so let's hope this blog makes sense. I will also try my best not to ramble to much. Jude has been doing very well lately. He looks healthy and he is smiling a lot. Not to mention that he is really looking at us in the eye again. Thursday afternoon he has an appointment at Cooks with an orthopedic doctor. Jude's feet are really turning in and they seem to be starting to hurt him. We put his braces on and he does use the stander, but they still hurt. We will find out more from the doctor.

So this past weekend my family came in from Springfield which was very nice. Emily loves being around my family. She also tends to be very close to my aunt Caron. She kind of adopted her as her grandmother since my mom passed away when I was 7. Emily can get very touchy when it comes to the family doing things without her so we always have to explain to her about immediate and extended family. It's sometimes hard for her to grasp the concept. Anyway, my family does an amazing job of loving and including Emily and they even asked her to join in their family pictures. This is of my aunt and her "grandkids".

 

 

 

The Emily's Smile Box day went fantastic! I cannot say enough about The Ranch At Lonesome Dove! If you need an amazing party, wedding, or charity event contact Mike over there to help you out. The day started at 9:15 when Emily and her dad were registering people for the 3k/5k race that she wanted to support Jude.

 

At the beginning of the Race we had great signs donated by Hawkeye printing. They were so cute and we had one explaining Pediatric Stroke risks and what to do in the event of a stroke.

 

 

Someone actually gave her a bull horn!!! This is Emily announcing the start of the race with Miss Tarrant Katie Sicula. Katie will compete for Miss Texas USA in August and Emily will compete for Texas Teen USA in November. They have become friends and she is a fabulous role model for Emily

 

 
                                          Nurse Allen joined in the festivities along with Jude

 

Emily's best friend, Emily, and Faith enjoy a hay ride after the race

 

 

The official sponsor of the day The Anderson Team with Coldwell Banker in Keller, TX

 

 

We made 250 boxes to benefit local hospitals that were taken and distributed by volunteers

 

So it was a great day! In addition Emily received two more great donations that will fully cover the Christmas box making party and the start of the 2nd annual Emily's Smile Box day next year. We did learn some things. We will have the run either much earlier or later in the day, we will time the racers, and we will have a few more activities on hand. All in all I think it was a success. (Oh and after the event we received two auction donations for next year and Emmitt Smith signed football and a Jim Palmer signed baseball).

Lately there has been a lot of negativity on social networking sites and in the public due to recent tragic events. I enjoy social networking.........I truly do. I love looking at people's pictures they post and staying up with friends lives. I feel it a blessing that were have been given such a remarkable tool I our lifetime. I know some people find it annoying, but I personally love it.  However I read a lot where people can get overwhelmed with the negative. I think it may be the fact that I am getting older, but lately I have just breathed easier. Try not to let life get to you to much and try to see what's important. It's easy to hide someone on a social network site or just skip right past anything you think won't improve your life.  I have decided to just love all my friends and family for each unique contribution they supply to me. Everyone is different, but I firmly believe that everyone in my life has something beautiful to offer if I allow them to. However it takes stepping back and seeing their beauty to truly appreciate them.  

Lastly, I will close with a show I highly recommend you watch. It's called "The Crash Reel". For further information on it you can click here: http://www.nydailynews.com/entertainment/tv-movies/crash-reel-tv-review-article-1.1397400 By chance I stumbled across this program last night and decided to watch it. By the end of the program Mike and I were in tears.........but not bad tears appreciating tears. I became interested in this program when I saw that the parents were not only helping a son with a massive traumatic brain injury, but they were helping their son with Downs Syndrome too. I don't want to go into the whole story and ruin it for you, but it's really worth watching. It's the first time I have wanted to reach out and write a family to tell them how inspiring they are! I also wanted to say, Holy awesome house...I love it!

A shave and a haircut....

The doctor did increase Jude's Artane intake. So far he seems to be doing very well with the change in medication. I have seen a few bruises this weekend, but they are on his arms and he likes to hit his toys hard.

Jude's hair has been getting very long again and I have already blogged about how excruciating it is to give Jude a haircut. It's just awful! He hates the buzzing noises of the clippers and it is just miserable for him. So tonight we decided to sedate Jude and I insisted on cutting his hair myself. Mike was taking Emily to get a new PS3 game and I assured him that I could handle cutting Jude's hair! I kissed Jude softly before I gave him the dose of Valium and told him goodnight. I sighed heavily as I administered the medication and felt horrible I had to sedate him. I waited about 15 minutes and then laid Jude softly on the yellow wedged mat. I began to quickly trim the hair away and Jude looked at me curiously. I assured him the entire time that mommy was just helping him out. He was calm......which was good. The whole process took under 15 minutes and then I ran him a warm bath. I struggled (with my back) to get Jude into the bath and I once again admired Charlotte's strength with Jude each day. I washed Jude off and talked to him sweetly. I then moved him to the bed and covered him in baby lotion. Then I snuggled him into a fluffy blanket and let him fall fast asleep. I kissed him gently on the head and told him to have sweet dreams.

I sometimes struggle with the fact that other people are caring for my child. I shouldn't, but I do. I feel guilty! I am so good at running an office, my own business, and more.......but home is not as well rounded. I don't get a lot of time to clean and when I have the time it's NOT what I want to do. Jude's schedule of doctors appointments are scrawled into my work calendar, but I know I miss some days. However, our family has been blessed. Some how God knew that I needed relief in some form so he sent the most amazing nurse to take care of Jude. Many people struggle with leaving their kids. Many people struggle with finding a good nurse. I guess God just knew that due to my past I would feel the need to continue working to care for my family so he sent the most amazing most organized human being to care for Jude. Charlotte organizes all of Jude's medications and if he needs a refill of medication she now has the pharmacy delivering!! We don't even have to wait in line anymore. His therapists all are on perfect schedules, his so thoughtful teacher just comes to visit, and his doctor visits are fine tuned on the calendar. She even sweetly helps Mike's blind mother around on Fridays as his mother pats and sings to Jude. Charlotte is amazing she is one of a kind. Sometimes early in the morning I answer the door in a haze and Charlotte just knows it's been a long sleepless night......and she doesn't judge. I drag myself back to bed for a few minutes before going to work and when I get up Jude is all smiles. She is so good with him!!! She baths him, washes his linens, and just loves him. On top of that we have a great weekend nurse that looks after Jude too. Don't ever mistake that I don't know our blessings because I really do.

A happy Jude and a a hyper Jude

Well hmmmmmm

That's what I think a lot when it comes to Jude. He is a happy little fella lately. All smiles when I get home and he tries to talk back to me when I speak to him. He opens his mouth real wide like he really wants to get some words out. I posted this last night on Facebook.

However (yes there is a however) Jude's very toned out lately. He seems very rigid and his therapists are having a hard time working with him. His startles have also increased and they are growing more violent. Startles look like full seizures and are brought on by loud noises. We also have noticed some bruising. The nurses asked about increasing his Artane (for tone) but I want to talk to the doctor first.

So here are my thoughts.
1. The bruising I believe is from his AFO'S (leg braces)
2. This could just be a tone issue so it may very well be easily resolved with the increased Artane
3. I began to wonder if this is possibly a reaction to the seizure medication.

I began to add some things up in my head. I had mentioned in a blog some time back that at Cook's they told us Jude's red blood cell county was down. They chalked it up to slight anemia. They said it was so slight there was no issue. Then I began thinking about his recurrent infections lately, and his hyper tone, and his blood cell count. You can Google Felbatol for additional information regarding what we look for with this medication. However, if it is the drug I am not sure there is much the doctor will do. He told us there would be possible side effects with it but that is was the last resort drug for Jude. Hopefully, if it is the medication they can scale it back and increase the Depakene.

Honestly, I think it's all a guessing game with the medical field just like it is for us. Is it something as simple as increasing the tone medication or is it something more complex like the seizure meds.

I put a call into the doctor so we will see what they think.

The full story of the 24 hour debacle and a few things about me.

Last week we decided to make an impromptu trip to California for business mixed with half a day of pleasure. Mike knows I have full panic attacks in traffic so he offered to come with us and drive. He told me how terrible the traffic is in LA (boy he wasn't kidding) and that he didn't want me to have a heart attack. I asked my friend Gena to stay with Jude. She is familiar with G buttons and loves being around him. So when the nurses left on Saturday and Sunday she filled in. Now before I start telling you our tale I want to explain that I have a recurrent nightmare. I am always around 15 hours away from home and I cannot get to Jude or to work. I am absolutely panic stricken. We hardly ever travel for longer than a day or so because of Jude. I just don't want to be away from him for to long.

We flew with my friend Gina who is amazing and always works out "non-rev" tickets for us. Which means we fly stand by and simply pay the taxes on our tickets vs. a full ticket price. We wouldn't be able to travel without her. Gina is the master of flying like this, but I am still learning. However, I have been pretty educated in the past few years. Since we are non rev we have to wait for empty seats that aren't being used. Generally we look at the flights to see if they are showing seats available and if so we mark ourselves on that flight. Next we look at return flights and do the same. We generally always leave a few other open flights after the initial time just in case something happens and other options into other cities if necessary. Well this weekend turned into my nightmare. On our way home we went to check into our flight. Gina sat clutching her phone connected to the companies website watching as people checked into the flight. She turned to us and said "there are 14 non-revs and there are exactly 14 seats...we will make it". You always have a little sigh of relief when you know you will make it. However, I noticed the gate clerk wasn't checking the flight screen like they normally do and wasn't looking like he was assigning any seats. He just seemed...........flustered. So we got down to when the plane would depart and I noticed he printed all the tickets up and laid them on the entrance to the gate. He looked at us and said "I will be right back". He was gone about 10-14 minutes and he was coming back in we noticed the plane............was backing out.... WHAT???????? So Gina rushes to the desk "Sir there were 14 empty seats on that flight!!". He said "we aren't holding a plane for non revs" rudely. Then when asked if we would make the next flight he replied "No, there are 5 seats your aren't making it" again rudely and walked off. Oh the foul language that swirled within that airport is still lacing the skies!! So our adventure started. Those 15 (we soon found out it was 15 empty seats not 14) non revs all rolled to the next flight to DFW. That flight had new people that had more seniority and therefore they were placed in seats first. So then we all rolled to the next flight and we are over 30 non revs now. Mike called his brother who works for a different airline and he got Mike listed on that flight. We had to get one of us home and he was the first one who could get out. He kissed me goodbye and sprinted across the airport leaving blisters on his feet. There were 3 seats available and Mike was number 4th on their non rev. We all gritted our teeth texting back and forth and suddenly Mike got a seat!! I breathed a little easier.

Searching for seats for us continued late into the night until the last 1:10 am flight.......was over sold. Emily looked at me "Mom what does this mean?". "This means we are sleeping on the floor Em!". The gate attendants talked to Gina about what happened and confirmed the gentleman we originally dealt with has serious work issues. The manager was the one that explained there were actually 15 empty seats and he didn't seem very happy with what had transpired. We explained that we understand being a non rev has it's risks for any departure but that being treated less than human isn't nice! He agreed. So the sweet gate attendants went and got us all lovely blankets and pillows. We found a corner in terminal 47A and we all snuggled in. Gina looked up to our swarm of people and said in her friendly Cinderella voice, "Good night everyone!! sweet dreams!!" She always makes everything brighter.

Early that next morning we woke up to a literal sea of people flooding into the terminal. It took me a minute to realize there was an issue. Our first flight......over sold. Second flight........over sold. By the time the third flight arrived the entire terminal was a maze of people, baggage, and cell phone wires. Then we heard the issue. There was very severe weather in DFW and 40 flights had been delayed or cancelled. OH MY WORD.....this was bad. I began texting some friends that work for the airlines. They had different suggestions and my mind was swimming. The wife of a captain that has flown for more than 40 years looked at me and said "This is the worst I have ever seen any airport" even she couldn't get out. We were now at over 100 non revs. Emily and I were 68+67. The nice ticket agent looked at every single flight going out of the airport, orange country, and Ontario. She nicely said "Honey your probably not getting home until Thursday". I called Mike "find us a ticket on S". By a slim chance he found 1 trip with a stop in San Antonio left. It was on a web special and it would only be about $150 more than what our non rev cost was and that's for both! "BOOK IT" I exclaimed. Gina even booked too. We then went and changed into more comfy clothes, grabbed our bags, said goodbye to our new friends, and headed for the new terminal.

We went back through security and since we were now pros this process was very easy. We then sat and waited to be called for our new flight just waiting for the other shoe to drop. Then we heard it "This flight is over sold if anyone would like to give up their seat please let us know.". Under my breath you heard "Oh hell no you better FIND me a seat!" Once we boarded the aircraft I let out a sigh of relief. We flew through turbulent rocky weather and had a double bump landing and it really didn't phase me. I was so happy to be going home I could care less about my prior fear of flying. I am 100% over that now! I could have hopped in an air balloon and steered it home.

Mike and Jude were waiting in the parking lot with open arms. Our 24+ hour debacle was over. I looked at Emily and said "let's take this as a lesson! We had to sleep on the floor for 1 night and were miserable for 24 hours........many people do that every single day in the world". She nodded in agreement and she seemed to really get what I was trying to say.  I also told her that everything you do whether positive or negative has a trickle affect on everyone around you. In this case one persons actions affected hundreds.  We also met a very nice man on our plane who wants to contribute to Emily's Smile Boxes so we chalked it up to, everything happens for a reason!!

In another totally different thought... I just wanted to confirm a little bit about who I am. It's not directed at anyone. I just hear some comments sometimes. 1. I love facebook........a lot. I love social networking!! I advertise all three of my businesses on there and have written more insurance than I can count thanks to facebook. 2. I am super proud of my kids. 3. I love Emily's work in her pageants...I enjoy talking about them and sharing her pictures. I enjoy dress shopping with her and showing those off. 4. Sometimes I get so wrapped up in work and my kids I forget to reach out to others but know I love you all the same! 5. I try not to judge you so please don't judge me. 6. I am picture obsessed. I love sharing them with people. 7. I am over sensitive a lot. I take things to heart if you say them or react in certain manners. It's just me so try to ignore that part of my personality :). 8. I am a HUGE nerd. So I am just me.......take me or leave me.

Anyway, just wanted to share those things. Jen out and glad to be home!;)

A big huge SIGH (not of relief).

We are suppose to fly out to CA Saturday morning so what happens last night. Jude was rigid, didn't sleep well, and acted anxious. This morning his nurse said he had diminished lung sounds in his lower left lung.......here we go again. Jude is not running any fever yet which is good. Charlotte also said his lower left lung opened up after the breathing treatment but it still "sounded different than the other lobes". So I put a call into the pulmonologist, but he cannot fit Jude in until Monday and even they said "Jude doesn't normally wait". So I had to put a call into his primary care giver and leave a message. If she cannot get him in they suggested urgent care again. However if we go to urgent care we are going to ask them to do the X ray and then conference with his pulmo to get the accurate medication dosage.

So what do we do? Do we go to CA overnight or do we stay and watch Jude to see what happens. I am not sure. My gut tells me if we get him in to be checked out he will be fine overnight until we get back. My gut also tells me if we are dealing with aspiration pneumonia for the 7th time...........well that's not good. Jude throws up even with the Nissen. We keep him upright. He is turned to his side after he eats. We has his elevated bed, wedges, compression therapy, vest, etc. It just happens.

I understand the process. I told a friend today that as I researched online I found this information

"If you continue to aspirate, you could have long-term inflammation of your lungs. This can cause you to get aspiration pneumonia again and again. Your lungs may slowly fail to pump enough oxygen into your blood. You could develop a blood infection called sepsis, or a lung abscess. This means part of your lung tissue begins to die. Any of the risks of aspiration pneumonia can be life-threatening."

They tested Jude for sepsis last time....which now makes sense. They understand that continued aspiration pneumonia causes other problems. I understand why they wouldn't relay this information to non medically educated moms. Reading things online or educating myself doesn't scare me. I don't panic or go into a shock mode. I simply understand it's the way our delicate human bodies are made and work. I think it helps me deal with finding the right treatment and future issues. Well that and faith.

So we will probably be hitting a clinic of some sort today just to insure he is alright.

It's ok to say no and all is okay

Jude is doing well. He threw up on Sunday night and sucked the throw up back down into his throat before we could race to suction it so we are looking for signs of aspiration pneumonia. However, so far he is nothing but smiles and happy.......as long as mommy is holding him. He is still very vocal if I don't hold him. So we set an ortho appointment for Jude for July. His legs seem to be giving him some issues and we are going to find out what else we can do for him to alleviate the pain.

On the other side of life things are doing very well.  Emily's Smile Boxes is still sending out several packages a week. She is also planning her 5th anniversary party and it's growing rapidly. Mike's job is still well and so is mine. So for the most part our life mimicks something normal. We are enjoying it.

After my blog post that upset a reader I decided to re-evaluate things a bit in my life and I realized I had forgotten who I was a bit. I had not truly found my tongue for a long time.  I thought I had posted something really wrong and then I realized I just posted what I felt.......and that was OKAY! I didn't want to read anymore horrible tragic stories for awhile. These stories being sent to me were not associated to Emily's Smile Boxes, my personal blog, or anything else and it was truly okay to say I didn't need anymore additional stress. It's okay to say ........no. I try to teach my daughter that now that it's okay to say "I just cannot do that right now".  Sometimes we have to protect our own frame of mind and emotional well being.

I am feeling pretty rotten today. I think it's allergies, but whatever it is it's whipped my tail. I am ready for my bed. I think I will go home and take Jude into my room and flip on the TV.

A vacation and a plea

I believe a huge issue special needs moms deal with is guilt. You feel guilty for what happened to your child, anything that continues to happen to your child, for going back to work, and for not paying enough attention to the rest of your family. I believe there is some form of guilt issues swirling around in every moms head, but it seems they triple with a child with special needs. I dealt with guilt issues when Emily was sick as a child, but it's even worse now. I am not sure why.... it just is. Maybe it's the understand that Jude's life is so fragile...but isn't every life?

Special needs moms feel like if they speak about the secret guilty wishes they have then everything could collapse. We should just be thankful when our lives mimic something in regards to "normal". If our child is healthy, our jobs our safe, and our family is well.........that's all that matters..right? It is and it should be!

However, I found myself missing private time with my husband. I miss being able to go off on intimate vacations, staying out late, and acting crazy. I held my breathe as I typed this because I would give everything including my life to just keep Jude with us.

However, I couldn't stop thinking about my incredible honeymoon with Mike. For the first time in a really long time I missed just being.............still. I missed laying on a bed with the ocean breeze streaming through the windows and not a worry. Then I snapped myself out of it and reminded myself I have a whole lot more than many other people do and to be very very grateful! I looked around at my nice house, my beautiful family, and I realized what's really important.

After receiving a message I decided to rewrite my last paragraph of this blog. Sometimes we mean our blogs to portray exactly what we are thinking at the time we write them and when reread that sound completely opposite of our thoughts. So let's try this again. Five years ago we found out Jude had a stroke and five years ago Emily started her charity. In those past five years we have received thousands of stories and requests for Emily's Smile Boxes. These stories are tragic, sad, and sometimes hard to read. Many times these stories have ended in the death of the children we send the boxes too. It can get overwhelming, but we signed up to do this. Emily can no longer read the stories with each request as they take an emotional toll on her. However, I read them and relay to her if she needs a box made for a boy or girl. However, over the past five years I have also had well meaning friends/family send me a lot of random struggles of people on the internet or acquaintances through facebook.  I know it's with good intent. They think because we struggle that we will want to see someone else struggle too, but that's not the case. It's different if people reach out to me through my blog or through the charity requesting a box. When you send us other stories without requests for boxes and just for us to read for the sake of reading it's just more sad stories on top of sad. Make sense? I guess my point was that I read a lot of blogs of friends we have that struggle. I see a lot of struggle everyday through the requests through the charity. I hear a lot of struggle through the emails I get through my blog. So rest assured I see these stories everyday and relate to them. I help others as much as I can, but sometimes all the stories take an emotional and physical toll. So if I don't know them, or they don't need a box, or you don't know them personally sometimes it might be okay to skip sending me one or two of the sad stories you run across. It might save me a few tears that day.

A giggle or two!

Jude seems to be doing well lately. He is very smiley and social with all of us. He is going through a mommy phase and wants me to hold him as soon as I get home. If I set him down for any reason he expresses his displeasure very loudly!

He was running a low grade fever on Wednesday night of 99.5 axillary. This concerned me because this is how his last pneumonia started out. I don't even want to think about Jude getting pneumonia for the 7th time! I am not sure his little body can stand it again. Luckily the temp has stayed normal since then.

Here is a short video to show you show funny he thinks dads bee noises are.

The reason behind my "Turtle" post and my stance on Gay rights

Jude is finally doing much better. He is full of big grins that include his full dimple when he is smiling. He is still congested, but that seems to be a normal issue now and we have learned to work with it. We administer CPT (compression therapy), massage his chest to get congestion up, and position him in the best manner possible in case he chokes. His therapists are back to a regular schedule and his teacher is now coming back to the house.

Emily is also doing well. She has made 25 Emily's Smile Boxes to go to a toy drive for Oklahoma children affected by the tornado outbreak. We also purchased toiletries and so much more to send to the hard hit Carney OK that isn't getting much attention. Em also asked if we could go help some of the victims this weekend and I told her that we would try. If we don't make it to Oklahoma we are striving to make it to Cleburne TX.

So today in Grapevine (my work town) they voted to allow openly gay young men to join the Boy Scouts Of America. Honestly, I am not sure why this was ever a debate up for a vote. We all have our own personal preferences whether it be men or women or Hispanics or Caucasians. My mother raised me to see no difference in anyone as long as they had a good heart and for that I see myself as blessed. When I look out to a crowd.......until you prove me wrong you are my equal and everyone else's equal.

When I was in middle school I went through a really hard time. I had very short hair, braces, glasses, and I was skinner than LeeAnn Rhimes post divorce. I was given the label "Turtle". Literally everyone in the entire school knew me as Turtle. I got so used to the name I answered to anyone (including teachers) that called me by my Moniker. I finally broke free from my situation and changed my appearance and was never known as Turtle again. However, I always kept that true identity inside and learned to proudly own it. However, on Facebook tonight I witnessed people calling my gay friends queers, powder puffs, faggots and more. No one likes to be called names!!!

You can disagree without allowing vicious and cruel words. You can disagree with gay marriage. You can agree to civil unions and not gay marriage. You can disagree with people being gay in general, but calling people faggots, queers, and other horrible names is just not acceptable to me. You can agree to disagree without name calling or violence. I believe you can choose to express your opinion through positive channels or choose not to express it around me at all. Doesn't mean your opinion is wrong...doesn't mean I am right, but it does mean we all deserve respect. If you cannot debate your opinion without being cruel then you need to look inside your soul.

For those who have used such cruel words and cannot have an open mind here is something to think about. My sons weekend nurse is gay. He takes care of Jude in every aspect an invalid must be cared for. There are some people that would look over the fact that Allen loves Jude as a patient and a person and just choose to be horrified we allow a gay man to care for him. They would look over the fact that he is a good Christian man who gave up 20 years of his life to serve those less fortunate in Africa. They would look over the care he gives my son..........and just call him a faggot. That's not okay with me. So several people found themselves deleted off my Facebook and I am sure several more will delete me today. To them I say..........I will gladly sit next to any person of any race, religion, or preference as long as they have a good heart. In the end when the Lord asks me why I will tell him because you told me "Thou shalt not judge and to love one another and so that's what I did".

A lesson in simplicity and Emily's weekend.

As I sat down to write tonight I tried to form all the words I wanted to put in my blog. I wanted to write about two subjects that tie together. First will be Emily's pageant and then my quest to get home to Jude.

I blogged the other day of how Emily mustered the courage to try Miss Tarrant teen only two weeks after Miss Dallas Teen. Some people see pageants as shallow, but if you knew all the work these girls put into this "sport" you wouldn't ever think that again. The other night we had some of Emily's friends over and they wanted me to ask them practice pageant questions. So these little boys got in their "pageant stance" and I asked them about world topics. Finally one of them looked at me and said, "wow, you have to be smart to do this". I giggled. So Emily woke up feeling very ill on Saturday morning and I was not happy with her. Granted she could have been worn down from the week of hospital visits with Jude, but she also didn't take responsibility and go to bed on time. We had a discussion about how responsibilities and commitments come before friends and texting. I asked her if the boy she likes would be up so late the night before a big football game. She said he wouldn't have been and said she really wanted to do this pageant and was going to suck it up and get herself together. I told her that in life there are many times we have to be at work, class, or a big event and if we don't prepare we have to accept the consequences. She agreed and she made the decision to walk into the performing arts center and give it her very best shot and boy did she! She looked gorgeous in swimsuit preview. This is where the judges have their first look at the contestants. Then she went to interview and she texted me that she thought it went very well too (no I can't be there...it's all up to Emily). So the primary show was at 7pm and all the girls performed in their swimsuits and then evenging gown. Then they announced the top three finalists. Emily was the last finalist called and we were so excited. Then she had an on stage question and I am sure my heart was beating as fast as hers was. They asked her "Who do you think is a good role model today?". I saw Emily's mouth turn into a smile and I knew she already had the answer in her head. She replied "Dr Rice...Condolezza Rice. I got to meet her when I flew to Washington DC for my charity and I found her to be a very inspirational lady and leader. Also she was an expert pianist at the age of 3 which I think is amazing". It was something like that and I was impressed. Even Mike leaned over and said "Well she knocked that out of the ballpark". After the the on stage answers were calculated they called the finalists back to the stage. They called the second runner up leaving Emily and another very beautiful girl. I saw Emily reach for the girls hands and they both waited to hear the announcement. They called the first runner up and you could see the answer of who won on Emily's face in the picture.

At that moment all the practice and work faded into excitement. It didn't matter how big or small the pageant was it was just her moment and she was thrilled.

So in celebration style we took Emily out to eat at Saltgrass...she was STARVING. She wore her banner and her crown into the restaurant. Mike asked, "Emily this is the first crown and banner I have seen you wear and keep on.......why?". She replied, "It just means a lot to me. This is hard work and I am just proud of it." Sometimes parents that are involved with children in pageants lose track of what's important. They begin to think that their child always deserves a title or a crown when in fact it's the judges decision. The USA side of pageantry is just as expensive and just as time consuming, but it teaches you to truly appreciate a very beautiful bouquet of pink winning roses and to be very very grateful for them! I sometimes think a lesson in being grateful for simplicity is a lesson everyone should have to learn.

I didn't get to see Jude much yesterday because I was taking care of Emily's needs at Miss Teen. I kept picturing his little face with his bright eyes. For some reason I kept thinking about him. I came home twice and gave him kisses, but I had to run back out again. He was already asleep when we got home. Today I had my nephews dedication, but after that I really wanted to see Jude. Mike had family in town, but I just wanted to sit in my house and do nothing. I grabbed Jude and we snuggled into the couch to watch a few shows. It's simple with Jude. We don't have big ambitions it's just all the tiny moments that are perfect... just like the simple pink roses!

Hitting the nail on the head

My cousin is an amazing writer and she also loves a great read. Today she sent me Heather Lanier's, "Waiting To Love My Child". Since I come into work early on Friday and cannot make phone calls I took a minute to read over the article. It literally took my breath away. What a profound outlook on life this woman has and she expresses perfectly what I have wanted to say. Recently I was sitting on the couch holding Jude and I was talking to him in my mom voice. He looked up me with these big bright brown eyes. He knew he was my baby and he knew I loved him with all my heart. At that moment I realized I had been really afraid to take all of Jude into me. I always loved him, but it was a moment of realizing I needed to let my fear of losing him go and just appreciate him for who he is and all he has brought us. So this quote in her writing really got to me.

" I think it’s to be brought to our knees with a love we have no choice over. To surrender to that love. To say, Yes, yes, yes, I will love whomever we find ourselves holding. Nothing seems to underscore this love more than the possibility of its loss."

Another moving part of the article was when she was pumping her gas and realized everyone around her was able bodied. I have done that. I have looked around wondering why the world keeps turning when my child is so sick. She said "I was pumping gas, and the world, including the gas station, was filled with able-bodied people, and my child was not one of them, was now slated for a swallow-study to see if she could even handle her own spit without slowly killing herself". Man I can relate even down to the swallow study!

She has had the courage to try to have another child, but I haven't. I haven't found the courage to do that because of the exact fear she had and what turned out to be the actual realization that something can go wrong again. However, when reading her article I didn't feel sorry for her or want to help her. I found her brave and inspiring. She had found her own courage and her own emotional well being to survive this issue and be the best parent to a wonderful child.

I encourage you to read the article........read it for me. It's the best piece I have ever read that is able to express what it's like and even though she doesn't know me personally I felt like she was speaking for me. http://www.salon.com/2013/05/07/waiting_to_love_my_child/

Ironically while we were in the hospital Mike was contacted by a friend who was on the same floor we were and her son had just been diagnosed with the same issue the child has in this article. As much as hearing the Holland poem now annoys me it's the first thing that went through my head. "Welcome to Holland". If you don't know the poem you can Google the title and it will pull up.

Jude is doing much better and we thank everyone for your prayers.

Jude is home and with an update

Jude is home from the hospital. He actually came home Monday afternoon I just haven't had much time to update my blog. He had pneumonia in the mid left lobe.

He was very happy to be home and gave us lots of smiles on Monday afternoon. However, yesterday Charlotte noted that Jude needed to be held and was grumpy. When I got home he was the same way. Jude was not happy unless someone was holding him and even then he complained a lot. Granted he is still ill and pneumonia takes awhile to conquer, but of course it concerned me. He also felt like he was heating up again to me, but luckily his temp stayed normal. He was still sleeping when I left today and Charlotte noted his temp was still down. She is also using the NT tubes for suction to try to keep his airways clear.

I got up about five times last night checking on Jude. I was worried about him. I am still worried about him. I guess that's normal.

Jude's update

We are at Cook's Childrens. We bought Jude ito the ER yesterday hoping they could give him an iv round of antibiotics with fluids and send us home, but that wasn't the case. They ended up admitting him. Thepneumonia in his lower left lung had gotten worse.  WE thought this might be the case because Jude kept vomitting and therefore couldn't get the medication into his system. Also, when he vomits he aspirates and thats what starts the pneumonia in the first place.

They took Jude off all his feeds to let his tummy rest. They gave him his antibiotics and fluids all by IV. They are doing breathing treatments every four hours and CPT. However they won't release Jude until they get his blood culture back, which will at least be Monday.

He seems to be in pretty good spirits and we did get some sleep last night. I know Jude is anxious to get home, but we want to make sure he is well. I think this is our fifth round of pneumonia or maybe 6th? Any parent with a child like Jude can tell you his is one of our biggest concerns.
I do want to thank a few people in a public manner. We brought all of Jude's items with us but due to lack or sleep and rushing from work I forgot everything. My long time fiend Kelly braved Friday night traffic to bring me two pairs of sweats and t-shirts. She even snuck in goldfish and oreo's as snacks. She also texted and called today several times checking on Jude's condiion and me. Then my friend Gina showed up at the hospital bright and early with breakfast, movies, and cheer. She literally stayed the whole day and only took a break for lunch. She even sat her the whole time with Mike while I went home to shower. Not to mention my co-worker, Fleck, Linda, etc who were all texting and checking on us. Thank you guys...it means a lot. I understand that Jude gets sick a lot and I appreciate my friends realizing there is nothing routine about being confined to a hospital room.

Emily is with her dad and friends. Her best friends parents leapt into action by letting Emily come home on the bus with their daughter and staying the night. Mike is going to bring Emily up tomorrow to see Jude.

I am currently on the hospitals great "get well network" so my blog is going to run together and have misspells because this keyboard is the WORST! However, it's so nice they offer these items now. It's amazing how comforting this hospital is for Jude.

Jude is just sick or is he better? I am so confused!!!

I look back at my teenage years and I wonder why I waisted my time and not furthered my education. I would have proudly have become a nurse or a doctor, but I didn't take the necessary steps to fulfill that career. However, somehow I got thrust into that field. I sometimes think about pursuing a medical career and then I have nights like tonight. I am confused. I want to think Jude is getting better, but it doesn't seem like it tonight, but then again it does. I am so confused that I couldn't tie my own shoes right now!

When I got home Jude was asleep on his futon which is unusual at 6:30. He slept until about 8 and he woke up very "spastic". Spastic means he is having a type mini seizure type activity. He body is just "spastic". I held him for about thirty minutes while he fought with this issue. This is not unusual for Jude and fairly the norm when he wakes up, but it was a bit excessive. I held Jude while we watched the Big C and I tried to get him to smile for me. Occasionally he would flicker a tiny grin at me, but he wasn't his normal self.

I began to feel Jude heating up. The back of his neck was hot and then his forehead started to heat up so I took his temp. 99.7, 99.9, 100. ....sigh... low but still. Days of antibiotic but the fever has crept back. I know the doctor said if Motrin can control the fever than Jude shouldn't be in any immediate danger, but my mind began to wonder if this is normal or if there is something else going on. So we took Jude to his bed to get him ready for bed. I hooked up his feed to his tummy so he would get some substance prior to all his medications.

Mike started his breathing treatment now laced with more abuterol while I gave him his medications. I noted the below.

Fever - axillary 100 (add a point)
Color - he looked pale (bad)
Smile - slight smile so that's good
Toenails - blue...very blue...but cold. Is this a temp issue or oxygen?
Fingernails - pinkish (good)
Noted Jude trying to pull the mask off his face during breathing treatment (this is good)
Cough - bad.........actually worse I would say (bad)
Breath sounds - Diminished on the lower left side, but mid level seemed better. (real bad but good) 

Wait........suddenly Jude threw up. Sigh. Throw up equals aspiration. He keeps throwing up since he was diagnosed. We sprung into action with towels and suction.

So is Jude getting better, worse, the same? I have no idea. We are watching him closely. I have no idea how doctor's deal with their best educated guess on a daily basis. They have my admiration.

On top of being concerned Jude's little "Seizure cat" is very flustered tonight which makes me wonder if he can feel something I can't or if they little piece of fur just wants outside.

Jude, Emily, and me

Jude has had pneumonia again and it's not been pleasant. When Emily and I left for her to compete at Miss Dallas Teen Jude was not feeling well. My husband said he would watch him and let me know if he needed to go into the doctor. We all thought Jude was just suffering from another sinus infection or allergies. Once we got home on Sunday night I noticed Jude really didn't look well and he had a very rough night. My husband was trying to avoid Jude being on antibiotics again and I definitely understand that reasoning. However, I decided to go ahead and take Jude to the doctor on Monday. Once there I was sure they would diagnose him with the sinus infection and send us on our way with mediation, but I was wrong. He had mid lung pneumonia......ugh! So now it's gotten to the mid lung vs the lower lung.

We got another upteen bottles of antbiotic and a probiotic and we headed home grateful that we were going to the hospital. The last few nights have been tough and I have had very little sleep, but Jude is finally starting to smile and laugh again. That's a great sign. He was very bright eyed whenever I got home last night, but his cough is still really bad. Now I just have to get myself in check because I am very grumpy.

Emily did very well at miss Dallas Teen. She looked beautiful on stage and I think she really held her own for being only 14. She placed as a runner up in evening gown which is a great accomplishment. She is going to try one more time for a city title on 5/11 before she focuses on state again. However, I she did express being a bit discouraged and waiting until she is older. Mike and I talked to her and told her how Tony Romo was not selected in the first NFL draft he was in. How he was picked up at random and practiced and practiced. Now he is one of the highest paid quarterbacks in the league with some of the best stats (Yes, I know he needs a better line but this isn't a football debate). We talked about how some of Emily's friends are really good at cheer and how some are really good at dance. Then we asked her "What are you really good at Em? What do you truly love?" She replied, "pageants". We asked "then with practice what do you think you can really accomplish". She said "Miss USA!". There ya go!

After the pageant as tired as she was Emily mustered up the strength to visit a local Elementary school to talk about the benefits of community service. It was at Jude's prior school. They had invited her to come speak and she was so excited. She made her own power point presentation to help her during the presentation. Here she is with the principal.

 

I also wanted to say I don't post these posts on blogger or facebook because I need anyone to feel sorry for me. I am a strong woman and capable of handling any situation. I do this for information. However, I can easily get irritated with people that don't think before they speak or don't recognize what a great situation they have so forgive me.

The article Mike sent to me about special needs moms. This is a must read

My husband sent me this article written about special needs mom. I get a lot of articles, poems, etc from people but this one really hit me. It is so true. I encourage you to go read it so you will understand my responses. I don't think any of the "special needs moms club" writes these pieces so people will feel sorry for us or feel a need to reach out. We do this so people will understand.

http://www.huffingtonpost.com/suzanne-perryman-/6-secrets-special-needs-moms-know-but-wont-tell-you_b_3081692.html

1. I couldn't agree more. I may actually get out for a night to see people but it's rare and even when I am there I still feel lonely. It's a different type of lifestyle and any time I wish I had the freedom to run out to dinner or to a movie I feel very guilty. I feel guilty because I know the only way to have that freedom is to lose someone very special to me and that's not acceptable.

2. Wow, this is true. Just this week we had a massive fight over the failure of understanding what the other party needs. We don't get much time to ourselves for "us" time. Yes we have a nurse and we are OH so lucky but that nurse is for us to work. On the weekends we have so many errands to do while the nurse is there we still don't get much time to ourselves. However, we recognize we get more than a lot of other special needs families.  We also get zero time to work out so I don't feel as pretty as I used to which affects the way I display myself to my husband. However he doesn't ever seem to mind.  My husband is a great dad. He is my best friend and I love him dearly.

3. I would prefer someone ask me what happened to Jude. Last week I had someone that was very inquisitive. She herself had battled cancer so I think that is why she is okay with her questions and I had questions for her. It was refreshing to have someone that asked me so much. I want to share with you what happened rather than you just wondering. I am also not easily offended by anything rather it be Jude or just everyday life.

4. Oh my goodness this fits me. I am constantly convinced I am dying young like my mom did. Well okay not so young anymore, but you get what I mean. I am always worried about something happening to Emily or Mike too. Why? I worry about myself dying because I don't want to miss the good times and I don't want to leave my family without me. No one will care for Jude the way I can care for Jude. I don't want him in a home if something should happen to Mike and I both and I worry his care will just be to much for another party. I worry about something happening to Emily and Mike because I just don't think I could make it through something like that. Ugh, just hate thinking about it.

5. That is summed up in the article. We can tell what Jude needs just by his body language.

6. Jude cannot clearly say he loves me, but he tries. I know what he is trying to say. I also cherish each time Emily says those words and I cherish them each time Mike says them. They mean the world to me. I once wrote about and article my cousin shared about a disabled son telling his mother than you for caring for me and she replied it was her honor. I totally agree. It's my honor to be the mom and wife of my amazing family.

Jude's sleep study and the bombing.

This weekend was a whirlwind of appointments and attempted relaxation. I took Friday off work because Jude had a sleep study appointment at the Plano Pediatric Sleep institute. They were planning on studying his recent seizure activty and possible additional sleep apnea. I sent a picture out to family that looked like this.

However this was only partially correct. This is how Jude really looked.

 

 

He hated it! He cried, and cried, and cried. I administered two doses of his Valium and he still cried. He tossed, he turned, he whimpered............he was miserable. I don't think we will ever do it again. I trust the doctor's that they were trying to properly measure his seizure activity and measure his sleep apnea. About 1am I comforted Jude and I then strongly instructed him to go to sleep and he was a good boy and finally minded. He slept from about 2am - 5am. Once the attendant woke us up we gladly packed out bags and headed for home. We entered our neighborhood only to find that NASCAR had already shut our roads down..........very very early in the morning. So I found a back route via a dirt road to my home and slept soundly in my comfy bed for an hour (Fleck would say my bed is NOT comfy..lol). When I got up Jude was still sleeping. Mike and I kissed him goodbye and headed out to celebrate Mike's big 40th birthday.

We headed to Horseshoe Bay Texas and the Horseshoe Bay Marriott. I had points to redeem so the vacation would only cost us dinner and gas. The overall rating of the resort was about a 7, but overall it was a great mini vacay! The wildflowers were amazing in the Texas hill country. They looked like carpets vs our scantily laced roadways. Even the cemeteries were loaded with bluebonnets. I sent this picture out to a few close friends showing a wildflower perserve we found.

The flowers were so colorful and just made me happy! Not to mention there was a great horned owl at the preserve with her two baby chicks. It was an amazing site. She was close enough to see she and her babies very clearly.I felt very honored to look at her so closely.

We took all the country roads we could to our destination and then back again. It was very nice. It gave me a chance to breathe deeply and realize what matters. Sometimes we focus so much on what others think, what they do, and what they see that we forget to...... just be ourselves. It was nice to be reminded of that.

Once we got home I thanked my friends "The Gena/Gina's" and our nurses that helped make this quick excursion possible. I held Jude and listened to Emily's stories. I was happy to be back home. The people that helped make this overnight trip possible are such angels!

So I got back to work today and it was very very busy...which is a good thing. I have realized as an adult that being busy means work... which means you get a paycheck! Then the Boston Bombing hit. At first I was so busy that I wasn't my normal "reporter" self. I didn't panic, or share the information, I just continued to work. However, once I got a break and reviewed the reports I was just heart broken for those that were affected by this tragedy. I have never really understood violence against others. A victim of violence myself I have tried to find a more positive path in life and therefore I cannot understand those that seek a more darker path. I know some of my friends prefer not to even know that tragic situations happen. Even that can hold both positive and negative outcomes even though I can understand their reasonings.  However, I felt the need to mourn for those involved in this situation. My heart had to break  moment for the mom/dad that lost their 8 year old and I had to ask why. What possible polictical statement could their be found in bombing a mass positive function that promotes charities, proper health, and achievement of the human body. I don't get it.......however I guess there is a lot I don't get these days. From friends not being who they say they are to horrific worldy events. Sometimes you just have to throw your hands up and say........I surrender. I accept things are sometimes out of my control.  All you can do is be the best person YOU can be.

Me time!

Last night I came home from work and Mike's parents were over for his birthday. They are elderly and sweet as can be. I listened to his mom misunderstand everyone's discussions and his dad tell me stories from his own childhood. It was great except for the fact that Mike is from a family of 7 and speaks louder than anyone I know when his family is around. It literally makes Emily and I laugh. So when we all parted ways I logged into my computer for a brief moment and took a breath. Emily decided to talk to me at that very second.

Me: huh?
Emily: Gees mom you cannot multi-task
Me: Em I am listening just give me a minute
Em: It's like it takes a second for your mind to wrap around what I am saying
Me: It's because I do so much multi tasking through the day
Em: uh huh

She probably just wanted my attention but I needed a minute. So later that night as  I was heading towards Jude's room where I had set him up with his breathing treatment. I was pushing Jude's IV feed pump with my foot, while holding his toothbrush, and holding all his medications that I just drew up.  I passed Mike in the hallway and playfully muttered "Em says I can't multi task". Mike chuckled and I heard Emily say...

Em: No mom I said you can't multi task while you are on the computer
Me: That's not failure to multi task Em that's me time
Em: oh

She got it!

Jude's little room

When I learned I was pregnant with Jude we were so excited. I did the normal things any expectant mom does like planning what the room would look like and the colors we would use. I knew I wanted to go neutral because our plan was to have two children. Then Jude threw us for a loop. I had decorated Jude's room in adorable farm animals. I decorated large letters that spelled his name that hung on the wall. I had adorable bedding, a hand painted rocking chair, and so much more. Then we kept getting more bad news.........and I shut the door. I couldn't look in his room anymore. Material things don't mean much when you aren't sure your baby will make it.

When Jude was born he spent most his time in our room like most newborns do. However, he stayed in our room because of his seizures and diagnosis that were given at three months of age. I never ventured into Jude's room much except to look around. I would grab some clothes occasionally, but eventually the clothes even made their way downstairs. However, I will never forget taking Jude into his room and laying him down in the crib for awhile. He loved it.

This is one of my most precious video's I keep on youtube.

Now Jude has his own room downstairs that was made from a converted dining room. We still have a baby monitor that picks up if he is vomiting or seizing. We have a little armoire that holds his clothes and a shelf system that holds his supplies. The walls are red since we know Jude can see that color and the ceiling is blue. Emily spent an afternoon perfectly placing glow in the dark stars on the ceiling so it would look like Jude was outdoors at night time. He has shelves made out of tree branches, a bear rug, adorable matching bedding, and "Welcome to Camp Juders" written on his wall. I know Jude doesn't understand what his room is about, but it's still his room. One of the first things the EMT'S always report to the hospital upon arrival from an ambulance is "he is well cared for with a very nice room". That is both nice and sad to me. Nice they take the time to realize Jude is so loved, but sad that so many special needs kids are unloved and not treated well.

I wanted people to see more than all Jude's equipment when they walked into his room. More than a hospital bed, an IV pump, and oxygen meters. I wanted him to be a kid and my kids have special rooms. It's not that important to some and in the grand scheme it's really not important at all, but I still wanted it for him and I am proud he has it.

A dicussion about divorce and karma

I am writing my blog today without some names to protect those involved with this situation. I felt like I needed to write about it because the whole situation to relieve some stress.

I have been blessed in my life with two amazing children. My first born was with my first husband Joe. He is a kind and decent man but we just didn't click as husband and wife anymore. It was more like brother and sister and I just wasn't happy. It was me that broke off the marriage and I still remember the guilt I felt over hurting my ex. He had a hard time at first, but never once did he ever question my mothering skills. In fact, in counseling he said bluntly that the best place for Emily was with me and that he would never dispute that. The divorce was hard, but it went very smoothly because we were both looking out for our child's best interest. We negotiated on child support, how it would be paid, health insurance, and everything else that is involved with the dissolution of a marriage. We agreed to never say anything negative about each other or the situation in front of Emily........and we held to that deal. We never plotted or schemed to use her in anyway. We never coached her on things to say or ever put her in the middle. It took awhile but now my ex and I are very comfortable around each other. He provides above and beyond what we ask for Emily. In fact, he just gave her the money to obtain her new pageant dress which is amazing. He is a good dad and I KNOW I am very lucky and so is Emily. Not only does she have an amazing dad she also has a great step dad. The kid is set.

So currently I am watching a very good friend of mine go through a very nasty divorce. She was stuck in a loveless marriage that she endured with a smile for a very long time. When she finally got brave enough to ask for a divorce she was under the assumption her husband would comply in the best interest of her children. However that hasn't been the case. One of the problems with this divorce has been that my friend is probably one of the nicest people you would ever meet. I joked with her once that she probably woke up singing Disney songs. I was not at all shocked when we stayed the night at a hotel and the next morning I heard her in the bathroom singing the Sound of Music. I promptly informed her it was way to early in the morning for that merry crap so she nixed the songs until about noon. FYI ~ Don't ever try to watch a musical with her she will sing every verse. Anyway, due to her profound gift of being so sweet and innocent she has wanted to believe that her ex husband still has a heart. She has gotten some very horrible wake up calls and it's been hard watching her golden heart start to turn black due to the cruelty inflicted upon her. She has learned that there are some very dark sides of life. She has slowly started to learn that she cannot just lay down and let someone walk all over her, but it's been some rough roads getting to that point.

I wouldn't use the term "like" for her ex husband, but I would associate with him. I didn't like the way he treated her during their marriage, but I kept my nose in my own business. She would rarely get away without him calling demanding a time when she would be home because he was tired of watching the kids. Those phone calls would also annoy the crap out of me when my friend and I were hanging out. I don't remember him EVER taking off work to take the kids to a doctors appointment, I never once watched him change a diaper, I never once saw him cook, I never once saw him clean, I never once say him be involved with the kids when they were married. I think I may have seen him hang a piñata once as my friends insistence. I did see him constantly playing video games and ignoring all aspects of life going on around him. I also witnessed him "tink" his beer bottle on a table when he wanted another one...........problem is my friend brought it to him. I would have pelted it at his head. Now let's go over what I witnessed my friend do. I saw her crafting with her kids, taking them to see Santa, working with her son on his schoolwork that he was having such difficulties with, encouraging her kids to eat their meals, buying them clothes, taking them to doctor's, planning their birthdays, and so much more. She was really the epitome of a good mom. If anything her only downfall was she let them walk over her sometimes too, but she is getting much better at stopping that issue.

So during this split the ex husband began insisting on a 7/7 split and to give my friend ohhhhh about $150 a month in child support..........sigh. Now let me state that I understand some people agree with a 7/7 split. I don't! I don't think it's in the best interest of the kids and I take issue with a man that was not involved with the kids during the marriage but then insists on a 7/7 split after the marriage. This suggestion has financial gain written all over it. However, if a man is genuinely the primary care giver at home and is actively involved then I could see the 7/7 being suggested. Again, this was NOT the case. A 7/7 split can create issues with children who have two different parents with two different views on homework/study time, two different ways of eating, two different sets of bedtimes, etc. However, because my friend is SO nice she didn't insist the kids stay with her until the divorce was final. I won't go into all the details of their case, because it's not my case to share. I would go into examples of horrible nasty things that have been said or done, but again it's not my case to share. I could go into the other settlements in the decree that are 100% ridiculous, but again it's not my case to share. I also don't want to jeopardize anything. However, I will say that a real man knows when to step up and do what's right for his children. I real man knows that a lengthy court case isn't healthy for the kids and in the end will cost him a whole lot more than it would to do what's right. A real man wouldn't belittle, bully, or manipulate the mother of his children. A real man could stand up and admit she was a good mother and again would do what's right!

"As she has planted, so does she harvest; such is the field of karma." Sir Guru - Having people rally around you and support you both financially and emotionally is the result of good karma. It's the result of the amazing deeds another person has done in their past expecting nothing in return from others. It's amazing how people come forth to help in a time of need when you have done nothing in the past, but be kinds to others. However, I have another quote to share too "Every action of our lives touches on some chord that will vibrate in eternity.  ~Edwin Hubbel Chapin" So I encourage you to think about what you are doing in your life today. If you knew that the world would give you back what you are putting forth would you accept your are putting forth your best? If not........rethink what you are doing.

The loss of a life and a very good night

Last night when I got home Mike's dad had stopped by and brought an old picture of Mike to show Emily. Mike chased Emily around the house trying to get the picture from her so she wouldn't share it with the world on facebook. She finally brought the picture to me and I laughed at how adorable he was. I then looked at the picture and told him how similar he looked at this age to the boy I once dated that took his own life. I am sure that sounded odd to him, but he knows how much I love him personally and that this was a long time ago. I then asked him to get down my old trunks from the attic. Since he loves me so much he braved the dirty attic and brought them down.

Emily and I spent hours in my living room floor sorting through my old items from my past. I had my baby blanket, my teddy bear, old pictures, newspaper clippings, drawings from friends, my old phone list (since we didn't have smart phones), posters that hung in my wall, my mums, and so much more. Most of it is falling apart now, but she still enjoyed looking at it all. Then she started flipping through my yearbooks and she had the best laughs at how big our hair was in the 80's and 90's. We read over all the signatures from my friends and I laughed at all the memories I had. She snapped pictures of her friends parents that were in my annuals and sent them via text. Then I pulled out the news clipping of the boy that lost his life. She looked at it and said "he does resemble Mike's picture". She quickly read through the notification about the tragic incident and handed the paper back to me. I then scanned through all the letters his parents sent me encouraging me to carry on and have a fulfilled life. I remembered how hard it was to deal with his loss and how long it took me to feel okay again. I remembered when I finally let go of the heartache that I was standing in the dark over a small stream and I let a bunch of our notes go. I watched them float away and I guess at the time it was my way of watching the pain go with them. I have always encouraged Emily to come to me with any issues she may have. I have also encouraged her to never think someone is just "kidding" about committing suicide and to tell someone ASAP. I made the mistake of waiting. Twenty five years ago today I found out the hard way that you never think someone won't follow through.

I thanked Emily last night. I looked at her and tried to keep myself composed but felt a few tears run down my cheek. I said "Emily there was probably something in my subconscious that realized before I did that it's been 25 years ago and that's the reason I wanted my trunks. However, you turned what could have been a really sad time into something I will always remember fondly. I had the best time looking through all my old stuff and laughing......so thank you". She smiled and said "I really had a great time too!" It was priceless.

Jude, Bigs, and homes

Last night Jude went through one of his "hold me mommy" phases again. So this morning when Charlotte got to our house I did "Jude's" voice for her.

Jude: "Charlotte I was not going to let mommy put me down last night. Any time she put me on my futon I would say AHHHHHHHEHHHHHHHHHUUUUUUUUUUUUUU very loudly!"
Jude thought that was hilarious and laughed outloud. He was very smiley and very happy this morning. He also smiles so big any time someone says "I love you Jude". He knows what it means and he knows it's a good thing.

His teacher is now coming to our house twice a week. She just loves him so much and we are very lucky to have her. She constantly thanks us for "allowing" her to be in Jude's life. It just astounds me how many people are touched by him. He just has a good soul. So now Jude has his nurses, his therapists, and his grandma coming to the house every week. He is getting lots of attention.

I have an update that Biggy is doing well. He has been having some issues eating, but that's normal for him. He is finicky and any change of scenery makes him lose his appetite for a few days. I was updated this am that his new owner mixed some soft food with his hard food and he gulped it down. She also sent me a picture of him laying on the couch with his new friend the mini schnauzer. I am told if Bigs whines the schnauzer runs to his side. So I think he found a "life partner".

I will update more when I can. I have been VERY busy at work, but that's a great thing. It means people are buying houses and our economy is picking up!

Bye Bye Biggy

I made a hard decision last night. One that I am very teary about right now and one I have wrestled with for some time. 

I said goodbye to my little Biggy

Bigs is a great dog. He is calm, submissive, and smart. However, his shrill bark would constantly give Jude large seizures or spasms. Which would in turn cause someone to yell at Bigs and then he would take out his frustrations on our floors. I will miss Bigsby sitting by my feet every night. I will miss him swiffering the floor when he wanted scraps that I dropped while cooking. I will miss Bigs sitting at the base of the stairs trying to out maneuver the cat so he could get to his crate. I will miss him thinking my friends and the nurses come just to see him vs the family. I will miss him nipping at Casen's feet when he left because he either didn't want him to go or thought he was protecting me. I will miss him crawling on top of my head when there is a thunderstorm (literally).

Bigs and Emily just never really hit it off so she wasn't very upset last night. I had cried several times the night before so I tried to keep myself calm last night. I had some friends that are huge dog lovers that wanted Bigs. They are actually perfect for him. They are at home during the day and only have 1 other very small older dog. They spoil him rotten so I know they will spoil Bigs too and that's what he needs.

They came to visit to see how Bigsby reacted to them and it was instant love. So I grabbed a big plastic bag and packed up his bed, his blanket, all his clothes, and his mountain of toys..............and then put him in their little crate. I was determined not to cry in front of them or him. However, I kept picturing him waking up the next morning wondering where I was at. I reminded myself that this is best for Bigsby. He won't be yelled at ever again for doing what comes natural to him. He will be loved, spoiled, and cared for.

You were a good dog Bigs...............thanks for loving us.

A weekend update

Saturday was a good day. I took Emily and Mike to meet my cousins family for breakfast. After we exchanged some laughs we parted ways to complete our day. Emily and I went to get her shoes to go with her interview dress for Miss Teen. She picked a pair of funky but cute shoes to go with the darling dress she picked out. I said "I don't think those are normal interview shoes". She replied "well I am not normal and they show off my personality". Well said......I let that subject go. We then went to get her hair done in Dallas which afterwards I professed to her that I would be buying MYSELF some clothes and items in May. She agreed.

Once I got home my husband was frustrated from trying to put together a pottery water feature he has had pictures in his head. Jude was sleeping soundly.........which I found odd because he seems to be sleeping a lot more lately. Once Jude woke up I grabbed him and we sat together on the couch for a long time.

Jude's seizures have increased along with the sleeping. The neurologist cut the new Artane down to once a day. I thought I would see a marked difference this weekend, but I didn't. Mike is not convinced it's the new medication, but I am. Yesterday Jude cried for over an hour, but I think that's because our little dog had given him several seizures due to his barking. However, for the most part Jude is happy. He wants to be held a lot, but he is happy. It's always a mystery with Jude..........wondering if it's just "Jude", medication, or a sickness.

Easter was a good day too. We don't do much at my house in means of a big dinner. My family is a bit scattered around so it's hard to gather everyone together. So I sent Emily with her dad because they do a huge hunt, dinner, etc. Mike and I stayed home and we worked our buns off. I cleaned the entire Emily's Smile Box room and sorted everything into appropriate bins. It looks so much better. I marked all our garage sale items, cleaned my closet, potted plants, Mike cleaned the carpets, I unpacked a bakers rack and pulled it outside for a potting bench. So it was a very productive day.

Jude is having his revaluation for the program he is under in Texas. Due to the cuts to these programs he will be losing some of his benefits. I like to say it's the fact the state thinks Jude has gotten better, but the reality is there have just been governmental based cuts. However, we are still lucky that he qualifies for benefits and help. We don't use all our benefits each year anyway. However many kids I know are losing their benefits all together because they no longer require skilled nursing. Due to Jude's aspiration and other issues he is determined to have a medical need. I am sure I could handle Jude on my own via my nursing degree obtained through osmosis (lol), but I work. We are also VERY lucky Jude gets some nursing on the weekend. We love and trust his nurses and it gives me time to spend with Mike. I think this has been vital to keeping our relationship healthy.

I will leave you with this quote because I feel it's needed.
 Happiness depends upon ourselves.
- Aristotle