A sleepless night, a sick Jude, and a possible trip

Wow what a night! Jude slept until 1:23am when he started tossing and turning again. About every half hour I had to reposition him. Then at 4am he was wide awake....grunting...moaning....and miserable. However, every time I would walk in there he would give me this side smile. So I would say, "stinker go to sleep" and he would giggle in his raspy sick voice. About 4:30 I gave him some Motrin and for 45 minutes he laid in bed doing the following...

Jude" Uhhhhhhhhhhhhh!"
Me: " No Jude do to sleep"
Jude: "Maaaaaaaaauuuuuuuuu"
Me: "No mama Jude go to sleep"
Jude: "Maaamba"

Well then I had to get up because he said my name....kinda. So I went and tucked him in again and finally about 5:15 he went to sleep. Then at 5:30 Mike's alarm went off and at 5:45 Jude's feeding alarm went off.

To say the least I am worn the heck out today. Working and no sleep does not mesh well. However I feel much worse for Jude. Poor little guy just doesn't feel well. We are giving him one more day and if he doesn't improve it's back to the doctor we go.

I am looking into a vacation for Mike and myself in October. Last February we got away for a bit and this year we are celebrating our 5th year wedding anniversary. After what our family has gone through we would like to renew our vows. I called the nursing agency about hiring a night nurse while we are away to stay with family members and friends that will rotate at our house. They were very nice and said they would gladly work with us. So our respite will go to good use that month.

I also just got word of the Branson tornado. Since my family is in Springfield which is between Joplin and Branson I have advised them to move! Many prayers for those people affected.

An upset boy and a smarty girl

My husband was very wound up from work today so when I got home and he was complaining about Jude's behavior, I chalked it up to his bad day. When I walked in Mike proclaimed that it was "my turn" so I walked over to Jude. Holy moly was he upset. He was squirming, fighting, rigid, and having seizures. I also noticed that his cheeks were pink. Even though I still tend to "mommy panic" I have learned to take a step back and evaluate the situation. Jude was warm, but not overly warm. His auxiliary temp was 98 degrees so 99. His breathing was very rapid, but he was getting air. He sounded a bit "crackly" on the back back left side of his chest, but it was very faint......and I am not a doctor. This is just my education through experience talking and our nurse said he sounded clear. So overall he was not in distress, but still not feeling well. Jude made it very apparent he was not feeling well.  I looked at Mike and said, "basically this is you laying in the bed telling me you aren't going to make it because you feel so bad". Poor Jude! We thought he had beat the crud he had, but I guess he didn't. He got so uncomfortable at one point that we considered the emergency Valium prescription we had been given for him. Luckily his other sedative kicked in and Jude went to sleep. WHEW.

So then my other child............decided to be a smart butt. She was staying after school for track practice and I reminded her that she needed to text me prior to being home due to Jude being asleep. So I get a text:

Em (all separate texts):
"at light by fountain"
"going pass fountain"
"going on road"
"passing playground"
"passing apartments"
"passing cars"

Me:" really? ok it's been a bad nite be real quiet"

Em: "passing church"
"going on road that leads to our house"
"passing trees"

me: "you are fired!"

Em: "Seeing house"
"Pulling in"
"getting stuff"
"I am here"

Me: "COME HERE!"

Granted she had no idea Jude was ill. She just said, "I thought I was funny". Who can get mad at that? I mean she did learn her smart alec ways via Mike.

So we are not sure what is going on with Jude, but we are hoping he fights through it. We have avoided the hospital for a long time (knock on wood).

Dont' KNOCK pageants! A brave little Jude

I am going to try to post this without sounding like I am preaching. Since I always sound like I am preaching my goal may be a little hard to obtain (no laughing). Emily does such amazing charity work and maintains a great grade point average in school so very rarely does she confront opposition to her hobbies. I also rarely hear comments in regards to her............(drum roll) pageants. However I do greet the occasional side glare or the occasional non returned email. I normally laugh these situations off and chalk it up their to failure to understand or a lack of caring if they do. However I have heard a faint whisper in regards to her competitions and my nationals.
When Emily was 17 months old I entered her into her first pageant at the coaxing of a family member. I bought her a beautiful cream brocade dress with a tiny cream beret. I didn't put one ounce of makeup on her and her dress was not laced in rhinestones. I took her up in front of the judges and she giggled, waved, and pranced about. She looked like a little doll with her big cheeks and adorable grin. I knew from the moment they placed that first crown on her tiny head........I was in trouble. Emily continued to do pageants while she was little until it all became to much for me. Keeping up with the pictures, clothes, and more became overwhelming. So we dropped out...............with major opposition from Emily.

So at five years old I enrolled Emily into softball and she excelled. Then Emily found theater and the stage again and she found her calling.  The performing arts department at her current school district has been deemed the best in the state. Emily held the first 6th grade lead in her UIL play............she loved the stage. However..........from the time I enrolled her in softball until the time she transitioned into theater she constantly asked to return to pageants. I continued to refuse because I didn't want Emily to get the wrong mindset about life. However, I fondly remembered our pageant days together. They were an amazing mother daughter bonding time. Also, when we were confronted with Jude's situation I realized that we couldn't afford to send Emily into lessons or pageantry. Then one afternoon I received an email from Cara who owned a national system. She offered to allow Emily to attend her system (this was years ago). I felt obligated to tell Emily and Em was so excited so I gratefully allowed her to attend. Emily ............. flourished. I honestly and truly felt ashamed.....I had kept her from something she loved so much. So from that point I vowed to follow what Emily wanted to do with my conservative rules (lol).

We got back into the pageant scene but I only allowed Emily to have natural photo's. We enlisted the help of two amazing friends that helped with her coaching, hair/makeup, and upheld our traditional values. They also stepped in and reminded me "mom she is 13 not 7".  Emily is an amazing role model and I will always stand by that. We all watch these reality TV shows that feature the occasional sane rational beautiful mom, but mostly focus on the prize selling blue ribbon crazies. Whether it's pageants, dance, cheer or relationships these shows focus on the best "sellers" so please remember that. They may be true in some aspects, but not most. They edit to no end and search out the very "aspects" of best ratings. We in the pageant community shake our heads at the EXACT same things you do. So before you make your mind up about mine and Em's AMAZING pageant friends who have the best hearts and are charity driven I encourage you to attend an event. I invited some friends and family members to my pageant Regal Princess last year and they all left saying "wow, that was SO fun and the kids are adorable! It's not what I expected". Come on over! You have an open invitation to come to my nationals in August or any other system Em attends! Come see kids have fun, enjoy themselves, make lasting friendships, and laugh!

Emily CHOSE this hobby........and I support my daughter and I am proud of my beautiful kind hearted girl. I help her with the necessary tools to succeed whether that's in school, pageants, softball, or theater.  She is the epitome of a role model and I strive to offer a system that is equivalent to what she stands for so others can compete. I have no tolerance in my old age for prejudice opinions and I like that I have grown so much.

Now with that being said..........Jude is doing better. I should give him more credit. Emily needed antibiotics to get over her sickness......but (knock on wood) Jude is fever free without any. I took him for a walk tonight, read him his "Good Night Gorilla" and hooked his feeding up without any issues. His tiny eyes drifted off to sleep as I said " and the mouse said ...good night Gorilla and the Gorilla said zzzzzzzzzzzz" and a tiny crooked smile fell upon his sleepy face. My tiny stroke victim is such a miracle.

Update

We took Jude and Emily both to the urgent care center last night. Emily has a sinus infection and they think strep throat. So she is on antibiotics. Jude has a "hazy" area in one of his lungs that the radiologist believes is viral. I am hoping he is right. Jude woke up this morning with 100.9 auxillary temp and Charlotte says he just acts like he doesn't feel well.  They did do a rapid strep on Jude which was negative, but they sent it to the lab to retest. We are going to give him one more day to see if he improves and if he doesn't we will take him back in. I am hoping he will be just fine, but we are always very cautious with Jude.

Two little sick chickadees and a promotion

I have two sick children at home. Emily doesn't look well at all. She is very pale, sounds terrible, and has that red lacy mono rash back on her arms. Jude is pale, has a high pulse rate, but is smiling. They both have an auxiliary temp with Motrin of 99.2. No bueno! So we are watching Jude closely and plan on taking both kids in after work. It's that whole mom weighing work and home today. I am going to have to pay $100 to take Em in after work vs $25 during the day because I feel bad being out while we are short handed. Not sure my efforts like that are noticed, but hopefully they are.

So yesterday Mike called me to tell me his boss had talked to him in regards to the much anticipated promotion we have been waiting for. We are really looking for the benefits he will receive. His boss gave him a RAVING review and said he was ready to make Mike a permanent vital part of the team. He gave Mike the choice of position he wanted and Mike is suppose to report back to him today. We still have not heard what his salary will be or when it will happen, but we finally know it's coming. I am so proud of Mike!! He has worked so hard and has been very patient (the patient part is not his cup of tea). For the first time in a long time I felt like I could breathe yesterday. Right now I have a list of items we need....new tires, Emily's cavities, HO-A dues, etc. Do you know how nice it will be to get those without struggling? To put money in the bank? That if I am out of a job for some reason we will be okay?? Everything has been on my shoulders for so long that it scares me to even think of relying on someone else.....but it will be so nice to know I CAN! Thank you Lord! Our prayers are close to being answered. Things have been such a roller coaster for so long that I told my aunt that I am now waiting for the other shoe to drop..........but maybe it won't? We are not "hurting" right now in regards to money. I could save for the tires or to take Em out of town, but it will be nice to just ..............breathe.

The cream of chicken soup fiasco.

Jude is doing SO well. He is still not sleeping very well, but otherwise he is great. He is making more and more sounds. He copies my mouth movements when I sing to him and he is making much better eye contact. I think school, his nurses, his increased therapy, and his loving family has helped him. I don't push Jude to further himself I just decided to accept him the way he is and let him guide me. Jude let's us know in his own ways how far he can go. I am excited to see where he takes us next.

I did have to share a funny story tonight. My husband is amazing, but you women will get a kick out of this. After work I had to go by the bank and then I had to go to the grocery store. Once I got home I unpacked the groceries, made dinner, fed the family, and then went to make a casserole for Emily's school tomorrow. I went to the pantry to grab my can of cream of chicken soup only to find it was missing. Little Miss Em had decided to make herself an after school snack. I growled at her for eating my ingredients while praising her for being resourceful. I am sure she was confused. So I then turned to my husband who proclaimed it was "crap" (jokingly) that he had to go to the store. So he gathered up his items and bolted out the door. Emily's friend Casen was over so we all sat down to watch TV for a few minutes before I got Jude ready for bed. Suddenly my phone rang.

Me: Casen...will you hand me my phone because I am sure it's my husband because he cannot go to the store without calling me.
Em: (got to the phone before Casen) Yes Mikey? Ok hold on
Me: Hello?
Mike: I lost my list
Me: (silence)
Mike: Hello?
Me: There were two things on it?
Mike: I know but I lost it
Me: Cream of chicken soup.....and a foil pan for my casserole...get one that would be shaped for lasagne
Mike: (repeats exactly what I said)
Me: babe, it's 2 things........think of all I have done tonight and I still have to cook, do meds, put up laundry, etc. really?
Mike: I couldn't do what you do that's why I married you.
Me: oh well that's nice
Mike: It's true
Me: okay so two things...you got them?
Mike: Got it!

So he brought home the foil pan............and cream of chicken soup WITH HERBS! So let's hope the Mexican casserole doesn't taste a bit funny.

Me: Babe you got cream of chicken soup with HERBS
Mike: I didn't know ... you never told me!!!
Me: I didn't even know they made that.....I mean that took special effort to pick that up
Mike: Well...........I shouldn't have had to go anyway...Emily should have had to walk to get it ..she ate it!  
Me: My casserole may taste a little Thanksgiving like
Mike: Oh sure make fun of the guy with the sore throat...just kick me while I am down why don't you. I am suing
Me: You are suing?
Mike: Yes for cruel and unusual punishment.........for for....laughing at me. For sending me to the store with multiple options!!!
Me: (giggle)
Mike: seeeeeeeeeeeeee (walking into the bedroom) I am going to watch TMZ........don't even try to open my door.
Me: (now in tears...laughing hysterically)
Mike: You are NOT funny!!!
Me: (quietly giggling)

Sleepy time

Jude is not sleeping again........not sure what the issue is. He is whining about every two hours to be flipped into a new position. I cannot blame him, but I am exhausted. It's been days of him not sleeping well. Mike just works in auto mode and doesn't even realize he has gotten up to reposition Jude. I on the other hand have a hard time falling back to sleep. I am hoping he sleeps soon!

So we went to see Emily's play last night and it was really good! However at the end when everyone started clapping I heard a squeal of terror. Jude was so afraid that he was trembling and trying to cry, but had the breath scared out of him. I felt so terrible for him. Mike rushed him to the back of the room to console him. As soon as Emily took her bow I ran back to them so I could hold Jude.

However he was very happy when he got to her play.

A pretty girl, a really bad habit, and talking to Jude.

Last night while I held Jude on the couch we "talked" to each other. I would say "I love you Jude!" and he would move his mouth like he was talking in a sentence. Sometimes sounds would come out and sometimes they wouldn't. However he would mimic me and it's the first time I have ever heard him really trying to speak back to me. Again, I would say "I love you Jude" and he would reply "aaa o aaa" or some other form of reply. It was very cute!

So as I sit here on lunch at work and stuff my mouth with Sushi I am going to share something personal and honest. I have always loved the taste of wine and I have always been fascinated with the process it takes to make it. It's one of my few real joys. However, after Jude's situation I have found myself drinking more at night so I can go to sleep. Let me point out before I say any of this that I don't ever pass out, or forget what I have done or said, I don't crave it or think about it during the day, etc etc. Although, I woke up this morning and my side was hurting and I was very tired. I started retracing my steps and realized last night I had several glasses prior to going to bed.  In the course of my life I have cut unhealthy items out of my diet to improve my lifestyle. I have cut sugar out of my tea, I drink non-caffeinated soda, I eat wheat bread vs white, brown rice vs white, No greasy french fries, etc. So it's time to do that again. I am eliminating alcohol from my diet. It killed my mom and it won't get me! So why am I admitting this? I promised to be honest on my blog from the start and my bet is that many people in my situation have coping mechanisms that have become unhealthy. That is exactly what this is....a coping mechanism. I have a terrible time going to sleep and with Jude.........well he is still like a newborn...so it made for long nights. So drinking a few glasses helped me sleep that coveted 10-2 time period. Also, I just liked it. However, I also like sugar, fatty fries + hamburgers, and DR Pepper. All items that I fought and no longer require. So I am taking a vow to get healthier. I am also going to reward myself because I feel that is important. In 8 months it will be my five year wedding anniversary and I plan on Mike and I taking a trip together. I will be healthier, back in shape, and with no need for a glass of wine to soothe my stress. So friends and family...scratch it off my Christmas list. Man I will miss my grapey sweet luscious friend, but it's time to bid it farewell.

Tomorrow night Emily's play premiers. She has literally been working on this play for MONTHS! It's their one act UIL competition and she is the lead. I am proud at her dedication and keeping her grades up during rehearsals. This week and next they have dress rehearsals until 8pm every night. She then has to come home and finish her homework, take a bath, and chores. Somehow she still fits in reading to Jude........she is my sweet girl.

Emily's Smile Boxes are making their way through the US!

So I am so happy I could cry!

Back in November we were approached by the Dallas Cowboys after a news story ran on Emily's Smile Boxes. They suggested that we contact Rachel's Challenge to see if they could help spread Emily's boxes. Before I could even email Rachel's Challenge one of their fabulous members contacted us. A former superintendent of a school district in TX came out to meet with us. He was truly an inspiring individual who freely gives of his time to others. He was a bit teary when he said "Emily I hope someday my granddaughter is like you".  I shed a few tears over that.

If you don't know the story of Rachel Scott the first victim in the Columbine shooting I beg you to read their families inspiring story http://www.rachelschallenge.org/LearnMore/WhatIsRC.php. We were truly honored to have such an amazing organization contact Emily. They explained they would like to partner with Emily and help her reach her goal of touching a million lives like their daughter Rachel did. The thought of Emily getting her boxes nationwide was overwhelming. We were a bit hesitant to get our hopes up since the radio station that promised to help her didn't pan out. However, Rachel's Challenge has followed through! As of yesterday they had blasted a challenge to their organizations signed up with them requesting they make Emily's Smile Boxes. I was already contacted by a middle school in Kentucky that has accepted the challenge. I am thrilled to see so many children helping their communities and learning about kindness.

In addition we learned today that Emily was a distinguished finalist in The Prudential Spirit of the community contest. I went online to see the state honoree winners and I was in awe. If you have the time go read about what these amazing kids have done at http://spirit.prudential.com/view/page/soc/15089. They should inspire us all to be better people!

Jude is well! A bit of a cough, but well.

A bit of congestion.

Jude has had a lot of congestion in his chest for the last few days. Both nurses have been doing CPT and I have been too. It seems like it has REALLY been helping a lot because this afternoon he has not coughed. Last night I was up a lot because Jude coughed throughout the night. However, he has been very cute and sweet. He has laughed a lot and been talking to us a lot. Last night we watched the show "Moneyball" with Brad Pitt and yet again Jude was very interested in the movie. When I talked to him he would glance at me and then quickly turn back towards the movie. I always say that he has more going on then we give him credit for.

I had a great weekend with my husband. He was very attentive to me and we have a great relationship. I am glad that we have grown closer through our circumstances. We did have a bit of bad news today. Mike's older dog Lady has a tumor. She is 14 years old so for a terrier she has had a very long life. She is still chasing her ball so she has some spunk left in her. At her age surgery is really not an option so we are keeping her comfortable. She will visit the vet soon and see what they say.  Since moving into our house I don't think his dogs have the best life in the world, but they cannot be inside dogs. One Jack Russell is cute......three is a pack of craziness. They provide me much entertainment tho.

Tomorrow starts another work week. I still miss my friend at work. She is at home with her baby and I know that's a good place for her, but I still miss her a lot.

Peace............

Peace...

It does not mean to be in a place

where there is no noise, trouble, or hard work

it means to be in the midst of things

and still be calm in your heart.... (unknown)

That saying is really how I feel lately. My work has been crazy, but my personal life is so much more grounded. Jude is well, but if he isn't my family knows what to do. We no longer search for cures or additional issues. Emily is healthy and has really found herself lately.  She is confident on who she is as a person and takes up for what she believes in. Mike is still working with his job in regards to being full time and admitted he wants another child. Who knows if it will ever happen........most likely not, but at least he admitted it to himself. I am doing okay. I have my issues, but I work through them and we march on. I even find myself..........not needing the blog as much as I used to, but loving it all the same.

A pageant princess and a sweet boy

Emily did amazing in Nashville! She received the highest title in the 13/up age catagory! I am so very proud of her. I was already proud of who Emily is inside and out. However, I am proud of her determination to put in hard practice and stand up for a hobby she truly loves. I admire her determination and her ability to stand up for whatever she believes in whether it be her brother, her charity, or her hobby.

We had a late flight back home on Sunday, but as soon as I got home I snuck into Jude's room and kissed his forehead. He still has that sweet baby scent even though he is three years old. I sometimes wonder if that scent will always linger because of who he is. The next morning when I heard Jude's tiny squeal of laughter when he heard the garbage truck outside I ran into his room. I said "hiiiiiiiii Jude!!!" in my high pitched mommy voice. I saw his huge grin with his tiny dimple on his left cheek spread across his face. Suddenly I heard "iiiiiiiiiiiiiiiiii!". He spoke back to me!

What an amazing welcome home!

Nashville

Well Em and I are in Nashville currently waiting on a room at the hotel we are staying at. We caught the first flight out of DFW this morning. I used to be so afraid to fly. I think after what happened to Jude I changed my views on a lot of the world. I decided to try and put a lot of my fears aside and just enjoy life. I am thankful I have because I am able to spend valuable time with Emily that I would have enjoyed before. I still get a bit jittery boarding the flight, I still do the cross and say a little prayer. However, I no longer panic and I no longer fear planes themselves. I have actually really educated myself on them and how safe they really are.

We are here for a pageant. Emily competes in Interview and natural beauty tonight. Tonight she competes in regular beauty, swimwear, casualwear, and theme wear. Then we relax and enjoy our trip. On Sunday she is making a speech in regards to her charity to a ballroom of people. She is prepared and should do well. It will give her the opporunity to spread information in regards to helping others.

Jude is with his daddy and I will be waiting on my little video of him going to sleep tonight. I will end today by asking prayers for a family member that needs it. Thanks!

An anxiety explanation to Emily

So I mentioned that things have been overly stressful at work lately...and I wasn't kidding. Anyway, yesterday I realized it's taking a toll on me physically and emotionally. All day at work yesterday I kept getting left arm pain and chest pains.........so I convinced myself it was NOT a heart attack (lol). At the time though I was pretty sure I was dying and then talked myself down off the heart attack cliff. The pain was in the back of the arm in a solitary position......... so it was just anxiety. I have never really struggled with anxiety except when I drive (due to my car wreck). Well Anxiety found me front and center at work. Anyway, when I got home we had a great relaxful evening until..........Insert dramatic drumming noise. Emily started asking for money for school for a T shirt she needs. This week alone she needed supplies for a sewing class, supplies for her link leaders, supplies for a donation basket...........and I began to hyperventilate. Emily insisted she HAD to have the money Friday and I explained to her I get paid on Tuesday, but that was unacceptable. I explained the extra money we had was set aside for the trip this weekend, but I would have it to her ASAP on Tuesday. Again...not acceptable. I then cried.............WHY?? Why on Earth would I cry over that? So our conversation went something like this.

Em: Mom I think you are depressed
Me: Why?
Em: because you cried over that song, cry about Jude, and you cried over a flat tire Monday
Me: Em when you get old you will know why I cried over a flat tire
Me: Em there is a difference between being very stressed and depression........do you know the difference?
Em: No
Me: Hi anxiety or stress can cause sudden outbursts of crying or yelling. It can make you feel overwhelmed or like you cannot breath sometimes....depression.......generally is show by a lack of interest in anything. Feeling like you cannot work, you don't want to get ready, you don't take care of yourself, etc.
Em: Oh like Mikey after Jude got diagnosed
Mike: (spins around looking like a deer in headlights) HUH?
ME: YES, Exactly! He didn't shave, didn't want to leave the house...
Mike: really? (looking like he just got ran over)
Me: He kinda smelled
Em: (now cracking up)
Me: never cut his toenails
Mike: MUST we go there?
Em: (giggling)
Me: Em......it's normal for adults to sometimes have issues with stress, sadness, or other issues. Especially after Jude's situation or my current issues at work ......... well it's just normal. As an adult you just have to vocalize every now and then and get it all out. If you keep it in then it can create serious issues. So just know if I cry, yell, or seem sad it has nothing to do with you because the best times I have are my times with you!

She then marched happily up to bed.

Mike's scare, Jude's gift, and Hanging on

Mike and I try to spend lunch together once a week and today was our weekly visit. We chat about work, home, and play Scramble on our Iphones against each other.........yes we are THAT couple. Anyway, it's nice to spend some time together. Well today at our lunch date Mike said he when he got up this morning he went to check on Jude. He said he stopped suddenly in the doorway because Jude looked "lifeless" and when he touched Jude's hand it was ice cold. I said, "Oh babe he was just sleeping soundly". Mike agreed with me, but you could tell he was a bit shaken up. Quietly he said, "It happens you know". I replied, "Yes I do know...it happened to our friend (name withheld) but there is no reason to worry over something that potentially will never happen". Jude is with us and he is doing the best he has done in a long time! He is happy, healthy, and making progress........so I will take it!

Having Jude has always put things in life in perspective. When we think we are at the end of our rope or just cannot take anymore.........remember that you can. Life always has a way of working out as long as we have our family, friends, and our health. I try to convey to people that life will always work out and it's not as bad as it seems, but sometimes it's hard to explain it in the right way.

Another hard part of life me is watching some parents of special needs kids pushing their little ones so hard. New drugs, new routines, new doctors, more appointments, etc.........sometimes it's okay to just let life happen. To give our kids the best you can and spend time with your child. I mentioned once that a doctor told Mike........"Many times with children like Jude it's the parents that cause their untimely demise by searching for normal". I think that was a really profound statement. So we achieved finding the right combination of seizure medications, the right diet, and found a great pediatrician we can follow up with. Jude has weekly therapy sessions, but his doctor visits are now limited to "as needed" and every three month check ups. Maybe I am wrong to not search out the greatest and newest technological advances for Jude, but he is happy. For me........it's just about him being healthy, happy, and loved.

nap time!

I think it's nap Sunday! I haven't had a nap in forever and I think one is in my future.

Jude is with Alan practicing his two words "Hi" and "Up".

We did our errands this morning and now we are all taking it easy. I hope everyone had a good weekend. I would also like to thank those that donated items for the friend I mentioned. It means a lot.

modeling, the GI, and a little help.

Today I took Emily to a modeling/commercial audition at her request. I debated taking her all week and it was Mike who finally pulled me aside and said "SHE wants this". So I packed Em in the car and we drove to Dallas for the audition. Emily waited for almost two hours to be seen in a room full off potentials. She was nervous, but I think the pageants helped her stay more calm than I would ever be. She was called back and was asked to read a commercial. She then turned over her pictures and had a conversation. She was quickly dismissed and Emily seemed concerned that her interview was so short. I assured her that the reason could be that the lady interviewing her may already like her. Sure enough at about 6:45 she received a call back for tomorrow. So tonight I sat Emily down and explained to her that if this is truly her passion she is going to have to ask her dad and his family for some help. With my job I am going to have to have help getting her to functions. She is now bouncing off my walls!

As a reminder to those that know me I am working on collecting items for a very good friend who is in need. Many times in life people face desperate times, but they don't reach out. When we found out about Jude and Mike had to quit his job I had friends walk in my house with hands full of clothes, diapers, toys, and more. So I have vowed to pay it forward throughout the remainder of my life. We have held many drives for those in need and I know it gets on people's nerves, but if you could spare a little to help someone we would really appreciate it. I am collecting diapers, formula, wipes, and household items. I am also collecting grocery gift cards. Sometimes families in need just need to stay anonymous, but know it will really touch their hearts.

Jude is well. He went to his GI doctor on Friday. We were told that Jude has lost a little weight, but that he looks "the best he has seen him". He seemed very impressed and even said Jude does NOT need a nutritionist. He explained that any increasing off foods will be done through his office. It was nice to hear that Jude is doing so well. I am hoping 2012 will be a great year.

A seizure

This was written by Sharlie Lee. I had to share. Even though Jude has a host of other issues and his seizures are a bit different I can relate.

A Mother's Perspective of a Seizure........

It’s putting your nose under his cheek so that he can feel your presence to know that you are there, while his tears are falling on your face.

It’s telling your son, “It’s OK baby”, when you don’t know if it will ever be ok.

It’s singing “Jesus loves me” or “Peace Like A River”, while... praying to God that they will never come back.

It’s having to gently sweep your son’s face to comfort him so that he can not be scared to go to sleep.

It’s watching him struggle to breath and gasp for air, while you watch helpless.

It’s praying to God that he will wake up the next morning so that you can spend more time with him.

It’s sitting up at night, getting your thoughts together and typing your feelings, so that you can express a mother’s love.

It’s hearing him scream, because he is terrified that one will come back and control his body.

It’s knowing that he is dealing with something that you can not control with money, love, or power.

It’s holding your head and hands up because it’s out of your control and you give it to God to conquer.

It’s hating to say the “S” word, when the word “hate” is not strong enough to tell how much pain they cause.

It’s testing a Mom’s Faith, when that is all you have left.

It’s crying your eyes out, when no one is looking because you are suppose to be the “strong one”.

It’s being grateful for each day that you have and appreciative of the small things that God gives to you.

It’s knowing in the end, there will be a time that God will be in control and these horrible seizures will not be.

A movie with Jude and a cry fest

It obviously been an emotional week. I think my husband got that last night because he was very loving when I got home. We even sat down to watch some happy shows like "Glee" and the movie "Dolphin Tale". Let's just say that my "happy" shows left me with very puffy "cry" eyes today, but that's not a bad thing. They were happy cries and I think I needed them.  I did not watch the entire episode of Glee, but the ending was what caught our attention. Mike called me over and rewound the TV so I could watch. There stood "Becky" who has Downs Syndrome waiting to hear if the boy she likes wants to date her. He let her down gently and she asked him if it was because she was to strict or something to that affect. He agreed (with a look of dishonesty) and then Becky turned to walk off. Tears welled up in her eyes as she walked down the hallway and then her inner voice began to play in the perfect British accent of Helen Mirren. Her inner voice said she knew it was because of the downs and her struggles she faces. ARGH, I bawled. Everyone's inner voice is perfect rather we are English, British, disabled, or not. Although, it was the realization that none of us have any idea what goes on in our children's minds. I thought it was very well played on the shows part. I heard there was some cussing from Becky's inner voice, but well........again....maybe that's how she felt at the time. I have been searching for the You Tube clip of this portion of the show, but it's not up yet. 

So we then ventured upstairs to watch the movie Dolphin Tale. If you are unaware of this movie I request you look it up. Of course, items of the true story were changed to provide a more dramatic effect for Hollywood. However, the true story itself is pretty amazing. "Winter" is a dolphin that was found washed ashore in Florida tangled in rope and a crab trap. She was rescued, but lost her tail. Amazingly Winter learned to swim without her tail, but it caused serious health problems. They had to find a solution for Winter and they found it in a prosthetic tail. Her story is amazing and behind her story is amazing. Watching the credits role at the end of the movie with a line of children with disabilities and Veterans with missing limbs getting in the pool with Winter.........well made me bawl. Not to mention that every time "Winter" would whistle on the TV Jude would squeal with laughter. I was holding Jude and he would actually look at the TV and then belly laugh. It's like he connected with the Dolphins language. I know Jude reacts to high pitched noises.......but why? Obviously it's neurological, but again........why? So maybe someday I can get Jude close to a Dolphin and see how he reacts....he sure loved the movie. He loved it so much that we let him stay up late to finish it. It's the first movie I ever felt like I was truly "watching" WITH Jude.

By the way.......Winter plays herself in the movie. So thanks Winter for giving me a night to remember with Jude!

Sad

Have you ever sat back and watched a good friend be destroyed by someone elses inability to care for them properly? You knew that the situation they were in was just not going to have a good outcome regardless of their co-dependent wishes?  Have you ever felt like shaking someone really hard and realizing they still wouldn't be able to see what you clearly see? Have you ever realized you will just have to sit back and watch the person you care for travel this painful path before they realize the right path they should be taking? Have you ever wished you could just save someone a lot of heartache and a lot of wasted time?


Make sense? WELL it does to me and I am beyond frustrated today. I am sad...........I feel like someone died. I cannot go into it because it's a private matter, but I can voice my feelings and I am doing so here. It's an emotional and stressful week. I hate it so far.