A sleepy little Jude, and a rotten radio DJ

I slept last night, can I hear an AMEN? I took Jude to bed with me about 9:30, and he was so cute. He snuggled close to me, and you could tell he was really happy to be in my bed. Before he went to sleep Emily came in to tell him how great it is to be in mommy's bed sometimes. I thought that was really sweet. Speaking of Emily, guess where I found her at the other night?

It's cute she loves Jude so much. So Jude did sleep until 4am, but by that time I had caught up on sleep, and I wasn't cranky about him waking up. I eventually put Jude on his tummy, and he went back to sleep until Charlotte the nurse got there at 8.

So a few of you know I had an issue with a DJ on a local radio station both Tuesday, and yesterday. I wasn't going to mention it on my blog because I thought the situation was resolved, but I guess it isn't. I also thought it would be better handled between myself, and the person in question.....I guess not. I am however not going to mention the DJ's name because I personally believe he knows what he did was wrong. Let me explain the entire situation. I generally listen to Kiss Fm, because I am a loyal fan of Kidd Kraddicks, but occasionally I listen to sports radio. I am an NFL fan, and my husband keeps that station on in his truck.  While on lunch break at work on Tuesday Mike called me to tell me about a discussion the DJ was holding about screaming children on airplanes. The DJ had said that all screaming children should be tracked by the FAA, and then banned from all flights. It was rather funny, but Mike said the DJ continued to rant and rave about the situation to the point it was out of control. The DJ had also twittered some horrible remarks regarding that situation, he even went as far as to call the kids parents "smelly foreigners". He then called them "***** *** parents" for not wrangling their child. I wasn't on the flight, and maybe the child was difficult, but the language and racial slurs, were uncalled for. We have all been annoyed by screaming children, but we don't go as far as this guy did. So Mike said he was wondering what the DJ would say if the child was special needs (good point...what if the child was autistic?). Mike took the time to call the radio station, and the call monitor put him straight back to the DJ'S cue, but the DJ never would take Mike's call. So therefore (you know me) I sent the DJ a twitter, and our conversation went like this...

CJENGO36 (me): so just what if these kids "screaming" on planes are special needs? Would you still want the FAA to ban them all? (I expected him to say, well that's a different situation)

DJ: I would hope that the parents would properly sedate their child (oh no he didn't!!!)

CJENGO36: and if that child is on heavy doses of seizures medication, and cannot be "sedated" what then? Is your comfort more important than my child's health?

DJ: Did I say that?

CJENGO36: "I hope the parents would properly sedate the child" that's EXACTLY what you said.

DJ: I stand by everything I said. It was intended as a comical holiday peeve which most people get.

CJENGO36: I got your comedic relief, but it was obvious you were truly irritated. Just remember that some children really cannot help it. I know this because we aren't in the "most people" category anymore. Anyway, enough arguing, have a great day.

My intention was to merely try to educate this person, and open his eyes to the potential of being sensitive to people's individual situations.  The child may have been special needs, or may have just been a difficult child... who knows. I thought this issue was over with, until I got several emails yesterday. It seems Mr. DJ decided to read our twitter conversation, announce my name, and rake me over the coal on LIVE PUBLIC RADIO. He went on and on about how I brought special needs into it, when my problem was with the sedation comment. To say the least, I am rather upset. It was unprofessional, and uncalled for. I then put a call into the station so Mr DJ could talk to me live, and guess what.........as soon as he heard it was me.....he hung up on me. So here was my response in letter format.

"I tried to call you in response to how you raked me over the coals today on your show, but without surprise someone hung up on me. I responded to your rant yesterday regarding how all screaming children should be banned by the FAA.

Yesterday I tried to be professional, and simply asked you what your course of action would if the child in question has special needs. Your response was "I would hope the parents would sedate them". That is when I got rather upset, because that was an ignorant remark. I was simply trying to educate you, and open your eyes, to the extenuating circumstances that may surround some children on airplanes. I am not an "angry" mother or someone just out to make a political statement. I simply wanted to let you know that your comedic relief regarding holiday travel should be re-examined.

If you can be sensitive to Michael Vick's situation, then why can't you be sensitive to this situation? I welcome your phone call, or reply at any time. I would rather talk about this like two grown adults rather than you bashing me on a public radio station. "

After that I let the entire situation go.  I was thankful there are great DJ'S like Kidd out there that love and support the disabled. I wondered what he would think about the entire conversation since he flies a plane full of special needs kids to Disney every year.  Maybe the DJ in question will learn not to be so rude about certain situations, and to further educate himself, but I doubt it. I chalked him up to a Howard Stern wannabe, but I don't think Howard would have even made that stupid sedation comment. I think it just screamed ignorance. I guess I have just learned to be more tolerant of everyone since Jude special needs, or not.

Today is my Friday, and I am looking forward to time with my family. Jude didn't have any retching last night, and I hope this weekend proves to hold the same. Oh, and Jude also tried to say "Ma Ma" again last night, but it came out more like "MayMe" but it's still thrilled to hear. Have a wonderful New Year everyone, let's hope 2011 is amazing.

Hey Jude

I could go on and on about how I haven't slept in days. How Mike and I fought at 4am because of Jude moaning in his bed, but I think I will just share something truly amazing. Everyone knows I am a HUGE Beatles fan. I can now say I have seen the President of the United States singing "Hey Jude". Last night I was crying watching the Kennedy Center Honors. There was a whole tribute to Paul McCartney, and below was my favorite part of the show.

frizzy haired and sleepy

Well Jude was adorable last night, but such a stinker. He would let me hold him for awhile, and give me a cheesy grin when I kissed him. About ten minutes later he wanted back on his tummy, and then ten minutes after that he wanted back up again. Eventually, I told Mike his son wanted him to hold him, he laughed, and took Jude for awhile. Jude proceeded to follow the same routine when we were trying to put him to sleep. He fought sleep last night with everything in him, but he finally gave in (thank goodness). Of course this didn't last to long, and Mike, and I switched off tending to Jude last night. Finally about 4am Jude started retching, and I said "Mike the baby is retching" and he flew out of bed before I could. He came back to bed saying he is so tired of waking up like we do, all the time. I love my children with all my heart, but the idea of sleeping for five consecutive days on our trip sounds amazing. Now let's just hope my family isn't pulling their hair out by the time I get back, and that they still love me...hehe. The good thing is our nurses will be at the house from 8-6 while we are in Maui, and thus freeing up my family to do whatever they want to during the day. We are very lucky we have so many people helping us to go on this much needed vacation.


T minus ~ 39 days..............

The big Christmas round up, and a blown G button

On Thursday night Emily's dad proceeded to help us with operation re-design Emily's room. He picked her up for the day, and then she stayed the night with his mom, while Mike, and I worked. Mike re-painted all of Emily's furniture, and then we painted her bathroom. We then let all of that dry overnight, and then we tackled the decorating. The plan was to keep Emily out of the house until 5:30pm. When she arrived we would have all of our friends, and family over to celebrate Christmas Eve, and to watch her surprise. Right on cue Emily walked through the door, and we led her upstairs. I think she was a bit speechless. Jude did wonderful this Christmas, and I think he really enjoyed having everyone around. He smiled, giggled, and overall had a great time. My cousin, and her family, my friend Shelley and her family, My sister, her hubby, my dad, and Kay all joined us Christmas Eve, and it was really wonderful.

The next day it was rather quiet. Mike, and myself, and Jude's nurse Allan all stayed home. I cooked while everyone else did their own thing. Emily had gone with her dad again to his mom's house, and everyone just relaxed for awhile. About 6pm my family showed up for dinner, and we again truly enjoyed each others company. I feel very blessed.

Overall the weekend went well until this morning. About 4am Jude woke up screaming, and Mike took off to tend to him. I had been up several times, so Mike got up this time, and saved me from the cold house. All of a sudden I heard Mike yell, and Jude yell. I knew this meant Jude's button had popped out. Unfortunately, this time the entire button was blown, and we needed a new one stat. Mike got very stressed, and when Mike gets stressed, Mike yells. That's just how he responds, I hate it, but it's him. So he was yelling, I was trying to calm down Jude, and Jude was crying. Mike asked for the petroleum jelly to insert the tube back in, so I ran out to get it. Well I guess Jude wiggled, and Mike got upset, and suddenly I heard a very clear little "maaa maaa" I was excited he asked for me, but said he was upset. I said "mama is here, and I ran in to stroke his hair, and he calmed down". Mike was phenomenal even with being upset, and quickly got the new button installed. After we finished he said his chest was hurting. I am worried that he gets to stressed out in these situations.

Before

After

Before

After

One of the highlights of Christmas Eve, my cousin attacking Mike!

Precious! My friend Shelley's little girl Lauren. She kept telling Jude "up" and would tug on his hair, but she was so sweet to him. She would put her face right beside his, and just look at him. Then she would lay down beside him. She was just a doll.

This is Emily seeing her big present for the first time

I loved this video. This is my sister's dog who seems very distrubed by Emily's clarinet

and finally a video of Jude, and Mike.

Merry Christmas

I am working today, but there isn't much to do. Our corporate office is closed so there aren't any new updates, etc, but I am here if anyone needs anything.

Jude is at home with his nurse today, and he was all smiles when he woke up. He has been in a great mood lately, which is a blessing. I have really been trying to work with him on being vocal. When he looks like he wants up, or on his tummy, I ask him to tell me what he wants, and to let me know what he wants. He really tries to get some words out, which is such a huge accomplishment for him. He mostly just coos, or moans, but it is a start.

Tomorrow night we have a large crowd coming over for chili, and to just relax. I am really looking forward to spending time with family, and friends. My friend that just recently had the preemies is suppose to come over, and I am so glad! I hope she is able to relax a bit, although I know it will be hard.

If I don't get back on then everyone have a very Merry Christmas, and a safe holiday.

This is what happens......

This is what happens when your pre-teen gets her hair cut the way she always wanted.......God love her pretty little soul.  She confiscated my camera, and hid in her bathroom. I had about a hundred of these photo's, okay not a hundred, but maybe twenty.

and this is what happens when you put a singing Tigger next to Jude

and this is what happens when you try to put a cute little bear cap with ears on Jude, he didn't seem to like the cap as much as I did....

Tune in next time for more "This is what happens" episodes.

A sleepy Jude, a barking dog, and a prayer

It was a long night. For some reason I kept waking up every hour, and checking on Jude......and he was sound asleep. Just what I need, to wake up when the baby ISN'T awake, lovely I tell ya. When I finally fell into a deep sleep at 5:30 Mike's dog Lady (aka terrorist #1) started barking at the back door. She generally barks about 7am because she wants to be fed, but for some reason she was up early today. Mike shoo'd her back to her dog house, only for her to get up again at 6:30, and so on and so forth. I was very aggravated, and was plotting how to get revenge on the said doggy. Mike protested that she is just really smart, and knew someone was up in the house (turns out Jude was). Love the excuse babe, but I say your dog is just annoying, and has you trained very well.

Overall Jude seems to be doing well. He is still congested, but not nearly as bad as he was this weekend. He slept well last night, and when I came to see him this morning he was looking back at me smiling. I wonder how much goes on inside his brain. It's very obvious he knows who we are, and he responds to us. He smiled really big when I came into his room, and the fact he darts his eyes back to look over his shoulder to see me is reassuring.  He still wants to be on his tummy on a constant basis, and we all feel bad leaving him in that state so much, even the nurse. Although it is what he wants. We all hold him for awhile, but you can tell when he wants to be put back down again. We have always been scared to let him sleep on his tummy, but he finally got his wish the other night. He just would not sleep, so I put him on his tummy in his new bed, and he slept soundly without any issues. Mike, and the nurse are wondering if Jude breaths better on his tummy, and thus the reasoning he loves it so much.

So our nurse needs some prayers. It seems we have been surrounded by a lot of medical issues lately, and we have encountered another one. Her husband has not been feeling well at all. Well he went for an X Ray and he has white cobwebs in his lungs. This can be a sign of small cell lung cancer, and we are praying this is not the case. He is going for several tests this week. So if you can spare a prayer that he has something easily curable that would be wonderful.

The Very Special Gift

My friend Stacey shared this on facebook. Not many poems get to me anymore, but I liked this one!
The Very Special Gift
By S. Guevara
Once upon a time, three angels were busily working in the miracle
factory. They were responsible for wrapping up all the little
miracles and sending them on their way. Normally they wrapped each
one in bright, sturdy paper with big, shiny ribbons. They stamped
them with a delivery date and away they would go to the parents who
eagerly awaited their arrival. Things usually ran pretty smoothly.
One day, however, down the conveyer belt came a little miracle that
made the angels pause. "Oh my," said the first angel "this one's
uhm...well...different." "Yes, he is unique" said the second
angel. "Well I think he is quite special," said the first angel "but
I don't think he will quite fit our standard wrapping procedures."
And the second angel added, "And we know he's special, but will
everyone else?" "Not a problem," said the third angel "obliviously a
special miracle deserves extra special wrapping; and of course we'll
send him off with our most heartfelt blessings. Then everyone will
see how special he is." "What a wonderful idea!" replied the others.
So they searched the shelves high and low for their finest paper, and
their most delicate ribbons.
When they were done, they stood back and admired their
work. "Beautiful!" thay all agreed. "Now for our blessings," said the
third angel "for it is time for him to go." "I will bless him with
innocence and happiness," said the first angel. "And I will bless him
with strength to face the many challenges that lie ahead" said the
second angel. "And I will bless him with an inner beauty that will
shine on all who look upon him" said the third angel. Before sending
him off the third angel, who was very wise, gently tucked a note
inside.
And it said,


"Dear Parents:
Today you have received a very special gift. It may not be what you
were expecting and you may be disappointed, angry and hurt. But
please know that she comes with many blessings. And, while there may
be pain, he will bring you much joy. He will take you on a very
difficult journey but you will meet many wonderful people. He will
teach you patience and understanding and make you reach deep inside
yourselves to find a source of strength and faith you never knew you
had. He will enrich your lives and will touch the hearts of all who
meet him. He may be fragile but he has great inner strength.


So please handle him with care. Give him lots of attention and shower
him with hugs and kisses. Love him with all your heart and he will
blossom before your eyes. His spirit will shine like the brightest
star for all to see and you will know that you are truly blessed." 

Amen

Congested Jude

Well Jude has been fighting off the congestion I mentioned for a few days, but today he woke up very congested today. I have been suctioning him, using Benadryl, and more for hours. The congestion makes him want to retch, and earlier he threw up. Yep, that means he has blown his Nissen, but I don't think completely. The throw up was also laced with blood, but I am pretty sure that's from the congestion. I cleaned the poor little boy up, and took him for a nice warm bath. He absolutely loved the bath, and shows me so with big smiles, and giggles.

Once he was all cleaned up I took him for a nap. We both fell asleep for a little over an hour and a half. Emily had a Christmas party today, but I am afraid she isn't going to make it. I think Jude is doing a little better, but I don't want to get him out in the cold.  I was going to ask to send Emily with a friend, but I had fallen asleep with Jude, and didn't get to text her. Emily seems okay with everything, I think she is pretty tired herself, and she is just hanging out watching Christmas movies.

Tomorrow is another Monday, and the start of a work week. I am looking forward to the holidays, and watching my kiddo's enjoy their surprises.

It will all work out........I promise

It's been a whirlwind of a day, but one filled with lots of personal accomplishments. Let me start with telling you that Jude was up the night before last pretty much every hour, on the hour. About 5am I jabbed mike, and told him, "Your son wants you". At that point Mike knew I was done for the night.......er morning, and he took over said baby duty. I am unsure why Jude still has some sleepless nights, but it seems to be a common  issue with special needs children.  About 7am my alarm went off for work, so I jumped out of bed to get ready for the day. I ( hi ho hi ho) headed off to work, and to my surprise the day was filled with lots of insurance tasks flowing through my desk. Generally this time of year leaves me with a lot of time to daydream, so I was a pleasantly surprised that we were so busy. About 2:30 I packed my office up because I needed to attend to some outside sales calls. As I blazed through DFW I remembered the thrill of accomplishment when I am able to sell something I believe in so much to someone that truly needs it.

After my full time job I raced home to ready myself for my part time job. Rarely, do I schedule Scentsy parties on a Friday night, but sometimes I get a request for one. Tonight hosted one of those requests, and Emily graciously went with me to help. Emily was truly amazing. She knew I was tired and she helped set my table up, and  at the end she swiftly packed everything up with grace as I took orders. When I turned around and saw the table clear of my full set up I was shocked..........and so was everyone else. I smiled at the compliments that my daughter was amazing, and I simply agreed with everyone offering the sweet words. Emily just smiled at me with a cute little grimace, and I knew she was just ready for some good food. So we ran out the door with a wink, and a smile, and then into the grocery store to obtain her goodies. 

Once we got home I admired Jude sitting in his dads arms, and I smiled at the way my boy turned his head when he heard my voice. Then I realized I have gone from being a person that feared "mental retardation" to being so thankful for my sons accomplishments. My doctors used to use the words I put in quotations above, and I would naively repeat them on my blog.  I have since learned those words are full of resentment, acceptance, and ignorance. I am so very thankful for everything Jude can do, and more. His giggles, and smiles melt my heart, and I treasure each tiny glimpse I get at the inner most part of Jude. I realize he can express emotion, he knows who we are, he can express when he wants to be moved, and when he isn't feeling well. We are very lucky he can tell us so much.

I also realized I am so spoiled in many aspects. Today Jude received some money from his grandmother to obtain all new 3T clothes. This is because my son is the incredible hulk, and seems to bust through his pants every few months. Regardless, he still received money, and I put it to good use on my lunch hours. I have learned how to really stretch a dollar, and Jude has a gorgeous new wardrobe.

So what why do I think I have many realizations today? I have a job I am very thankful for. At a very young age something (fate) turned me in the direction of insurance. I now hold 3 licenses in the field, multiple awards, and over 18 years of experience........which means I am worth something :). I am also blessed because so many people booking Scentsy parties with me. Just when I think I am out of parties........someone calls me out of the blue. It's work, and a lot of it, but I am grateful. Today, my fortune cookie read,  "Don't worry.....it will always work out" Boy is that true.

Realization

I have been rereading my blog from 2008 when I was still pregnant with Jude. I am trying to put it all in book format. Not that anything would ever happen from it, primarily because I am a grammatical nightmare, but just to have it for me. While reading my prior posts I am so mixed with so many emotions. I was so naive, and determined to go against the medical field. When I read through what the MRI specialist said I just kind of shake my head...because she was 100% right. I had forgotten that she explained that she had only seen one other case as extreme as Jude's MRI after an ischemic event (his stroke). I kept repeating myself in my blogs, I kept bargaining with God, and begging that our situation would change. I shook my head again when I read how the sonogram scans were showing Jude's brain ventricles decreased in size, and how the professionals were saying his situation my have turned positive. Boy, I had no clue. I guess I just never really got what they meant when they said there is a chance he may be profoundly disabled. I kept holding on the the words "He may be okay", and by that I mean he would walk, talk, and not suffer seizures. I really had no clue what the word disabled meant, but who really does understand the full definition until you are confronted with it face to face.

Despite what we have been through Jude's situation has taught me so much. I would never take a healthy pregnancy for granted, and only hope that someday I may get to experience that again. I will never look through the disabled, and always acknowledge their presence. I have been taught patience, empathy, and strength. I feel like I truly understand what pure love means, and how joyous it feels. I am glad we made our decision to bring Jude into this world. He has probably made more of a positive impact on people than I even could think of making. He is our little Juders.

The Big boy bed

Jude got his big boy bed!!! He slept very well in it, and Em got him a puppy to celebrate the day. We were able to raise the mattress so his congestion drained last night, so he seemed much better this morning. It's amazing that it arrived at the perfect time. We are very thankful.

 and a picture my hubby Mike Ortiz Photography took of us:

A sickly Jude, and a band recital

Last night Emily had her first band recital. She plays Clarinet, and they have been practicing for some time. It's rather amazing because they practice in like instrument classes so they have personal experience with only their instrument. Then a week before the recital they bring all the instruments together, and coordinate for the show. I was rather impressed with how they sounded for a beginner band. I will subject your ears to a portion of the show.

So once we finally got home from her recital, ate, and cleaned up we were in bed about midnight. Before we put Jude down to bed he wasn't really acting like himself. He was crying, and doing this little momomomomo with his lips while crying. Well he woke up at two am............sick! Which means we never really went back to sleep, I am dragging tail this morning. It's like mother nature heard me say how Jude wasn't in the hospital this Christmas. I am keeping positive, but I feel horrible for him. I have been so sick, and I am sure he caught whatever I have. This is what we as people with normal immune systems forget about the disabled. Jude's brain doesn't know how to properly respond to being sick. He doesn't have the same ability to react by coughing, turning over, opening his mouth instinctively to breathe, etc. So Jude winds up gasping for air, retching due to drainage, and aspirating because his body is confused. So I stayed at the house this morning until the nurse got there. She is so amazing with Jude, and immediately got him sitting up, and doing CPT on his back. Jude was starting with the seal bark, so if that continues we will bypass the doctor and head to Medical City. Honestly, it seems we have little use for the pediatrician in these circumstances. We really need him for well baby checks, and eventually vaccines. Otherwise they seem to just diagnose Jude with a viral infection, send him on his way, and we know from past experiences where he ends up. So let's hope Jude gets over this fairly quickly, and doesn't need a trip to the ER.

Isn't it amazing how take or granted how our bodies work, and how we fight off infections. I never thought about my ability to cough, and the other instincts I have before having Jude. Have you?

The weekend update

So I am still getting over the worst cold ever, but luckily it seems to be getting much better. Saturday we took the kids to see Santa, and everything went fairly well. Luckily Santa seemed to be well educated on special needs children. I walked up to him with Jude in my arms, and explained he had had a stroke, and couldn't hold his head up well. Santa said he understood, and willingly took Jude in his arms. With some coaxing Emily joined in the picture, and she helped with Jude. Suddenly they snapped the picture just as Jude's head fell, and the cerebral palsy over took his tiny hands. His hands began to ball up into fists, and his head slumped forward. Mike walked over to better position Jude, and they snapped this picture.

It's a keeper, and full of memories. I tried not to feel down that Jude couldn't enjoy Santa, but you can't help feeling a little down. I figured that Jude probably enjoyed Santa in his own personal way. Santa then asked Emily wanted she wanted for Christmas, and she told him her items. After that he turned to Mike, and asked what Jude would like. The conversation went something like this.


Santa: and what would this little guy like
Mike: Robot legs (way to post Santa up with the impossible dear hubby)
Santa: I wish I could give them to all the kids that needed them
Mike: How about just a wish that all the kids in the world could be healthy
Santa: and especially this little one.


Santa gets an A+. I thought about jumping on his knee and asking for a car that will house a wheelchair and has a working horn, but I figured we had given him enough unfillable requests. So I let poor Santa be.  After the pictures Mike took Jude home, and as Emily and I were walking off I saw another couple hooking up a feeding tube to their child. I smiled, and made a point to walk to them and chat. I nodded at the bag full of formula, and mentioned how we just switched back to the Kangaroo pump. The mom seemed grateful someone related to what she was doing, and said how she loves her Entralite. We chatted for a bit about how to prime the pump, and noise reduction, and then I scooted on my way.

It was then time for Emily to go on her Angel misson, and man she had an amazing time. First she picked out her two Angels. She searched the tree, and read over all the names. She settled with a 13 year old girl, and then picked a "precious angel". The "precious angels" are for the children that are left over, and not picked off the tree. So she picked a generic 4-6 year old female to insure they would have toys too.

We went through the stores shopping for the items requested on the Angel cards, and I think Emily was very touched. She mentioned how grateful she was to everyone who donated, and how she really needs to send thank you notes. She mentioned how nice www.realitysteve.com has been to her, and how supportive he has been of her causes. Then she said she wanted to adopt ten angels next year, and give up her Christmas to make that happen. Um, not sure she will uphold that, but we will see.

Today Jude had his neurologist appointment. The doctor said overall he thinks Jude looks very well, and even said that Jude's seizures may have changed. He thinks the "spasms" we are still seeing may be simple startles that a normal child would experience but enhanced due to Jude's condition. He wants to do another overnight sleep study on Jude some time after the holidays.

So even with my illness it was a good weekend. We felt defeated Jude couldn't sit in Santa's lap like the other kids in line, but thrilled he wasn't in the hospital. I was very proud of Emily for all she did this weekend, and overall we felt very blessed.

Santa

So Wednesday night I went to bed feeling a little tired, and Thursday I woke up SICK! I just didn't feel well at all, and it got worse throughout the day. By Friday, I was down and out, and actually called into work. Luckily, I started taking an antibiotic, and today I already feel 80% better!!! WHEW. I just had no time to be sick. I hate calling into work, and I also have a Scentsy party for tomorrow, and we really need the extra money. So I am thankful today for modern medicine, smiles.

Today we are going out for a it, but I plan on being back in time to continue to rest. We are taking Jude for his first Santa experience. If you remember he has been in the hospital the last two years, so this is a special treat. Also, Emily requested donations so her charity could adopt to Angels of the angel tree this year. The girl gathered enough donations for TWO Angels! She is very excited, and we are going to adopt them today.  Throughout the year Emily and I campaign for her Emily's Smile Boxes, and then in Christmas we pick a special family. Last year she picked the family of five whose both parents had lost their job, and now this year she is picking two Angels. We are able to help them all because of the wonderful donations, and support from the people surrounding her charity. Thank you everyone!!! We have been very blessed by such generous people.

Various uses for a baby boppy

                                                      It can be ear muffs.

It can be bull horns!

                                                        It can be a cell phone

Or it can be a great way to get your special needs baby to

actually play with you, and that's priceless!

Santa Spirit

So tonight we were watching "Glee", and the whole family loved it. They say the show has "jumped the shark", but we still watch it, and we think it's a wonderful show. Tonight was the Christmas episode, and it was patterned after one of my all time favorite Christmas movies, "The Grinch!". Sue, of course was the Grinch, and she did an amazing job. At one point they were talking about "Santa Spirit". Em got a little quiet, and said meekly "I just don't feel the Santa spirit this year around here". Why..........? Why wouldn't she feel the Santa spirit? I was heart broken because I have already done so much for Christmas without her knowledge. I began wondering if it's because of the recent tragedy we watched unfold this week, or if it was something I was doing. Maybe, it's just because she is getting older, or maybe it's because Christmas isn't about what we receive. So I sat there..............and I wondered what to do. It's important to me that even though my children get older they hold the Christmas spirit in their heart. So I thought a moment about what was important about Christmas....was it the lights, presents, or what? Then I came up with a solution. I said "Friday after work let's go see Santa". Em gave me a strange "teenager" look to which I responded "Jude has never been to see Santa, he has been sick, and we need to go", she quickly understood and smiled.  I continued, " after that let's adopt an angel off the angel tree:" . She seemed to really perk up, and then she spoke "but, I thought you said we really couldn't afford it this year?" I sat there for a second. I then responded "I get paid on the 15th, and luckily I have a good job with Mr. Tim, and if we do this God will provide.....we will provide a good Christmas for a little one that wouldn't have Christmas without us adopting them." Then she started talking about how we could provide two angels, and then three angels Christmas, and then I had to pull the reigns of my little philanthropist.

So Friday, I plan on my family helping my family find a piece of the true meaning of Christmas. The older we get the more cynical we get, and the further we distant ourselves from Santa. We forget the thrill of Christmas morning, and the innocence that laces the very fabric that makes up our hearts.  We forget how very important Christmas morning is to children, not for materialistic gains, but for HOPE.  This doesn't mean they need tangible objects to hold on to that morning, because the simple thought of someone loving them will suffice. So I encourage everyone to adopt an angels, or donate in some other way this holiday season.

I sent some evites out to my family, and I encourage you to join me on Christmas eve. I plan on restoring Emily's faith......in Santa!  I will send the same evite to some friends soon that might want to participate.

A dinner, a bed, and little Emmy

Last night when I got home we all got ready to go to a dinner for our friends who lost their baby. We debated on not going because Jude was sleeping, but Emily was insistent we do. She wanted to see our friends, and honestly I did too. Once in the car I looked back at Jude who was fully awake, and making the funniest face at us while peaking out from his hoodie.

Once we got to the dinner I was just emotionally exhausted, and I am sure everyone else there was too. It took about two sips of wine and I was done. My friend actually held up pretty well at the dinner. I noticed she would tear up when she was looking at other babies, but that is a normal reaction.  I still tear up when I see toddlers running around that are Jude's age, but he is in my life. We deal with a loss of a life,or a loss of what we thought our future was going to be, or just a loss of normalcy in our own way. They say time heals all wounds, but I am not sure you ever heal from losing a child.  Even with all I have been through I still say stupid stuff in the midst of a tragedy. I told my friend that the religious sayings from people got on my nerves when we had our situation with Jude, and that if she ever wanted to just really talk to call me. What I meant was everyone telling me, "God doesn't give you more than you can handle" really irked me, not that I had lost my faith, or that nothing religious helped. Anyway, it's one of those times when you slap yourself once you left a conversation because you realize at a later point what you said wasn't correct. I guess we all search for the perfect words in a situation like this, but there are no words for a situation like this. I continue to pray everyday for her heart to find peace, and that he baby boy survives, and lives a long joyous life.


Luckily Jude has been sleeping the last few nights, so that is good. I came in to check on his last night, and he was on his back, and when I came back in he was on his side. That means Jude moved positions on his own which is truly amazing. I think he was already tiled a bit with the help of a pillow somewhere, but that is still a huge accomplishment. I always wonder what to get Jude for Christmas each year, and I wonder if he notices the gifts. This year I got him some singamajigs, which are really cute. You can see them here: http://www.thesingamajigs.com/landing.aspx . I also want to get him a music mat, and I heard that singing toothbrushes are good for special needs. Also a huge gift is his sleep safe bed, which should be arriving any day. This is what his new bed will look like

So last night night there was a little baby at the dinner, that looked just like Emily did as a baby.  When I got home I had to pull our Emily's old pictures just so I could send a scan to the baby's parents. I got an email back from them because they were amazed how much they resemble each other at that young age. I just had to share the cute picture with you, but don't tell Em, she will get me for posting it. Wasn't she such a cutie?