Monday nights update.

The good news is the infection in the left lung looks better! The bad news is the right lung is showing signs of being infected. Jude's fever went back up again and his pulse ox is all over the board tonight. He also cried for lengthy periods tonight. However, he is now resting comfortably and is smiling again.

So two steps forward and a step back. These were updates via the nurses and RT. I will get a full run down from the doctor in morning and I am wondering if he won't order another chest sonogram. We shall see.

Monday's update!

Well it was an interesting night Mike said. Jude's fever did spike again like we had said. Then his pulse ox dropped to 85 during the night so they did have to put oxygen on Jude. However, he was back at room oxygen this morning. The doctor came in and said he wasn't overly concerned about the fever since it was only at 100.5. However, I wonder how high it would have gotten if they had not been monitoring it and given him Motrin. The doctor did order a repeat chest X Ray today to see if the effusion is contained, bigger, or the same. He said even if it does come back that it's grown they can handle it. We also want to make sure he isn't aspirating on the additional throw up from last night.

The good news is Jude is 12 hours into his 48 hour testing again for no fever. We can pray that he continues no fever and we can take him home. However, I do worry about that too! I get a little panicked thinking about something going wrong at home.

Here is a picture Mike sent. Poor punkin looks so pale, but I am sure he will be up smiling again soon some time today! Even sick he is always a happy boy.

Sh$$!!

As mentioned mike is staying with Jude tonight. He texted me a few times that Jude had thrown up. I asked him how Jude's fever was and he said Jude didn't have one. I reminded him that in the ER Jude didn't register a temp but when taken internally it was 102. I reminded him that fevers make Jude vomit. So after another puke fest, mike texted that Jude's temp was 100.5 and they were giving Motrin.

I feel so defeated! I want my family home!  I understand my life is so much better than some but at this point I decided to just have a nice crying meltdown. I decided I need to reach out to my family and say.. we need help. To tell my boss... It's been 13 years and I need some time without the stress of worrying about racing to work.

Hopefully this fever isn't a big issue, I mean its not over 101?  But I know it is. Blah!!!

Sunday update take two

So the good news is that since 11am Jude is FEVER free!!! Now let's hope he keeps this up. We established the fact that Jude is really sick. However, our goal with Jude is a little different than a normal stay for most people. Our goal is to get Jude home to let him finish getting well there. Hospitals carry a lot of bad germs that could be lethal for Jude so the less of a stay the better! The doctor's know that Jude has two great nurses at home and us.......nursing degrees via osmosis..lol! However, we also don't want him to go home to soon and Jude get even worse. That could have a very bad outcome. Overall we are doing well. I am pretty stressed about work and being here for Jude. It's a hard delicate balance.

It's Sunday and even though I love the Cowboys, Mike is overloading me with football. I pried my lap top away from him long enough to blog. He seriously has the TV, his phone, and my lap top going with games and fantasy football. So mom here is rather bored. So here is a tour of Jude's hotel de la Cook's!

Here is the entry to his room letting you know he is in isolation and you have to check in first (don't let that scare you he frequents these rooms when he is here)

 

Here is where you need to put your gloves and gowns on to see Jude.

 

Here is Jude snoozing comfortably in his bed.

 

 

and this is where mom sleeps...........it hasn't been made yet.

 

 

 This afternoon we had a church group stop by that were friends of friends. They were SO nice! They brought us lunch, money for the cafeteria, and are even bringing food to our house for Emily. I was so touched!

We will be watching Jude throughout the day to see if the fever starts coming back. Our hope is that it doesn't and we can go 48 hours fever free. If that's the case we can take him home to let him finish recovering there. The doctor said to tell his pediatrician not to do a chest X ray because it takes a really long time for this illness to fully heal. I am very grateful that Jude is looking a bit better and I hope he only continues to heal. This illness does make his immune system weaker so we will be watching him close at home.

 

Jude's hospital update - Sunday.

So they did start Jude's feeds back yesterday and overall he did pretty well. He did throw up when he was trying to go to sleep after they gave him some Tylenol. I am not sure how the doctor will respond to that. His heart rate was also pretty high yesterday and we are assuming that's the fever trying to break through the medications.  He also threw up this morning during RT, but swallowed it before anyone could do anything....sigh. Exactly what gets us in this mess. His o2 stats dropped right after that and she had to put some oxygen on him this morning. Then his stats just went haywire and she realized his lead had popped off his toe, whew. So she put it back on his toe and he fell back to sleep and his stats went back to normal. He is spending more time sleeping than awake, but I guess that's not a bad thing.

So in an ironic mother nature hates me kind of way I woke up SICK! I just know I have a sinus infection...I mean really? If I had a doctor or dentist I could call up and say hey life kinda sucks right now and I would love you forever if you could call me in some Amoxicillon I would, but I don't. So I will ride it out and go to Care Now whenever I can. Darn hospital germs!

Tonight I am heading home for the first time to sleep. I feel really bad leaving Jude, but I know his dad will be here to watch him. My aunt is staying with him tomorrow and I am hunting someone to sit with him from 9-5 on Tuesday. If you are available please let me know. It's basically sitting in the room and watching him sleep while watching TV. If I can take additional time off work I plan to, but I am not sure that will go over well.

I haven't seen the doctor yet this morning and neither have the nurses. So right now they still have the orders to give the fever reducers. I know the doctor was wanting to see if the fever breaks through today without them so I am hoping the nurses hear from him soon.

Anyway, here is a picture of Jude. The doctor told him "Jude you are the happiest sick person I know".

The doctor's plan of attack

So far Jude is still tolerating the food he took in overnight which is good news. The doctor came in and was again very nice and very straight forward. Today he would like to keep Jude on his pain relievers and proceed with his regular eating schedule. If Jude throws up.......we aren't getting out of here until he keeps food down. If he keeps the food down then tomorrow they are stopping the Motrin and the Tylenol rotation....if he spikes a fever we aren't getting out of here until he is fever free. If he stays fever free then we are looking at about 72 hours later we could possibly take him home to care for him there. YAY! I miss my bed already, I admire parents that are here for months or even years.

The doctor explained that for how sick Jude is he really does look pretty good. He said that many children in his condition just look really awful. He explained that the chemicals produced by the body when fighting such a hard infection can have various effects on the body. One of which is the skin color changes we see in Jude. When he woke up this morning his cheeks had color, but now we are at about 1pm and he is very pale again. My cousin and my great friend Carolyn came to visit today and they both noticed how Jude varies from one hour to the next. One minute he is smiley and flush the next he is very pale and aggitated. He is also sleeping a lot. The doctor said his main goal is getting Jude better, but that he also doesn't want to send him home to early. He said he has seen in the past where children went home with this effusion issue and bounce back critically ill. So we want to avoid this issue.

So that is the plan of attack. So the next 48 hours are crucial to see if Jude is truly getting better or if the pain relievers have just been masking the problem. The doctor told Jude, "For someone so sick you sure are a happy little guy!". He also said Jude is really a fighter, but we already knew that ;)

Thanks for the prayers!

Jude's overnight update

So overall Jude DID have a good night. They are running his pediasure at half strength and 45 ml per hour and so far he has kept it down. So it seems the Zofran they gave him worked! The big test will be when he wakes up. His stats held good most of the night except for a big increase in his heart rate when he would wake up moaning. I don't think this was from his spasticity but rather pain he was dealing with. He would moan and moan until he got medicine or could get comfortable again. So we are a bit tired this morning. The nurse Melissa is very nice and said she knew Jude was up a lot and was saving his vitals for last this morning.

I am waiting for him to wake up so I can hopefully see some smiles. Hopefully it's a great day. I will update again tonight.

A late night update on Jude.

The sonogram of the chest did reveal the Pleural Effusion, but it showed that it was confined to one area. The doctor described this as Jude's body being defensive and building up a wall against the infection. This is positive. It doesn't by any means mean that Jude is out of the woods, but it's positive. I was encouraged by the fact that Jude had better color today and he was VERY responsive to my voice. He would turn to find me and then he would smirk when I talked to him. However, I always describe Jude as my little yo yo. Jude's color seems to have diminished again some tonight. We also tried to start his feed back, but he threw up again. This could have been related to his respiratory treatment so the nurse gave him Zofran and we are about to try his feed again.  His pulse ox also just dropped to 88, but after some work and clearing his throat we are back to 95.  Jude is still getting is pain/fever reliever every 3-6 hours so he is still temp free which is good.

It's been hard telling people how Jude really is. Sometimes Mike and I are at a loss as to what to say. Mike leaves it as "Jude is really sick, but his color is better". My boss asked me today if there was improvement and I just replied "yup". It's hard to tell someone that while there is improvement there are also set backs. However, we focus on the positive. With Jude I always say he can go from great to bad within seconds and from horrible to fantastic just as fast. So with him..........well Jude has always been a wait and see type of case, but that's alright with us. Jude is worth every ounce of time we give him and more.

Jude did have another bad diaper, but they couldn't collect enough for the C diff test. However, Mike saw first hand what I was talking about and agrees there might be an issue. We are hoping it's just the antibiotic not actual C Diff. The good news is if there is an issue we are in the best place for them to treat it.

Again, I would like to thank everyone that has reached out to us. I would also like to ask forgiveness to those I have been over emotional with. I am tired and a bit stressed. I was doing wonderful until today. I think I just got over tired. That makes me weepy and dramatic so cue the curtain and the camera lights.  

Anyway, we are hoping for a fabulous night! A friend of Mikes sent Jude this GIANT stuffed shark tonight and it's so cute. It's literally Jude's length and makes the perfect body pillow for him. Maybe it's a sign of how tough Jude is in fighting these illnesses. Jude has overcome Cdiff before, pneumonia 6 times (or 7 I lose track), and is now overcoming a pleural effusion. He is a great little fighter.

A hospital update

My aunt came to sit with Jude today while Mike and I went into work for awhile. She has been texting me updates and pictures since I left. She knows I worry, but I also know he is currently stable. Jude does look better to me today. He is still very sick and Jude's condition can always change, BUT he looks better! I am taking that as a sign that he may be over the danger hump. If that's the case the hospital will continue to keep him comfortable while the antibiotics do their work. He is still looking at a lengthy stay.

The only thing that is currently concerning me is Jude had an awful diaper last night. They are not feeding him and only keeping him hydrated so I figured this would be the last one. However, today he had a HUGE diaper and then another plus excessive gas. I am growing a bit concerned regarding C-DIFF since he has had it before. I have asked repeatedly since we got there for a probiotic. My aunt just texted that they are paging the doctor for the probiotic. C diff would NOT be good in Jude's condition.

We are still waiting on the sonogram results and we will watch his intestinal issue.

The good and the bad

First the good:

To me Jude's cough sounds much better and his stats look awesome to me. He isn't needing any supplemental oxygen and his heart rate has come way down. The nurse also said she feels like his air movement is a bit better. This area all very positive signs to me!

The not so good:

Jude had a bad morning. About 5am he began throwing up again without anything to prompt the throw up like a startle, wake up, or seizure. Unfortunately, he was really struggling and his pulse ox dropped. I figured he had a mechanical obstruction so the nurse called in the charge nurse and we all got him back to normal. While standing up with Jude I said, "Oh my what happened to his color?". It was even worse than it was before and then his eyes began rolling back into his head. So the nurse called the doctor to update him. Since Jude's stats look good the doctor figured what I had felt that Jude is just well............really sick. However, the doctor did notice his stomach was distended and ordered a abdominal X ray and a chest sonogram. He wants to insure that the fluid in the chest wall from the pleural effusion (do not Google this term..trust me)  is not building up so much that it's backing into other organs. This would require surgery for a chest tube to drain fluid. I believe it's just gas from all the medications, etc. The nurse didn't feel Jude was stable enough to transport him down for the X ray so they did it in the room. Sure enough it showed a lot of gas. However, they haven't done the chest sonogram yet. This will not only tell us  about the fluid but also tell us how dense of an infection we are dealing with.

Jude has been sleeping on and off since about 6pm yesterday. He pretty much just stays asleep, but the nurse said that's very good for him. We all know our body heals and resets when we are sleeping. Jude spiked another high fever early this morning so the doctor has prescribed Motrin and Tylenol be alternated every three hours. If they can keep Jude comfortable I am sure his body can fight better. He is still in a regular isolation room and has avoided PICU. They are relying on us as his parents to point out any marked changes we see that they don't catch. However, they have been very good about picking up on everything including his color change. The doctor did  say that in his past experience with an illness this severe he has seen a hospital stay of several weeks. I may be calling on a few family members to sit with Jude during the day when he is stable enough so we can go to work.

My thoughts:
 
I got a call today from Ragan's Hope http://raganshope.org/. Which is ironic because Emily JUST volunteered to work their event with Night of Superstars last week. They offered to help us in anyway they can and to bring a meal. Man they must be life savers for people that have long extended hospital stays with children with chronic illnesses. I told her that being in the hospital is like a vacation it's all the cost but none of the fun. She said that's a great way to describe it. She asked about Emily's Smile Boxes and I explained what Emily's charity was about. I also began to think that it sure would be great if at some point we could pass out Visa/MasterCard gift cards for parents of the children in hospitals. The Dallas Cowboys called about helping Emily's Smile Boxes (although I can't seem to reach them back) but maybe this is something they can help with. They would have the resources to create a card that would also feature their logo and their show to give back to the community. We could include them when we drop off boxes. Just a thought for the good ole Dallas Cowboys (lol)!

Jude's update from Cook's

So last night when I got home Jude had been sleeping for several hours. I took his temp again but it only registered 96.2. When he woke up he did smile some but I noticed he was looking pale again.  We all went to sleep only to wake to Jude vomiting and a 103.3 fever. At that point we just packed him up and went back to the ER after giving a dose of Motrin. By the time we got to the ER his temp was down to 100.2. His heart rate read very high but his pulse ox was great. So they did another chest X ray and found the pneumonia had gotten worse. However the ER doctor said she wouldn't say he was "sicker", but not getting better so therefore they would be admitting him.  While in the ER I noticed that his coloring was beginning to really diminish and the nurse noticed it too. The ER doctor said she was glad she decided to admit him and then Jude started throwing up.

It took about 8 hours to get an open room and then we were moved into an isolation room.I figured we would probably be here 2-3 days and settled into his room. Then he doctor came to see me and I learned otherwise.  Jude has pneumonia in the lower left lobe now. In addition the infection has spread to the outer layer of his lung. He said the infection around the outer layer will be difficult for Jude to fight because our red blood cells don't travel there like they do the rest of our body. He was very blunt which I like in a doctor. It may sound harsh, but I have an appreciation for that...he said "I am not telling you he is on death's door but I am saying he is very sick".  They explained that their main goal right now is to keep him comfortable and to try to get these antibiotics to work. They also said they maybe dealing with a possible staph issue. The doctor then explained that Jude is so pale because children fighting this type of infection become anemic because their red blood cells are busy fighting. So if for some reason he has a marked change or the worse they will move him to PICU. Luckily right now his pulse ox is still good and they are keeping him stable in his room.
So we are praying that Jude responds to the medication and begins to show marked improvement If he does then when he is fever free for a couple of days they will let us go. WE are leaning that way towards if he doesn't improve and what those options are. We appreciate your thoughts and prayers and Jude sends his love.

Jude's illness update

Jude looks better today. He is still running a low grade fever. His pulse ox went from 96 this morning up to 100 and his breath sounds are good. We will watch the temperature to make sure it eventually goes away. I am hoping this means Jude is properly overcoming this new battle with pneumonia. He is still vomiting phloem but that's normal for someone so congested.

I held Jude last night until he went to sleep. He would keep looking at me and cracking this adorable smile. I love when he feels safe and happy.

I have had the worst feeling lately and I hate it. I am very positive that Jude is happy and becoming healthy, but I can't shake this feeling. I am not sure what it is so I am going to hope it's just crazy woman hormones!

I am keeping the update brief, but I wanted everyone to know that Jude is looking better!

A quick update

Tonight we are still weighing equally on the positive and the negative. The good news is Jude LOOKS better! The bad news is he threw up again and he is warming up like he is getting a temp tonight.

For the first time tonight Mike said in passing,  "I think we need a vacation". He knows we need time to decompress. I feel like we are both about to implode! However, it's Jude that's sick again and I can only imagine how he feels.

We have hooked up his feeding tonight and have let it run for an hour prior to giving the antibiotic. I am hoping tomorrow Jude looks even better than today and we can avoid the hospital all together.

Jude's pneumonia update

Not sure what to write on Jude. I am a bit perplexed.

After we got home from the hospital Jude seemed to be doing a bit better. He was still pale but he started smiling which is wonderful. His temp also seemed to go back down to normal so there were signs the antibiotic was working. However on Sunday I felt Jude and he was very warm again and when taking his temp axillary it was 99.8 (add a degree). Knowing Jude that means his internal temp was a lot more. So our nurse gave Jude some Motrin and it took about 2 hours to get his temp back down. He also vomited a lot of phlegm and formula.

So this morning Jude's temp was back at 99.9 axillary again. So we have exceeded our 48 hours and it looks like Jude will possibly go back to the hospital. However, he is still smiling (good sign!). His pulse ox was down this morning, but that can be positioning. His heart rate was decent at 124. So I put a call into his pulmonologist to see what he suggests. We very well may be able to go another day and see what the antibiotic does. However, since Jude is throwing up some we want to make sure the antibiotic is not upsetting his stomach so much that he can't keep it in his system.

So we should know more later.

Jude's illness and a really late night

As I noted Jude has not been feeling well for the past week.  However, his fever has been minimal and the nurses noted good breath sounds in his lungs. However, Jude presents differently than some patients.  So yesterday we had made the decision to take him to the urgent care once we could get off work. Unfortunately, the day kept getting away from everywhere and we weren't able to get him to urgent care until after 6pm. Once at Cook's Children's urgent care they listened to Jude's chest and noted there was no fever. So they did an X ray and they were a bit concerned with what they saw so they sent us to the primary Cook's Children's hospital in downtown Fort Worth.

We went home and packed a bag because we know this drill. We then went to Children's and they took blood and reviewed the X ray that was taken at the other center. They also hooked Jude up for his vitals and noted his heart rate was very high. This is normal when Jude is running a fever, but he still wasn't registering a fever on their head swipe. I explained that Jude can hide his fever and those head thermometers don't often work with him. So they took a rectal temp and sure enough it was over 102. The doctor was concerned about Jude's heart and hooked him up to a heart monitor. I explained that a high heart rate is rather normal with Jude when he is ill, but I really think he was worried about the continuous aspiration pneumonia's effect.

About 3am Jude's blood work came back reassuring and the doctor came in to talk to us. Mike had just left to get something out of the car. I asked the doctor if they were diagnosing him with pneumonia. He said there was not doubt this was mid lung pneumonia and they saw a high levels of infiltrates. I guess the urgent care didn't know how to read it properly. but Cook's said it was a pretty bad case. They had given Jude a bag of fluids, an antibiotic, a dose of Motrin, and a dose of Tylenol. His heart rate was looking much better and so was his other stats! So the doctor looked a little perplexed and he said "I am tempted..." then paused. I said, "If you want to send us home it's fine. We have nurses at home and a hospital isn't the best place for Jude. We are well trained on how to watch him". I saw this look of relief come over him and he said, "I really am comfortable with his stats and hospitals carry so many germs which aren't good for him". I get it! I understand if this was a "normal" child he would be admitted due to his condition, but they trust us to watch him. Plus we have great nurses at home. Jude woke up today and is still very pale, but he is smiling now. He had been very pale, not smiling, and whining. So to see him smile is a big step forward.

After we were told to go to downtown our entire family got in the worst most stressed out mood. It was not a good atmosphere. On the way to downtown I was driving and the fact that Jude may have his 4th case of pneumonia in 9 months kept running through my head. I knew this wasn't good. Suddenly I felt like I could breathe and Mike said "why are you driving funky?". I replied "I feel like I am going to pass out". Then everything started spinning and I said "grab the wheel!". After scolding me Mike told me to pull over and he drove the rest of the way. I have no doubt it was just a stupid panic attack. So I told myself to PULL it together and then I was much better. Our family began joking in Jude's ER room and you could tell the nurse was relieved to have a family that was rather familiar with the hospital setting. We got home about 4am and we all crawled into bed. Jude's nurse Allen got to our house about 7am and I went back to bed. Mike couldn't sleep, but I know he will tonight.

It's been a trying week, but nothing we can't handle. I am SO thankful for my friends that texted last night until wee hours of the morning to check on Jude AND the family! You guys are so thoughtful and I am thankful for each and every one of you. It was so amazing that word of mouth traveled and people took the time to think of us during their busy lives and reach out. My most wonderful text that made me cry was "best friends forever 24/7 365 days a year until we are dead and buried". So sweet I just cried because I was so touched! I have been struggling with missing a friend so much and a situation I haven't wanted to talk about so trust I was SO touched last night.

Tonight I have to take Emily to a gala to support 20 children with disabilities that have overcome all the adversities to really shine. Emily go as Tarrant County Teen and through her charity Emily's Smile Boxes, she will be walking one of the children down the red carpet to the event. 100% of net profits fund Superstar College Scholarship Program (every Superstar Alumni is guaranteed college assistance) and their Superstar Family Support Program through their charitable partner, Ragan's HOPE (http://raganshope.org/). We didn't think we would get to attend because Jude is so ill. However, Mike is going to stay with him so we can run up there for a few hours. I will be ready to get home to Jude, but I will be happy to help out some deserving children.

A bad night for the JuJu Bean!

Jude did NOT have a good night and I am flat out exhausted at work. Normally at night when Jude wants to be turned over he will grunt a few times. I will then walk into his room and reposition him and he falls back to sleep. Last night on three separate occasions Jude would start whining and within seconds he was in a full on loud shrieking cry. It was awful! At first I thought it was his legs giving him issues, but then I noticed he had a fever. The first time I took it his temp was at 99.9 ax and then it was 98.9 ax (add a degree). So about 4:30am we gave him some Motrin and he went back to sleep and didn't wake back up. At 8am this morning he still didn't have a fever.

So the big question is if this is related to his legs or if he has something going on. His lungs sound clear so it may be a sinus infection. Basically we just have to keep watching him right now. Jude cannot tell us what's wrong he can only express he is hurting. If we take him in they will most likely say that it's viral and it needs to run it's course. So until the illness rears it's head in another way we are a bit stuck. His Motrin should start wearing off between 10:30 - 12:30 so I asked Charlotte to update me on his temperature and any pain.

I almost didn't make it to work today. For some reason I am really dragging lately and the lack of sleep is affecting me a lot more than it normally does. However, I am here for the time being.

A pale little Jude but a happy Jude

Jude has been rather restless lately and he has been looking very pale. The nurse noted that he has wheezing in all lobes today, but he is not running a fever. So right now we just observe to see if he has a little viral infection or something that could turn into more. He isn't sleeping well, but he is very happy when I am at home holding him. I have had SO much going on with Emily's schedule that I joked tonight that he is ill from lack of mommy time. I am hoping that's not truly the issue. However, I held him for hours tonight and he was SO smiley.

The doctor increased Jude's Artane (a medication for his tone) and I can always tell when it starts to "kick" in. Jude was really looking at me directly into my eyes tonight and smiling so big. The sessions were fleeting when he looked at me and he quickly looked to the side because his brain was confused what he was seeing.However those few fleeting seconds are priceless. It's just a bond that's hard to describe.

So we will be watching over Jude to make sure he gets back to his normal sweet self.

Jude's legs and Emily's struggle

Earlier this week Jude's therapist became quite concerned in regards to Jude's legs. She said he thought she could feel the ball on the femur on one side thus leading her to believe the leg was completely out of socket. Jude has had a lot of discomfort and some issues with sleeping so this would make sense. However, he would sit in his tomato seat for us for several hours at night which is actually really good. So Mike put a call into the ortho and he still believes that the pain Jude is experiencing is from the muscles. He gave us instructions on what to watch for and still wants Jude to see if the Botox in October will help with the pain. So we are still on schedule for surgery in January.

I began to panic when I heard that there might be a possibility that Jude would need surgery now. I know this is common with CP children, but it's not common in my world. I don't like the thought of having him rolled back into the OR again or being in pain after the surgery. He doesn't understand why he is being subjected to the pain. However, we are far to gone on his legs for anything else. The DR flat out told us the brace won't help anything now except with pain.

Emily is doing well, but a bit overwhelmed with High School homework. She did have the honor of being elected Freshman homecoming lady. So it has been a very busy week at our household. She is busy helping me plan upcoming Emily's Smile Box parties to help serve the community. She is also struggling a bit with someone she cares for who is having a really hard time with the loss of their friend. It's hard to know what to do in situations involving grief at my age much less at 14/15. So all I can do is pray for everyone involved.

Make it a great weekend. Reach out this weekend to someone and let them know how much they mean to you! It could make their day!

When I lost a young love

My cousin contacted me the other day about writing a guest blog on the subject of grief. It's a topic I have covered rather extensively lately and being family she knows that I have vast experience with this subject. Trust me, that's not a brag.

I was a bit reluctant because I am so busy this week, but I was able to cut and paste some items from my blog and mix it in with some new words. She liked the short synopsis so she asked if they could use it and I agreed. However, since I have been home from work my mind has settled in on the subject of grief and her request. I mentioned over and over how we grieved for the loss of the child we thought we would have in Jude and found an amazing blessing in the child we received. I have touched on the topic that I lost my mother, my grandparents that raised me.......and Chris. I lost Chris. It was the single hardest situation I think I have ever dealt with. I have wrote on him briefly before so people will be aware of the dangers of suicide. So here is the whole story if you have heard it or read it before feel free to skip it.

When I was merely 15 years old I met the most gorgeous boy with big brown eyes and sandy blond hair. He was tall, very tan, and had the best sense of humor. However, I knew he had some problems at home and with drinking. He wasn't the "bad" boy but he wasn't the best behaved either. We had met in a counseling session because of his behavior problems and of a situation I was going through. The situation was at no fault of my own but not one I am ready to discuss in public. We instantly had a connection and began talking to each other on a regular basis. Outside our session we talked daily on the phone because there was no twitter, tweeter, or whatever it's called. In fact I answered his calls on an antique black phone like this.

No I am not joking, I lived with my grandparents and at the time I didn't have my own phone line. So therefore I sat on their shaggy blue carpet in their room, hiding behind their fluffy bed, and whispered my secrets on the above phone. We talked about our families, school, friends, and new songs. I remember singing "Oh no even downtown voices Kerry" and he laughed until his sides hurt then said "Jen it's... hush hush keep it down now voices Carry". Our phone calls turned into Chris driving with a permit over 40 miles to see me in the middle of the night (take note teens SO wrong!) As a mother I am now horrified even though I know nothing ever happened. We were innocent kids sneaking out and reaching to the stars for our freedom. We ran through the tree lined blocks in the summer air laughing and giggling. We didn't drink, we didn't do drugs, we didn't have sex, we were just teenagers. We walked through parks while we held hands just looking at the stars and talking about what might be. However, I was naive.

After summer our school started back. I went to a new school and was forced to change from high school back to middle school because the new ISD didn't recognize freshman as high schoolers. He went back to school and faced the reality of all the things that drove him to once drink. He still called me every day after school like clockwork. We would talk until my grandparents scolded me for not eating dinner and made me hang up the old black hard wired phone. I would then make my way to the kitchen and sit at the bar area while eating my dinner and waiting on the kitchen phone which looked like the below to ring. When it did I dashed to the back  black phone yelling "OKAY HANG IT UP" so I could talk for another hour.

 

I was young, I was full of dreams, and I was impressionable. One time Chris drove with his best friend to meet my cousin and myself for a movie. She got to meet him! We laughed, listened to music, and skipped out on a movie we were suppose to be at. We were wrong, but had the best time. Looking back it all contributed to an unfortunate situation that a teen would never understand was coming.

Weeks passed and Chris became more agitated with life in general. One night on the phone he was frustrated at home, at school, and just seemed upset. I told him I was going to bed and he seemed upset so I knew he was probably coming my direction. Sure enough late in the night a scratch was heard on my window. As I pulled back the curtains I smiled at his sweet face, but knew he shouldn't be there. I complied with his request and wiggled my way through my window and down into the warm air. We sprinted down the street to his car and whisked away to the park. We sat for an hour and talked about his situation. I tried to console him and tell him that life always gets better. I told him that we probably shouldn't be sneaking out and that it wouldn't be long before we both has our licenses and we could really date without issue........then we saw lights. crap! OH NO! The police. Why wouldn't their be police? (says the adult mom in me now). We were led away ......... and I was humiliated. I was such a good girl and I came home with my tail between my legs and my grandparents wondering what I had done when all it had been was a simple conversation. However, it was against the law......it was wrong....and we got caught. We both thought there couldn't be anything worse...ever!!!

The next day I went to school tired and ashamed. While sitting in class I received a message from the office that I should call my mom........"my mom?". She passed away when I was 7.......and I knew. I received a pass and went to the pay phones..........they look like this....

 

and dialed Chris. He sounded horrible and desperate and said he was thinking about killing himself. Having no personal involvement with anything like this before I told him he was being irrational and to calm down. I told him I loved him but that I was exhausted from the night before and embarrassed. He seemed to calm down and then I simply said "I love you". For an almost 16 year old girl ........ I meant it. I loved him with everything my young little heart could love.

After school I had a track meet and I hesitantly went. As I was laying on the warm grass waiting my turn to run I suddenly got the worst sinking feeling. I jumped up and told the coach I have to go home NOW! I think she was so disturbed that she found one of those antique pay phones and called my grandparents to come get me. I couldn't explain what happened to them..........it was just a feeling of dread. Once we got home I immediately called Chris...but his mother answered and I hung up. HIS MOM! Why would his mom answer? He always answered? why was I such a coward?. I was shocked but not dismayed so I waited a bit longer and called again and yet again another family member answered and I hung up. I was at a loss. Then I got it..........I got the call..........from his best friend that was there the night my cousin went out with me. His name escapes me now, but he was such a sweetheart.

"Jenn........have you heard?" he asked.
"Have I heard what?" I asked, confused
"Chris died today!" he replied
silence
"Stop. Where is he?" I asked
"No seriously Chris killed himself.........he hung himself and his mother found him" he said
I gasped because I could tell he wasn't lying. I didn't know what to say. I just started wailing and my poor old grandparents that were so sweet and kind to me were at a loss of what to do. They called family, friends, and counselors. I was inconsolable.

His funeral was awful. They wouldn't allow me to see him (BIG mistake) and when I got there they shut the casket. That church was so jammed pack with high school kids that you couldn't move a foot. Here lied one of the most beautiful kids.........gone, tragically, without reason. Done by his own hand. The funeral was sad and the burial even worse......it made no sense. Yet when everyone (except his poor family) went on with their lives I was back still grieving, still broken hearted, still wondering. I began wondering if I heard him talking to me, if I could see him in shadows, and if there was life after death. An avid Christian even the very depth of our human soul is tested when we lose someone so close. It was hard especially being so young.

After Chris died I immediately latched on to another boy who ironically had the name... Chris. My best friend James told me "It's to soon", but I ignored him thinking I knew it all......I mean teenagers know EVERYTHING! Well James was right.........it was to soon. I needed to grieve........I needed time............I needed to let go. It took a really long time and as I have mentioned before those wounds never really heal fully. I am 40 years old.......it's been 25 years and I still think of him. When I hear "Til Tuesday" on the radio or watch Pretty in Pink I let out a small giggle and a sigh. I remember a very tall, sandy blond hair, beautiful boy in a yellow shirt standing at my window. I see the fleeting life of someone that should still be here and I now think of how horrible his parents pain must have been. I think of how their grief must have been so much worse than mine even though at the time I couldn't imagine that. I think of how desperate his mother must have been ripping him from that wall and my heart cries out more than it ever could have as a teen that lost a love. I can't imagine.......I don't want to imagine.  Before I married Mike I dreamt of Chris. He was older and wiser and simply said, "this is right he loves you dearly" and I finally felt at peace. I finally felt I could move on.

Now being the mom of a teen I sometimes panic because I know how rampant young emotions can be. I wonder which path I should lead Emily to while knowing she will eventually choose her own right. Let's just hope we BOTH make the right decision on which path is the best one.  

Happy Birthday my darling son!

Today I refrained from posting on my Facebook (my primary social network communication) regarding Jude's birthday. I have posted throughout the week on Facebook regarding Jude's birthday party were holding for him on Saturday. I debated on what to post today when his actual 5th birthday rolled around, but my amazing husband summed up everything I was thinking with the following post.

"Five years ago today, you came into my life. I was so scared and unsure how we were going to care for you. Words at the time, which I hated to hear, 'God has a plan' only confused me more. A plan? What plan includes ME to care for a child that will be totally dependent on ME for the rest of his life?
I firmly believe we all have a few moments in our lives when we have to make hard choices. Ch...oices that will define us for who we are and who we will be. Sometimes those choices are opportunities for us to grow, to evolve as a person. In my young adult life I made so many selfish wrong choices, and ran from opportunities. You were my saving grace. You were my redemption, my chance once more to do the right thing no matter the cost. Jude, it hasn't been an easy 5 years, and recently we became aware of another hurdle for us to clear together. We will make it through.
Five years ago today, I promised God and you that if He got you here I'd carry you the rest of the way. I love you Son! You by far are the best thing I have ever done in this life. I thank you for teaching me patience, I'm still a student, I haven't mastered it yet. Happy Birthday Jude, I love you"\

 

Many new parents walk into a sonogram room and learn the sex of their beloved child. We walked in to learn "It's a boy"...........followed by.............."there might be a problem". We were told to decide if we would continue a pregnancy that might not have the perfect outcome, but might have the worst possible scenario. It's funny that over time their "Worst possible scenario" has become our incredible blessing.

 

Despite Emily's amazing dedication to her brother through Emily's Smile Boxes, Emily has recently really learned what it takes to dedicate yourself to a disabled family member. I have heard "It's not fair", "Why is my life different", and "it's always about Jude" only to be followed with a teenagers big blue eyes looking for reassurance. She understands Jude's needs.........it's just that sometimes ......... well it's just hard! It took two 40 year old adults five years to realize what an amazing life we have  so you can only imagine the time it takes for a teenagers to learn. However, today when we flew back from a very short trip to Miss Texas for Emily to reign.......I got little resistance. In fact tonight I got a child that came to me today as I was getting ready for bed that truly understood what it meant to be a role model. We talked about Miley, Justin, and more and how people choose to be in the limelight. She said "You choose to be a role model and you can choose to stop!".

 

Jude has taught me to tell people when I love them, have patience, voice my opinion, love unconditionally, to always check for a temperature, to enjoy the silence (Ginger/Kel will get this), encourage the weak, love the strong, be thankful for my job, speak up when someone is a blessing, ignore those that don't know your mission, always think beyond yourself, and to love a child like there is no tomorrow!!

 

With that I will leave you with my song that always reminds me of Jude!

 

Five years old? Bring on the next five! Let's prove the doctor wrong .... together. I love you Jude with all my heart and soul! In my eyes you are perfect!!!!