Thursday, April 30, 2015

A scary moment

Jude is up and down. He literally leaves us guessing most of the time. I thought he looked better yesterday when I left for work but when I got home he gave us a huge scare. During the time we didn't have a nurse Jude began coughing pretty frequently. At one point he got so choked up that we were trying to clear him and his heart rate started rapidly falling. He fell all the way from 140 down to the 60's.....but we finally got him cleared and it started rising again. Then his oxygen began was an interesting night for sure. His breathing was very labored throughout the night and his alarms went off fairly frequently. I got up to check on him several times and did not want to get out of bed this morning for work. When I finally drug my carcass out of bed I checked on Jude and he looked better. He would turn his head to where ever my voice was and I knew he wanted to be held but I had to leave for work. Due to his crisis issues I didn't hold him on the couch like I normally do the night before I simply held him in his bed. I am sure he was missing our cuddle time. Jude has never had his heart rate dip like that before that I can remember and it scared me! I will see how he does with Charlotte today before I begin forming any new conclusions or assumptions. 

Tonight there is a special wine and chocolate event in my small town. I was suppose to go meet a few of my girlfriends. I was really looking forward to it since I rarely get out and I am hoping I can go. However if Jude conditions worsens I will be home. So it just depends on how the day goes. 

Wednesday, April 29, 2015

Jude's condition

Jude slept all day yesterday until he finally woke at 9:45 last night. Once he woke up he gave me a little grin. I heard his alarms go off throughout the night but I could tell he always recovered well. This morning he looks better! I am guessing that combining the steroid with the antibiotic made him feel better. 

I say the following line over and over because I struggle with it. I think I struggle with the guilt from it. I love Jude and I always want him with me but I wonder if any other parents with a chronic child sometimes feel guilty for getting their child better only to have them suffer again. Of course I want him well and without pain, but does anyone understand what I am saying? It's like we get them better knowing they will go through all the pain and agony again and again. It's like a merry go round that never stops for them. Jude's lungs do not have the capacity to ever return to normal so it's all about keep him comfortable and well now. However getting him well means he will suffer again. I don't like him suffering but I don't want to lose him! I don't like watching him gasp and retract for air. I don't like his fevers and him moaning in pain. I hate he has to have all these tubes and wires running into his bed and constantly attached to him. He has to get tired of them yet he manages a little smile even in the moments he is so very sick. 

 I guess I will just look at this positive and be so happy that he looks like he is beating yet another illness and this time he did it without ICU! I will have him in my life a little longer and get to kiss his sweet smelling curly hair! Strong boy!  

Tuesday, April 28, 2015

Jude's update (includes picture that may be disturbing)

I didn't post an update at 4pm yesterday because I was really at a loss for words. I wasn't sure what Jude's status was and I wanted to watch him overnight. To sum it up Jude had a very rough night. I could tell Friday that he was just starting to feel very poorly. I again felt like I was saying over and over "he looks pale".  Then last night he just looked terrible and was having significant breathing issues. This picture is disturbing so I understand if you need to look away. 

I knew the only person that could get Jude feeling better is Charlotte. So before I called hospice out I wanted to see what she could do. To be honest........I kind of felt like this was Jude taking a turn for the worse. I slept for awhile this morning to try to help my pneumonia and I also wanted to give Charlotte time to work with him before I left. When I got up she was giving him a breathing treatment and he was in the shaker vest. She mentioned his lungs didn't sound well and I asked her to call me if he gets worse. She said if he got worse there was no other option but to call me and hospice crisis care. 

So I went to work with Jude on my mind and waited to hear something. About 11am I texted Charlotte and the charge nurse with hospice who had stopped by to see him. I was told Charlotte got him breathing better and he was resting comfortably! She is amazing. They are going to start Jude on a steroid in addition to the antibiotic he is on. I have mentioned that sometimes I feel like we just get him better with modern medications only to put him back through this misery again. However the nurse pointed out that they are comfort measure too and when his body is done it will give up without medications or intervention. I want him comfortable but of course I really would love him completely healthy. Realistically I know that is no longer an option. 

So the question remains on if Jude will get better with Charlotte working with him and the medications or if his little lungs are just tired. We will see how the day goes. 

Monday, April 27, 2015

Mom down! Mom down!

For your second and you freaking kidding me moment I have pneumonia. Not even kidding. Guess they weren't joking when they said this particular strain of highly infectious. I left work today and went by the doctor where I got an x Ray and a prescription for drugs that will fix me quickly. I decided to spare my co workers and head home for the day.  Note to friends and family if you start coughing and feeling poorly just go in! Don't try to remedy it on your own like me. No worries I'll be back to myself soon!

Jude on the other hand doesn't look well at all. His antibiotics have been going about 48 hours now and he looks worse to me. He is sleeping more and his color seemed to rapidly deteriorate last night. I have debated on calling hospice in to see him but we all know Jude can quickly recover. So I think I'm going to wait until his 4pm antibiotic and reevaluate the situation. I will post an update.

Friday, April 24, 2015

Kid down! Kid down!

Ever have one of those moments where you think "you have got to be shitting me" (forgive my language). I was all about that sentence last night as I realized my daughters sickness was just not getting any better. 6-8 weeks ago she went to Care Now and received an antibiotic shot due to what they thought was a sinus infection. Emily is rarely ill so we figured she would quickly recover but she didn't. So then we saw the Doctor on Demand........twice. They originally diagnosed a continued sinus infection and ordered antibiotics and a steroid.  She got better for awhile but then she started showing symptoms again. So then they said they thought it was viral. Per the ER last night they would have diagnosed the exact same thing based on her prior symptoms........but now we have a never ending consistent cough. Emily has walking I am not kidding. Basically the exact same highly contagious form that Jude had in ICU. I mean really? So she is at home prescribed an antibiotic for respiratory issues, 50 vials of abuterol, and a steroid. If you have called and I have not returned your call you now know why. 

To top it off when I rushed Emily up to the ER our nurse had still not shown for the night. So I get to the ER and my phone keeps going off with the nursing agency calling. I asked my husband to handle it and it turned out the nurses car overheated. Bear in mind that Jude was at home very ill last night. Luckily they got a replacement nurse. We all got in bed about 1:30 or so. I then kept waking up about every hour to check on Emily and peek my head out at Jude. I am tired and I would like to go home early today but that won't happen. 

The good thing is Em was in a good mood and although sick is toughing it out with a smile. 

Tuesday, April 21, 2015

It's okay to let go

Something has become very apparent to me this week and that's the fact I am not as strong as I used to be. I have always been extremely resilient and I tend to take the lead in stressful situations. However we had a nursing situation come up today and my husband recognized that my stress level has officially overflowed. My guess is that he may have recognized it months ago. Regardless when I mentioned the situation to him he took over without hesitation and even told the agency that they should no longer call me. Then tonight Emily was watching a funny you tube about a mom who could not handle her child being stubborn after his wisdom tooth surgery. She jokingly said "that would be you". I suddenly felt very overwhelmed with a sense of failure because it's obvious I have shown weakness when I needed to be strong. I began obsessing over the fact my child thought I was not good enough but then..... I decided to stop obsessing. 

I halted everything and realized that my life has not been easy and it's okay that for once I just hand everything over to someone else. I realized that I don't always have to live up to what I think people expect me to be. The truth is my true family will love me no matter who I am.  It's okay to allow my husband to be in charge and I promise to not judge the fact he forgot some of Jude's medications tonight, lol. As I held Jude in my arms tonight I felt little pressure to do anything else. The dishes, the laundry, and the messes will be there tomorrow ... but we may not. So it's okay to shut down and let someone else take the load. It's understandable and it will all be okay.... eventually. 

I guess this coincides with the blog I posted about changing who you are due to a tragic situation. Sometimes that change isn't easy but if you pay attention you will realize the change is needed.  If people don't understand you just have to believe that they will at some point.

Jude is pale and sleepy but he is full of smiles so I will consider this a good day! 


Monday, April 20, 2015

Emily's big win and Jude's fever

I am exhausted but happy. It was an amazing weekend with friends and watching Emily compete. I was able to sip some wine and enjoy great conversation with really good people. Emily and her friends did very well at the pageant. They seemed to truly enjoy their time together and I think it helped relax them all. Emily looked the best she ever has this weekend and radiated with confidence when she was on stage. Emily has struggled a bit in the past with interview so this weekend she said she was just going to have fun and be herself. I am so glad she finally registered that she should just be herself and let her personality shine. When she came out of interview she was just beaming with joy because it went so well.

I have to say that I am very proud of Emily but not just for doing a great job. I am proud of her for not giving up because I would have. She was determined to use each competition she didn't place in and each disappointment to better herself and try again. Due to her determination and hard work she succeeded and reached her goal of being Dallas Teen USA. Now Emily will be sponsored to go to Texas teen in November and obtain her goal of getting in the top 15 and maybe even Texas Teen USA. I say we all road trip!

I think one of the cutest sights this weekend was when we looked up and Emily's cousin Faith that competed with her was bawling because Emily won. She was so happy for her the tears just flowed.

Unfortunately when Emily and I got home Jude didn't look that well to me. He was pale and restless so I took his temp and it was 99.3. I gave him some Motrin and let the night nurse know. I heard Jude's alarms go off throughout the night. I got up about 6am to check on Jude and he was burning up to the touch. I took his temp and under his arm it was 101.7. So I again gave him Motrin but then his heart rate got out of control due to the fever and it spiked to over 200. I got some wet rags and more to try to bring it down and gave him some Morphine. Eventually it went into the 160's so I felt comfortable enough to lay back down for awhile. When I was leaving for work he still had a low grade temp and he looked very pale but he was smiling at me. If he is responsive during a temp that's good. So I know Charlotte will work with him today and I am sure Hospice will go by to check on him and see what they think the course of action should be if any. Hopefully he is feeling better soon.

Friday, April 17, 2015

A hard watch.

I always tell Emily that everyone has a story it's just that some stories are harder than others so be sure to make yours count! 

This is hard to watch but a reminder that when you feel you cannot go on anymore you really can. What courage he has. I question sometimes why children have to suffer and I honestly don't know the answer. However I do know that recognizing courage and bravery in others brings out the positive in yourself. I know Jude cannot speak like Jonathan but I hope people find  inspiration in Jude as I have found in this little boy. 

Thursday, April 16, 2015

Dr Happy Heart and the funky bunch

I went to see the doctor today. I had to share my conversation with him. After his initial assessment he proceeds to tell me about some tests he wants to run and he and the nurse come in and out of the room

Dr Happyheart: We want to test your thyroid. 

Me: My cousin said that's what's wrong with me and she knows all! Thyroid issues run in my family.

Nurse happyheart: Do you prefer one arm or the other for blood?

Me: No arm?

Nurse happyheart giggled. 

Dr Happyheart: we want to run a stress test too. I really think this will come back as something we can control and nothing serious. 

Me: Good but I can tell you the result of the stress test. I am stressed. Also, before you say it I know I am not at my ideal weight. I know all about working out and looking fit. Before my son I used to work out 3-5 times a week and ate super healthy. Now I walk through the door from work and take over an Rn's job for 5 hours until the night nurse gets there and then I just want to crash. SO my exercise consists of letting my German Shepherd pull me around the neighborhood. Make no doubt though I used to be super cute. 

Dr Happy heart giggled. He then put me on some medication and they set up the future tests. We will see how it goes but I am not to worried.  Basically my gathering is this could be from high blood pressure, exhaustion, and lifting Jude......but we will see. 

Jude's alarms went off all night long. His oxygen would dip but then he would quickly recover so all night I would hear beep beep silence. Cough cough, beep beep, silence, cough get the idea. Poor little guy. Nurse Allen is on shift today and he said Jude had a fairly rough morning and even threw up and it was bueno says the mommy. I am off to Emily's weekend tomorrow night and will be checking in regularly with the home front. 

Tuesday, April 14, 2015

An ER visit and Jude is smiley

So yesterday as I was talking to my co-worker she noticed I kept pausing to take a deep breath to finish my conversation. It's almost become habit for me now. I also still didn't feel very well. So she convinced me to go to the ER. I didn't text or call anyone except Emily and Mike. I didn't want to alarm anyone until I found out exactly what was going on. Basically they ran a battery of tests. I was tachycardic but I always am a bit, elevated blood pressure, and needed some oxygen. Their tests basically showed it's exactly what I thought and nothing life threatening. The doctor did say he believes their is an issue but since it's not life threatening he said it could wait until the doctor visit on Thursday and gave me a host of paperwork to take with me. He also said he believes I have some pleurisy near my upper sternum. This could be the sole cause but I will find out. I am happy my intuition was accurate. After Thursday I am sure I will be back to my old self very soon.

So I had my window fixed in my van yesterday and on my way to work today as I was driving down the highway my drivers side door just...........opens. This was so my luck that I laughed out loud. So I called the shop and they sent someone to my office to fix it, whew!

I was so tired after my adventure yesterday that I only got up once to check on Jude last night. He still has his cough but nurse Charlotte said he is up in the wheelchair today smiling and only using 2 liters of oxygen. Hopefully he will continue this trend for awhile.

Monday, April 13, 2015

Jude's weekend, my heart, and Emily's pageant

Jude had a fairly good weekend although he did present with some oxygen issues. In fact on Saturday night when I waited on the night nurse I couldn't get his oxygen to hold in the 90's even on 10 liters. After lots of CPT and a breathing treatment I got it to 92. She also had some issues throughout Saturday night but as usual Jude was still full of smiles. Jude slept yesterday until 1pm then he got up for awhile and went back to sleep at 5. He slept during my shift but then was up for the night nurse. I kept hearing his alarms go off all night and he kept choking. For some reason he has started this new trend of building mucus plugs in his throat. They are larger and harder to get out than they normally are. He actually threw up twice this weekend trying to get them up. 

So I hate not feeling well. I don't like talking about it either but I am going to since I promised to be forthcoming on this blog. I had more issues yesterday which I believe relate to the blood pressure and ultimately my heart. I had sharp pinching chest pain, shortness of breath, and a host of other issues while walking the mall with Emily. The symptoms have slowly and consistently been raising their head but yesterday was a combination of events. SO here is the thing. I am pretty well versed medically because Jude's ordeal. I think I blew this off as stress and anxiety for so long that I think I may have backed myself into a corner that will require some medical intervention. I now know without even seeing a doctor I have an issue. Call it my medical intuition and reality. I am sure it will be easily will be controllable so I am not really talking about it right now and don't want to so please don't text. This is my way of getting it out there. I have an appointment with a cardiologist on Thursday........don't text me then either please it adds stress. I will update the blog I promise. I am pretty sure it's cardiomyopathy and it will be easily controlled with medication. So why post this? Because for a parent I want others in my situation to know even though people think you are a super hero.........your body is not. Sometimes it breaks down. Think about it..........if you go years upon years with accute stress and severe lack of sleep..........what do you think will happen? Doctors tell me to reduce my stress, sleep more, and get out more and I just look at them with my head cocked sideways and my eyebrow raised. They generally laugh and say, "Yeah easier said than done I know". They know.......they get it........this is life and all you can do is handle it. It will work out and be okay and if not it was all worth it but it will. I am not worried just proactive.

Emily's pageant is this weekend. She has worked SO hard and I am very proud of her. Mike and the nurses are watching Jude so I WILL get a chance to relax. I am staying a the hotel and Emily is so busy with practice and events that I think I will lay on the bed a lot and watch movies. I am hoping this is her year and that Emily's tenacious attitude that never gives up will be rewarded, but if not she is always a winner in my eyes! I will post lots of pictures on Monday.

Friday, April 10, 2015

A day in the life of Jude shown in pictures

Over the last two weeks I have had two amazing photographers visit our home. First was one of my very best friends Sarah Miloud who owns Sarah Miloud Photography. I included a few of her pictures in this set but she has a lot of pictures pending and she will show our personal days with Jude. The other photographer was Jill from Selah photography. She came out and spent the morning with nurse Charlotte and Jude. She did an amazing job of showing Jude's daily schedule, daily struggle, and the pure love that we all feel for him including his amazing nurse. Below you will find her photo's and the slideshow will end with a preview of Sarah's. I hope this gives my readers a better understanding of my words that course through this blog. Just press play and you can make it full screen by pressing the full screen icon next to the sound bar. Thank you for watching.

Wednesday, April 8, 2015

Jude's breathing issues and the daily grind

The past few night when I have gotten home from work Jude has wanted me to hold him for extended periods of time. I enjoy holding him so this is not a huge effort on my part. However he has been very tense and whining and if I fail to pick him up in a timely fashion his whines get louder. This combined with a slight fever of 99.1 - 99.9 that keeps surfacing makes me wonder. I know that medical terms do not count those temps a fever but under Jude's dictionary it is. So last night I was holding him and I was stroking his hair and kissing his cheeks and he would smile really big. Then I would have to pause to suction him because he would begin coughing and then choking. I sat Jude up on my lap and supported his head so I could get him upright for awhile. Suddenly I felt overwhelmed with emotion and I said "Oh mommy the reason you keep fighting" and I cried. A part of me always wants Jude with me! I look forward to seeing him when I get home so I can stroke his hair and kiss his big squishy cheeks. I talk to him and tell him about my day and he babbles back. Then I wonder how selfish I am that I want him here while he suffers so much. It's such a fine line of wonder and doubt when your child is so sick. 

Overnight I heard Jude's apnea from the living room in my bedroom with my door shut. This was about 4am and I came out several times to help re position Jude to get him to stop struggling. Finally I turned him on to his right side and positioned several pillows to prop his head and side up this alleviated the apnea situation. When Charlotte got there she said it was the first time in days she had not arrived to him retracting badly. However this didn't last long. Charlotte sent me a text about 9:30..

"Jude's breath sounds are course and ronchi. His R lower lobe was very diminished. He has had his breathing treatment, a saline treatment, 10 minutes in the CPT vest, and 10 minutes of manual CPT. I am starting to hear some wheezing in the Right lower lobe. I never knew wheezing could sound so good". 

Charlotte's invaluable and probably one of the most amazing nurses I have ever met! I checked in at lunch time and she said Jude was still sleeping and that she was finally hearing some good breath sounds but that earlier it was like he wasn't even using his lungs to breathe. So what does this mean? I am not sure. If you asked me I would tell you it either means his lung capacity is further deteriorating or he is starting another infection. He literally just came off the antibiotic and steroid so I am not even sure if they would try them again. However it could just be Jude having a really bad day too. I did notice his color changed again to me and he seemed very clammy last night. So it's all a big question. At least Jude is still smiling when he can. 

 We had two separate set of pictures taken of Jude this past week. One was with the family and the other with Charlotte showing his daily routine. I plan on making a special blog regarding Jude's daily routine. I thought this would help other parents and those that read my blog relate to Jude's daily life, happiness, and struggle. I am just waiting on the pictures but I did want to share a great one my friend Sarah captured.

Monday, April 6, 2015

The weekend update

Jude's weekend went fairly well. He had some oxygen issues and a lot of congestion but his coloring is good and he is very smiley. He continues to spike a fever but soon the fever will go away. Friday night his fever had spiked so I took him out of his bed and held him with a wet wash cloth on his head. He smiled through his illness because he is such a happy boy. The fever naturally went down on it's own and he fell asleep in my arms. I held him for about two hours until shortly before the night nurse arrived. 

Mike is waiting the results of his interview and we are praying hard that he gets the position with a decent pay increase. It's been so long since I haven't had to worry about keeping the family afloat. It would be nice to have less stress and know Mike can handle everything is something should happen to my job or position. I highly doubt anything would happen but you never know. I know he will really like that too. 

Friday, April 3, 2015

Good Friday!

Jude had a fairly good day yesterday. He had a few coughing episodes and it's never easy for him when that happens. Last night my friend Sarah came to take some pictures of Jude and the family. We had a really good visit and Jude was in a great mood for her and very full of smiles. However I kept pointing out that I thought he felt warm. I must have taken his temp 10 times while she was there but the highest it got was 98.7. I also noticed his heart rate was rather high which is an indication to me a fever is brewing on the inside. I also noticed when suctioning him that some of the phlegm was greenish. 

When the night nurse got there I went to bed but I felt like I heard Jude's alarms go off all night long. I did not get much sleep or restful sleep and neither did Jude. So this morning when I was leaving for work the night nurse told me "You know how you thought he felt warm? Well his fever did spike. I put a wet cloth on his forehead and gave him some Motrin". So I walked over to tell Jude goodbye. He was in a twilight sleep and gave me the biggest smile when I kissed his cheek. I talked to him for a minute and stroked his cute hair and he continued to grin. He was a bit pale again and he was sweating which I am sure was from the fever. 

So Jude is up and down. As long as we work with his oxygen flow levels we can keep his oxygen in the 90's. His heart rate is still running fairly high to me but he is happy. One minute I think Jude is on a decline but the next he is looking more like his old self and seems pretty happy. He keeps us guessing. 

I have to work today while the rest of the family is off for the holiday. I talked Mike into taking Emily out to do errands she needed completed. He said he is about to sell me today, lol. 

Wednesday, April 1, 2015

What do I say when someone is sick? How do I help?

I wanted to write this blog today and be honest about my feelings but I want to make sure it's not offensive and my words are structured right. If they aren't make note that hurting your feelings is not my intention. I also thought it might help someone that is going through something similar who wants to explain to others how to provide the best support. I hear repeatedly "How can I help you?". When you have a major crisis people crave to make you feel better. Sometimes they aren't sure how to help or try to help and it does nothing more but add additional stress. So I thought outlining some ways people have helped me would be beneficial. These ideas are only regarding my situation and my personal emotions and in no way reflect how others may feel in a similar situation.

1. Please don't tell me you are praying for a miracle and for Jude to be healed. I believe the miracle itself is Jude's life and all he has done to help others. I am a realist and I know what the outcome will be regarding Jude's situation. God has provided Mike and I peace and has made his presence known. So we simply provide Jude the best care possible and lots of love.  Also other standard sayings can be taxing like it's God's Will or God won't give you more than you can handle. I am pretty sure I surpassed my ability to handle a long time ago despite what you see. I had a long time friend call me yesterday at the office regarding her insurance. She said "I want you to know I pray everyday Jude is not in pain". I told her what a perfect thing to say! 

2. With that being said don't worry so much about talking to me. I understand people make mistakes and are not sure what to say about the situation at hand. I know you are sorry. I wouldn't want you to understand what we are going through and I know you care very much. I understand you get flustered. Also know that my emotions are all over the place. One minute I am happy, the next annoyed, the next angry, and even the next sad. I had another friend tell me "Hey I want you to know that I understand you have a lot going on. If you are bitchy, angry, or snap at me I do not ever take it personal. Feel free to vent at me". Again..........what a perfect thing to say and just out of the blue. She gets it. 

3. Include me in your everyday conversations about your life and even gripe to me if you want to. Don't stop yourself and worry about what you are saying. I hear "Oh my word I don't know why I am even complaining". Although I am very happy you found a new appreciation for your circumstance due to Jude I don't want you to worry about including me in your life. We all have struggles and everyone's struggles and situations are important not just mine. 

4. Please take the time to understand just how serious Jude's situation is. Taking Jude anywhere is a task. He requires oxygen, suctioning, and so much more. Also I don't have a nurse from 5-10pm.  

5. As much as I know you love your oils, drinks, and other products........hearing they might help Jude doesn't help me. It's not that I am not open to using them but more than likely I have already tried. Also, again.......his situation is extremely serious. If Jude were in the hospital he would most likely be in ICU but as the doctor said "we cannot live in ICU". Although know I am grateful for the offers.

6. I am glad therapy helped your child I truly am and I am so happy they will be with us for a long time. Unfortunately, my child had a stroke and to put him in a chair and force him to hold his head up would result in his death. He has zero tone in the mid section and zero neck control. He has been evaluated many times regarding this situation. 

7. Food for our family helps SO much. After working all day and caring from him from 5-10 I have little time. Just please understand my brain is mush and I will and DO forget to give dishes back. If you don't drop food in a plastic container then just come to my door, barge in, and take it!! I will NOT be offended :). You can even call me a few bad names for forgetting to return your dish. 

8. If you do drop off food, gift certificates, or have friends help you do this then know I am so very thankful. I was raised in the South and believe in thank you's or thank you notes however as thankful as I am I am also forgetful and overwhelmed. Texting me asking me if I have thanked someone adds stress on my plate and makes me feel terrible. However please know I have it on my list and I promise I will do so and until that time know I love and appreciate you more than words can express. 

9. Talk to me about Jude. I want to talk to him! I want to tell you what's going on and I want to hear how he has touched your life. It's a blessing to me. 

10. Come see me! It's hard for us special needs moms of seriously ill children to get out. When we do get out it's generally with our family completing errands or spending time together. Don't worry about specific plans. Just shoot me a text around 5 and say "Hey I know you are it ok I swing by?". It would make my day. I want you to see Jude! I want you to understand. If seeing him so sick is hard on you then I understand but if you want to come by........come on. An invitation is not needed and honestly I get so busy I forget to invite people. 

11. I get so many texts saying people feel "useless" I get it. I feel useless sometimes too in this situation so don't beat yourself up. No one knows what to do when a baby is so sick. So don't feel bad. If you want just swing by. Nurse Charlotte let's people in to see Jude pretty regular and we are there in the evening (The amazing Charlotte.......she needs an award I tell you)! So don't feel useless. This is not regarding us but for helping others that may be in a similar situation. The biggest help for me personally has been help with everyday chores. An amazing friend hired someone to clean our house. My best friend comes over and just starts unloading my dishwasher without asking permission. She also helps put stuff up, cooks, and helps with Jude the best she can. Those types of things really helped and I bet they would help others too. 

12. Telling me you aren't sure what you will do when Jude passes or that you aren't sure if you can come to a service doesn't help me. This is one comment I almost didn't list because it's so personal but I have heard it from more than one person. I have no idea what I will do when and if I lose my son but I know that if I can end up handling it as his mother then you can. 

13. I don't know about others in my situation but having people recognize what's important to me really means a lot. It gives us distraction and something to work towards. The stroke walk is a reflection of Jude's life that Emily put together. Having people brush it off hurts. We make a full day out of the event so just showing up to say Jude matters means a lot! Also, asking about Emily's pageant that she is working so hard on makes our day! A co-worker asked today if she can attend and it literally made my entire morning!!! So if you are worried about what to say just bring up life in general, Emily, Jude, our garden, or with Mike anything football (ha). 

14. Sometimes just having someone sit next to me and be there without any words is awesome too. 

15. Know that I love hearing about your children. Of course it hurts knowing Jude cannot run and play or participate in holidays, but that doesn't mean I don't love your pictures or conversations. 

16. Keep things positive! Please don't judge me just listen.........just listen without judgement. I have irrational fears especially about Emily so don't judge.

17. Be patient with me. 

18. Don't be offended if I don't call you when something serious happens. Sometimes my mind is so consumed in worry that I call the first person that comes to mind. I then leave it to them to spread the word. 

19. Understand this has taken a physical and emotional toll on me. I am not the same person I was prior to Jude's amazing birth and his amazing fight. I wouldn't want to be the same person I was before because I have grown so much as an individual. 

20. Be thankful! I like to hear that you are thankful for your healthy children and normal life. I like to hear that because of Jude you have learned to love, heal, have compassion, and be amazed by your children. It makes me happy. 

That's about it. I hope this helps and I hope there is no part of it that is offensive. I thought I should speak out because I have a lot of people around me that get confused and worried. Just know that just having your support is plenty!