These are more CaringBridge and Guestbook posts after Adam and Megan went out with friends and played with their baby who they thought had a cold.
Tuesday, September 27, 2011 10:17 PM, PDT
Joshua is sick. Last week, Megan & Adam went out with some of their friends from church & those people brought their toddler who had a cold along. Adam spent hours playing with the little boy (he always does) & when he walked in the door that evening, both he & Megan immediately came over and hugged their baby brother.
Had I known that N (the church couple’s son) was sick, I would have told Megan & Adam not to go out that night. Had they come in the door & mentioned that N had a cold, I would have instructed them to go take showers & change their clothes before touching Joshua. As things happened, though, I didn’t know N was sick until the next day when I was reading Megan’s Facebook wall & saw a message from N’s mom telling Megs & Adam to safeguard their siblings because N was a lot more sick & they now thought he had croup. Lovely.
After reading N’s mom’s update, I called Megan & Adam together and asked WHY they spent the evening playing with a sick child & then came in the door & immediately began hugging & kissing their baby brother ~ does the fact that he’s terminally ill & extremely medically fragile not mean anything? Megan & Adam both said they hadn’t even thought about it. They felt horrible, which was not my intention, but I don’t regret being completely blunt with them. The cold, hard fact is that they DO need to think about these things. Maybe that’s not fair, but it’s reality.
My next thought was how could N’s parents THINK to invite Megan & Adam out when they knew their child was sick and they know about Joshua? Especially since N’s mom is a nurse! It’s not like she’s unaware of germ transmission and what a piddly cold could do to a child in Joshua’s condition!
I’m angry because, sure enough, Joshua is now sick. Adam has a cold, too, so I am fairly certain it’s whatever bug N had. Joshua’s good streak appears to have ended, though I am hoping that once he’s over this bug, he’ll rebound again & we’ll still have more of the “good streak” we’ve been experiencing. I am so frustrated that he got sick from something that could have been avoided. I’m unhappy that N’s mom didn’t think about the risk involved in exposing Megan & Adam to her kid’s virus while knowing that they’d be going home to both Joshua and Bethany, who is still immune-suppressed due to the chemo medication she receives to control her autoimmune disease, and the rest of the kids. And writing on Facebook to ‘safeguard the siblings’? What does THAT mean? It’s a little late after they came walking in the door with the bug! Wouldn’t it have been better to say, “Gee, my kid is sick… guess we should stay home tonight,” or “Gee, my kid is sick… let’s not invite Megan & Adam to come since it would be really bad for Joshua to get the same bug that N has.” ??? Yeah, I realize that kids get sick & that’s just life, but when you have a child who could die from getting a common cold, it becomes really flipping important to protect him from everything if at all possible. To have friends from church not think about it at all and then to have my young adults not think about it at all REALLY upsets me. It makes me angry knowing we could lose Joshua because of something that should have been prevented completely, and even if he weathers this illness all right, he’s still losing days of feeling good. Think of it this way ~ if you knew your child had 30 days to live, how upset would you be if 5 of those days were spent battling a cold virus that could have easily been prevented? I’m not saying Joshua has just 30 days to live (I pray it’s a lot more than that), but I’m trying to make a point. He’s already dying. He didn’t need an illness to make the good days even fewer.
Here are the comments, in their entirety, and in order.
- Wednesday, September 28, 2011 1:47 AM
Yeah, it’s very upsetting that this happened… N yes, I would be angry as all get-up too! But maybe, just maybe, part of why Joshua has been doing so well is because God, in His infinite wisdom, knew this day was coming and Joshua needed to be stronger than he had been? Maybe, just maybe, God saw fit to strengthen Joshua so that he would be able to fight this cold/virus in a more “normal” manner?
No, even that would not make it easier to swallow that anyone would knowingly put their sick child near your children knowing that the chances of Joshua getting sick would be extremely high – but then, they aren’t living in your shoes and thinking! Thinking of the precious moments that are fleeting faster than you care to have to realize they really are… They know but it’s not the same.
We will be praying that both Joshua and Adam are quickly over this! God is good and we have faith that He will restore Joshua to this same kiddo that has had so much strength lately! Hang in there! (yeah, I know– easy for me to say…)
Lots of love to all of you!
Sent from CaringBridge iPhone app
- Wednesday, September 28, 2011 1:58 AM
I’m so sorry, Kate! That would be very frustrating…praying Joshua bounces back quickly…
- Wednesday, September 28, 2011 2:44 AM
I’m so sorry that Joshua is sick, and also that it could have been prevented. I understand your frustration with those who SHOULD know better. I guess it takes a mother’s heart to remember the fragility of these children. I am praying that Joshua’s better days return for you. Three years of watching for signs of deterioration in Kawana take their toll, as I am sure that seeing Joshua in his weakened state does. However, like you, we rejoice in the good days, and hold our breath for the bad days, praying just that there will be more DAYS together. God bless.
- Wednesday, September 28, 2011 4:02 AM
Oh no. I hope everyone is better soon, my hopes and wishes are with you.
- Wednesday, September 28, 2011 5:03 AM
Totally understand. (((hugs))) I guess they let their guard down, but your’s is still on all the time. Joshua is blessed to have you as his mom, his best defender and guardian. May he get over this and back to his healthy streak pretty soon! in the name of Jesus, amen.
- Wednesday, September 28, 2011 5:22 AM
I’m so sorry! I pray for GOD’s grace in the situation.
- Wednesday, September 28, 2011 8:21 AM
I have been thrilled and amazed at how well Joshua has been doing, and so happy for you all!
I understand how upset you must be about his exposure to a bad cold and I wish it hadn’t happened. I’ll pray that he fights it off easily and quickly.
Try not to be too hard on Adam and Megan. They already have their guilt to live with.
- Wednesday, September 28, 2011 8:47 AM
Today is September 28th. It would have been my son’s 3rd birthday today had he lived. All I can say is that you are in our prayers, and that Joshua gets over this illness quickly without giving it to Bethany. You are such an inspiration. Your faith and honesty is awe inspiring.
- Wednesday, September 28, 2011 8:56 AM
Ugh. I would be steamed. My daughter had a heart transplant and is on immuno-suppressants for life. Yet for some reason people think she’s “fixed” and can just come around her if they have any sickness. Not so.
Keep on keepin on, mama. You have every right to be upset. I pray that Joshua’s good streak bounces right back after he beats this cold (and soon!). I pray for your family all the time, even though we have never met.
- Wednesday, September 28, 2011 9:41 AM
So sorry-God bless and a quick recovery.
- Wednesday, September 28, 2011 10:59 AM
I hope Joshua feels better soon. I will pray that he kicks this bug and has many great days ahead. I understand why you are upset. This would make me angry as well–especially at the unthinking nurse mom.
…I hesitate to mention this, for obvious reasons, but, well… when and how Joshua is going to die has already been ordained. If Joshua were to die from this, then that would be God’s choice and this sounds like an honest, careless mistake from all involved. I’m sure they all feel really guilty and terrible (especially Megan and Adam) and …IF Joshua were to die from this that is something they will carry for the rest of their lives. Guilt forever over a mistake. Over playing with a sick child and carelessly bringing the bug home with them.
That is such a heavy burden to carry for the rest of their lives. …Maybe you could lighten it for them? Just a thought…
We will definitely keep praying for Joshua and the whole family.
- Wednesday, September 28, 2011 11:48 AM
I pray that he will recover quickly!
- Wednesday, September 28, 2011 11:55 AM
I am so sorry Kate. I would be beyond frustrated. You are all in our thoughts and prayers.
- Wednesday, September 28, 2011 1:11 PM
How very frustrating…just when Joshua was doing so well. But as others have noted, perhaps the strength he’s gained recently will help him shake off this bug quickly.
Sending prayers and best wishes for a quick recovery from the bug, and many more good days to follow.
- Wednesday, September 28, 2011 3:00 PM
Hang in there, Kate. Peace today.
S from RR
- Wednesday, September 28, 2011 4:38 PM
Wow…. I wish I knew what to say. I don’t blame you at all for that rant! I sure hope that next time that mother will think about things…… Hoping for many more days with Joshua AND that this illness won’t last long!
I think I should clarify that I am not angry with Megan or Adam. Yes, I WAS frustrated with them and I discussed the situation with them. I also explained that I don’t want them to EVER have to feel guilty over anything that they’ve done in conjunction with their brother and THAT is why they need to think before they do things. I don’t want the devil to be able to throw ANYTHING in their faces for the rest of their lives… especially nothing that would make them believe they contributed to the death of their brother.
I wrote what I did in my post because I knew that if I expressed frustration at the parents with the sick kid, I’d have SOMEONE say, “Well, what about Megan & Adam? They brought the bug home!” I’m well aware there were multiple players in this… and I’m not a parent who blames others while thinking their children are perfect. I’m not bashing Megan and Adam because of their mistake, but yes, I wanted to make sure they understood how their actions affected someone else, namely, their brother. The best way to prevent a repeated bad choice is to address it & make sure the child understands the consequences for that choice. I am fully confident that my oldest kids will not repeat their mistake. That doesn’t mean I’m being mean to them or making them feel guilty; I’m not, and I wouldn’t. I don’t parent that way.
- Wednesday, September 28, 2011 5:21 PM
I’m sorry about the virus.
- Wednesday, September 28, 2011 6:14 PM
I understand how frustrating this is, we ended up posting a note on our front door after a nurse came coughing and sneezing to shower my son and she got upset when asked to leave…
Joshua is doing so well I hope this virus clears up quickly, you are an amazing mum……..
keeping Joshua, you and all your family in our prayers xxx
- Wednesday, September 28, 2011 8:07 PM
So MAYBE the nurse mom wasnt aware that N was sick. Symptoms come after the person becomes exposed you know. The mom probably didnt know N was sick, but when she found out, she tried to protect your family by letting you know. That is what “safeguard your siblings” means. The only way to protect your sick child is to keep him completely isolated from the world. So stop blaming the nurse mom for everything. She invited your kids to hang out, and didnt have the intention of making your child sick. Im sure she feels bad about what happened, you said yourself “it was not my intention to make my children feel bad about what happened”, so its your intention to make the nurse mom feel terrible by posting this?
- Wednesday, September 28, 2011 9:20 PM
M B ~
The mother DID know N was sick. She thought he just had a cold, and because it’s not usually a big deal to take a kid with a cold someplace, she did. I do understand that. But what you don’t seem to understand is that a common illness that a healthy child can fight off without a problem could kill my son, so yeah, I’m going to be upset when something happens to needlessly expose him to viruses. And to answer your question, no, my intention in writing what I did wasn’t to make anyone feel badly. My intention was to blog about MY feelings regarding MY dying child getting sick from a few stupid decisions on the part of several people and to express MY frustration that it happened at all. If N’s mother reads here, I don’t know about it, so no, my post wasn’t a passive-aggressive smackdown aimed at her. If she does read here, then I would hope she could put herself in my shoes for a moment & imagine how she would feel if the roles had been reversed & I hope she would understand that it’s the situation that upset me, and the fact that some of Joshua’s good days have been taken away by him having gotten sick.
I’m allowed to feel how I do & I’m allowed to express my thoughts & feelings on my child’s caringbridge page, even when those thoughts and/or feelings aren’t happy ones. This is a journal, FOR ME, of Joshua’s life from a medical perspective. If you come here & don’t like what you’re reading, then please avail yourself of the red X in the upper right-hand corner of your screen & close the page. Thanks.
- Wednesday, September 28, 2011 9:51 PM
I’m so sorry that Joshua is sick. I hope he kicks it out the door quickly! I’m feeling bad for the guilt Megan and Adam must be feeling…you said they were out “last week.” I, of course, can’t know when that was, but Joshua was in a doctor’s office on Thurs and Friday and Wal-mart. I’m sure it was a wake up call that hands need to be washed when you come in from the outside, but it seems like you can’t directly pinpoint who he caught it from or when. I’m glad everyone will be more careful from here on out, though.
Many prayers for a happy Joshua. I’m glad he’s been doing so well!
- Wednesday, September 28, 2011 10:21 PM
Joshua came into the doctor’s office through an entrance no one else uses. He was ushered through that door into a hallway that is not used during the day and he was put in a room that, again, isn’t used during the day. Adam & I did not touch ANYTHING outside of the room & Joshua certainly didn’t since he was in his wheelchair. So no, he didn’t catch anything from the doctor’s office. And at Wal*Mart, he didn’t touch anything & we were not in the vicinity of anyone with a snotty nose or a cough.
Adam showed signs of the cold first, which isn’t a surprise since he was the one holding, cuddling & playing with N. Joshua was next. It has spread & now Megan, David & Bethany have the same cold. What amounts to one week of illness for a family with 1-2 kids becomes a month or more of illness for a family with 9 kids. For a family with 2 medically-fragile kids, that can be devastating.
I feel confident that we know exactly where this illness came from. But even IF Joshua got sick from some other source, I’d still be upset because his being ill affects his quality of life & with his lifespan already being shortened, the last thing I want is to reduce the quality of the time he has left.
Megan & Adam aren’t feeling guilty. We had a 5-minute discussion about making good choices because the health of their siblings demands it & that was the end of it. They’re adults & can handle hearing that they screwed up without it damaging them & causing them to feel guilty forever.
- Wednesday, September 28, 2011 11:52 PM
Hi all. This is Megan, Joshua’s sister.
I would like to give a message to K M, M B, J L and P K.
You ladies all made mention of the guilt Adam and I would be feeling, how my mom shouldn’t beat us up about it or make our burden harder. Ummm….yeah. Not a problem. I can tell you right now that I don’t feel incredibly guilty about what happened to Joshua. It was a mistake, a STUPID mistake on my part and I have no problems with the way my mom chastised me and my brother (and I happen to know that he isn’t bothered by it either).
My mother has not been browbeating me with this, nor has she MADE me feel guilty. If I felt guilty it was because *I* made a poor choice and regretted it. That doesn’t mean I would feel guilty for life, either, no matter what happens to Joshua. If I felt guilty it’s not because my mother instilled the feeling in me. It doesn’t work that way.
Many people have said that they think I am an amazing daughter and that my mom is so blessed and is doing a great job raising me and my siblings, blah, blah, blah. Well, how do you think I became that way? Magic? No, it’s because my mother has, throughout my whole life, taught me that I need to think of others before myself, I need to be aware of how my actions affect others and accept the consequences of my decisions.
I am GLAD my mom talked to me and my brother about our poor decision. Geez, how else am I supposed to learn to make wise decisions? I would rather my mother give me a five minute lecture that opens my eyes to what I did wrong than make the same mistake again and have it affect someone else like it has affected Joshua!
Get off my mom’s back. I realize that this statement is not polite, but come on people. Either my mother is a fantastic person, a great parent and she is raising us right or she is being too hard on us and she should ease up. Which is it? You can’t have it both ways.
And to M B especially, I was there when the nurse mother TOLD my brother and me that N was sick. She knew and she chose to a make a poor decision in bringing him to a restaurant. Just like my brother and I did. And you know what? We DO keep Joshua isolated from the world! He rarely leaves the house anymore except to go to the doctor’s and my mom has already explained how that is done. My mom is not an idiot and I don’t appreciate you implying that she is. Do you even READ my mom’s words or do you just not understand them?
And my mom is not blamimg the nurse mother entirely! Good grief, she wrote that Adam and I were just as much to blame as N’s mother! Yes, the nurse mother feels bad and has already apologized. We are not angry at her and my mother did not write this post to make her feel bad. She wrote this to VENT. I am sure it is something you’ve done in your life, too. If not, then congratulations, you’re the first person I’ve met that hasn’t!
Please remember this blog is dedicated to chronicling the life of my dying brother and as such there will be good posts and bad. There will be emotional outbursts. If you want to leave feedback, you need to keep your comments positive and supportive. That is just the nature of this kind of blog (a medical one). Ask yourself; is this comment going to be helpful to the family? Is this going to make them feel like crap or is it going to boost them up? If it’s not going to be helpful or it is going to make them feel bad, then evaluate why you feel the need to say anything at all.
Oh, and one last thing. Sandwiching negative comments between wishing Joshua luck or prayers or saying you are glad he’s doing okay is not fooling anyone. Either wish him luck/prayers and leave it at that or just leave.
- Thursday, September 29, 2011 12:24 AM
STOP!!!!! This has gone nuts! Wow! I can’t believe the comments about people being so worried and concerned about Megan and Adam feeling guilty. Guilty? Say’s who? They do?! Since when? I don’t think so. There are lessons to be learned and one of them is how to politely and firmly walk away from people who’ve invited you out who knowingly have sick kids and are exposing you even if it’s in their ignorance. Yes, ignorance. I get the feeling that most of you who’ve commented so negatively do not live with anyone who is terminally or chronically ill, or has much risk of hospitalization or death from those otherwise “normal”, “mild”, “going around” viruses! Had you a child with cancer, duchenne, brain stem dysfunction, leukemia, or a myriad of other conditions/illnesses then you’d realize that the sniffles all those cute kids are getting and sharing with everyone they meet can, in fact, can be very life threatening!!!!!!! As a mom of a terminally ill son I so get what Kate said. My 20 year old has duchenne and he cannot cough like most kids, cannot fight off a cold like most kids could. A simple cold COULD KILL him! That means in the winter, this week as a matter of fact, his older sisters, his neices and nephews, who all got “that cold going around” could not, and DID NOT visit like usual. Yeah, not a big deal really for the grandkids of mine but it would be a big deal for their uncle. So, unless you have helpful information, don’t go jumping down the throat of a mother who is not being paranoid or ridiculous to expect people who realize she has 2 chronically ill and fragile children at home to stay away from the entire family until they are better. That is perfectly reasonable. And yes, I’d be upset too when someone who knows my son is at risk doesn’t think and exposes us.
- Thursday, September 29, 2011 4:45 AM
Hello, my name is Adam, Joshua’s big brother.
I would like to give a message to K M, M B, J L and P K.
Each of you ladies came onto my mom’s medical blog & took the liberty to make an assumption on whether or not my mother should have chastised my sister and myself. Did she make us feel guilty? No. God forbid! She did however enlighten us to how our decisions affected not only ourselves, but those around us ~ specifically naming our medically fragile brother, Joshua.
Was my mom guilt tripping myself & my sister? No! She was doing anything BUT guilt tripping us. Was she holding us to the consequences of our actions, and pointing out the obvious? Which was simply that our brother is medically fragile (as I mentioned above) and even something as simple as a common cold could cause him to die? Yes, she was doing that and much, much, more.
And you know what? I appreciate it that my mother would come to me personally and rebuke me for my ignorance & lack of care for those around me. When I came home after handling a sick child & immediately went & hugged my brother, I showed a lack of care and concern for his health. I said, by my actions, that I didn’t care what happened to him. Did I do this with an intentional attitude, to get him sick & to cause him to have bad days? Of course not! But that still leaves no excuse for me to NOT be rebuked (and I know my sister Megan would agree with me).
I love my mother, very much. And you know what? I wouldn’t want to her NOT rebuke me. I want to continue to understand that my decisions affect more than just myself in this world. That is, after all, how the real world works, is it not? Decisions which seem innocent enough affect more than just you – am I correct?
J, regarding your comment, I can safely say that my mom & I know for certain that Joshua did NOT pick up any bug at the doctor’s office. We are always taken straight from the entrance into a BACK room where NO patient ever enters. Dr. S, Joshua’s pediatrician, knows Joshua’s fragility & would NEVER compromise his health at any time – including his rare visits. So please, don’t come to my brother’s medical blog and try and explain how he got sick when you clearly don’t even understand how our visits/going outs work.
M, first of all, my mom did not write this to flame N’s mom. Nor did she even write this as a way to bash any party involved. She was venting. Have you never done that? If so, you are a saint among sinners. Secondly, I can confirm right now that N’s mom DID know he was sick because that was the first thing she said to me and my sister as she sat down in the booth holding her sleeping son within her arms. N’s parents knew he was sick, and everyone made poor decisions that led to this road which we are currently traveling down. Megan & I could have spoken up and left; we could have excused ourselves & rescheduled for another time. N’s parents could have even avoided calling us & inviting us out to begin with. Both parties, not just one, were in the wrong, period. Next time, we will make different decisions based on the results of this outcome. But please, if you have no encouraging words to say and are just coming to complain & flame my mom, help yourself to that little orange ‘x’ at the top right corner of your screen & take your trolling somewhere else. This is neither the place nor the proper family to attack & try and toy with. Thank you.
K, K, please don’t make assumptions about how Megan & I would feel if Joshua were to die from this cold (he’s not going to, mind you). How on earth would you know that we would live with guilt forever? You wouldn’t. When you were friends with my mom, you were up-to-date on what was going on with Megan and myself, but that was years ago & you don’t know us anymore,
To everyone else who reads this and thinks I’m just a jerk teen with no morals or self-restraint, know that you couldn’t be more wrong. I do have self-restraint & I have great morals. I just refuse to sit back & allow my mom to be bashed by a third-party who doesn’t have (nor will ever have) every single detail on my brother’s life. You say I’m a jerk? I say you’re a snob & need to take a step back and understand that you know NOTHING of what is going on in my family’s house. You don’t know how my brother struggles to just WAKE up in the morning. You don’t fully comprehend how he can’t travel to the park, swing on the tire swing, slide down our local park slides, or even walk up stairs anymore… You look at your 5 year old and say to yourself, ‘surely it isn’t THAT bad…’ But I’ll tell you now, it’s worse! So please, save your trolling, spamming, and arrogant comments for some other Caringbridge or website that will listen.
To all of you who have given support, prayers, & love, I say thank you from the bottom of my heart. You are truly fulfilling the Lord’s command in Romans to, ‘Weep with those who weep.’ You are a blessing, a gift, & a treasure from our Lord. Thank you.
- Thursday, September 29, 2011 8:51 AM
Oh goodness. Kate, I’m sorry to see that your post has led to even more stress for your family.
For what it’s worth, I think you have every right to be upset and to vent on your blog. I also think you handled the situation very appropriately. Certainly, you couldn’t just ignore it! Of course you need to discuss such a serious situation!
Clearly, Megan and Adam (and the little boy’s parents) made a mistake. And from reading their comments, it’s clear that Megan and Adam take responsibility for their actions and they both learned from this mistake — that’s a good thing!
It’s unfortunate that this occurred in the first place. But we can’t turn back time. You can only learn from your mistakes, move forward as a better, wiser person. It sounds like that’s exactly what you’re all doing.
I’m so sorry to hear that Joshua and your other family members are now sick. I hope everyone recovers quickly, especially Joshua and Bethany.
How is Joshua doing now? Is he over the worst of it, I hope? I pray his illness turns out to be mild and brief. Praying for a speedy recovery and many, many, many more good days for Joshua and the entire Parker family.
- Thursday, September 29, 2011 9:25 AM
I will be availing myself of the red x in the corner sadly. I have never seen such vitriol and hatred spewed towards people who support you. For a family who claims to be Christian and have Christian values, you three sure have a funny way of showing it. Instead of taking comments that voiced concern and taking them with the spirit they were intended, you assume they bash and attack. There really should be a disclaimer at the top of the site that says agree with me or prepare to be attacked.
I thought the post you made at 3:49 was great and clarified exactly what you meant in your original post. I sure wish you could have left it at that rather than be so hateful. I guess for me it showed your true colors. While I will not be withdrawing my prayers from Joshua, he is an innocent, I can no longer support a family that can so quickly turn on people who have donated their hard earned dollars to help you.
I am sure my comment will either be deleted or be met with more hateful words.
And Megan, you were entirely wrong. I absolutely can pray for complete healing for Joshua while not thinking much of the rest of the family. I hope that in addition to healing Joshua, God also is able to heal the blackness in your hearts so that you may come to see supportive comments for what they are, and not spew such hatred.
- Thursday, September 29, 2011 9:48 AM
I think it’s very cruel to “call out” people with good intentions. Are these people not the very same people who pray for Joshua? Who donated money so that Charley could stay home a few weeks with his son? It’s very irritating that now that you’re done collecting money that you show your true self. And it’s very naive and close minded of you and your “adult” children to assume that you know exactly where Joshua’s “bug” came from. A doctor’s office is a breeding ground for germs…private entrance or not. Do you think that “entrance” was built specifically for Joshua? I think not. And walmart…really, just because he didn’t TOUCH anything doesn’t mean he didn’t come in contact with germs. As a matter of fact, my son is immunosupresssed. His immune system never rebounded after years of high does corticosteroid treatment. When he was on said corticosteroids, the one place his doctor suggest we avoid at all cost? Wal-Mart. This whole situation is very similar to a certain Minnesota Mommy Blogger who solicited money from her “fans” and then blocked/banned/attacked anyone who dared to disagree with or question her. Food for thought.
- Thursday, September 29, 2011 9:56 AM
Kate, I’m mad with you, and I’m so sad for Joshua having to deal with something that should not have happened. I hope and pray that it passes quickly, with minimal effects, and that you have many, many more good days ahead with your precious Joshua. Know of my frequent prayers for all of you.
- Thursday, September 29, 2011 11:58 AM
Geez, people. I think it’s slightly insane (at best) not to give a mother of a sick and dying child a little space to vent. Agree or disagree, try to walk a mile in her shoes. If my child were dying, I don’t know how I’d react to day to day stuff.
****As for the money, if I recall, that was arranged by a friend of the family, at the friend’s initiation. Please. If you care about Joshua, you know that’s about his well-being, to have family around and some fun as well.****
They (Joshua’s family) shouldn’t need to put their energy toward this, right?
As I keep saying, hang in there, Kate. Prayers continue.
- Thursday, September 29, 2011 12:05 PM
Megan and Adam,
I feel the need to respond since you mentioned me in your post. I’m sorry you assume that my prayers for Joshua and your family are not genuine and are “sandwiched” on either side of comments that attack your family. This is not the case. You don’t know my heart and I’m sorry to have assumed to know yours. I would have been hurt by the public post, but I’m glad you weren’t.
I donated towards the adoptions of Bethany and Hannah and also towards your dad being able to be home with Joshua for a few months. I will continue to say prayers for Joshua, but privately.
Thursday, September 29, 2011 1:45 PM
- Good morning Kate. I hope today is a better day for all of you. I’m so sorry Bethany is not handeling the bug well and do hope you can stay out of club med. 😦 I hope anyone else reading this particular entry, where you have every right to vent and share your feelings on your page regarding your situation at this moment, will think before posting any thing else that may be more upsetting than it is helpful to you and your family. I’ve got your back dear lady. I am praying the vitrol that happened will simply STOP today. Please, as a friend of Kate, do NOT post any more about how upset YOU might be or how YOUR posts were not read with the right understanding, etc. Just STOP. It’s really easy. JUST SAY NO! No one has to read her caring bridge nor post. Honestly, it’s not a requirement to life. Move on please. Everyone has opinions and sometimes it’s wiser to keep yours to yourself. Thanks.
- A V
- 3. Thursday, September 29, 2011 2:12 PM
- Before any assumptions are made, I’d like to notify the guestbook visitors, and those who’s posts are no longer visible, that I am one of the friends of Kate who has access to her guestbook and I am deleting and will continue to monitor and delete comments I feel do not need to be here. Posts I feel that are going to be upsetting and negative to Kate or her family and that she does not need to read during this tough time in her life, will be deleted. This needs to be a safe place for Kate to share her feelings.
- Thankfully most people are very kind, helpful, and caring and I thank you for supporting this wonderful family with your prayers and words of encouragement.
- A V
- 7. · Thursday, September 29, 2011 3:39 PM
- FYI This is Kate’s blog spot, and her families. I do not, nor will ever delete any posts she or her family make, nor do I modify posts of anyone. Let’s make that clear. Thank you.
- Please have a blessed day and let us work together to make this comment section a place of healing and help for the Parker family and those who read along.
- A V
- · Thursday, September 29, 2011 3:59 PM
- I made an executive decision & deleted all comments that weren’t 100% supportive & all responses by myself & my kids. I get it. Some of you didn’t like my journal entry on the 28th. Fine. Let it go & move on. I’m nor going to let the guestbook section become a debate forum.
A, thanks for “policing” this section & protecting my heart from the nastiness that occurred last night & this morning. It’s bad enough knowing people were negative… I am thankful I didn’t have to read the actual words. Love you!
- Kate Parker
Thursday, September 29, 2011 3:15 PM, PDT
The fallout from my last journal entry is insane. I’ve read & re-read what I wrote and what I see is me venting about my kid getting sick from a stupid mistake. That’s it! People vent on Facebook or their personal blogs about their kids getting sick & they don’t get flamed for it, so what’s the deal here? That’s a rhetorical question, by the way. I don’t need or want it answered. Bottom line is that this is my journal, a place where I can write what’s going on with Joshua & how I feel about it, and in being open & honest about my feelings, I may occasionally step on some toes since people naturally bring their own emotions & experiences to a situation & sometimes I may say things that poke a nerve for them. I understand that; however, this is not the forum for a spirited debate. This is a journal chronicling the events of a sick child, not a family blog where anything posted is open for criticism. I share what is happening with Joshua and my feelings about those happenings. I’m not open to debating the validity of my feelings, which is why I have a few friends who keep an eye on the guestbook comments and delete those that strike them as being offensive, hurtful, rude or mean-spirited.
For years, I kept my postings here straightforward & matter-of-fact. I would detail what was going on, but I did not include how I felt about it. I did not open up publicly because I don’t have a thick skin & I didn’t want to be criticized. A few months ago, I got to the point where I didn’t have the energy to continue writing two posts ~ a matter-of-fact public one that I’d post here & a real, “this is how I’m dealing” one that I’d post on my private family blog ~ so I prayed about it and decided to put most of it here. You see, the reason I have this caringbridge page is not primarily to keep friends and/or family updated about Joshua ~ Facebook, email & phone calls are just as effective at accomplishing that goal & Facebook, especially, is quicker. The reason I have this journal is so that I have all of Joshua’s medical “stuff” in one place. When I need to remember something, I can look here rather than trying to sift through hundreds of posts on my private blog or on Facebook. I didn’t think I needed to really get into how I was feeling about things since I knew that wouldn’t be the information I was looking for when I scanned back through old posts. But then I was told that there was nothing more that could be done for Joshua & he was going to die. Suddenly, this journal became more important to me because it’s the record of what Joshua went through. Suddenly, it made sense to me to begin writing down my emotions & thoughts here as I made my way down this new path versus only on my private blog. I still worried that I’d get flamed for saying the wrong thing or for saying something in a way that would upset others & I expressed that concern to my friends. They assured me that people wouldn’t do that… that people understood on a blog like this one that a mother is going to be emotional & that I was allowed to write whatever I needed to write. I knew differently because I’d followed several blogs of chronically-ill kids & I’d seen those mothers get skewered at times after writing out their feelings about some event (oftentimes a stupid mistake that resulted in their child suffering), so I took a tip from one of those mothers & asked a few trusted friends if they’d keep an eye on the comments for me. Thankfully, God has surrounded me with an “inner circle” of friends who love me & want to protect me as much as possible from negativity that might arise as a result of a journal entry, and that has given me the security I need to write freely, which has, in turn, helped me to process my emotions & make decisions & keep functioning.
I thank God that I was encouraged to open up publicly about my feelings as they pertain to Joshua & his condition because I have been incredibly blessed in doing so. I have been so grateful to have the support of so many people as things with Joshua have roller-coastered up & down these past few months. The uplifting comments & prayers have helped SO MUCH ~~ I think, for me, it’s just knowing that even though people may not understand exactly what I’m going through, they DO care, & I’m not alone as I walk this road, & that makes the difference. I sincerely appreciate all of you who unconditionally extend me grace during this season of my life & validate my emotions even when you may not understand them from personal experience. Thank you to everyone who understands that a vent is just a vent… it’s just me letting off steam in the confines of a safe environment where I can do that. I am grateful for the cocoon of caring support that I have been enveloped in as so many of you have taken time to write words of encouragement to me. Thank you for that!
SO……… moving on………..
Joshua has gotten increasingly congested over the past couple of days. He’s had to work more at breathing, which tires him out, so he’s sleeping more, but since sleep is restorative when you’re sick, I’m hoping that will translate into Joshua getting over this bug soon. Interestingly, his speech has taken a major nose-dive in conjunction with him getting sick. He’s stuttering again & understanding what he’s saying has gotten very difficult.
I’m very tired. In addition to Joshua being sick, 6 of my other kids are affected, so there’s a lot of sniffling, headache-y, not-feeling-good little people in my house, which increases the need of everyone for their Mom. Unfortunately, Bethany has also been hit hard by this virus and is showing signs that she is entering a flare (she has systemic Juvenile Rheumatoid Arthritis), which concerns me because if her arthritis flares, she gets put on high-dose steroids to suppress the flare and then we spend a few months slowly weaning her off of the steroids while praying her disease stays suppressed. Bethany is in need of open-heart surgery & her cardiologist requires her to be off of steroids for at least 2 months prior to surgery to prevent dangerous complications. If this cold virus triggers an arthritis flare that requires steroids to bring under control, it will set back Bethany’s heart surgery by a minimum of 4 months, which creates more concern since her heart condition will continue to worsen until she has the surgery to repair it (she was born with a complete AV canal, had 2 surgeries in Ukraine, & now needs another one to further repair her heart & hopefully reverse the moderate pulmonary hypertension she has).
When Joshua’s awake, he’s been in a fairly good mood for the most part. He’s like any kid who doesn’t feel good ~ more whiny, more cranky & more needy, but he’s also more cuddly & lovey, which is sweet. It’s a challenge balancing his needs with the needs of everyone else in the family on a good day, and now it’s even moreso. We’ve been blessed with the gift of really good vitamins (Shaklee) from a friend, so everyone is taking extra supplements & hopefully we’ll all feel better soon.
To add to the craziness, we’re moving in two weeks. We rent, and when a 6-bedroom, 3-bath house that is just minutes from Charley’s work was listed, we prayed about moving & felt the answer was, “Yes.” Joshua was as okay as he was going to get & we knew that with a month’s time, we could get it done. In the next couple of weeks, in addition to nursing kids back to health, I’ve got rooms to paint at the new house & packing to finish, so updates here will probably be scarce unless something important happens with Joshua, in which case I will make sure to let everyone know.