Praying for Noah

[daisyjane1234]

I am the parent of a child with profound physical and cognitive disabilities who is also medically complex. My son has experienced similar issues to Noah and is presently maintained on a feeding tube. Similarly he has a history of very complex feeding issues and complex feeding tubes. While my son does not have mitochondrial disease I do know one family in my "special needs parents" circle whose child has the diagnosis. I do not follow Noah's blog at all, but I did have a quick look. I do not see anything in their story that rings untrue or out of the realm of possibility.

With medically complex kids it is possible to have periods of stability followed by periods of extreme instability. My son is presently quite stable, but lived for about two years where he was considered extremely medically fragile - to the point that we had nursing in our house round-the-clock because the risk of my son developing something life threatening loomed large. During these times you live with the constant tension of knowing your child could die imminently, or could live for many years. It is a hard feeling or journey to describe and might explain some inconsistent behaviour at times. For example, last spring a child of the same age as my son, with an identical diagnosis to my son's, died very unexpectedly. He had been stable for years and developed a virus. Two days later he died. Medically fragile children do not weather typical "bugs" in the same way and a fever can start a chain of events that can be life-threatening. It freaked me out and I became this extremely protective and hyper vigilant parent for a few months even though my son was doing very well. This surprised many in my community since I had generally been the parent who "took things in stride".

You also need to remember that even if your child has a very short life expectancy we all hope that ours is the child that will defy the odds and prove the medical team wrong,. Sometimes this means that we make decisions based on hope rather than the hard-core truth. I started an university savings plan for my son when he was younger because I desperately wanted to believe he was non-verbal but had normal intelligence. It took me a year or two to finally admit to myself that my son's developmental delay was profound. For example, he does not know I am his mother.....but for a while I couldn't go there. I needed to cling to something different even though rationally I knew I was wrong. I am a health professional with two health science degrees. I knew better, but emotionally I just couldn't go there.

We have an accessible van and it means the difference between being house-bound and being able to live something that feels like a normal life. An accessible van means that we can attend church, go out as a family, run errands, visit family, and so on. I can understand why a family with a child in a wheelchair might wish to have an accessible van and try to assertively fund-raise for a van - regardless of life-expectancy. These equipped vans can also be very costly. Ours cost about $60,000 (Canadian).

I can appreciate how some parts of Noah's story may seem exaggerated, but the special needs parent in me would express a need for expressing those concerns with a healthy dose of caution. Unless you have journeyed with a very medically fragile and/or profoundly disabled child it is hard to really understand the journey.

[already hungover]

Right. The connection between the two families is that Noah's mother is (was?) a friend of Joshua's mother, and organized an online fundraiser for Joshua and his family some months ago.

Oh, right. Sorry for being unclear - it's a bit confusing as they both have the same first name and are online friends. Kate Estes (Noah's mother) has posted on behalf of Kate Parker at least twice asking for money, which is the only thing I can find fault with about her. I don't think KE is a dishonest person, but I have qualms about the Parker family.

Rumor has it that Kate Estes is no longer friends with Kate Parker on FB, but I don't have an account, so I can't say for sure.

[darkplumaged]

It should be noted that Kate Parker is fundie-ish. She homeschools (I guess; the kids don't go to school, at any rate), and I think she was QF before Joshua was born.

[bionicmlle]

really interesting posts - thanks everyone for the reply. I have never sent money to them and, as Artemis stated, probably wouldn't based on some significant philosophical differences. I think the things that raised my antenna was the long focus on comfort care, then again to-and-from the hospital for painful procedures - most recently needing a broviac replaced and the poor kid couldn't have anesthesia despite needing multiple sticks in his neck (which were ultimately unsuccessful). I've certainly never been in their shoes and perhaps the CHILD's wishes have even changed over time, but something just "pinged."

[Vex]

I feel like my replies came off as a bit judgmental and unsympathetic, and I feel bad about that. I am naturally extremely skeptical of people asking for money online because I have encountered so many liars and scammers. There is absolutely nothing sacred to these people so I do not find it hard to believe a person would make up this entire scenario for attention and money. I am convinced it's real, I just would not have been shocked if it had been fake.

I'm not a parent, and I can't imagine what it must be like to have a child who is terminally or chronically ill. Daisyjane and Chaotic's posts have been both heartbreaking and informative and I now understand why she would be seeking help and asking for a van in spite of her son's condition.

Thank you for sharing that information. I just wanted to apology for the tone of my post. It certainly wasn't written in the spirit of judgment or without sympathy, but I do feel that it might have inadvertently come across as dismissive of the situations I was questioning. I have a lot of experience with scammers, but little with the real parents of children with chronic, degenerative and terminal conditions and that was my ignorance showing.

I hope I'm doing a better job of explaining myself than I feel I am. I really hope I didn't offend anyone.

[snickerz]

Just as a follow up to the few who were following the Kate Parker/Joshua saga (not Kate Estes/Noah) - Kate Parker was arrested yesterday on medical child abuse charges (aka Munchausen by Proxy). 43 count indictment against her. http://koin.com/2014/04/01/mother-8-arr ... buse-case/

(Edited to say: leaving the link because it's a news site)

I hope she rots in Hell for what she did to those kids.

[already hungover]

Holy crap, I thought she'd get off.

[Antigone]

I was just on my way over to ask if it was kate Parker you were talking about since my local news just picked up the story, it made Good Day Oregon, which makes it news. I just read their story and a bell went off so I checked on here. Voila.

And, holy crap. That is my two cents, that is all.

[bionicmlle]

Perhaps another topic is in order?

[theologygeek]

I hope she wasn't poisoning her son like that psycho Emily McDonald was doing to her daughter.

[formergothardite]

I hope she wasn't poisoning her son like that psycho Emily McDonald was doing to her daughter.

I still think about that poor child sometimes and wonder what has become of her. Emily was evil beyond all words. I was so shocked when I found out because she seemed like such a devoted mother on her blog. If there were clues to her behavior I missed them.

[Librul]

I am very suspicious of anyone who blogs every detail of illness, need and finances and then asks for money from strangers.....particularly when their politics would preclude them from helping anyone else. The internet is filled with scammers who present as very godly wonderful people. It's also filled with attention seekers. I have a relative with a medically challenged child and she absolutely thrives on the dramatic attention, the sympathy, the perks and the "OMG you are the BEST Mommy in the world!!!!" She complains that the free tickets to events aren't prime, that some "meet the athlete" event didn't include all the other children, that the signed jersey didn't fit, that the snowstorm in Washington necessitated a stay in a hotel down the road from the NIH, rather than in the inn across the street.....all expenses paid of course. It doesn't need to be Munchausens for someone to become addicted. If that makes me sound like a cynical bitch, so be it.

[theologygeek]

I still think about that poor child sometimes and wonder what has become of her. Emily was evil beyond all words. I was so shocked when I found out because she seemed like such a devoted mother on her blog. If there were clues to her behavior I missed them.

There is a facebook page supporting the child, and the person who runs the page seemed to have a bit of inside information. It hasn't been updated in a while. https://www.facebook.com/pages/Justice- ... 8867501776 Somewhere I read that the husband was standing by his wife. Somewhere else I read that the other siblings moved in with their father. (not Dakota's father) That poor kid had a mother who poisoned her, is living with a father who is standing by the woman who could have killed her, and siblings who left her. Emily McDonald was the perfect mother on the mothering board. She also bashed women who didn't breastfeed. She said that formula was poison. I guess putting feces in your child's iv is fine as long as you're not giving your child formula.

[theologygeek]

I am very suspicious of anyone who blogs every detail of illness, need and finances and then asks for money from strangers.....particularly when their politics would preclude them from helping anyone else.

There is a blog that I used to read, and I always had a deep feeling that something wasn't right with the mother. The child really is sick. But I don't know. I really think that something is wrong with the mother.

[Marianne]

I'm very confused about this blog and this mothers who show every details of the illness of their children on their blogs. I remember a blog with a mother of 14, with the last child who was very sick (called Appolon... idk), and who post pictures of the scars of the children, of him under anesthesia, pictures to show how he was thin, etc... What about privacy ? Are you sure that your 18 yo boy whill love that all of his friend, teacher, boss can see his scars, his medical history ? I understand blogging about yourself : you are mature woman, you choose what you put on the internet, if you wan to give up any privacy, well, do it, it's your choice... But don't do it to your children. On the other part, i understand that you can receive support and guidance by a blog, but the lack of privacy of this children make me sad.

[bionicmlle]

Looks like Kate Estes is back with a vague post about the last 11 months they have been offline, but with requests to please not discuss what happened during the time they were offline and don't inquire for more information. Weird.

Anyway, glad that Noah seems to be doing better.