Every once in a while I’ll receive a comment or email that questions my honesty in relating Parker’s story.
One time someone even challenged Parker really being born with an imperforate anus.
‘Cause they’d never heard of such a thang, I must be making everything up. After that I started adding links when talking about Parker’s issues.
Because I want to make it perfectly understood about any and all benefits Parker receives or doesn’t receive, I’ve decided to share one of these comments below. This is one of the more tame grillings I’ve received.
Trust me when I say nobody wants to have to fund raise to cover their child’s medical needs.
Some may refer to it as humbling. To me it feels kinda humiliating.
And it can be hurtful.
Especially when someone comes along and questions your motives.
I’ve actually thought of sending out references to those who have questioned us from others who know our family in real life. Kinda my way of proving what I write really is true.
Instead, from now on, I am simply going to delete any emails or comments accusing questioning me.
I have better things to do.
Like keep my kid alive.
The Comment:
Ok. I am so confused as to how Parker could possibly NOT get on the Travis C waiver. He is techonology dependant, he has no assets. it doesn’t make sense.
We have had and still do have MULTI MILLION dollar bills from PCMC, yet we have never been denied care. WE have been hounded when we were there for a way to make a payment but we honestly just told them we didn’t have any of the money. They stopped coming around. We have allowed them to trash our credit knowing that we could do nothing about it.
I guess I get confused. If you make no money, have nothing and he is technology dependant how could he not get this particular plan of medicaid.
http://hlunix.hl.state.ut.us/cshcn/Travis/index.html
To be eligible for the Travis C. Home and Community-Based Waiver, an applicant must:
* be under 21 years of age at the time of admission;
* qualify for Medicaid based on his/her income and assets (parent’s income and assets are not counted in determining the applicant’s eligibility);
* meet admission criteria for nursing facility (NF) care;
* have at least one caregiver trained and available to provide care;
* require skilled nursing and/or rehabilitation services at least five days per week and be dependent on one or more of the following:
– a mechanical ventilator;
– tracheostomy based respiratory support;
– continuous or intermittent positive airway pressure support (C-PAP or Bi-PAP); or
– intravenous administration of nutritional therapy or medication through a central line;
* and choose to receive home and community-based (instead of nursing facility) services.
HOW DOES HE NOT GET THIS. IT IS NOT BASED ON YOU.. BUT HIM. I guess I dont’ get why he is any different than any of the other kids… I guess not all avenues have been exahusted.
I am confused.
Tammy replies:
First of all, you mention ‘if you make no money’..well, Reed does have a full time job. And insurance. Both of which actually tend to work against us.
PCMC has never refused services. They can’t. But they sure can make life rough after.
While PCMC may no longer contact you, they still contact us.
When Parker was on O2 and cpap, before he was trached, we qualified for NOTHING. Nada.
But when he was trached and placed on a vent, THEN he qualified for the Travis C. Waiver.
Kinda.
First there had to be an opening on the list. Cause unless one kid goes off the list, another can’t get on.
It’s the way it works.
If you’ll read in my previous posts, we have been dealing with whether or not Parker can for sure be a qualifying member on this waiver due to the fact that while he is on a vent, it is set on a CPAP setting.
I know I’ve told friends about this battle. They can vouch for me.
He needs the vent only while sleeping. Not to keep him alive. As in shut off the vent and two minutes later you have one dead kid.
He needs it during sleep to keep his upper airway OPEN. THIS is the cause of his PH. Severely obstructive sleep apnea. Along with underdeveloped lungs that he can’t open wide enough on his own to get enough oxygen.
After Parker’s last sleep study it was determined that even though Parker isn’t on this vent 24/7, it is still a life saving device for him. Plus, both his ENT and Pulmonologist/Sleep Specialist stand behind Parker needing THIS new vent. Even on CPAP settings. To keep him alive.
A traced kid can’t be on a regular cpap machine. And his old vent can’t handle his new settings.
Because of this and his latest sleep study results we are now pretty certain that Parker has a assured place on the Travis C. Waiver. Without fear of getting bumped off by a kid deemed more needy.
Getting to this point has been pure and total hell.
But, even then, there is the fact that Medicaid only pays for so many of a certain item.
This is why anytime someone emails me and offers their no longer needed trachs or ostomy supplies, I ACCEPT. The Travis C. Waiver would only supply Parker with TWO strips of ostomy paste for ONE ENTIRE MONTH.
And some items they don’t cover AT ALL.
Like Parker’s new vent.
Or Parker’s PH drug, Tracleer.
There is a TON of stuff that we pay out of pocket for each and every single month. And even with Medicaid we will still be paying for many items out of pocket.
And you bet your sweet butt that we will still get bills from any leftovers from trips up to PCMC, medical supplies and the like.
I won’t even go into the backlog of bills for Parker’s feeds.
By the time Parker was trached our savings were ruined. Our credit cards maxed out. Loans used up paying for Parker’s cares and needs.
If we knew then what we knew now, we’d of simply let stuff go into collections. But we kept thinking that this surgery would be the last. No new meds would be needed.
We had always met our obligations. Why should now be any different?
We had no idea the sum total of Parker’s medical needs as new issues kept being discovered over a period of time.
And we have had THOSE medical bills always staring us in the face. Along with all the other bills that added up before Parker was trached and was considered for the Travis C. list.
Like our co-pay for the $60,000 dollars it cost to get Parker’s tonsils and adnoids out.
And that was just ONE surgery. One of the cheaper surgeries.
Now it is looking as though we will be paying out of pocket for his new vent.
Notice the offer to write letters in Parker’s behalf up above in the comment section? I just may be taking them up on that to get some help in getting help for Parker’s vent. And if it takes talking to the media, I’ll talk to the media.
Just wrangling gas money to and from PCMC when Parker is in the PICU is a challenge.
We bring up most of our own food when Parker is in the hospital so as not to spend money on food there. Either Reed or I are with Parker 24/7.
I have a sweet friend who drops off groceries every few months to help us get by. Cause grocery money these days is a bit scarce.
And, oh yeah. Here comes Christmas.
Terrific.
If Parker had been allowed some sort of assistance earlier, say when he was on just cpap and o2, then we would have been able to have able to lesson the severity of this financial disaster.
There have been many, many months where we have had to pay thousands of dollars out of pocket for Parker’s meds. We did this by using credit cards and money donated to Parker’s medical fund.
Cause our pharmacy don’t give out credit.
Years of that, plus all of the other bills, takes one hell of a toll.
I have been very honest in my blogging and in sharing our story.
Reed and I live this each and every day.
And it sucks. Big time.
My kids live the stress too. The last thing you high school senior wants to hear is that their college fund went to pay medical bills.
But this is our reality. And we’ll make it through. We are a strong family. And we are dedicated to Parker.
Hopefully, that puts an end to any and everyone’s confusion.
If not.
Tough.
Feeling like I need to defend what I write on this blog along with the amount of worry and effort it takes to keep Parker alive is simply the straw that brakes the camel’s back.
Before having a “medically fragile” child, I had no concept of the amount of frustration that I would have to endure. I am so sorry that you have had to defend your actions. Our experiences have been nowhere’s close to yours, but it has been tough. More than anything, your posts let me know that we are not the only ones fighting the uphill battle for our children. I thank you so much for sharing your story. Know that your family is in my prayers.
You are doing a great job. All you have to do is look in Parker’s eyes.
First of all, I am a Certified Registered Nurse Practitioner (CRNP) and I will personally vouch for the accuracy of Tammy’s writings re: medical conditions as she has shared his official medical documents with me to review. Anyone who wants to talk to me directly can get my contact info from Tammy.
Second of all, I think alot of people are not aware of the abyss that can happen to the under-insured. Parker’s family is not alone in this- far from, unfortunately. They didn’t do anything wrong, and it could happen to any of us. Tammy and Reed are educated people with respectable careers with benefits. It just so happens that the health insurance- the only one offered through Reed’s employer- is woefully inadequate. I’ve been asked from time to time, “isn’t there a goverment agency that makes insurance companies cover things?” The answer is No- not for private insurers. You can try to appeal, but they generally fall back on policy. MA policy varies state to state, and apparently, Utah’s policies are very restrictive.
I sure do hope that the upcoming election will bring some substantive change to health policy in this country.
Chris (Nana’s Mom)
I simply will never understand the hatefulness of people. Why would anyone question what you write of Parker and his medical needs? That is just purely hateful and aggravating!
Hugs to you and yours,
I don’t understand of all the things in this world to question why you would question a mother trying to save her son by any means possible. I also don’t understand how people can believe that every one is treated equally. It’s just not true! I wish that there was a magic money tree that could be planted in your yard so that you wouldn’t have to fight so hard or defend yourself to those that don’t understand what it takes to be a Brave Hero’s Mom.
You are a GREAT mother, Tammy. Don’t let anyone make you doubt that.
HUGS for you and your family!
I am so sorry you feel like you need to defend yourself here, on your *own* blog. And I know this isn’t the first time. You are so honest about your life and it is clear you are under a lot of stress from everything. Parker is clearly doing well because you are taking such good care of him. You are gearing up for more surgeries, you don’t need this. Good idea to hit delete in the future. I follow a little boys Care Page from our area, and his mom put up a poem yesterday. It meant a lot to me. Maybe it will help when people make comments like this.
ANYWAY
People are often unreasonable, illogical, and self-centered;
Forgive them anyway.
If you are kind, people may accuse you of ulterior motives;
Be kind anyway.
If you are successful, you may win false friends & true enemies;
Succeed anyway.
If you are honest and frank, people may cheat you;
Be honest and frank anyway.
What you spend years building, some may destroy overnight;
Build anyway.
If you find serenity and happiness, they may be jealous;
Be happy anyway.
The good you do today, people will forget tomorrow;
Do good anyway.
Give the world the best you have, and it may never be enough;
Give the world you’re best anyway.
You see, in the final analysis, it is between you and God;
It was never between you and them anyway.
after preston was born, i programmed our insurance company on speed dial on the phone. making sure everything is paid for is so FRUSTRATING! perhaps people who read parker’s story should feel so incredibly grateful if they don’t have to deal with the financial struggles you face – instead of feeling like they have to investigate if you’re really telling the truth or actually using the funds for parker. perhaps they’re trying to be helpful…but helpful is praying for someone and encouraging them, PEOPLE! we’re behind you!! hang in there.
I’m sorry you’ve had to even write this post. I’ve never questioned the validity of what you’ve written. Not for a second. I do question the waiver stuff, but not as far as what you’ve written, just the “fairness” of the system. I see what you’re going through, and it’s so much more complex than what Addison’s got going on. I know we’re in different states with different guidelines, but it seems ridiculously unfair to all of you that you don’t qualify for more services. You should not have had to ruin your credit and max out your credit cards and use up your savings and struggle to buy groceries to keep your kid alive. The state system has let you down, and that makes me very very angry for you. Many hugs.
< < I think I just feel bombarded that everytime I read an update on Parker how poor you are gets mentioned and I don’t understand because the medicaid is there. I guess not for some but for the others>>
Nancy, remember when you voiced your concerns over at 5MFSN about how you felt I was posting too much about Parker. Too much about Ds?
I thought about that and if you have noticed I have switched up not only my personal postings, but have brought on many new writers to share their experiences of many different situations.
Because the mission of 5MFSN is to be there for parents with kids of all types of disabilities. Not just Ds.
But THIS is MY personal blog.
This is where I blog about OUR reality. What happens in our life with Parker.
Part of our reality are the medical bills. The battle to find Parker a place on the Travis C. Waiver.
The fact that until he was trached he qualified for nothing.
And for you to say that you feel bombarded when you come here, makes me wonder why you continue to come?
Just for the record, I post about MANY wonderful things here too. MANY posts don’t say one word about anything financial.
For you to say that you do get it because your child has been through this and this and this PLUS the other kids you know….
and then after I’ve laid our whole history on the line here, come back and say how confused you still are is NOTHING short of digging through the ashes and exclaiming “Look!, I know ALL about this, and something is still not quite straight with your story.”
You’ve lived through YOUR experience, Nancy. NOT ours. I can point you to families who have had Medicaid for years and yet their kids don’t have anywhere near the issues Parker has.
Explain THAT one oh wise woman.
The Medicaid IS NOT ALWAYS THERE.
We’ve run into other families who, as long as they pay a small amount of money each month for the rest of their lives, never hear a word again from PCMC.
Nobody would extend to us that offer. So we took out loans. Used credit cards.
I can’t believe that I am still trying to take the time to explain things to someone who is just looking for any and every thing to point a finger at in (ahem) confusion.
I’m starting to think that you simply just like stirring the pot.
Just walk away. Walk. Away.
Cause that’s what I’m going to do.
I was the original poster of the comment and I have a chronically ill and medically fragile child who just went through brain surgery. He lived at PCMC for 3 months when he was born in the NICU. He has endured 7 brain surgeries and numerous other anomalies. I also have a nephew that had a kidney transplant along with another nephew that had a heart transplant. Its funny, because you think I don’t get it. I do. So I do understand a 1.3 million dollar bill for ONE OF THE STAYS and a bill coming in for 10 thousand dollars. I don’t understand becuase we have private insurance and yet getting medicaid for his was his secondary. We had it for only a year and we were responsible for the rest. So hateful, no it was not intended that way. Confused yes. Still confused a little. I get you are trying to keep him alive, we do the same in this house. Donations do help. I think I just feel bombarded that everytime I read an update on Parker how poor you are gets mentioned and I don’t understand because the medicaid is there. I guess not for some but for the others.
Did I mean it hurtful, no and if it was taken that way I am sorry. I lived in the same state. We moved and found much better healthcare in another state. It was what we had to do to get the help we needed. In turn we aren’t able to get a home, I work 20 hours a week outside the home becuase we have a multi million dollar debt to work off. But we to did what we had to do. I don’t think you are misusing funds, but we have had weeks and months in the hospital and so I do understand. I was just asking quesitons…
At least I provided a topic on your blog I guess
Wow, I am dumbfounded at the insensitivity that some people have. And Nancy, to say such hurtful things and then come back with “well, I didn’t mean it to be hurtful but I’m still confused” just really goes to show that some people in this world aren’t really out to help others. I don’t really understand what would posses you to be so callous toward a family that has obviously had hard times. I didn’t hear you trying to help. Only to point fingers. It is obvious that they are doing their best and if you don’t like what is posted here then maybe you shouldn’t read it.
Tammy doesn’t always talk about how “poor” they are. There are many other wonderful posts about Parker which is why I always keep coming back to read. Do you read those or just skip over them?
Tammy, I’m sorry. Some people just won’t get it. Ever. But some of us do. And some of us care. Even if we don’t “know” you.
And by the way, how is it Tammy that you are “posting too much about Parker and Ds”?? I don’t get that. Are you not supposed to mention him? Just dumb.
And you know, I think the reason that some people like to “stir the pot” as you say Tammy, is because unless you are going through exactly what they’re going through, you don’t have it as bad as them (in their eyes). So you don’t have the right to complain. Which is completely ludicrous.
Wow. Really?
I was just catching up with you on bloglines and seriously shocked that you are dealing with this. I understand that Nancy doesn’t mean to be hateful or hurtful, but when you question someone who is dealing with so much already it is hurtful and hateful. Izzy qualifies for tefra in OK. It provides her with medicaid as a secondary. Our private insurance is really great, thank God. But the medicaid (tefra which is based on her income not ours) does cover some things like equipment insurance won’t touch. I had to jump through so many hoops to get tefra. She was the first person in our county to get approved and it was a fight from beginning til end! By the standards you posted she would not qualify in your state.
I have had people question things we have done too… we had a fundraiser to fly a group of brain therapists in from australia. Fundraisers are a blessing, but also hard to accept. Insurance won’t cover hyperbarics, nor will tefra. And it is supposed to be the best thing for an injured brain.
You are a wonderful mother, and your love and sacrifice for your family shines through the words you write on your blog. Anyone can see that clearly if they look… blessings and hugs to you.
I just don’t understand how anyone would question you. Every post I have ever read about Parker has shown how positive you are about Parkers development and milestones. You always praise his successes, so why would you lie about what is going wrong. People who lie and exaggerate are negative about everything, they focus on the bad only and never talk about the successes their child is having! That is definitely not you. Parker is one of the most bravest boys in the world and he is lucky to have a mom like you. I wish there was something I could do to help but he and your family are in my prayers
Tracleer?! Good grief that stuff is expensive and scary. How on earth do you do it? Parker is very fortunate to have a family like yours to hang with and fight for him. I hope you can feel the prayers coming from all over the world and I hope that they help to keep you strong.
Although our situation is not as dire as yours, we also have a few other children to be concerned about! I think, in a way, that they are better people for having a medically fragile baby brother to to worry about. They have learned to be much less self-centered and more loving and accepting of other people.
Yeah, they are probably going to have to work their way through college. A few of them are interested in medicine, now! It would be nice to have a couple of docs in the family.
In addition to praying for Parker’s health and well-being and your finances, I pray that your other children are and will always be a blessing to you.
you might already know of these sites but if not maybe you will find some helpful info there or atleast some IRL parents to talk to:
http://www.utahparentcenter.org/
http://www.utahfamilytofamilynetwork.org/home.php
http://www.dspd.utah.gov/
To Michelle. I do read about all of them. In fact I have taken a few ideas from her and used them in our own house. I am confused so I asked a few questions. Why don’t I help? Well go to our blog and see that we have medical issues of our own that we are paying out of pocket for.
We pray for her other son on a mission. We pray for parker when he is in the hospital. We are specific in our prayers for him. What about the return thoughts. There are no comments from her other than rude ones about us. I asked a questions because I get things from others that are helpful to us.
Your right Tammy.. Maybe we don’t understand. But specialneeds is a club that includes ALOT of other people…
I won’t be coming back.
And I do hope the best for Parker
Right on Tammy
(((Hugs Tammy))) You are an amazing mother. You do not need to be dealing with this stuff right now. Im so sorry. How insensitive can people get, really?! : (
Hi Tammy. Just from what I’ve read, you are a fantastic mom and I love the fury that you bit back with. It’s ridiculous that you have to deal with crazy people who should understand the challenges you face.
I, too, have been on the receiving end of “anonymous” hateful comments from that certain someone. (Too bad I’m smart enough to compare IP addresses and I knew it was her who left them.)
Maybe if enough people stood up to the catty adults preying the blogging world, it would stop.
Parker is absolutely gorgeous! What a doll!
Ohhh Tammy, I’m so sorry this commentor hasn’t bothered to read long enough to see that you HAVE indeed exhausted all options. Medical bills suck and still you pull together and focus on Parker. You are an amazing mom doing the best for your amazing child. I just don’t understand, if people think we’re these HORRIBLE moms (I got a lovely comment today, too) then WHY do they keep coming back to our blogs?! I was told month before last that I’m exploiting Kennedy. *sigh* I say, if they want the sickest kid, we’ll give all our kids medical issues to their kids… and see how they like it. Just remember, for every ONE bad comment, there are FIFTY good ones. Don’t let the haters gat you down! Keep on keeping on! Love you!
Renee
It is not as easy to let it go, when you have a person that for some odd reason thinks it’s okay to question and express their own personal feelings about something that is not theirs, has nothing to do with them, is no concern of theirs, etc. Tammy know that the majority of the people who read this blog love you and Parker very much. They prayer for your family and think good thoughts. There will always be a few that have to spoil things. Do the best you can to let the few go and soak up the goodness from the rest of us.
It is sad when these kinds of misunderstandings happen. Parents of special needs kids are in some tough spots and we should be supporting each other not tearing each other down. I wish it was in my power to help everyone that needed it but it is not.
I am thankful for the fact that we have been able to avoid the financial ruin that faces so many people with medically expensive children thanks to my husband having a job with amazing insurance. I feel my blessing every day when I read of the struggles that others are going through.
Leeann was the before or after you made fun of “retarded people”.. Oh thats right. when I said I was offended that you made fun of them.
I may not be qualified to comment, since our special needs child is still in another country and not home with us yet, but I am a Mother and long-time reader. The pain and frustration of Parker’s situation is clearly evident in everything Tammy has written. The mistake they made was in paying their bills and being up-standing, decent citizens. Who’d have ever thought that by doing the right thing it would turn around and bite them in the rear? Common sense tells us that they, of all people, deserve the help our tax dollars should be providing, but common sense does not prevail. Parker is caught in a bureaucratic gray area and he and his family all suffer. It stinks (I would use stronger words, but this is a G-rated site
So I do what I can. I donate when I can. I spread the word. I pray and I read this blog and 5MFSN. And Tammy? I made the breakfast tacos you posted about a while ago and I just want to tell you that my family LOVES them! Thanks!
Shoes. No one ever knows what another person/family goes through unless they have been in those exact circumstances, those very same shoes. Having a child with special needs, medical needs, etc., should not, no, DOES NOT qualify another person to grill you on what you have been going through… continue to go through as you fight for your son’s life, for his needs. Or what you choose to post on your own personal blog.
I am blessed to know you Tammy, both online and in real life. Every day Robert asks me how his buddy Parker is doing, and every time he sees the pics of Parker and him, he gets the biggest warmest smile.
Love you, friend.
I think you do an awesome job of explainging life as you live it in your blog! Parker is a lucky little guy to have you and your husband fighting for him!!
I’m sorry you felt the need to justify yourself.
As always you are an inspiration Tammy.
Good luck on future surgeries.
I know exactly who Nancy is
Nancy has been kicked off of at least one board that I know off, for causing stupid, unneeded drama. and even then she faked a new name and lurked and started more drama.
She seriously needs professional help and she will not stop lurking, she can’t help it.
She thinks what she is doing is okay, but really she is just addicted to drama, esp starting it.
No justification needed. Those of us who live or have lived with medically fragile children and/or other special needs which insurance chooses to not cover, completely understand and know that every word you post here is truth. No questions…just love and support.
*mwah*
I’m so sorry you’ve had to deal with this and defend yourself on your own blog, you shouldn’t have to do that.
I have a little brother with DS who is about 6 months younger than Parker. I’ve followed Parker’s story for the past 3 years or so. What a total cutie he is and it’s neat to watch you still focus on the new things Parker is doing even though he (& you all) are going through so much. Obviously it is stressful.
~ Qadoshyah
I just came by to see how you and Parker are doing.
Hopefully your friend “Nancy” doesn’t come back as promised. Too much Drama for me. This is your person space to share and hopefully receive some support. I don’t know about other people but I visit blogs primarily to see how everyone is doing and offer support when needed. ((hugs))