It’s 146 miles and almost a three hour drive to get to Albany.
Albany is where Piper Jane is moving. We’re not sure when she is moving, but they are trying for as soon as Wednesday.
When I think about it, my heart breaks. It physically hurts and begins pounding furiously inside my chest. I don’t know what to do. I’ve hardly been able to talk about it since finding out on Friday. I haven’t even told my family (which I hope they forgive me for) because I can’t do it without weeping and wailing. I really don’t know what to do.
The summarized version of the story, is that Blythedale isn’t a long term facility. They are a rehabilitation facility that is designed to help transition a child from acute care, to home/long term care. If a child has had a major surgery or an accident that causes them to spend time in a hospital or ICU, afterwords they’ll often go to a place like blythedale so that they can recover/get therapy while the parents are trained to care for them at home. Giving meds and such. If the child isn’t on track to go home in the forseable future, they must be sent to long term, basically a nursing home for children. Since Piper Jane isn’t on track to come home, long term it is.
It happened before when she went to Wannaque. Twice. Wannaque was such poor care, that it was only a matter of days before she caught dangerous infections that nearly killed her. After just a week of time spent there, she spent 2+ months recovering. After two miserable fails at Wannaque, they wont even accept her there (which we are clearly not going to fight).
She has been on a few long term waiting lists for a while, and I have just avoided thinking about it. It it much too stressful and heartbreaking for me to imagine her going somewhere we don’t know or trust, and I guess I’ve just hoped all along that her name would never reach the top of the list once a bed opened.
So, that’s it. We are being kicked out of Blythedale.
I don’t know what to say except for that my heart is sincerely broken. It is difficult to even try to express how much pain Jake and I are feeling right now.
I know there is a lot going on in the world, and looking at the big picture we are still fortunate for what we have, but at the same time I just can’t make sense of it all. Isn’t traveling 40 minutes too much to see your child as it is? Isn’t it hard enough that she has to be sick? Why do we have to go through even more pain and even more complications. Why does Piper have to have such a hard life? Why can’t we just have smooth sailing for a little while? What more can we handle?
With as hard as it is to process how we’ll work out seeing her when it’s a 6 hour round trip drive, and the cost of a tank of gas per visit, what is really the hardest and most scary thing to think about is the chance that she might not get the proper care that she needs. From the little experience we have with long term care, it wasn’t just bad, it was frightening. And Piper Jane almost died, twice. I don’t want to think about it, but it is impossible not to think for just a minute that we might lose her because of this move. I can’t help my thoughts when my job as a mother is to protect my child from this kind of danger.
Here is my plea for help. Is there anything you can do to help us? Do any of you have any connections or knowledge that might help keep our little girl safe and our family together? Do you have press or political connections to appeal or change the way the state/country handles these situations? Please help my family if you can think of any possible way.
I feel helpless and I don’t know what to do. It’s hard not to feel picked on right now. Why can’t my Pip be healthy? Why do we deserve such a hard life?
I’m not even going to apologize for my lack of optimism, because it’s just not possible today. Maybe tomorrow but not today.
Oh Reagan, I’m so sorry! This makes me so sad. I don’t have any great ideas, but wanted to let you know that Our family will be praying for yours.
If this were me I would call every news media group in the area and country. Cjane has contacts with Oprah and now 20/20. She may not think she is influential but this could be a Big story! I would contact every one of my congresmen/women and sentators. I would keep being the squeeky wheel. It is exhausting work being the mother of a child with special needs. But you and your husband are her only advocates. You fight to the end. That is what I tell my children I will do for them. I fight to the end. Send out peitions, have every one sign them and then get them to your representatives as well as the care facility. With as many fans as you have you could get a blog set up just for this purpose and have people help you manage it, maybe your family.
My friend, I have never met you. But my advice is put you mama bear on. By that I mean you fight to the end. You fight until you get a resoulution that you can live with. You can get discouraged, that is OK. But you NEVER GIVE UP ON YOUR FIGHT FOR PIP! I hope to see a story on you on one of the major networks soon!!! All my love and prayers to you.
I don’t have any great suggestions, but I am praying for you guys. Please keep us posted!
I am so incredibly sorry for you guys, my heart is breaking for you right now. I wish I had something that would help, but I will be praying for you…
Oh my heart hurts for all three of you. I bet a lot of the Blythedale nurses were also hoping she’d stay off the top of the list. Hundreds of people read your blog though, Reags, and I’m sure someone can help you. Maybe offer you and Jake a place to stay overnight so you can stay with Piper for more than a day. Or maybe there’s a bus you can take so you and Jake can find a way to use the commute time for work or sleep? Or maybe, just maybe, this is the beginning of the end. Maybe the move to this new facility is actually a path to having Pippy in your home and we just can’t see it yet.
I so wish I could help you all. I have a daughter with significant special needs. Reading your stories and your honesty about your circumstances makes me feel less alone. I recognize and identify with so much of what you are going thru. I want you to know that reading about your sweet Piper brightens my day, every picture of her makes me smile. I am praying hard for a positive, safe, EASY & SWIFT resolution for you and Jake and Piper. You’re 100% right, this isn’t fair.
Oh I am so sorry. That little girl doesn’t deserve to be away from you and Jake. Why is life so cruel? I can only hope that there is a bigger plan here in the works.
Is it possible to move at all? I know that is major. And then what if her stay there doesn’t work out and you’ve moved. I hope she is well taken care of there. I hope something happens to make it turn out all right.
i dont have any connections but i will keep you and your lovely pip in my thoughts and prayers. fight and believe that this will work out. please keep the faith. you have every right to be angry and feel this situation is unjust and that you dont deserve such trials. but try to turn that anger into something positive. something powerful that will feed you instead of deplete you. lean on your friends and try to trust.
i’m sending love and prayers your way. stay strong.
i don’t know if you can fight it based on the Least Resticted Environment (LRE) disability act for schools, I know that in AZ at 3 yrs old, the school district starts becoming responsible for educating special needs children. LRE doesn not always meant that moving to a mainstream type setting is the LRE, With less caregiver to patient ratios in most long term facilities and the fact that most “nursing home facilites” are of the belief that pallative care is best in long term care, but this would be restrictive to her cognitive and physical health. Which would make this a more restrictive environment for her. I hope that this makes sense. This website may help http://specialchildren.about.com/od/specialeducation/g/LRE.htm
We will pray for you to receive a positive outcome for this heart breaking situation.
((((hugs))))
I’m so sorry that I don’t know anyone or have connections. I have read through the other comments and I’m sure you have thought of moving and home care and all that so I won’t try to suggest anything like that. But like everyone else I will pray for you and I do believe that you will receive help on this. Keep strong and fighting for your girl. You are a great mom. I’m sorry you have to go through this.
LRE might work, but I doubt it. Using LRE or not, Blythedale still isn’t a long-term care facility.
Are there long-term care facilities (aside from the one she’s already been in) in or near manhattan? Can you argue that the move would be detrimental due to parental difference and fight for a spot in one closer to you? What would happen if you all just flat refused to sign consent forms for the move?
I know you’ve said before, but the reason she can’t come home is due to her oxygen requirements, right? I was wondering if full time nursing care at home would be an option. But I’m assuming you all have gone over this before and again and again.
I’m sad for you guys, but I’m praying for the best outcome that keeps you all together for the longest times.
sending your sweet family the warmest wishes. hugs.
I know that you’ve mentioned before why Piper isn’t able to come home, but I can’t remember all the medical reasons behind it. In any case, I ran your situation by my father who is a lawyer. He recommended two ways you can approach this. The first is to insist that they move Piper toward a home placement. Even if you’ve already been told it’s impossible, you need to make it clear that home placement is your goal. This may mean refusing your consent for the transfer to the Albany facility. If you’re told that she can’t come home for safety considerations, make them show that the long term facility is safer than home. Safer has to mean based on considerations other than the presence of equipment. In other words, if your home can be made as safe as the long term care facility by bringing in the right equipment, then they have to continue to transition her to the home setting. If no amount of equipment will make home safe for Piper, perhaps you can find a doctor who will say that a setting like Blythedale is the only place that is safe for her.
As a mother, my heart aches for you and I am praying for your family. I hope you get the outcome to this mess that will be best for all of you.
I have no connections – only to the man above and I am certainly thinking of you, Jake & Pip and pray that there is a better solution for all of you.
Perhaps this is a time for you and Jake to re-evaluate everything about your life. Families often have to do that for all kinds of reasons. If it is not possible to get Piper into your home, and she is going to have to move, don’t be resticted to what’s “just available” in your area. Go looking for the best facility for her throughout the United States, and then make plans to move as a family to that place. My husband’s job has required him to move numerous times, but the deciding factor in each move was about the kids – best schools, appropriate neighborhoods, etc. If you took your search for a facility nationwide, I am sure you could find some great options. And it would be a new adventure for your family, a time to stretch and grow and sacrifice for one another. It really does make your family stronger.
Is there anyway to “game” the system? I am thinking that perhaps you could insist on bringing her home. And, then, almost immediately have her transferred back to her current residence for more “rehab” when home care “doesn’t work out”. You would just be repeating the scenario that happened when she was sent away last time. But, this time, you’d do it yourself. I know that home care is not really possible – but you’d be doing it simply as a way to insure piper’s re-entry into the rehab facility. Just an idea.
Reagan,
I have been reading your blog for a long time, but have never commented. This post seriously breaks my heart. My husband and I live near Rochester, so we are also about 3 hours away from Albany, but I would like to offer any help that we could possibly give you. My heart is seriously breaking for your little family.
I have grown to love your family while reading your blog and wish I could do more than just pray for you. Is there any way that you could use LDS church channels to do something for Piper? It’s possible that there are church members who would be able and willing to help you.
We just moved here from Utah, so I know where you’re coming from! Love,
Sam
That sucks! I am so sorry for your pain!! Your family did NOTHING to deserve this. Bad things happen to really good people; we mere mortals have no idea why. Maybe it’s totally random and Piper just drew a really short stick? I do believe the God is in the way people come together to handle such seemingly insurmountable challenges.
What is the closest long term facility? Can you lobby to get in there since Bly. is not a match for Pip’s long term needs.
If the new long term place has poor care then of course you and Jake will advocate to get our. If it’s OK think you should move. You can do hair in Albany and the parking situation will be much better. You and Jake are Piper’s heros; her knights in shining armor.
20/20 was just at NieNie’s if the new place sucks and Piper is stuck there I could totally see them covering your story
Love and prayers are coming your way!!!
I thinks Carole’s suggestion is a brilliant one. Since Piper is going to have life long challenges research to find the BEST location in the whole country and move there. That way you won’t have to uproot your life again and again
Reagan, I just want you to know that another person’s heart is breaking with you today (and all the next days) and praying hard for the three of you. I can remember many times when my own family had reached a crossroads like this re. care for a helpless child, and this particular kind of pain is completely the pits — oh, how I recognize the DNA of the feelings in your post. I do have the germ of a thought I’m contemplating and will get back to you if I think I can make anything of the idea. I’m going to try hard. Much love to your darling self in the meantime.
You remain in my thoughts, constantly.
Hi Reagan,
I have been reading your blog for several months now and don’t know if there is anything I can do to help, but I would like to offer some suggestions. I have worked in the field of DD (Developmental Disabilities) for 15 years. The majority of my work has been with adults in the state of Ohio, but I do have some general knowledge of how systems work.
I beleive that I have read previously that Piper is coverned under Jake’s insurance? I am hoping that I am wrong and by some chance she receives medicaid funding. If she does have medicaid, there is an appeal process for any change in services that you could exhaust to slow the process down. If she doesn’t receive medicaid funding, you might want to pursue applying for medicaid. There are certain protections offered to recipients of public funds that just don’t exist with private insurance. There are some definate drawbacks to medicaid funding, but protection from reduction in services is one plus that could possibly have helped you in this instance.
Secondly, I would try to link up with your state DD agency. I did a quick search and found a FAQ page about eligibility that might be a good starting place. http://www.opwdd.ny.gov/hp_faqs.jsp#q5 I’m sure Piper has a social worker assigned to her at Blythedale, but in some states, case managers are assigned to individuals to help the person and their family navigate the system regardless of where they live. I don’t know if this service is offered in New York, but if it is, I would advise you to request it. That person can help you find the best possible services for Piper. Here is some additional info about your local field office for DD services:
New York City RSFO -NYS OPWDD
75 Morton Street
5th Floor
New York, NY 10014-5798
Phone: (212) 229-3343
Fax: (212) 229-3095
Handles multiple DDSO’s including: Metro, Brooklyn, IBR, Staten Island, and Bernard M. Fineson
Counties Served: Bronx, Kings, Manhattan, Queens, Richmond
Office Managers: Milt Erdfarb and Mitchell Kevy
——————————————————————————–
I would suggest you contact the office above and the Commissioner for the State of New York Office of DD. In writing,tell her your story. Explain how moving Piper away will endanger her life. Make a plea for help from the Department to keep Piper safe. Tell them that to keep her safe, she must be close enough to her parents so that you can regularly physically see her and advocate for her health care. No one knows her like you do and although nurses can meet her basic health care needs, they do not know her well enough to insure her continued good health and safety.
I know this is a long post, but if there is anything I can do to help you pursue any of these options, please contact me. I would be happy to make some phone calls or help you with e-mails/letters. I’m not sure if you will see my e-mail with this post, so here it is leeafogle@yahoo.com.
If none of this information is helpful, at least know that your family is in my prayers.
Lee Ann
The Rocky Mountains (yes all of them) are sending you loving care and holding you in their thoughts.
I’m so heartbroken for you. I know that doesn’t help. Please know you, Pip, and Jake are in my thoughts and prayers. You are amazing, strong, and inspiring and you and your family will be ok, you have to be.
I am so so so very sorry….I have nothing to offer right now, but prayers. That I will do with all my heart! Praying so very hard for you and your family.
Your story brought tears to my eyes. I wish i could make it all good for you… i wish I could help in each and every way. But all i can do is pray for you, your husband and you little girl. And I will, without ceasing.
Love,
Mariel
Hi,
I have followed your blog for quite some time. I am heartbroken for you. I live and work in Albany (self employed attorney). What is the name of the facility she is being moved to? I know this does not help, but being a mommy of three, ages 20, 4 and 1, I would be more than happy to visit Piper and give her love when you aren’t able. I hope that doesn’t seem weird, I am just at a loss as to what can be done. Another thing, you are more than welcome to stay in our home when you do get to visit…once again, so very sorry.
Tamara
I love the idea of 20/20 covering your story. The squeaky wheel always gets the grease!
I have grown to love your dear Piper and love the blog. Thanks for all the time you spend in keeping us all up to date. Love and prayers to you all.
Big hugs you guys. Cannot. even. imagine.
Life really sucks sometimes.
I hope you are proved totally wrong and its an amazing place she LOVES.
Wishing you all luck and love.
Tracey xx
I’m so sorry, Reagan. I don’t blame you for being angry – Let it out! There have been some great suggestions on here, and I hope yall find a better solution. You, Jake, and Miss Piper Jane are in my thoughts. You’re a great mom, Reagan.
Just to echo Tamara, as a fellow Albany resident I would also be more than happy to check on her if you ever needed it. (again, not to be super weird)
Also thought I should mention that the cost of living here is WAY cheaper than NYC (I’m sure you know this.) If you were looking for an apartment you could get a nice one bedroom for around 1K a month. Don’t know if it’s feasible to have one apartment here and one in NYC but just thought I’d let you know it’s much cheaper here if that is an option.
Years ago my little boy had to be hospitalized for a serious infectious disease. He had to have IV drugs 24 hrs. a day. Since he was young, I camped out in his room for days and made sure he was being cared for properly. Even then, we had a problem with a nurse taking 45 mins. to respond to a clogged IV line, which caused terrible pain in my son. Luckily, I was there to literally grab a nurese and bring her in to remedy the situation. If sweet Piper ends up moving, you need to either camp out in her room or stay in a hotel nearby for the first week or two. Stay with her every hour of the day you can and monitor/record everything, perhaps with a video camera. This will give you peace of mind that you are there, making sure that they are doing everything correctly, or it will give you ammo to get her out of that facility. My heartfelt thoughts go to you and Jake.
I wrote a comment earlier, but I don’t see it here, so maybe it didn’t go through.
For me, step 1 would not be to get angry or go to the media. anger is too exhausting.
Step 1 would be to find an advocate, either an attorney or a social worker, professional child advocate, etc. who understands the law, and your rights, and all your options, and how to work the system. You need to figure out what you can fight for, what is even possible, before you start fighting. If you find out that there are options that are not being offered to you that would be better for you, then you can start campaigning, using the media, etc. But first arm yourself with accurate information.
I would start at your husband’s firm, if that is an option. Not that a corporate firm would have the right expertise, but I’m sure someone there knows someone who would have that expertise. It is probably an incredible resource. Even if he can’t do an e-mail blast, I would ask him firm librarian to help. I work at a large firm like his, and our firm librarian is an incredible resource. And loves a project.
I am an attorney at a large international firm, and when a family member had an issue last year that I needed help with, I sent an e-mail around my firm asking for advice, and oh my God, the responses I got. Incredible how helpful the advice was, an attorney at the firm who did the kind of work I needed (and I didn’t even know that) spent an hour on the phone with me, gave me the advice I needed for my family member, let us know what the next steps should be, and the whole horrible thing was put in perspective immediately. She didn’t mind AT ALL. I didn’t want to do it — didn’t want to air my personal stuff at work — but boy was I glad I did.
You might also want to ask Blythedale if they can recommend someone. If not, then search the internet. You’ll find someone.
Once you find someone to give you the right advice, I think all will fall into place, at least in terms of you knowing your options. I am guessing that moving to Albany is probably not really an option for you, given your careers, and the life you have, and I don’t think you should feel guilty if that is not on the table.
With the right advocate, I would figure out where the closest desirable long-term care facility is located, and find out how to get Piper Jane on the list to go there. If there is no available facility that is closer, and also good, then figure out how you are going to make Albany work, at least temporarily. And if you don’t like Albany, see if there is any place better that is a comparable distance, and figure out how to get her in there.
Assuming Albany is acceptable, albeit too far away, work with them. They must have social workers or the equivalent on staff there to help parents make this kind of transition. I’d try and talk to someone there as soon as possible. Find out how they deal with long distance parents, find out if you can talk to other parents. See if there is a support group. You might find information that is comforting to you.
It is all going to work out. It might be hard, and it certainly is not what you dreamed about, but you are a strong resourceful woman, and I know you will find the best possible solution. Good luck!
This whole thing makes me sick to my stomach. Praying for you guys!
Reagan, I have no way to help you but I just want you to know that you are in my thoughts and prayers.
Reags,
Dan and I are heart-broken for you guys. I wish we had some connections to help out! We’ll work the one with the Man Upstairs, but if you think of anything we can do for you, let us know! Keep in mind God is not punishing you! He knows you’re the perfect people to watch out for Piper. He’s trusted you with her precious soul. You are strong. You will find a way to work things out! Hang in there!
XO
Tarynn
I’m so sorry. Lots of good advice, I hope something helps. I have two thoughts to share with you.
One, have you looked at New Jersey? Or Connecticut? There may be a long term care facility there that is a shorter commute than the one to Albany would be.
Two, if Piper is going to live in Albany for the long term, then it may be time for you and Jake to move to Albany. As a military spouse, I am not recommending moving lightly. I know all too well how disruptive moving can be, how hard it can be to leave a job you love and to restart a career. But what I want to tell you is that you can do it. You really can. And the surprising thing is that even when it seems impossible at first, you will find ways to make the new place your home.
Reagan,
I have never met you, but my heart is breaking for your sweet family. Your family will be in my prayers.
Kara
I feel so sad for you right now. I am also one of the people who knows nothing that will really help you and your situation. I am also one who won’t suggest you bring her home (or look into bringing her home), because obviously you would have by now if that was an option! I love reading about you and little Pip and am praying for something amazing to happen so this crappy situation will somehow get better!
Reagan,
My heart is breaking for you–from one mother to another. I don’t really have any suggestions, but I will pray hard that this move will work out somehow–that the facility will be a lovely place for Piper and that she will thrive there and that you and Jake will somehow figure things out. God does miraculous things, you know!
Amy B.
hurting for you guys. all i can offer is prayers.
sending love and thoughts and prayers your way.
love ~kc
carrmumble.blogspot.com
Oh dear, I am so sorry this is happening. Surely something can be done. In the meanwhile, I’ll pray.
i don’t have any ideas or suggestions that haven’t already been made…i do believe in miracles and i do believe that prayers work, we’ll be pouring out prayers for your sweet family!! we have grown to love you and little pip through your blog…my 3 year-old daughter asks me every morning to sit at the computer and “see pictures of my cute friend piper”.
love, hugs, prayers, and endless hope to you!!
Reagan — Call your Congress(wo)man’s office. Call your state senator or assembly member’s office. They have staff that can help you advocate for yourselves and Piper and navigate the bureaucracy. Apologies if you’ve already tried this, but if not, call. Constituent services are a huge part of elected reps’ jobs; it’s not just bill-making. Seriously. Don’t be afraid to tell them it is an emergency.
Find your Congressman here: http://www.house.gov/htbin/zipfind
Find your state reps here: http://www.suny.edu/govtrelations/state/Representative.cfm
Dear Regan and Jake, I’m so very sorry, your family is in our prayers!
Jenny, Mike, Sam, Neva, & Will
The only thing I know to do would be to go to a parent advocacy group. There has to be someone out there who has been in your shoes before and knows what to do. Hope isn’t lost! I would google advocacy groups for children with severe disabilites and go from there. Best of luck, you can do this.
My goodness…you guys are in my thoughts. I so, SO hope there is someone out there with connections that can help you.
I will be praying for you and your sweet family. God can make a way, where there seems to be no way.
“Now may the Lord of peace himself give you peace at all times and in every way. The Lord be with all of you. ” 2 Thessalonians 3:16