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.
Wow…look at all your comments! You do have a small army of people to support and petition on Pip’s behalf! I don’t have any brilliant ideas, but if I think of something I will let you know. You’ve gotten some really great ideas on here. And I would love to believe that maybe something really great will come out of it. Look how far and how strong Pip is now. Hang on to these things.
Sending good thoughts your way!
What about Extreme Home Makeover? There is a link to apply online. Could they supply you with the stuff you needed in a home to bring her home? Just a though.
You will know what to do. You are strong enough to find those answers inside if you search yourself.
I’m a long time reader, first time commentor… I wish nothing but the best for you, Jake and Pip. I’m sure you’ve explored so many options, but would the Elizabeth Seton Pediatric Center be a possibility? I believe they’re in Manhattan??
I have been following your blog for awhile now and this post breaks my heart. I do not have any suggestion on how to change your situation but I have an offer for you. We are BK transplants who now live in Katonah which is the northern most tip of Westchester. If Piper does get moved to Albany you are more than welcome to spend nights in our guest room so you will have a much shorter drive to Albany. We have a 6 year old special needs daughter and I believe in my heart the only way to get through this is with the kindness of friends, sometimes the kind who start out as strangers. My email address is lsoraci@gmail.com. Please think about my offer and email me. In the meantime I will pray your little Pip gets to stay put.
Lisa
My family has a similar situation with an adult family member. It is heartbreaking. There are such things as private case managers. You can hire one to evaluate Piper’s condition and placement. They often have contacts with LTC facilities beyond the scope of the rehab. Remember that the rehab case manager as wonderful as he/she may be ultimately works for the rehab and will have pressure to move Piper to the most convenient place. We were able to stall a move for several months with a letter from an attorney to the president, risk assessment and the case manager at our rehab facility. The letter only outlined safety issues and asked for them to put in writing that our family member would be safe at new place. They reacted quickly and appropriately to this. There are no easy answers. Pray pray pray. We are praying with you.
I’m so sorry. I don’t have any connections to help, but I wanted to offer one more voice saying we will be praying for Piper and you and jake.
when you talk about the cost of gas, remember that you also blog about your vacations to eurpope, the places you dine, etc. most folks won’t feel you can’t afford the gas when your lifestyle is pretty dreamy. (not speaking about Pipers condition).
I have absolutely no connections and no way to help, no ideas, only my prayer that someone else does and sees it in their heart to help..
hugs, hugs, hugs…..to you and Piper.
xxoo,
RMW
Hello,
I have been following your blog for a short while. We have had friends whose children are on vents and have special needs. In each case, their insurance provided 24 hour nursing, occupational and physical therapy. You would get to be with your little angel at all times. I will hold Piper and your family in prayer…..
Thank God for prayers answered!!! I am so excited and happy for you and your family, especially Piper, who is the one who will benefit most by being close to her mommy and daddy. I loved Jake’s letter to the senator…..He conveyed the truth in a way that deserves respect and attention. Please don’t let the Joy M’s of the world change your openness and honesty. You have no idea how much you educate, help, and inspire your readers. Let Joy M. keep telling herself how wonderful she is……I’m sure she has already told many, many people how selfless and caring she is…..LOOK at the joy and raw love in those pictures above…..Piper Jane LOVES her parents and THAT is the reason she beats so many odds. God bless you and your family, and PLEASE, keep on writing!!
Fantastic news, I have been thinking about you a lot…..really really happy for you guys!
@jill:
Jill,
that comment is just ignorant. No other way to describe it.
@jill:
Jill- If your child had a SERIOUS medical condition that required 24/7 care you would be deserving of a break; i.e. vacation, dining out, etc. You shouldn’t be so quick to judge… we have no idea the sacrifices this family has made for their child or the life they have. Give them a break.
@jill:
Oh yeah, their situation sounds really dreamy. Having to travel to see your own child in the hospital sounds like a real delight. And then finding out that you will have to live two hours away from that child is absolutly peachy!! Gosh, I can’t believe that you have the balls to comment something so brainless. Just because she doesn’t post how much is in her bank account at the moment doesn’t mean you can assume you know someones finacial situation based on a blog post and some pictures. Get a clue. Maybe someone gave them a gift card to go out to dinner. And she doesn’t have to explain that to you.
@jill:Jill, I bet you are a fat, jealous, ignorant b*tch sitting behind her computer just looking for ways to bring other people down. You’re such a good person, though, right? Just like Mother Theresa, right??? You have no idea what Reagan has been through, so you’re gonna need to stop running your mouth asap. Ok? Thanks.
Dear Reagan
Now I feel badly that I asked about home nursing, I would never ever want you to feel badly.
You are an amazing mother and writer. I an so glad you are happy with the current outcome.
Take care.
Dear Reagan,
Have you tried a special education attorney in New York state? Piper Jane is entitled to an individual plan, with therapy goals, and an appropriate environment to meet those goals, under Federal law. Sometimes the involvement of an attorney can assist with this process. Certainly, parent-child relationship maintainance goals need to be a vital part of this planning. There may also be pro bono legal advocacy groups that could help, and decrease the expense.
Very best wishes to you and your family.
@jill:
Wow! How are you such suggest this can be summed up as a gas issue. Clearly this family is in a state of heartbreak and desperation and your brilliant advice is to remind them of European vacations. Super wow, my friend. Bow out of this one if you have nothing sincere or helpful to contribute. There is nothing “cushy” about a life spent longing for a healthy child who you have watched suffer from the time she was born. I promise you, new shoes don’t make that unique kind of pain better.
As the mother of a child with a chronic illness (not even almost comparable to that of Piper Jane’s) the torture of being a helpless bystander while your child suffers is agony of the worst kind, I promise you that. Having to leave your child at the hospital, bears nothing on whatever kind of life you return to without them. I come here to count my blessings and feel inspired by a family who practices balance in a way that is enviable. Should Reagan and Jake wallow up in a fetal position and rock back and forth in heartbreak outside Piper’s door, what good would that be for her. Of course they hurt. We see that, read it between the lines on every post and watch them live through it. That is the key, they live REAL lives so they are of worth to Piper. And they show everyday how to brave the hardest things and pull through it with Grace, faith and humor.
Don’t you dare make her explain herself with your snide comments. You don’t know half of the situation, we have been made aware of only snippets of the whole picture. This is a place to come and share in a love of this family, if you have nothing to contribute that resembles even loosely some form of support please write nothing.
You should be ashamed of yourself.
My. My.
A lot happens in bloggy land, when one goes on a family vacation for a week and doesn’t have internet access…
I’m glad Pip isn’t moving away right now. Good luck as you continue waiting for a bed to open in a closer place. *best thoughts*
Is it possible for you to hire a health care advocate? I know that they have them to help families navigate complex medical situations. Usually these people know all of the people to contact, write, appeal to and free you up to worry about your loved one instead of the intricacies of the health care/insurance/state system.
It might be something to consider not only for this situation but as you advocate for Piper in the years to come.
Thinking of you, your husband and your precious little Piper. A mom and dad deserve to be with their baby without having to drive hours to get their. Keep fighting and keep smiling.