This is a writing post. I wish I had pictures but I don’t.
We’re a little sad in the Yellow Unit. I spent a lot of my weekend trying not to cry. Piper’s new room is smaller and more crowded, and there is no nurse station in there. Since it’s smaller, we have to get rid of most of her toys. There is just not enough space. The lack of space also means she can’t play on the floor anymore. Thank goodness for the big new bed she can play in. Some things were lost in the move, which seems crazy since it is in the same hospital. Also, Piper is already almost completely out of socks again. Can you believe it? Remember that I just bought and labeled like a hundred?
When we walked in for the first time, Piper Jane was taking a nap in her scoli jacket. I tried so hard not to be livid. A scoli jacket is a back brace that isn’t really much different from a corset. She wears it sometimes, mainly during therapy. There is no reason for her to be napping in it unless you want her to nap uncomfortably.
Saddest of all, and I’m sorry that you who love Pip are about to have your hearts broken, Piper Jane is depressed. She knows everything is different, but she doesn’t understand why. She doesn’t know her new nurses yet, and her room looks totally different. Just a few weeks ago I was bragging all over the place about how climby and walky and adventury my Pippy-girl was getting. On Sunday, she didn’t smile a single time. She had no interest in standing or climbing or playing. She moped around and napped for hours and hours, just like we all do when we feel sad too.
Let me pour my heart out to you for a minute.
It’s just so hard you guys. It is so hard to see a little girl, trying her best, fighting the hardest she can fight, just to have another wipe out. It seems like every time she seems to get remarkably better, and remarkably stronger, she gets wiped out again.
Why? Fwords and more Fwords. Why?
You guys, Piper Jane is a good kid! She is a good good great special sweet amazing unbelievable kid. So why does her life have to be so hard?
I kept looking at her and petting her sweet blonde head. Thinking in my head that it’s time to come home. This has gone on way too long.
More Fwords.
(when we first went to Blythedale almost 4 years ago, we didn’t like it there at all. hopefully the yellow unit will grow on all of us. Jake, me and my little Pip.)
I’m so sorry Reagan. She’s regressing a bit, as her environment has changed. She will hopefully adapt, and with you and Jake visiting she will at least have you both as consistency. I’m so sorry she had to move, and I think it stinks that there is no room for her toys.
I’m sorry your heart is breaking. I know the ups and downs, having been through them with our adopted daughters, going two steps forward then two back, ever wondering if life would be good for them. Watching my child with delays, try to catch up, not have the retention and starting all over again. It’s hard. Many hugs to the three of you. I hope it gets better in time as Piper gets to know her new nurses and new room.
Oh, my heart is breaking for your little girl. How can she not have room to play? I am praying that they will see the need she has and adapt her environment to suit them. I am so sorry this has happened to her. How much can all of you be expected to bear. Many, many Fwords
reagannnnnnnnnn, my heart is breaking for pip. (and for you guys). i cant imagine how painful it is to see precious & innocent pip going through this. i want her home. i cant imagine how badly you guys do. thinking of you guys lots. sending my love. xoxo
Change is hard. I’ll be thinking of you guys and hoping that things work out for you.
It seems totally wrong to think that the babies get bigger rooms and the bigger kids get smaller rooms with more kids in them. They need the room the most!
I’m sure this room change has probably made an already not so great situation even crappier. I’m sorry. I wish there were better resources for you all. It amazes me that in the biggest city in the United States, there isn’t enough spaces for children like your pip.
I wanted to add that I totally get why the sock thing is frustrating. I hate it just from daycare!
Reagan,
Cry and then cry some more and then cry some more and then do what we mothers do…(and I will tell you I HATE this part as a mom because I want to scream from the hills when it is my time to do this…) cry some more and then…keep fighting the fight. Life is unbelievably, unfathomably hard.
I honor your pain and Piper’s. I honor the struggle. Mom to mom, I honor you and will contain to ‘row the boat’ and pray for you all while you face the day to day struggle.
I have no answers as to why P’s life must contain these challenges.
God Bless.
Jane
a mom/reader in Los Angeles
I meant to write that I will continue to row the boat and pray for you while you sit amidst the struggle.
Sometimes I don’t type well.
Jane
I’m not sure what to say. “It’ll get better” and “hang in there” just seem contrite. I guess what I want to say is — it is ok to be sad and angry. You do whatever you need to do to get your family back in a good place.
so sad to hear this. but as with all change, i’m sure little miss pip will adapt in no time at all. virtual hugs.
Pour your heart out sweet mama…cry and cuss all you want. Life isn’t fair and I wish for you to be able to have your baby home with you. I pray there will be brighter days for you and Piper and Jake in the near future.
tears!!! if any girl deserves to just get to be happy, it’s that pip. seriously, it breaks my heart to think of her so sad. and you! i hope it all works out, and soon!
poor little baby girl
I will keep her in my prayers and hope that she becomes happy and giggly again!
“… personal honor yet means a great deal, so be polite as long as you can and don’t run when you can’t be.”
-Daniel Woodrell
Do feel free to kick some ass there for finding her sleeping in that damned thing. Grrr!
Ohhh Reagan, I’m so sorry your sweet Pip has to go through these changes! But remember, she is STRONG, Reagan. Not only because that is part of who she is but also because you and Jake have been strong for her! You’ve been her greatest advocate and I know you will continue to be–so who can blame you for the F-words? No one! I’d kindly but firmly tell them you don’t want her sleeping in that brace if it’s not medically necessary. No need for that precious angel to be uncomfortable. And it just breaks my heart (not near as much as you guys I’m sure!!) to hear that Piper is depressed. That poor baby has faced every challenge remarkably well–it angers me that she has to face MORE changes and that she has so little control over where the staff move her etc. You guys are doing great, Reagan! If possible, just be there with her more–until she gets used to it and so she can be reassured that YOU and her Daddy aren’t going ANYWHERE!! Even talk to her as you rock her and tell her that…talk about the changes and how “I bet you are missing your old room and your other nurses aren’t you? Maybe we can find some good things in this room and make it special…etc.” Although I know, more than anything you just want to scoop her up and finally get to take your baby girl HOME with her mama and daddy! Praying for you guys!
I am going to start praying that some miracle or series of miracles happen that allow Piper to come home with you. The obstacles to her coming home with you that you have described in the past are big, but miracles can be big too. I am also praying that she manages to adjust in the meantime and finds her spunk again. But for you in the meantime, be a Mama-bear and see if changes are possible. I rememeber when she was set to moved to Albany and you and Jake pulled out all the stops to keep her near you. Maybe other adjustments can be made that help her get back to her Pippy-self. I know as a reader, I only know a fraction of the details of everyday life in your world, but I hope its a comfort that so many people are praying for and thinking about your family everyday.
Reagan,
My heart is breaking for you and your family. Even though we’ve never met and probably won’t I feel like we are good friends. I can’t imagine how hard it must be to watch Piper take huge steps forward only to take huge steps back. I will keep your family in my prayers. I am hoping that things get better for your sweet family soon.
Hi Reagan. Please know that we will be lifting you up in prayer. You are not alone, even though this road may seem lonely. May God richly bless you and keep you both and Piper in the palm of His hand. We may never meet here on this Earth, but as brothers and sisters in Christ we can pray for each other and encourage each other. You are loved dear sister.
Oh, man. My baby is 6’3″ and about to turn 20, and it still hurts me almost physically on the occasions when he’s hurting. I multiply that exponentially to try to imagine how you must be feeling right now about your precious wee Pipster, who has been through so much. My husband might have to restrain me from finding a crowded street corner on which to shriek at the sky: “WHY CAN’T SHE CATCH AN FWORDING BREEEEAK????”
It’s all so unfair. But she is one heck of a resilient little cookie, that one–and so are her parents. (Apologies to Jake for referring to him as a cookie!)
Prayers and virtual hugs!
I am so sorry Reagan! It breaks my heart when my kids have viruses or gets a cut or someone is mean to them. ..I cannot even imagine how hard your heart is breaking right now! It breaks mine and I haven’t even met the little Pipster..she is soo precious. I will be praying for you, Jake and her.
So, so sorry that you all have to go through these heartbreaking trials. My daughter was diagnosed with Leukemia when she was 3 and I vividly remember cursing and shouting that same question.. why? It’s heartbreaking to watch your baby suffer and feel so helpless. My heart is with you, and Piper is in my prayers, and you are in my thoughts daily.
Reagan – I think you are fabulous! I’m sure that most of these comments are inspiring and comforting to you – but I can’t imagine how frustrating it is to hear people try to compare what you have dealt with for the past four years to their stories. No one knows how absolutely difficult and traumatizing your situation truly is. I am sending out loving thoughts and vibes your way – even though I don’t know you – I wish I lived near you so I could visit Piper when you couldn’t to give her lots of love and play with her! You are so special – and your warm, sweet and positive spirit will help Piper and her situation forever! Hang in there!!
Oh honey, my heart breaks reading this and thinking of your joyful girl depressed.
You all are in our thoughts down here in Florida.
Hang in there baby girl. While Pip coming home would be AWESOME…only time will tell. Hugs from Utah. Pip is strong and will be alright.
Not the first time I have cried from reading your story…My heart goes out to you and Jake and the Pipster. You are all strong, and your story will get better. Stay strong and know you have many cheerleaders.
Sending good energy your way.
oh, i’m so sorry
booo. change is so hard. & especially when it’s happening to your kids & you can’t make it all better for them. gahhhh!!! so hard, reagan. i hope this change will end up for the good, but i know that doesn’t really change the fact that right now you’re hurting along with your little pumpkin.
thinking of you.
I hope this can help cheer you up.
http://meowmania.jqln.org/
Your little family is in my prayers. Love you guys.
this is probably a dumb question, but do you have a solid child psychologist you can turn to for advice? If you don’t, you should call Tovah Klein – she runs the toddler program at barnard college here in nyc and has always been an amazing resource. I know at the base level she’d tell you to tell Piper its not her fault she had to move (obvious to us but sadly not always clear to kids), that her old nurses, etc still love her, to put pictures of her old room, nurses, etc in her new room, to explain what is going on, and to say its ok to cry and to be sad and feel blue. Though we always want to make our kids feel better, it can be a gift to also let them know its not only ok to be sad about change, but its normal. 2 books also to read to her: When sofie gets mad and Alexander and the horrible, terrible, no good very bad day. both deal with negative emotions which just might help on some very very small level. i know what you all are dealing with is beyond the realm of what any of us can comprehend.
This is a tough post to read, Reagan, because my mother heart feels it so deeply with you. It’s just not fair! Pippy is an amazing, awesome, strong, courageous girl, and she’s got parents who are amazing, awesome, strong, and courageous, too. So why does she have to struggle so hard every darn day! When changes like this happen it’s hard not to let it get you down.
I saw this message this morning and it seems very appropriate for you. I hope it will bring you some comfort.
“Sad things – children who are sick or developmentally handicapped, husbands who are not faithful, illnesses that can cripple, or violence, betrayals, hurts, deaths, losses – when those things happen, do not say God is not keeping his promises to me. The gospel of Jesus Christ is not insurance against pain. It is resource in event of pain, and when that pain comes (and it will come because we came here on earth to have pain among other things), when it comes, rejoice that you have resource to deal with your pain.” – Carlfred Broderick
i’m sorry.
life is a trial sometimes. sometimes can last a very long time. i am in a trial now; one that has gone on for five years. ugh. you, too. i read http://www.nieniedialogues and she wrote about the suffering and trials in a way that resonated for me. perhaps it would make a bit of a difference for you, too.
again, i’m sorry.
“Where there is love, there is life”…Mahatma Ghandi
Darling one, my heart quite literally broke in half after reading tonights words. Brave, sweet Reagan…thank you for sharing this saddness so that we can help shoulder this burden. I am so very sorry Piper Jane has had to deal with so much change. It is so hard for a little one, even a really smart, 4 year old girl like Pip. And my she is smart and beautiful and so full of life. She needs time to adjust and she will. She is sensitive and likes her routine. She will have a routine again. And she will smile again. You are a good Mama Reags and Jake is a good Papa. Pippi girl will laugh and smile and do super silly monkey tricks again so soon. I will pray with all my heart that she is swinging firm her bed rails when you see her next. I will pray for your comfort and resolve and that you will sleep knowing she is safe and loved and happy. And she is so loved Reagan. So come on Piper Jane…take your mama exploring in your yellow room and smile your big beautiful smile. Because as I said when I started, “where there is love, there is life” and you Beautiful baby girl are loved!
I’m so sorry to hear this Piper news. It does suck moving to a new room and losing things and not having room for all your cool stuff that is important to you! Change is so hard for our special children. And for us as parents to have to watch them try to adapt. You have to start all over with new people trying to get to know your sweet baby and her parents. Piper is in our prayers every night. We will pray for her to adjust to her new room and for the nurses caring for her to realize that she is someone’s precious baby and to treat her with love and respect and to know her as the unique(very cool)young lady that she is.
Oh dear. Oh oh dear. Love. Xxx
Oh, Reagan, my eyes welled with tears as I read this post. I’m so sorry your sweet Pippy is going thru this. To not be able to play on the floor and have many of her toys gone must be so difficult for her. I hope she and her new nurses grow to love each other.
Sweet Pip. I cannot imagine. Thinking of you guys. For real. And hoping for brighter days in the yellow unit.
I’m so sorry to hear this. You and Jake are the best advocates Pip could have and I hope that you’re able to find a situation that suits all three of you better. Thinking of you. xxx
Oh Reagan. Sending all the love in my heart to wipe away all the sadness in yours. Miss Pip, that goes for you too.
Ali xoxoxo
Sweet Reagan, I am glad you posted this because I hope just talking to us helped. You know that all of us cyber aunties of that Precious Pip want the best for her, and I know that when I read this, my heart hurt–for her and for you and Jake.
Change is so hard, especially when you just think, “What is going on here? Why?” about so many things. I am praying right now for that Pip to find some little friends and that the nurses will see her as the feisty sweetheart all of us see her as. I pray that she will adjust and find new things to like about where she is now. Since she can’t keep all her toys, can you keep some at home with you? Then you could bring one or two when you come to visit so that she can enjoy them for the time you are there.
We love your family, and I know that you and Pip will be able to bloom no matter where you are planted! It just might take a little time, but I am praying it will happen soon.
Reagan, Thinking of you, Piper and Jake
Well, this is definitely a time to think. You look like a problem-solver to me, so I don’t doubt that as the settling-in period continues, you will work out what can be made good, what definitely has to change, and act on it (with your best negotiating manner, of course
.
Re- the scoli jacket (I was a physical therapist in a former professional lifetime), is there an on/off proportion of time being sought? If the staff can give you a decent answer on that, then you can help meet that goal (and its expected spinoff in managing Pip’s spinal growth changes) without it feeling like she’s having to wear it at times you’d rather she didn’t.
Hoping you can tease out the threads of what is workable and not, in this new environment.
Oh, and can you rotate the toys through home/hospital? Works wonders with many kids – you’d think you’d just bought them new again, when they’ve been put away for a bit, and then brought out again. xx
Poor, Poor Pippy-Loo:( I’m so sorry Reag:(
Oh Reagan I’m so sorry. My heart is breaking for you all. I will be praying for a perfect peace, a great joy, needed comfort into each of your daily lives. Esp for Pip-as I know as she feels better you and Jake will too. Keep your chin up-you and Jake are giving Pip the best care you can. You are amazing parents and pippy loves you!
I’m so sorry that Pip isn’t having a smooth transition and wish that it had been handled maybe in a different way to decrease the impact on her. Also, as a therapist, I’m really disappointed that she doesn’t have a floor to play on … that seems so odd. I understand that there might not be enough space but nothing upsets me more than children not getting what they need due to space, money or some other not good reason!
But Pip still has you and Jake and I think that you can break her out of her Pippy Funk and she will see in time that her new room is fun too … because the funnest parents in the world still come to it!!
I’m sorry to hear that, Reagan. Change isn’t easy for anyone, and poor Piper is feeling the effects. Try to look on the bright side, though. She had to be moved to a bigger bed, in this new room, because she is doing soooo well! Climbing to the top of her old bed! Go Piper! In time, she will adapt, and so will you and Jake. Until then, hang in there. Hugs to you all.
i so get how you are feeling. my heart goes out to you with this. i do hope that one day you guys will be able to be home with piper – ventilator or not.
my continued prayers for your sweet girl, and your mama heart…
p.s. thanks for the name of the bed.
Reagan,
Have your ever visited the site “Aaron’s tracheostomy Message Board”? There is lots of really good information on children with trachs and ventilators. The parents who give advice on the message boards all have children with trachs or ventilators. As a grandparent of a child with the same syndrome Piper has, I have found the site to be invaluable. It’s so good to be able to “talk” with people who have been there. Before my granddaughter came home from the hospital (after almost 3 months) people on the board gave us all kinds of suggestions on everything from how to set up her room to how to deal with the nurses. I won’t say it’s been easy, but my daughter and son in law have learned everything there is to know about the ventilator, g-tube feedings, and the trach. My granddaughter has done better than any of the doctors ever gave us hope for and I really think its the home environment that has helped. Their insurance and Medicaid help with the nursing. My daughter is a teacher and is able to work part time. It sounds from this post like you may be ready for this step. Good luck with whatever your choice is. I’ve been following your blog for almost a year now…ever since we got the diagnosis for my Granddaughter.