THIS BLOG ISN'T FOR YOU if you are a proud PTA member, or if you live for weekends schlepping children to and from sporting events and friends' houses, or if you feel fulfilled combing bubblegum from pigtails! But, if like me, you occasionally wish that your offspring would disappear, if "Get me out of here!" is your mantra, if you have come to relish the dentist office for its delicious quiet, then you are a Muddled Mother! Read on!
Tuesday, April 12, 2011
I Can't Fix It
But I can't fix this. I can't, and I am so angry. The rage I feel is all powerful and it could eat me alive if I let it. What was once diagnosed as torticollis, a simple not-so-threatening neck tilt, has now turned into a full blown rare neurological movement disorder. My Ila. My beautiful happy, determined, funny, head strong Ila has a movement disorder that has perplexed my pediatrician and a well-known pediatric neurologist at UVM.
And you know what makes this worse?? What makes this whole thing worse is that the doctor that could possibly diagnose Ila can't see her until July. July? Really? July. Really? Really? I don't know about anyone else but the thought of not knowing definitively until July what is exactly wrong with my daughter is just placing agony on top of excruciating agony. How can a parent move forward. How can I make a plan to get her the help that she so desperately needs if I can't get answers. I can't fix this, but I need to do something. Without knowledge or a label where do I begin?
(If you aren't in the mood for a stark-raving mad rant, this is where I'd get off this blog ride if I were you. Otherwise buckle your seat belts.)
To the doctors of the world: Please know this: if you are in the business of giving really bad news to parents about their children you must be cognizant that even the brightest of humans need to process information before they can begin to ask pertinent questions, before they can begin evaluating if they want specific procedures, before they can minimally advocate for their beloved child. And yet....And yet...after the appointment where you drop a bomb in the parents' lap, you are impossible to reach. When we finally wrap our minds around what you have said to us, we of course have questions. We begin to rethink agreeing with you on this or that. We become this rolling, smoking steam locomotive that barrels down the advocacy track. And yet...and yet...you are inexplicably impossible to connect with. We talk to secretaries and nurses and voice mail machines. We email and pray and feel the deafening silence of the unringing phone, of the empty email box as if it were a heart attack. Each day that slips by without answers, without reassurance, without tests and most of all without plans is a day that we feel we lose precious time that we could have been using to help our child someway, somehow. Dear doctors of the world, busy as you are, it is imperative that you take a moment to realize that these patients of yours are the daughters and sons of parents who want to fix what ails them. Without you, without your availability--we can't. I can't. I can't fix it.
OK, so after rereading that rant I may have generalized a tad. Not all doctors, of course, are that way. Why just this evening Ila's sweet pediatrician called me to answer some of my more pressing questions, but ONLY because the "specialists" didn't return phone calls, didn't answer emails. Does there REALLY have to be a correlation between the amount of knowledge a physician has and a lack of availability? It seems to me that it SHOULD be the other way around. The more a doctor knows the more he or she makes herself available to the neediest patients and their families.
The best doctors available for the hardest cases in the quickest possible time-in a perfect world this is how it'd be. But unfortunately the world is far from perfect. It is a place where beautiful little girls face daunting challenges. It is a place where parents who live solely to give their children what they need run into brick wall after brick wall when trying to do so. It is a place where sometimes, it seems that sadness reigns supreme. The world is far from perfect. In fact, it often seems to be broken, and...I can't fix it.
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I can't imagine how hard all of this must be! That picture of your daughter is DARLING! Please know that I will be praying for you and your family. I hope that you are able to be seen by the other doctor before July!ReplyDelete
My heart hurt reading this post, and there is nothing magical to say.
So I will simply assure you that I get it, I've been in similar maddening situations, and you're not at all out of line. This was a powerful 'stand up' mom moment, not an inarticulate rant. Its not fair, not right, and absolutely maddening that you must now wait until July (really?) to get more information. Just because I'm curious, I sent an email to my sis (who happens to be an MD) to find out if there is any 'magic' way to get a doc's attention when they put you off. Just in case.
In the meantime, if you need a ear to rant to, I'm available.
For real, as they say.
The hardest thing about being a parent is not being able to heal them. There are some things we can undo or create to take away their pain. It's the hardest part of parenting for me. I hope you find the answers to help your girl.ReplyDelete
Sending you love and healing.
I don't know what to say. My heart goes out to you in a way you probably can't even fathom. My thoughts and prayers are with you. Remain strong and try to stay optomistic. I'm so sorry that the doctor can't see her until July. That seems like a lifetime away. Are there any other specialists, perhaps farther away, taht could take her in sooner? I can't imagine how frustrated you are.ReplyDelete
I am so sorry. It broke my heart to read this. I wish there was something I could do to fix it too. Unfortunately, as you well know, there is nothing of the sort that I can do. But I can send you my love and best wishes for your family.ReplyDelete
I'm sorry you have to go through this broken medical system. It really is broken. I can't understand why people who have spent decades of their lives learning how to help people really couldn't care less about their humanity.ReplyDelete
Here's what I've learned so far on my as-yet brief journey with my son's cerebral palsy:
- A good physical therapist is worth 10 diagnostic doctors.
- An exact diagnosis *does* make you feel a lot better because it makes you feel more in control, but it doesn't really change anything. Knowing the latin word for something doesn't make it any different.
- Look into alternative therapies, like Feldenkrais.
- Touch your daughter often and learn her movements.
- YOU are the expert and YOU are the only person who will make a plan. DO NOT expect doctors to as they will disappoint you!
I hope that helps. If you're interested you should check out my Diagnosis Day post.
I cannot imagine dealing with the pain of NOT knowing. You seem like someone that can cope with anything if you just have answers. I truly hope that you will not be forced to wait three months to find out what you want to know. You have clearly waited long enough and exhausted every available resource advocating for Ila. I'll be praying that you learn what you want to know SOON.
Thinking about you! Rant all you want!ReplyDelete
I love you dearly. I hope you know that. If there is anything that your little sis can do, please let me know! Thinking of you constantly.
I'm so sorry, I can't imagine how hard it is to not be in control here. I'll say a prayer for you and your little sweetie. ((hugs))ReplyDelete
How incredibly scary and hard to swallow this whole situation must be! I came over from Bloggy Moms... I will be saying a prayer for you and your little love. :)ReplyDelete
I said a prayer for you. That He would be with you to guide and strengthen you, that He would take care of your child, and that your family would be blessed with compensating kindnesses during this time. I'm so sorry this is happening to you and your family. Take care.ReplyDelete
I am so sorry that you're going through this. Your daughter is so beautiful. You and your family will be in my prayers and I'm always here if you need to talk or rant.
So sorry ... nothing worse than feeling powerless. I'll pray for peace for you and a God-ordained breakthrough for your little dear.ReplyDelete
I am so sorry. My prayers and thoughts are with your family. I can understand your rants. I've been there. Hugs to you and your sweet little one.ReplyDelete
So frustrating!!! Sending prayers for your sweet little girl your way, and for her mom.ReplyDelete
I am so sorry this is happening to your family. I echo the sentiments of the others here. Rant away!ReplyDelete
I was saddened to read your post. As parents, we are blessed with the task of fixing everything without the slightest bit of directions. My prayers are with you and your family.ReplyDelete
SO frustrating! my heart aches for you... the medical field is the focus of so many of my personal rants!ReplyDelete
There is nothing that brings out the mama grizzly within than when our children are threatened. Did you ask if you could be put on a cancellation list? Did your dr. make the appointment or did you? If your dr. office made the appointment, you could maybe try to have it moved up. Your dr. is just a point of first-contact. Praying for 1)cancellation that gets you in quicker and 2)healing and 3)peaceful sleep and restful dreams as you move this heart challange!ReplyDelete
While I can't possible imagine what your feeling, I went through a similarly frustrating experience. There is nothing more important to a mom than wanting to take care of her child and keep her safe. When the rest of the world doesn't cooperate it's maddening. Hold strong, we are all here for you. And that beautiful little girl is so lucky to have you.ReplyDelete
Great blog!! I am your newest follower!!ReplyDelete
Hey, 'get me outta here,' too!ReplyDelete
I so agree with Shasta. Just by knowing what word a certain MD will not change what you know. You know everything about her and you BY FAR are her biggest advocate and expert. Never let them tell you otherwise. As we talked about, let yourself grieve. Fully and completely. And then, move on with all the love and support you have. YOu and Jeff are a wonderful team and you will get through and over this all. I promise. xoReplyDelete
I am so sorry you have to wait.I can only imagine your frustration on that.I do understand how horrible and heart-wrenching it can be to feel helpless when it comes to not being able to help your child.Hugs to you!!!ReplyDelete
I am so sorry that you're having to wait for answers. I had tears in my eyes reading this post as I was thinking-what if this was my son? I so hope you get the answers you need. My thoughts and prayers are with you and your family. She is an adorable little girl!ReplyDelete
i've so been there. Hope you do get answers soon.
Thanks for contacting me on bloggymoms :)
I am sorry you are having to play the waiting game! It is hard a at times you just want to scream! Hang in there send prayers up for you and your family.ReplyDelete
Your post brought back so many memories! I have been where you are. But my 2 year olds diagnosis was cancer. The hardest part is the wait, and feeling of helplessness. The good news is, once you have that appointment, the ball starts rolling! Hang in there! I will keep your family in my prayers!ReplyDelete
Hi Logan, you must be so frustrated at 'the system'. I so wish you abd your family luck on your journey. You deserve to have your emails answered and phone calls returned. I hope you get the answers you need to move forward. Jacqui xReplyDelete
Dropping by from Bloggymoms... I have to say first that I LOVE your line at the top. I'm definitely one of those moms too! So, I'll definitely be a new follower.ReplyDelete
Next, I have to say that my heart truly hurts for you in reading this. I cannot express how much. I love my kids (even if they do drive me nutty at times) and feel bad when they are sick, but to know that there's something seriously wrong and there be nothing I can do for MONTHS down the road... :-( That would be SO painful to my heart. I'm keeping you and yours in my thoughts.
Will be grabbing your button too... Adding it at http://www.hiccupsintime.com.
Take care! And I WILL see you around... :-)
What a strong Mama you are. Your daughter is lucky to have you. VERY lucky. You will find a way - and it sounds like that's the only acceptable outcome for you. Stick with it. Good luck and prayers.ReplyDelete
Prayers, prayers, prayers. And love, love, love.ReplyDelete
I hope you get some answers and SOON.
This post is gut wrenching. I can't imagine what you are going through. I hope you can get answers long before July. That's unacceptable!ReplyDelete
Prayers for your family.
Hi, I'm a new follower!ReplyDelete
New follow here! I am so sorry for what you are going through. Hang in there, mama. It is clear that you will stop at nothing to help your daughter.ReplyDelete
Hi! Thanks for your comment on bloggy moms - I am now a follower! I am so sorry to hear what you and your beautiful daughter have to go through! I look forward to reading more posts from you.ReplyDelete
-Jackie @ http://www.coeyfamily.blogspot.com
Hi, I got your note on Bloggy Moms and though I would check out your blog.ReplyDelete
What a difficult thing to go through! I agree that whenever a doctor tells me something I am stunned and it usually takes me a while to digest what they've said. It's almost like when they tell you bad news they should write out some of the important info for you or give you a time for a follow up appointment to come back with a list of questions. It's like they forget you're dealing with emotion, not just information.
I'm so sorry. As mum to 2 young children and one a toddler still, I feel for you. My prayers are with you. Following you now. I'll leave you with my 5 year old's words "My Mum Makes Everything Better"!!ReplyDelete
I'm so sorry you are going through this and my thoughts and prayers are with you. I certainly hope you don't have to wait until July to get some answers.ReplyDelete
Totally frustrating but unfortunately not uncommon experience. Good luck, our thoughts and prayers are with you.ReplyDelete
Amanda @ http://www.mooselyeco.com
Facebook page: MooselyEco
I'm so sorry to hear you are going through this. Stay strong!ReplyDelete
Got your bloggmoms note, I am so sorry to hear that you are going through this. :( I hope time flies til July and that you can get to the bottom of this.ReplyDelete
Bless your heart, I can only imagine what u are going through. Prayers for your beautiful daughter and that u get the help and answers u need. From doctors who care enough to return your calls and address your concerns.ReplyDelete
Hi thank you for your message on bloggy moms, I am now following your great blog! So sorry to hear about your daughter and hope you get some answers soon.ReplyDelete
I understand. My daughter has Autism and we were on a waiting list for an eval that was A YEAR long. A frickin' YEAR!!! And all you hear is how Early Intervention is key. Yeah, except no one can see you until your kid is practically grown...grrr. And, it does suck when your child has something you can't fix. I struggled a lot with guilt and sadness at the beginning, even before an official dx when we knew something was off. And a good rant is necessary every now and again. Go for it.ReplyDelete
Thank you for the welcome. Your daughter is beautiful and I am so sorry that you are left on the edge. My prayers are with you that you find the answers you need.ReplyDelete
Your "about me" is so familiar it could be talking about me. Only difference is that my boys have yet to hit their teens and my daughter will be pushing 30 soon.
Following you on GFC. Hope you can visit me when things are slow.
I am your newest follower! I am so sorry to hear about that and I will send my prayers your way! Hope you come by and check out my blog too. I look forward to reading more of your blog and God blessReplyDelete
Sending prayers your way. What a heart-wrenching situation. I agree - July? Really??? Please keep us updated. Your daughter is beautiful.ReplyDelete
Thank you for inviting me to your blog --I am new to bloggy mom.ReplyDelete
I am sorry to hear you are going through all of this.
My son is 11 and we have been testing him for things since he was 3...
He is such a happy kid, and a great student, but things are just sometimes harder for him.
I'd love a new follower to my blog!
dear Logan, I am so so sorry to read this. please know you are in my prayers and you can feel free to vent to me any time. I know how hard uncertainty is, trust me I do. c'est la vie as they say. but I pray that you will keep hopeful, have the strength and patience to hang in there, and trust that all will work out for good. I'm actually quite afraid to say the wrong things, so please just know I'm praying for you.ReplyDelete
Wish I have better words or a way to help you fix it- but I don't and all I can say is that sucks.
I hope they can fit you in sooner for the appointment because not knowing is so much harder then working to a solution.
Thank you for inviting me to your blog.ReplyDelete
The medical system as a whole is very dysfunctional. I am so sorry for you and your daughter. Continue to be an advocate for your daughter.
I'll be praying for your family.
My baby girl had to wait for ever to get her adnoids properly viewed and removed. It was so hard to see her in pain. And my husband just had shoulder surgery and we had to wait for that for two months. My poor babies.ReplyDelete
I'm so sorry to hear about your little one's pain. It is agonizing to have to wait and watch them go through it. My heart goes out to both of you. But you are so on it! High five to you, mom. She's so fortunate to have you keeping the doctors moving!!
Although no two stories are alike, I do understand your frustration. My son has Aspergers (High Functioning Autism). Getting answers, trying to figure out what to do... finally knowing what you want to do but not being able to do it because doctors are not available, or insurance will not cover it. Believe me... I understand. We have been on a waiting list to get OT for my son. All I can say is that you have to just keep at it. What other choice do us parents really have. I got so upset the other day that I did a post on my blog, Mama's Turn Now (http://www.blog.mamasturnnow.com) inviting people to my Pity Party. I think I just may have to make it a monthly thing. A place to just vent and have others understand! Anyway, I am glad that you reached out to me on Bloggy Mom. I look forward to reading your blog more.ReplyDelete
~ Sharon from Mama's Turn Now
"The rage I feel is all powerful and it could eat me alive if I let it."ReplyDelete
I feel for you! And I relate.
Just came across this on Bloggy Moms. Thank you for reaching out.
I too am familiar with the pain of not getting answers and speaking with nurses, secretaries, answering machines, social workers etc and feeling like you're getting nowhere. It's so frustrating.
Please know that I'll be thinking about you and you DD. Much hugs. Please also send out an update when you get news.
Wanted to give you a link for a laugh. This book is fun. and I thin you'll relate... http://supermodelblogger.posterous.com/please-go-the-f-k-to-sleepReplyDelete