I’m going to take a couple of days off from the blog. I’ve been faced with some disturbing news about what I’ve been sharing about our family online and I need to process what I think about it. Honestly, I’m a bit shocked and hurt and I need to figure out the best way for me to deal with the news.
When I come back I hope to have a direction…keep the blog public? Make certain posts private? Remove the blog all together and just keep a journal? Screw it all and keep going as is? I’m torn because I think our story is an important one to tell, yet I don’t want sharing our story to cause more problems for my kids. Don’t they have enough? I’d rather they didn’t also have to worry about parents taking the information, talking about it negatively with their kids, who then will use the information against the kids. I’d rather parents not use the information to isolate my kids. I know, demanding, right? It’d be great if they used the information as a teaching moment of tolerance and acceptance, compassion and understanding. To teach themselves and their children.
I write my blog for me. It’s comforting to know there are witnesses to the good stuff and the bad stuff and writing here as been a safe place to land. It’s been good therapy for me and I’d like to continue it. I just need to figure out the format.
On my best days I think that sharing our story will teach someone tolerance for (all) kids with differences. Sometimes I think another parent might relate. If I share what is going on then as my friend Lori puts it, I will “Own My Message.” Because people will spin the story – most likely wrong – and speculate and if I want them to have the story right, then I had better well provide what I want out there in the world.
Never did I think my words here – always truthful and for my kids – would hurt them. Apparently a failing kidney (or 2) garners support but emotional problems will get you whispers, gossip and shunning.
If you don’t read it here or hear from me directly you don’t know if it’s accurate. If you’ve got questions, call me, email me or comment here. If you are around someone who is gossiping, send them to me. If you have negative things to say about my kids, or if you are worried about your kids being around my kids, talk to me. If you want to speculate, gossip and teach your kids to do the same, shut the hell up.
love you!
I’m so sorry. I’ve told you that I had to be hospitalized when I was 15 because I was so depressed I couldn’t function and I needed the doctors to find a medicine that worked. One of my friends called my house and my dad said, “Thorn won’t be able to come to the phone for a few days,” which was a lot scarier to her than it would have been if he’d just explained what was going on. There’s a huge stigma around mental illness of any sort — as I know you know! — and I’m sorry that you and Gage are having to face the repercussions of that. I do believe that blogs like yours help change people’s perceptions, but of course you can’t do it at the expense of your kids. I’m sure you’ll make a good decision.
Good for you! Any parent who would do that doesn’t deserve to have kids. I can’t speak for the entire PKD community, but I think most want you to keep blogging. We want to know how you are doing, the good, the bad & the ugly. We can handle it because hello? PKD ain’t for wimps! But someone who doesn’t understand PKD won’t understand all the side effects. And refusing to be kind & compassionate regardless of the circumstances? Just what values *are* those people teaching their children? xoxox
I can’t even imagine what’s happened, but it sounds like I’d like to knock a few heads together on your behalf!
I would love to see you continue, but I know you’ll do what’s best for yourself and your family.
I really, really hope nobody is taking this out on Gate. That’s the last thing he needs to deal with right now.
Wow, Julia…. I just have no words. One would think that in this day and age, that people would have compassion for mental issues but I guess not. Which is really sad!
I hope your blog doesn’t totally go away though – it’s been a great source of comfort to me. I found out I had PKD in March of last year and though you’re going thru it with kids much younger than me, just knowing and seeing how they are handling it – helps. You have very brave kids!!
Thank you for sharing that part of your life with us and if it has to go into the great unknown, well, I do understand!
I’m disgusted and sad.
I try to be wide open about the fact that I see a psychiatrist regularly for the reason you stated – to try to take away the stigma. When I tell someone I have a doctor’s appointment, I readily tell them who I’m going to see when they ask. I am stunned that a parent would use the info against Gage. I hope for their sake that they have to deal with a difficult situation someday and learn some humility.
My best wishes for your family, whatever you choose. My daughter had to deal with PKD, migraines, back brace for scoliosis, insomnia, and orthodontia during her early teens. And big-time depression. Duh! A year of not hearing her laugh and one trip to the ER. But loving support, meds, therapy, and being honest about the situation really helped. And I discovered that we weren’t alone. Lots of other kids go through similar experiences, thinking they’re the only ones. I think the medical issues were a big factor. I would remind people that depression is fatal–get it treated. I think these fair-weather parents are scared and small-minded. I hate that your family is going through this. You don’t know me but I read your blog and have shared your joys and sorrows. My heart goes out to you. My husband is awaiting a transplant and your story gives us hope and valuable information.
Well, I’m a total and complete stranger to you. I found your link after they did the story on you here in Atlanta, and I’ve been following your blog ever since. I am blessed to be able to say that I don’t have a sick child. So beyond being fellow Georgians and moms, we don’t have a ton in common!
But I read your blog not because your kids are sick, or were sick, as the case may be, but because as a fellow mommy you are inspiring. To read how you handle each and every situation that comes your way with such grace and dignity is uplifting and it gives me plenty of techniques to store for when challenging times come with my now four year old. I have learned so much from your blog, in a really such a short amount of time, and it makes me sick to see that grown folks would use a childs mental illness as anything other then a teaching and awareness tool, and I am so sorry. For very selfish reasons I hope that you continue to blog about your life, not only because I enjoy reading, but also so that in ten or fifteen years when Gage is graduating cum laude from college and thinking about getting married, that you can look back at all the stuff that you’ve gone through and rejoice!
I use blogger, and you can make the blogs there available by inviatation only, meaning you know EXACTLY who’s reading your blog. They in turn also have to have a blogger account with a valid email address in order to log into your blog and read it. I’ve really enjoyed using their server and I really enjoy being able to share things with people who I know are around to love and support me.
I have followed your blog since we met last summer in Chicago at the National PKD Convention. As I’ve read your posts, I’ve laughed, and cried, and learned – A LOT! I get a great sense of comfort in knowing that you are able to stay strong as you overcome the challenges you face. That being said – this post is by far the most upsetting of anything I’ve read. I suppose it’s easy to believe the world is basically a good place when you surround yourself with good people – those who love and support you in your family, neighborhood, PKD community, or online community. Unfortunately, the asinine behavior of some parents in your community – who by the way should THANK GOD they don’t have to walk in your shoes because they clearly aren’t qualified – has made it clear that the world is not always a good place. Whatever you decide, I support you because anyone who knows you is sure your decision will be the BEST one for your kids.
Julia, you are my hero.
Your blog inspires me daily. From your childrens strength, I learn to deal with my own issues with PKD. As a mother, I admire your ability to deal with whatever comes your way with humor and courage. Your words are honest, reflective and heart felt. Thank you!
I think the stigma is a) a generational thing (my stepdaughter has several close friends who have been in and out of mental hospitals both as children and now as adults and their “clique” doesn’t bat an eyelash) and b) fading even amongst the “olders”. Doesn’t mean it ain’t still there, just that the shunners and gossipers are on the wrong side of the tide. *shrug*
Information is always better than fear, secrecy and “shushing”. Anyone who uses said information against a kid is scum.
Julia,
I hope it is only for a few days………your break. I read your blog often and it helps. It is therapy for us all. Because not only is it worrying about a new kidney it is ALWAYS something. Bryce has an appointment with a cardiologist this week. His most recent echo showed a dilation in the aorta. Hoping this is just something that needs monitored along with all the other somethings. I don’t know what has transpired to lead to your break, but Wouldn’t it be nice if we could just keep OUR kids from all of this because we weren’t comfortable being around it either. However we can’t and our kids will be better for it. Your blogs help keep me grounded. You write often like I feel. Although I am not as great at writing it. Keep us posted. So glad Gage is home and doing better. That is certainly not the Gage I remember from the first pkd conference in california when we met. I know you will as parents keep doing whatever it is they both need to make it and do it well:)
Love
rachel
We’ve never met, but I admire you for your courage, and your ability to deal with all the “stuff” that surrounds you without asking for pity or martyrdom. I know you are in a tough position. You need to protect your kids and at the same time you have a great opportunity to help destigmatize mental illness. Only you can decide what is best for you and the kids, but I would miss you if the blog vanished. I agree with some of the other comments. Some people are just ignorant, but mental illness is less stigmatizing these days, sometimes. Among my 17 year old granddaugher’s friends there’s even a certain cachet in having been hospitalized! I guess what we need is just the right words to educate the ignorant and squash the mean spirited.
Ugh, just ugh, ugh, ugh. I am sorry that your well-intentioned writings have turned others against your children. I don’t know what to say except, “Mean People Suck”. Enjoy your break.
Hi, I’ve been a long time lurker and if I remember, I started reading your blog long before Gage received his transplant. I can’t seem to remember how I came upon your blog but I have enjoyed reading your thoughts and you have such an incredible sense of humor–much needed to deal with difficult issues in life (plus, i enjoy the the funny quotes your kids say!). I am really glad that both of your kids received kidney transplants and are thriving. Also, I am sorry to hear about your sweet boy’s struggle with his emotions and thoughts. I truly hope he overcomes his sadness and again becomes the happy, smiling boy he used to be! With all of your hard work and support, this will come to be– I’m praying for this. I have to say you are such an amazing mom who does so much for her kids and you are a terrific advocate! The world is a better place with someone like you!
I hope I’ll be able to continue reading your blog and please don’t let anybody tell you any different. I’ve read about other bloggers receiving criticism from commenters… and setting up a system where nobody can be anonymous to comment and such. If it truly helps you to share about what you all are going through, then please keep doing so and I’m certain it is helping so many others who may be going through similar situations. I’m not ashamed to also say I have had anxiety for a long time and am taking a SSRI and seeing a psychiatrist periodically. I would think the majority of us have issues with ourselves psychologically and nobody should judge that. We are humans but that doesn’t give some people the right to put others down when they are being honest and aim for the better. The people who put others down might very well have their own problems including psychologically, too. (I agree with other commenters above about educating the world– mental illness should not be ashamed of or feared, and the more information we understand, the better we can help others and ourselves, and the world would become a more open-minded place without criticism, etc. That would be ideal.)
Anyway, sorry if my thoughts are not flowing smoothly here but I also wanted to add that if you were a teacher, I’ve always thought you would make an excellent special education teacher! My parents are both special education teachers and they work with HS kids with all kinds of problems (behavioral, emotionally, mentally, learning disabled, etc.). They have been and still are strong advocates for me (which in turn has encouraged me to be a strong advocate for myself) since I am deaf. I was born at 29 weeks and was given Gentamicin within the first few weeks of life, which damaged the hair cells in my cochleas. My parents knew I couldn’t hear within the first few months and learned how to sign with me, made sure I received the best education possible, and encouraged me to achieve my dreams. So this brings me to say you have to give yourself a pat on the back! You are inspiring! Thanks to God your kids have you!
Now, don’t let my loooonnnnggg comments keep you away from your much deserved and needed break. Go and spend some quality and relaxing time with your kids and husband! Here’s a friendly virtual hug, which I hope is comforting!
I wish you all nothing but the very best!
So happy to hear your boy is home and so bummed to hear that (some) people are mean. Enjoy your break and know that we’ll support whatever decision you need to make for you and your family.
As a mom of a 12 year old daughter with ARPKD, I want to let you know that I really love to read your blogs. It is comforting knowing there are other families like ours out there. Your children have received lots of prayers from me – a total stranger. But know I am a stranger that is on their/your side. I am saddened to hear that others are using the blog against you and your family. I would hate to see your blogs end, but I know you will do what is right for you and your family! Take Care!
Shame on them.
I look forward to your return, Julia, however you decide to return. (please return)
You are an amazing mother, sister, daughter & wife. I’m so happy Gage is home & so sad & disgusted that you are being forced to protect your children by making your blog private.
There are so many parental lurkers that find solace & clarity in your posts that will likely be afraid to ask for approval to read your blog, that will lose insight becuase of the ‘high school’ immaturity of the parents that are directing harm to your children.
Again, I’m so happy that Gage is home. I’m sorry that you had to go down the road that you did to get here but thankfully you are here.
So many comments on this post. You know I will support you in whatever you choose, but I think it will be sad if you stop blogging for so many reasons:
1. You are an inspiration to moms like me
2. You are always so honest and open about your life
3. You have so much to share
4. Your writing is amazing
5. You enjoy doing it and it is probably therapeutic for you
6. Most people who read it are open to it and the other ones should just not read it!
7. You give moms like me hope
8. You make me feel lucky to be your friend
So sorry that on top of all the other stuff in your life you now have to deal with mean people. There was a movie out a few years back called something like Mean Girls and the author also wrote a book called Queen Bee Moms and King pin dads and an excerpt from amazon says: the book was written “to help parents navigate “the unspoken rules of Perfect Parent World” so they can find their own “happy medium between overprotective parenting and frightened passivity.” While she’s used to seeing through most adolescent subterfuges, she’s worked with enough parents to know their evil sides, too” I heard the author speak and it was really interesting.
Your blog has made me a better teacher. Some days it is hard to deal with students that can’t do what they are asked. But I think about things you have said and realize I may need to change. I also passed your blog to a friend that is having problems with their child. You are now helping her with your honesty. It is hard to believe that people can be so mean. You are in my prayers.
Dear Julia,
We have never met, but I know your husband and Gage through the cub scouts. My son is in the second grade at the same school, but not in Quinn’s class. I started reading your blog late last year. Heck,one Saturday I went all the way to the beginning and read the whole thing. You are an inspiration as a mom, as a person. Your experiences give me perspective of my own life with my kids/family. I have never made a comment on your blog until now, but I feel so strongly that you should continue. If you stop or make it private, you let them win. People need more understanding and less judgement! Don’t let them win. Keep going! You go!
I am so sorry that people are hurting you and your family. I too try to be very open about my own mental illness as well as my son’s in hopes that it will be more accepted and less “scary” for those that don’t understand. People have no right to judge. Until you yourself have had a child become a person that you do not recognize anymore you can’t possible understand the fear and sadness that comes with it. We just want our children to be happy and to enjoy their childhood.
I often tell people that I would much rather deal with another child with kidney disease and transplant then another one with mental illness. With kidney disease you look at the labs and know what is needed and the end result is transplantation. There is a set course. With mental illness there is no set course of treatment. It is all done by trial and error and it often takes a long time to see results. But my child with mental illness has suffered just as much as my child with kidney disease. And poor Gage is dealing with both!
Thank you for sharing your experiences with your family. You are doing such an amazing job of loving and caring and teaching your children. They are lucky to have you and I pray that people will stop judging and appreciate the miracle that your children are.
I am very sorry that this is happening. I have to agree with another person that posted and said that your blog has made me a better teacher. It is encouraging to see how dedicated you are to your children and their education. I hope you continue this blog and would LOVE if you would blog about special educators and how we could do a better job!! It is easy to think that I am doing a great job but I am looking from my side of the fence…input from yours would be invaluable! Good luck and prayers, that awful people will GROW UP!!
This makes me so sad! I just don’t understand why some people think it is okay to talk, judge, gossip about something so serious. I applaud you everyday for your honesty and openness of sharing your story. You helped me during one of the most difficult times in my life and that was because you were open and willing to share without judgement. I am just so sorry that you are faced with this too. I, too, will support whatever decision you make about your blog but I do hope that you keep writing!
Sending much love to you all!!
Kristen
I feel like this post is the cue for all of us lurkers to out ourselves and tell you why your blog is awesome, no matter what you decide to do. I’m a renal researcher – a scientist who does kidney-related research (some of it is PKD-related, but not exclusively). I met you briefly at a PKD Foundation meeting in 2007, and started following your blog regularly soon after that. I consider myself one of the Internets People. The day of Quinn’s transplant I could hardly concentrate on my experiment between constantly checking the website for an update, and praying for Quinn and for all of you. I am continually impressed by how you advocate for your kids, and love all the “Spoken in the Mutant Family Household” posts. But the real reason I read your blog daily is to remind myself why I do research. In the day-to-day craziness of it, sometimes it’s easy to forget. Gage and Quinn remind me.
I have a close friend who struggles with some mental health issues, and is surrounded by people who care about him without judging him. However, I’ve seen how much a thoughtless, ignorant comment can hurt, even when the overall environment is supportive. It sucks to an incredible degree that the stupidity of (what I hope are) very very few people is behind this, but, we all know you have to do what’s best for your kids. I hope there’s a way for you to continue blogging while still protecting them, but either way, I figured this was my cue to speak up and tell you that you are awesome.
I would be lost without your insight. I am a better advocate for my boys because of our friendship. From kidney failure to emotional health issues in my children. Thank you and I love you
I wish I could believe that those people will read today’s post and see themselves for what they really are – and then learn that a change is necessary. It takes seeing crummy people to enable the good ones to be recognized.
I know that you will do what is best for you and yours, and will respect your decision.
Virtual hugs all around.
It is a shame that you would have to deal with adults who have no compassion and to think they have children. How could anyone say anything negative about you and your children. I have enjoyed reading and feeling your pain and joy. I also know that your family comes first-protecting them and loving them is all that matters. I will miss reading and learning from your blog,but I would feel better if you stopped allow the public to read. You don’t need any distractions that bring you no good. I will always think of you each time I see my son, who is older and waiting for a kidney. Be Blessed.
You may not know exactly who I am, but my husband and I know Gage and Julian through Karate(used to be) and Scouts. We have two kids with special needs. (not PKD)… We’ve had similar experiences with rage, and sadness, at one point even suicidal thinking with our son. I know how heartbreaking it is. I also know about the fine line you walk between advocating for understanding, and protecting the privacy of your kids. On more than one occasion my own son has asked if absolutely everyone has to know.
Your’s and Julian’s courage is astounding. I told Julian last week that my heart just aches for all of you. I wish there was something we could do to help. I wish there were a way for me to see Gage, not off by himself and sad, but happy and engaged with other kids. My heart hurts for one so young, having to deal with so much. It hurts me when it’s my son, and it hurts me when it’s yours. I hope for all of you that this is the new beginning for which you long.
Sorry for rambling.
As evidenced here, your blog means a great deal to many people…most importantly to you. You inspire so many to push forward in the midst of their struggles and you teach us all how to have courage to face what comes up in our lives. You teach love and compassion with every word you write.
I am sad for those that cannot find strength through your courage and compassion through your honesty and love for your kids. Mostly I am sad for you and your family.
Shame on those that hurt you and your family – you know who you are!
I second you, Julia…”Shut the hell up!”
Hi there! I found you from Dawn @ this woman’s work. I can’t believe someone’s making this incredibly hard time worse for you guys and hope things get better. I hope you’re able to come back and keep sharing your story and hope things keep getting back on track with your family!
Julia,
I am so sorry that someone is forcing you to think about closing your blog. I just wanted you to know that I look forward to reading your posts each day. Even though our journeys with our children are different, we have a lot in common and I get strength and comfort from your blog. It is just nice to know that I am not alone navigating the world of special needs kid stuff. I think your blog is educational for all who read it and to think anyone could turn that into something hurtful or negative is disgusting. Thank you for sharing your life with all of us!
Martha
Hello Julia. I am so disappointed to hear your blog has caused you to doubt yourself and the eye opening, fascinating truths you share about living with children with mental and physical problems. My daughter became involved in your lives when she lived in Atlanta and your blogging helps us both continue to share in your lives; misery, disappointment, joy and all. Every day I admire your courage and ability to put into words the emotional roller coaster that is your every day life. I would miss it immensely if you chose to go another route and not blog but I also want you to do what is best for your family. You will chose the right route, you always do. I think of you, Julian, Gage and Quinn often even if our communication is sparse. Take care of yourself!
I miss you already
Hey Julia,
This is Carolyn, Quinn’s former Kindergarten teacher, I recently came across your blog b/c another teacher told me about Quinn’s transplant and I wanted to keep up to date with what was happening. I have been silently reading your blog from time to time to keep track of Quinn. I am so happy and relieved that she is doing well and I think about her and your son often. I know this is a difficult time for you all. Although I have taken a few years off from teaching to be with my girls, your blog has given me insight into the family life of my students. It has made me think about what goes on beyond their school life. Thank you for sharing and being so open. Give Quinn a hug for me!
Carolyn
Julia, Every day what you do is dispel fear. You tell the world it is possible to speak out loud about the scariest things, which in and of itself makes it all seem less scary. Whether you leave the particular virtual world or not (and I think not, because you will find a way to negotiate this ignorance, too), you are helping people to see. Thank you for putting yourself out there.
I am all about Gage thoughts today, and his peace.
xo
Hi Julia
I regularly read your email from Australia – where I am the Mum to two pre-schooler boys who came to us through foster care and who we have now adopted. The younger one in particular has some major issues with anxiety and the line you used once – “you are only as happy as your saddest child” has given me great comfort. You and your family are in my thoughts and prayers – thank you for your blog, I have certainly learnt a great deal, and gained hope and perspective from what you have shared.
Thanks
Karen
Julia – I’m sad that there are people who would talk and act in a way that would injure your children and make you doubt yourself and what you do here. There can be no doubt about the kind of person that would do that. I hope they realize how wrong they are.
I know that you will figure this out, as you figure everything out. In the meantime, please know that you are loved and admired for who you are as a person and as a mom. You light up this little corner of the internet – not because you’re perfect, but because you’re honest and because your dogged and determined love is a thing of glory.
Peace be with you. You are in my thoughts and prayers.
Julia,
When I heard the word “transplant” spoken by our doctors over our little 3 month old girl I immediately thought of you. I’d been reading your blog since before Gage got his transplant and you know what I thought? I thought, “Hey, okay, I can do this. I need to be her advocate and I know what that means.” My husband was a mess, but I had courage because I had read your blog.
I cannot imagine the ignorance and, well, there really aren’t words to describe how despicable a person must be to use what you write against your kids rather than gaining a deep understanding. If I were in your neighbors’ shoes I would use this deep understanding that you put out there for us to teach my kids about mental illness, what it does, and how to help. Frankly – and maybe this is bad on my part – but knowing a child was struggling with depression and other mental illnesses I would be much more inclined to let my children play and associate with that child. Had I thought it was bad parenting or some such I might just be more nervous about them picking up bad habits. But mental illness is something that I could easily talk with my kids about and help them gain deeper empathy and understanding about the world around them.
I’m so happy that Gage is home.
Emily
I want to thank you for sharing your story. My brother (now 40 years old) has been through significant childhood hospitalizations and multiple kidney transplants due to prune belly syndrome. I gain new insight and understanding of my brother’s life as I read about your childrens’ medical experiences and hospitalizations. I don’t know how or if your blog will continue…but thank you for sharing as much as you do on your blog. I’m rooting for you, for your family and for your blog.
Any words I have would be so less brillant than those left by some of your friends and readers in the comments that I’ve just read. You sharing your story and being so honest and open has clearly meant so much to people. I was touched reading the comments. And if I can put my request in too… *please* don’t stop blogging. My friendship with Cheryl, and her gift to Quinn led me to your story, and now Quinn and Gage kind-of have a special place in my heart, even though we’ve never met. Your story is powerful. Whatever you decide, though, I know your “mama-love” will be your guide. And there will continue to be space in my heart and prayers for your amazing family.
As Jill said, M P S.
Julia, your internet peeps love you, your family, and your blog; we just need a sign that reads “Mean People Keep Out.”
Very much feeling the love. Thanks everyone. Getting my blogging mojo back slowly.
Julia–Wishing you, Julian, Gage and Quinn peace, happiness, and smooth travel through this challenging time. And of course wishing you all great kidney function! You are all inspirational, and your honesty is truly moving. I would certainly miss the blog if that ends up being the best choice for your family, and support whatever you need to do. It makes me very sad , though (from what I am inferring you are saying has transpired), that some people have chosen to use your personal story in a spirit other than your intention . Sad, too, that sharing about medical challenges inspires, but when mental health is the issue, then ignorance, fear and prejudice arise…and you and the kids suffer. Best wishes.
Julia, I’m glad that you’re feeling the love, compassion and wisdom of your true admirers. It sounds like you know who is bothering you but I’ll just add that there are a few “trolls” out there who go around the blog-o-sphere deliberately spreading cruel judgments. It’s awful but it’s not personal. (Ask JustMe how this stuff let to our meeting.)
I’ll pray that you have comfort, wisdom and discernment abounding as you seek to refresh and be refreshed in your wearying journey to wholeness. Words matter.
The words of a man’s mouth are as deep waters and the wellspring of wisdom as a flowing brook. Proverbs 18: 4
(“Michal” is a Hebrew woman’s name meaning “brook.”)
From a special education perspective, I can see where some of these details could affect Gage’s chances for mainstreaming down the road. This would only be the case in a very contentious situation with the District, which hopefully you will never have to experience. I am happy to discuss this further with you by email if you have any questions. From a more human perspective, I have tremendous respect for you and your family and can see how sharing these experiences has undoubtedly brought a lot of comfort and insight to other parents with similar struggles.
Julia, I’m an occasional reader (sent your way by Dawn). I just wanted you to know that I’m praying for your whole family. That Gage would know peace that passes understanding, and that he would experience a quiet happiness that would overflow and be a blessing in your house. I’m praying for Quinn that she would continue to have a soft heart, and that she would be wrapped up in all the love of the people around her. I’m praying for you and your husband that you would be given strength and support. That you would walk in wisdom. I’m praying for little moments of joy and silliness for your family. Thanks for sharing your story, it brings a little extra compassion to the world.
Julia – I do not have children with special needs – I teach nursing students. I have learned so much from your posts about how health care professionals are perceived by those who need their help the most. Your lessons have helped me be a better teacher by helping me say “listen to your patients and their advocates”. I see health care from a different perspective because of you and your wonderful way with words. I fancied myself as a writer many years ago, but I could never express myself as openly nor as eloquently as you do. I owe you heartfelt thanks for helping me be a better teacher.
Jane (Caroline Van’s professor)
Julia,
I have checked back everyday wanting, hoping to see a post. I (we) need you. You are my therapy. I pray your family is doing fabulous, LORD knows you all deserve it. We miss you Julia, but totally support you in what you feel is best for your family!!
Love,
Another ARPKD Mom
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