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Sometimes Funny is All We’ve Got

August 3, 2011 in Featured, From Julia by Julia Roberts

When our first child was diagnosed with  developmental delays we didn’t know what hit us. We’d gone from having a perfectly healthy 8 month only child to one that was in 7 therapy appointments and “at risk” as defined by the state’s early intervention program.

Those were not fun times. While we were still acting as a regular family, we were focusing on getting used to our new normal. Which turned out to be not very easy. It did happen eventually and we were happy again.

But we didn’t know what we didn’t know.

A little over a year later we were faced with our new baby’s diagnosis of a life-threatening kidney disease and 3 months later our son’s diagnosis came. It was not a happy time in our house. In fact, I clearly remember doing anything but laughing or having fun…for a very long time.

That was the year I refer to as “The Fog” and I remember it well. Back then, before I was blogging at Kidneys and Eyes to release some of the pain and hurt and experience, I would send out batch emails to close family and friends to give them updates. Those emails were excruciating to send because I didn’t want to sound too depressing, but honestly? Things were depressing around our house. We were still getting our special needs parents legs firmly planted on the ground. So while I was kind of pretending to be okay, things became okay. It was a “fake it til you make it” kind of thing.

During that time my beloved and I would test out our funny bone on each other. We’d say something totally inappropriate outside the walls of our brick ranch home and slowly but surely we started to believe. We started to believe in humor again. It didn’t happen all at once; it slowly crept back into our lives.

Over the years as we cried about the progressing symptoms of kidney failure, developmental delays and bad reports all around us, we learned that we could laugh. I remember the night when I got a call on my cellphone telling me it was time to get our son in to talk about a kidney transplant; his lab numbers had taken a turn for the worse and stayed there. When I got home my husband took one look at me and he knew something was wrong.

The kids were eating dinner at the kitchen counter and while I was crying they were screaming for milk (or goldfish or yogurt) and we were both trying to hid our tears. I am fairly certain I sighed heavily and rolled my eyes because the kids have the audacity to ask for more to eat or drink and I said something like, “Ugh! We can’t even talk for one minute about dialysis and kidney failure!” My husband looked up at me and said, “What, don’t you think mortality and milk mix well?”

I agree, it’s not THAT funny, but it did come at a good time. We talked about how life just keeps moving on; the kids still have to eat. So, we just moved on through two kidney transplants (mixed in with dialysis, depression, mental health issues and trauma) and here we are, trying to get ready for the next crisis (which we know will always come).

Sometimes we make fun of our life and our kids to left off steam. Sometimes it’s because we need a laugh. Sometimes it is because some of the things they do because of their disabilities are really funny. Sometimes it is because if we didn’t we would cry.

I like to make fun of what we say and I chronicle it on my blog by titling certain posts with “Spoken in the Mutant Family Household” because it’s my way of embracing our inner (inappropriate) funniness (Sometimes about the kids! And their disease!) and our outward mutantness.

There’s hardly a better way to live this life than to laugh at it and that includes laughing with (and at) my mutant children. I have to admit some days it is the only way we can live this life.

Does humor get your through the day sometimes?

Markers of Time

March 30, 2011 in Featured, From Julia by Julia Roberts

I’m a fairly organized, detailed person. In fact, I’m probably borderline (ha!) OCD. This is all extremely helpful when parenting a couple of kids with special needs.

It also makes me want to record everything. That’s probably a good thing, right? I think I do it because I’m pretty sentimental. Plus, well, the kids have a life-threatening condition and so I feel like I have to. I have to.

One of the things I’ve noticed is that I can recall with certainty the date of nearly all medical events for my kids. Is that strange? I can almost tell you where I was when I received an important call (in the car when we learned my son would need EPO shots) or the details of a big visit to the hospital with one of the kids (the room color and temperature of the room where my son was diagnosed with a kidney disease). You know, little details.

I know I have my blog and scrapbooks at the ready so I don’t necessarily need to remember all the details, yet, I do. I think it is my internal way to honor their struggles. When I remember the details and can have long conversations with my kids about what has happened to them physically and emotionally I like to think that they feel like I was there; that they weren’t alone. In the isolating world of growing up with a chronic disease and learning difference I want them to know that I was there with them even though intellectually they know it.

A couple of times I remember haunt me. I think about what I could have/should have done differently. Many of of the time markers I hold on to are ones I can recall with pride that I (or the kids) handled everything the way I (they) should have.

A haunting: I wished I’d pushed harder one day before I did when my son had a horrible, painful surgery experience. It was night, he finally fell asleep but he was in horrible pain for a long time. It was his birthday. February 2007.

A good one: I worked around a doctor who would have allowed my daughter to go on dialysis but in a stunning turn of events they relented after a 2nd opinion and approval at another city’s transplant center. That happened in February 2009.

What are two of your time markers?

 

Finding Our Way

March 3, 2011 in Featured, From Julia by Julia Roberts

When the kids were itty bitty and we’d just found out that my daughter had the vision disorder her brother had and we found out he had the kidney disease it happened in a 3 month window.

It’s a time I always refer to as “The Fog” because I am not sure how I made it day-to-day. That period last about 6 months to a year, I’m not really sure. As the years went on the new of all the diagnoses and new treatments were still shocking but it didn’t take as long to return back to our normal. Somewhere along the way I became flexible. More flexible than I’d ever been.

When I say “somewhere along the way” I mean that years into it – maybe 3 or 4  years – was the time for me. I know that all of us have time markers that we remember when a flip switched. For me, it was when my husband had to hold down our son and I had to inject him with a medication what would make him feel better but would hurt. It stung horribly. I realized that sometimes things just get worse and it’s be better for me to go with the flow instead of expect one particular outcome.

That isn’t to say I don’t hope. I hope every single day. Sometimes my hope is noticeable some days it is not. I’ve just come to a place that I don’t hope so much and so high that if (and when) something crushes it, I can’t recover. That helps me. That’s the way I deal with this life. I’m smart enough to know there are a a lot of ways to deal with the ups and downs of medical and developmental special needs.

What are your coping skills?

 

Adjustments in Special Needs

February 23, 2011 in Featured, From Julia by Julia Roberts

We’ve recently been trying to figure out what we’ll do with our son for 6th grade. Well, that’s not exactly true, we’ve been thinking about it for about a year. Sixth grade is still month away but with private schools needing to know by April 1ish we needed to start looking in January.

We have a good option for our public school. It’s large though. The director of special ed is a lovely woman who came to our elementary school to meet with us and discuss our son’s IEP/needs. She didn’t see any reason why they couldn’t serve him there. We also visited a private school (to the tune of $22,500/year) that is for students with learning differences. My son had a lot of anxiety over our discussions and it manifested itself in self hatred talk and thoughts of harming himself. It was with 100% certainty that I knew the root of the anxiety.

Anxiety is a tricky thing in our world. With delays, mental health issues and the fine balance of keeping things from exploding at any given time I thought it’d be good for get him over to the middle school to see what it was like. He was  resistant to going to a private school away from kids he’d know but after visiting the large school he’s open to another school choice. When we left the building he said, “No, it’s too confusing.” When I told him one of the schools we are looking at has just 8 kids in the 6th grade he smiled and said, “Yeah, I’d like a small class like that.”

He obviously needed to see it to adjust his thinking he had to go to the school where most of his friends will go. I still think he could but I’m not sure he’d flourish. He’d survive it but not without unique challenges of being different in a school of 400+ 6th graders. We’re still searching and I’m sure we’ll come up with something because we just will.

We’re a resourceful bunch, special needs parents are, aren’t we?

We have a world of adjustments we make from the second we hear of an issue/diagnosis to selecting where we’ll live to making decisions of what to push for and let go of with educators, friends and family. We’re constantly making adjustments. I know when you have kids you know you’ll have adjustments. Add in the special needs factor and it just makes things more complicated.

I am not sure when I realized my life would be about making adjustments about everything…including a style of parenting that isn’t necessarily 2nd nature, maybe a year into learning about the kids recessive polycystic kidney disease. When things are stable and moving along I forget the amount of adjustments we have to make nearly everyday. Adjustments have become so much a part of what I do, it hits me when we have a big adjustment.

Like middle school. Middle School + Special Needs = ADJUSTMENT. In a big way. I’m not ready for it but with special needs we don’t really have time to get ready, do we?

What’s your latest adjustment relating to special needs?

Welcome to this week’s new members!

January 14, 2011 in Around the Site, Featured by Admin Dawn

Welcome to:

Kathy Costigan: MOM of 3 kid. ages 20/11/10 1 with PDD. I like my life + I know this is a year that will be life changing, in a Good Way.

Elizabeth: Wife and mum of two. My son is 16 and typically developing; my daughter is 13 and has Phelan-McDermid Syndrome, ASD, ataxic-quad CP, kidney disease, seizures, GDD and a host of other diagnoses. I work outside the home PT at a Christian bookstore and am going to schoo full-time to get credentialled as a Special Education Teacher for moderate to severe special needs.

Kerry Murphy: I am the mother of a beautiful, charming and funny little boy with a form of muscular dystrophy. Most days are good, some days are great, and other days are plain horrible. I thought I’d do some writing and share my experiences; the good, the funny, the not so good and the downright ugly. All of us deal with challenging situations in different ways, and I believe that no way is better or worse than another. These observations, stories and hints are I hope helpful, sometimes funny, maybe sad but always honest. You may not have a child with a disability; but my guess is you know and or love someone who does. This blog is for all of us.

Heather Price: First and foremost, I’m a mom of AWESOME four year old twins, both with various special needs. Chananiah has classic autism. His issues are social and communicative. Reena has hypotonia, a speech delay, and probably dyspraxia and ADHD. Her issues are physical and auditory. She’s about two years behind with gross motor skills and wears cute little foot braces. While they’re in preschool or sleeping, I run two businesses (frankly, the stress of making a full time income in part time hours while having two special needs kids is starting to get to me a bit, hence, needing the support of this group!) ARE YOU LOOKING FOR PART OR FULL TIME WORK AT HOME? I am currently interviewing for positions with both companies. Call me at 216-870-3142 to inquire. (I shortened Heather’s bio because it was so long but if you want more info about her, her kids and her businesses, please click through the link!)

Sandi Jardine: I am a 51 yr old mom of 3 kids – my 2 sons are special needs (Aspergers and ADHD) and my husband has Aspergers as well. My adult daughter is NT.

Kelly: http://adventureswithtwoboys.blogspot.com/

Tiffany: Hello! I’m Tiffany. I’m 24, Christian and a SAHM to two boys- ages 4 & 2! I am married and we live in OK! My youngest son, was born with Spina Bifida: Myelomeningocele so I am continuously trying to spread awareness about this disability. My boys are my whole world! I’m into digital scrapbooking, photography & editing. And, I love to read, whenever I find the time to sit down to concentrate!

Kirstine: http://www.anderledesbarn.dk

Carrie M: I’m a SAHM to Maggie (11/08) and Molly (06/10 born with Down Syndrome).

Please head over and introduce yourselves!

Feed Me (and My Soul) Giveaway

July 19, 2010 in Giveaways by Julia Roberts


When we were working on our editorial calendar we were talking about how we wanted to feature Relationships somehow into the equation of raising kids with special needs. We didn’t only want to focus on marriage, we wanted to talk about the single parent dating, friendships, relationships between siblings. And that is how this week’s giveaway was born.

When our daughter was diagnosed with a life-threatening kidney disease and we were sent home with the words, “Take her home and love her as long as you have her.”, we weren’t sure what we were facing. We’d not seen a specialist and our hearts were breaking and our heads were spinning just taking in the information that our baby was sick.

Word of what was going on was sent out pretty quickly through email and a few well-placed calls to friends who spread the word. Within hours practically notes, flowers and food found it’s way to our doorstep. A day after we returned from the hospital a friend from church, with young children herself, dropped off a meal that included a potato casserole, with the note attached something about “comfort” which is fitting, because the casserole included POTATOES and CHEESE. Which, should be on an ingredient list somewhere called the Big List of Comfort Food When One is Sad. We cooked it and ate it during that first week we were home all the while my husband and I would pass each other in the house and one of us would weep. I remember the sadness of that week, mixed in with joy at the birth of our girl and I remember how that casserole fed my friendship soul.

Friends and family have always taken care of us in the food department when crisis hits. They’ve always known when to help us in the Comfort Food department, knowing when we needed fruit and when we needed something warm and cheese filled.

When Red Envelope asked me to review this personalized casserole dish I jumped at the chance to check it out during our Relationships week. When I cooked the very comforting potato casserole for my family over the weekend in my personalized dish I thought a lot about how food it the bridge to friendship sometimes and especially when someone offers it during a crisis.

I love the dish…it’s not too big and bulky. I could totally bring it to a party filled with something as a side dish to share. And it has my name on it! Don’t we all love something with our name on it?

So, with this, we kick off our Feed Me (and My Soul) Giveaway! Here’s the deal:

  • If you want a chance to win this dish (with YOUR name or whatever) you must be a registered member. We’ll pick someone…but it won’t hurt if you leave a comment that you’d love it! If you’d rather not have the dish, they’ll provide a gift code worth $50 for something on their site!
  • They want to give everyone an opportunity to shop with a 10% discount code for that is good for merchandise on Red Envelope: the promo code is: 10OFFRED (The promo code does not apply to gift cards or certificates, same-day or international deliveries, or third-party hosted products (e.g. wine, Bose products). The promo code shall be applied at checkout and cannot be combined with other offers or discounts.)
  • This Potato Casserole recipe can be found at our Recipe Swap Group! Just so you know, for this recipe I put 1/2 in my personalized dish and 1/2 for the freezer.

So, leave a comment on this, our first giveaway with Red Envelope! Then go and shop for something at 10% off using the code 10OFFRED! Thanks Red Envelope!

The First Hint

June 30, 2010 in From Julia by Julia Roberts

When my girl was diagnosed with (recessive) polycystic kidney disease at two days old I didn’t have much thought about what that meant in practical terms. I didn’t think about the added paper (and paperwork), medication, scheduling, labs and appointments I had to track, nor how that would affect my ability to focus on my home.

Dry Erase BoardsThe first time I realized that I would need to be the gatekeeper (and all that entails) was about 6 months into our journey with two kids who have special needs. When I had to pay over $50 to copy their files I knew there had to be a better way so I started binders for each of the kids so I could collect (for free) reports from all their doctors/therapists (time saver too). Back then it was so simple! One binder per child! Ha! I laugh at that mom from back then, who thought that one binder would hold it all, says the woman who now has 5 binders for each child.

I also realized that I was the one keeping everyone else on track with tests, lab work, appointments, funding applications, and the ever-important meds. In order to do that I’d have to find a better system because we were able to apply for state funding for both kids and they needed all the medical paperwork on their care.

One of the things we do in home to communicate as caregivers for the kids is a dry erase board in the kitchen. It was as much a reminder to myself for sick kid things as it was for my husband. I listed upcoming appointments, meds needed, therapy appointment changes and anything else related to the kids’ care. It helped. We don’t need it as much as we did in those early days because we have more established Roles and Responsibilities (honestly my husband said those words to me while discussing splitting up the kid items).

Dry Erase MarkersSo even though you don’t think I could make a dry erase board and markers from the Expo people work as a giveaway, you’d be wrong! We’d love to give you one of these boards and a set of these markers. But you have to be a registered member and a member of the Organizing…Specialized! Group. So head on over there and share your tips and struggles to keep all the special needs stuff that comes along with our amazing kids with everyone and our new group host, Julie Hough! (Julie gets the special needs parenting thing, too because she is one!)

The Wide and Swift River Grows

June 23, 2010 in Latest Articles by Julia Roberts

Gage and Quinn at the RiverI’m a pretty social person. I generally like to be around (nice) people. I like the give and take of friendship. I like to find new friends that I have common ground with and I like to build friendships. I work hard at maintaining friendships.

Single or married, I’ve always had time for my friends. Yes, it changed when I became involved with my then boyfriend and future husband, but I still worked hard at my friendships.

Then kids came and The Fog (a time I refer to as the year after our kids were diagnosed with a life-threatening kidney disease) set in and I wasn’t so hot in keeping in touch and connected to my friends.

But you know what?

They stayed connected with me. My friends surrounded me with love and compassion and understanding and prayers and tangible help. They helped by showing up to alleviate what burdens they could (grocery shopping, laundry, dinners) and so for a long time they carried me. The often still do carry me when I need it but I’m better at balancing the give and take nearly 9 years into our new normal life.

One of the perfect things about the Internet is the opportunity to widen the community of people who can be supported and who can support. Community is the basis for this site when it was dreamed up by my friend, Dawn and myself.

Our friendship grew out of the Internet. I’d found her through a maze of infertility blogs when she was adopting her second child. In one of the crazy twists of Internet fate we connected. Through watching her adoption through her blog, then working together in freelance writing, then through my kids’ kidney transplants and everything in between there that was laced with happiness and turmoil.

Other friends throughout our journey include a best friend, friends who behave like my sisters as aunties to my kids, sisters who are friends, friends who knew me when I had another last name, friends from an old neighborhood, friends from a new one, women with kidney-challenged kids, women who work for the non-profit we’re involved with to offer support to other parents like us.

All of the friends in my life have a unique space to fill and I in their lives. Our friendships are like a river; wide at some parts, narrow at others. Wide and narrow when needed but always flowing. Like the river that can be narrow for miles, friendships change because our lives change and our needs of each other change.

This site is the opportunity to build a broader community. A chance for us to welcome more information, resources, support and friendship into our lives. In the bigger sense of community I hope that other resources for families of kids with special needs join us here and that we can engage in relationships as important as my friends who’ve supported our family over the years.

Thank you, thank you for visiting, for registering, for engaging with each other and with me.

I hope, oh how I hope, that our river grows wide and runs swiftly.

The Dream Life

June 16, 2010 in From Julia by Julian Roberts

Julian and his kidsMany years ago as I tried to envision my future, I had a vision of a successful career, a beautiful wife, and healthy kids. I envisioned I would come home from a hard day at work to spend delightful evenings with my family and weekends filled with little league baseball games and piano and dance recitals. It may sound a little like an episode of Mayberry RFD but it is how I grew up and what I expected.

Although it all started in that direction when I met the love of my life, it all changed when we got the news that both our children had a rare kidney disease and an eye disorder that would not only require a life time of medical care but also put their lives in jeopardy. As we moved on we learned they have many extra educational needs as well.

I knew then that my future dream life would not be as planned… or would it?  What I have come to learn over all these challenging years of doctor appointments, hospitalizations, surgeries, lab tests, therapy appointments, teacher meetings, tutoring sessions, and counseling, is that I must work even harder to ensure that I have that dream life. My kids deserve it, my wife deserves it and I deserve it. There are many times that life gets in the way, that we get bad news from test results, bad reports from school administrators and counselors, but as a father and husband I must take time to leave the work issues, the medical/mental issues, the educational issues and find time to connect with my family, time to play and time to laugh. It is important that my kids and our family have the same opportunities, experiences and adventures as every other family.

This is a skill that does not come naturally for me and I’ve had to work hard to make the dream of a good family life a reality.

Is it easy to live the dream life? No. Does it always happen every day? No, but it is a goal. It is what I shoot for and work to achieve. I know I am successful when I look back over the past several months to see what first comes to mind. If I first remember doctor appointments, clinic visits and tears, then I know I have not been successful and need to try harder at the internal picture in my thoughts. However, if I l look back several months and my first memories are playing, laughing and adventures with my family, then I realize I have been successful at living the dream life.

Going Mental

May 5, 2010 in From Julia, Latest Articles by Julia Roberts

Gage, before treatment

This is a picture of my son Gage from a year ago. He has had a lot of emotional issues. He’s been sick nearly all of his life with polycystic kidney disease, had numerous medical interventions and been near death with failing kidneys so it’s no wonder there are some emotional issues. Who knows? Maybe he would have had some or all of the same issues if he hadn’t been physically sick, too. We can never know.

What I do know is that the mental illness diagnoses that many doctors are throwing around is just their best guess and all of those guesses are different. The one doctor we’ve chosen to lead the rest is the one who has said, “it’s really not about the label, it’s about the symptoms, let’s look at the symptoms and let’s treat him so he is as functional as he can be.”  That’s how we feel about Gage. We’ve always wanted to help him be as functional as possible. That includes kidney function and emotionally as he tries to find his place in the world.

Gage had a mental breakdown. There were weeks of explosive behavior and it culminated into an explosive event on the high end of crazy, at school of all places. It wasn’t the Gage we knew. It was a different Gage; one with crazy glazed over eyes, crazy behavior and crazy thoughts. Crazy. It’s a negative word when used with explaining mental health.  Why is that? It was all crazy. For a bit my son was crazy, yet it wasn’t his fault. I’m not ashamed to admit we needed help. I’m not ashamed of him or the labels they keep using to describe him. Loving him means we like all the crazy that comes with him.

Gage, after treatment

A friend of mine said recently, “Crazy people need drugs, man.” We are experiencing was we know is better living through pharmacology as another friend puts it. This picture? Represents a year of trying to find the answers to help him and represents some success.

I do use the words crazy and mental very flippantly. But I’m fond of everyone processing their own experiences in their own way, including my own, and using those words helps me dial it down to real; to my experience. I fear I wouldn’t survive this craziness with my own sanity if I didn’t find a way to make it feel lighter. Admittedly, I’ve come a long way from the day I had to drive away from the (mental) hospital after having committed my son. That terrible, hard, sad, crazy day, I would have never thought I would have looked for ways to make Gage’s and our family’s situation feel lighter, but the language is just one way I do.

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