One thing I know for sure is that I need time for myself. I am at the beach relaxing and sleeping and relaxing.

The thing about living with the stress of kids who have special needs is that there isn’t much time to be by yourself as a parent. Or if you have time to yourself you have to manage necessary required items for the kids – like insurance, medication, medical appointments and educational assessments and monitoring.

Lately with Quinn’s transplant with the increased appointments, Gage’s unstable mental health/behavioral issues and of course, the extra educational appointments there hasn’t been much time for myself or for us parents as a couple and after a while is gets very draining.

Sometimes it feels desperate and lonely in my world. Like there isn’t anyone else that feels as desperate as I do to hang onto myself. Like I will lose everything about me that is recognizable. Today luckily, is not one of those days.

I’m better at doing things separately that make me happy than Julian. I sew, write, craft, go to movies, see friends, and vacation separate from the family. If I have any chance of being a good wife and mother I need to make sure I keep those things a part of me. An integral part of me.

I have to say, I don’t feel guilty for being here without my family. There are many mothers of kids who have special needs kids who sacrifice time by themselves. For some, the choice isn’t theirs.

There are things with my professional and volunteer work that I am changing or thinking of changing and this is perfect timing for being alone with my thoughts about how best to move forward.

I’m lucky to be here with myself.

Several months ago someone contacted me telling me that they wanted to send the kids a book about a dog that had to have a kidney transplant. The dog’s name is Rudy. The book is Rudy Gets a Transplant.

As far as helping prepare classmates, siblings not affected, and of course, kiddos going through transplant, I’d have to say it is really great and does a superb job for all the parties involved. I read it to Quinnlin’s classmates and they seemed to understand it and had great questions after the reading. It runs circles around anything the hospital has given us for the kids to read (a book and coloring book the kids absolutely hated and made me throw to the donation pile last clean out) so I’d have to recommend it. It’s a positive book with cute illustrations by a child. It’s not too heavy but deals with meds for life and doctor visits before and after. Quinn likes it and can read it by herself but it’s not too juvenile for Gage’s age range either.

The author (Stacy Raye Waibel, 2x transplant recipient by the way) didn’t ask me write a review or anything, she just sent the kids the books. I’m going to buy a few and get them to Ginger, our Child Life Specialist, for her to use to prepare patients and their sibs and friends.

I am just putting this out there because a lot of parents of kiddos with kids in need of kidney transplants read my blog and so this is just a little tip, a little public service announcment, if you will. It’s a well-spent 10 bucks for those that purchase it.

We hear those words a lot.

I know everyone else involved with a crisis hear that from their family and friends too. But I’ve learned over the years (honestly it’s coming up on 8 years) to take the help. Find something for people to do, because:

A) It HELPS.

B) People who care about us want to help, and it’s a gift to them (I’ve been told) as much as it is to us.

C) It HELPS.

This is going to be a long entry. Sorry about that, but I have to cover a lot! A lot of help looks like a lot on paper (and blog posts)…contacts, timing, logistics, links.

Food

Let’s all hear it for good food. It’s one of the last things you have to think about when you have to deal with surgery, schedules, work, dog walking/dog poop, cleaning, laundry, etc. Because you always think, well, we can just pick something up. But then you end up eating fast food but you have no choice because you can’t go linger in restaurants having a leisurely meal.

So, here are options:

A Dinner A’Fare - they are nice enough to have taken our names to collect credit card donations on account for us and for our kidney donor. This is the kind of meal place that you can order fresh entrees of your choice, freeze them, pull them out anytime you like, you know. All the rage. We’ve used them before and they are great.

Carol Rice is the manager, 770.934.1140 – she’ll have accounts under Julia Roberts and our donor Cheryl Thomas. You can donate any amount and when the total hits a certain spot, we can order 12 dinners of our choice. ($150 for 12 dinners for two people). Now listen! This is important! If you have to pick to donate to either us or Cheryl, PLEASE pick Cheryl. Granted, her husband Steve is the family cook, and the two teenagers eat only pasta and peanut better, but Steve is going to be caring for Cheryl…peeling her grapes, getting her pain meds and he’ll be busy waving palm leaves in her direction. So he needs help! Their coordinator (Thanks Susan) will order, pick up and deliver to them. Ditto with our Coordinator Carol (who probably regrets the day she moved cross-country before the transplant).

Instead of Flowers - awesome, awesome place. They provide an entire meal on a set day by the recipient. The best thing to do is call them 404.745.9380 or visit their website (www.insteadofflowers.com) and pay for a gift certificate – any amount. Do not think you have to buy a whole meal! Again, we’ll just use the credit toward something we want when we need it. They have both our names and will just keep a running total. Pick Cheryl! Remember Steve is busy fanning her with palm branches!

Homemade Meals/Goodies/Extras – if you are the cooking kind and want to prepare a meal for either family (again, PLEASE pick Cheryl!) I know it would be appreciated! I have the contact emails of our Coordinators who will work it out with us for which days. I know for us, we have extra family in for a couple of weeks from out of town, plus we have like 5 people doing overlapping Gage driving/pick up duty and I am sure that Cheryl’s family will as well and extra food around that we don’t have to plan is welcome, letmetellyou. For our family, maybe just a couple of meals a week through recovery…hard to say because we aren’t sure yet how many people will want to go the donation to the food places route. Carol will let you know for us and Susan for Cheryl. So email me or leave a comment and I will just send you the coordinator’s email addresses.

As far as extras…I know both families would appreciate healthy and unhealthy snack items. Cheryl will likely be in the hospital for 4-5 days, us 7-10, and you would be amazed how much the caregivers crave good (non-cafeteria) food. Fresh fruit/cut and prepared, cheese/bread, nuts, water, even smoothies are awesome. In the hospital we have a family room with a fridge and microwave at our disposal on each floor that we can use. They also have that good kind of round crushed ice. Great for diet cokes! Which are in handy vending machines, along with the snickers and especially helpful when they are drawing labs at 4am.

For us, things like that can come to the house as there is a lot of back and forth going on (that is the luxury of living 5 or so miles from the hospital).For Cheryl you can work that out with her coordinator.

Gift Cards from Yummy Places

A couple of restaurants near the hospital for gift cards for take out: Outback (oh my gosh their chopped blue salad is the best!), Einsteins Bagels and Publix, Kroger if that is your sort of thing.

For Cheryl, her family does most of their shopping at Walmart so those gift cards would be appreciated I am sure. I can give you an email address for Steve if you want to go the easy Internet route.

Notes/Cards/Packages of Love

Who doesn’t like getting anything with love attached to it? I will or our contacts can provide the addresses of each of us. So notes/cards of love are particularly most welcomed! Be sure to tell Cheryl how much her sacrifice means to us and how much her example to others has an impact on kidney donation awareness. You can send a note to Julian and tell him was a great husband and father he is while you are at it!

While Quinn is at Children’s she can’t have live plants or flowers in the ICU – for which she will be in for 3-4 days. No live plants after that. Cheryl can get flowers and such after the 1st day (I know Jody was moved to a regular room day one, where I went and watched her sleep and I cried at the end of her bed). I’m sure Cheryl would like some trashy reading material and Quinn likes just about anything artsy she can do while sitting down (obviously) to rest and recover. One of the funniest packages we got the first go rounds were bottles of hand sanitizer and antibacterial wipes and slippers for Gage. That clever Kirsten – she’d been through it with her own son, Luke, who has ARPKD as well.

Physical Help – At this point I don’t know of specific needs of Cheryl’s family, but in general we’ll let the people close to us clean our bathrooms and wash our dirty laundry (thanks SO much MOM). Our Lawn Fairy has been doing our lawn since January. We’d let him go to save some money and he saw the Dear Santa letter story on the news and just decided to help us out. About a month after we noticed someone was doing it I caught him in the act and he told me, fighting back tears, that Quinn’s story just touched him and he wanted to help. I was crying too after that conversation. Let me know if you need a great yard guy near us (Neal Rocks!). For me, if in the next couple of weeks you are thinking you are totally bored and want to come over and do something, let me know. I seriously will put you to work. I’m not kidding. Just ask my mom, Carol or Rachel, Leslie or Kathy. They will tell you like it is. I’m not ashamed to admit that I have no problem getting you to match our socks. Just tell me what day. I mean it.

Gage is going to be covered by the Auntie Village (seriously, 5) and a friend or two the first two weeks. Hopefully we’ll be home by then for Quinn’s recovery and I’m hopeful another parent can get Gage home from school so I don’t have to take Quinn to pick Gage up.

Just as a note for you about other people in your life that hit crisis…offer, but then DO NOT TAKE NO FOR AN ANSWER…just go and pull weeds. When FORCED to accept help, we will think of something helpful, I promise. Run errands: go to the post office, ship packages, pick up those few grocery items like milk, bread and toilet paper. Show up and take the dog on a long walk (they get very neglected.) For a friend or family you know having a rough time (especially one that is unexpected) those things really help. Remember when I told you that Linda, a friend of mine (and mother to our goddaughter, Tess) grocery shopped for us weekly FOR A YEAR. At the end of the week she would call or I would email her a list. Talk about helpful.

Financial Help – This is always strange to ask directly for help financially. I know I do ask for money for the greater good of PKD all the time (which clearly I don’t have a problem doing), but when we’re talking about it directly, it seems, well, to go against my nature of taking care of things inside of our family walls – taking care of the kids we have and all that. But here are some options, because many people have asked.

You can donate to the Walk for PKD in honor of Quinn. Or you can join us in November and ask 20 people for $20.

You can donate to Quinn’s uncovered transplant medical expense fund – which is new to us. She was just approved to have a “matched” funds account by the Georgia Transplant Foundation. They will match up to $10,000 that we raise as a family through June 22, 2010, so we’ve got some time. The first deposit we are making are monies that my Granduncle Charles Harding encouraged his friends to give us in lieu of flowers upon his death when Quinn was just itty bitty. We’d been waiting to put it towards something really important. I think this fits the criteria he had in mind. Quinn’s GTF Page has all the information you need. They pay bills connected to her transplant that are uncovered. This will be extremely helpful in three years when Medicare runs out.

If you want to help Cheryl’s family different that above, and I encourage you to PICK HER FAMILY, gift cards are appropriate. Cheryl has many, many vacation days that she will be using up for Quinn. If all goes as planned and hoped for, she’ll be back to work in about 3ish weeks. Let me know if you need their address and email address. I know they would appreciate it too. My friend Becky (from way back in high school) and she had a great idea for gas gift cards, too. We’re close to Children’s but Cheryl and Steve live a good ways, so I thought that was brilliant!

Thanks for all of your support. The calls, emails, comments, tweets, and regular face-to-face offers (like the good ole’ days) mean more than you will ever know. You all really do help restore any loss of faith in humanity. You rock my world. Those I know personally and my Internets people.

How what that?

And just for your viewing pleasure…this was taken of Quinn and Cheryl, bug collecting just 2 months after Gage’s transplant…what a good potential kidney donor, even then! She’s drinking water.

When you are caring for a couple of sick kids it means you have to be in front of a lot of health care professionals. Doctors, nurses, assistants, insurance staff/accounting, technicians, clerks. You come into contact with a lot of people and a lot of personalities.

On any given week we’ll see 15-20 people in the regular care of Gage and Quinn. When the situation calls for more care (um, like, you know, a KIDNEY TRANSPLANT) there are just more people (and paper work and tests and results) to navigate and manage. As in life, you don’t click with everyone you interact with on a daily basis. People rub you the wrong way (you rub people the wrong way) and they are dismissive and insensitive. Some are dismissive in a way that is condescending. Which can be both infuriating and eye-opening. Because that probably isn’t going to change on the 2nd, 3rd or 20th visit so it’s best just to find a way to deal.

What I want for one of my kids doesn’t always line up with what their health care providers believe is best for them. And that’s okay. But it’s not the last word.

That’s why they invented The Second Opinion.

It doesn’t matter what the issue is; it is your business, your right and your responsibility to get your questions answered. That is why there is a 2nd opinion.

Getting along with everyone, everyday just isn’t possible, you know? Sometimes you can’t change providers; the options are limited in your area, your hospital or specialty and you have to work with who you’ve got. It goes back to intuition. Follow your intuition. Always.

For my kids, it’s my responsibility to make sure I follow my intuition no matter who is providing care – from front office to doctor. Sometimes I have to be creative in managing all the situations. Sometimes it is okay and right to push back. And you know what happens? People get pissed off. And you know what else? I’m okay with that. Because when I’m tucking my kiddos in bed, never, anywhere in my thinking about the day behind us is one thought about who I might have pissed off while being their advocate.

An email found its way into my inbox today and reminded me of photography services offered (for FREE) to people during difficult and joyous times in their lives.

www.celebratingadoption.org – (this has music) This organization offers sessions for families that are created through adoption. I don’t know anyone who has used them, but they list an awful lot of photographers across the world. I immediately thought of my friend, Dawn, who is in an open, domestic adoption with the first mom of their girl, Madison. I know Dawn, her family, and Madison’s first mom would take the most wonderful photo. I can almost see it in my brain.

www.flashesofhope.org – This group offers sessions to sick kids, their families and friends in sessions in hospitals. I have a friend (the infamous P who I mentioned months ago because he was near death in the ICU but pulled through) whose son had this session in the last several months and in the magic that is post-photo computer enhanced, they removed his feeding tube.

www.nowilaymedowntosleep.org – Sadly, not all pregnancies and births are those that end in a baby coming home. These photographers will come to the hospital when there is a pregnancy in crisis, and the baby is sill born, not expected to live or extremely ill. I have friends who have had ARPKD babies that have died who say they treasure they have photos of their babies. If you can, look at the gallery, they are amazing photos. Sad. But beautiful.

Ever since I can remember on the day Quinn was diagnosed with ARPKD friends and family surrounding us with care and concern. We were bombarded with calls, emails, cards and letters full of love expressing how sorry they were that the Quinn was diagnosed and then three short months later the same love came in when Gage was diagnosed.

Every so often I look back and read some of the notes from those early (and not so early) days. I found and continue to find comfort in every one of the sentiments that people have shared with us. The overriding thing I see in all of them is the love they have for our family or in some cases, for the people that didn’t know us personally, I find the love they have in their faith; hoping to share some with us when we aren’t so sure we have enough.

After the flood of support during particularly stressful times of diagnosis or new symptoms or treatments when the shock settles down a bit and we got (or get as the case may be) into a new routine I’ve found that friends and family deal with our situation in interesting ways.

When we are in a "normal" phase of the disease progression and we get on with living life as a family of four people in our lives also move on to a phase of normalcy with us. They don’t particularly like to bring up or inquire about how things are going. I know it makes some people uncomfortable when we talk about our daily life with a progressive disease but for some of us parents, we weave it into our regular conversations because it is a significant part of who we are as a family. We can feel it from you when you don’t want us to talk about it. We know you would rather not; maybe you’re thinking if you don’t talk about it that we will get a reprieve from the daily grind in the arena of raising sick kids.

But you should know. It never leaves us.

There isn’t a day that goes by that we don’t compare ourselves to other families that have healthy children and wonder what it would be like and long for the carefree days before we heard the words "polycystic kidney." There isn’t a day that goes by that we don’t wonder how the kid’s disease will impact their lives as they make their way into adulthood. There are very few days that we don’t feel the impact financially. There is always an underlying current of worry if they will live to graduate high school and college and if we’ll see them marry and have children.

A few moms I’ve been conversing with asked me about this; if I noticed friends and family that can’t deal with it and don’t want to acknowledge it.* Even when our life seems stable, sometimes we just need to talk about our life with special needs kids. Sometimes we don’t need a long discussion, but we need for you to acknowledge it. It’s okay if you don’t know what to say. It is enough for you to say: "I don’t know what to say, but I love you and I wish you weren’t going through this."

Please don’t be scared to talk to me about the kids’ disease. Trust me, whatever you ask or say won’t make me think about ARPKD more than I already do.

And by the way, if I forget to tell you. Thanks for being there to listen. You have no idea how important that is to me.

*If you know me AT ALL you know that I don’t have a problem stalking my friends and family and talking about our life with ARPKD. Obviously! And I have many, many wonderful people in my life that let me talk their ears off about anything that suits my fancy. So, don’t worry, and don’t start sending me notes and calling to see if I’m okay!

I had a meeting with a new speech therapist at Gage’s school today about his motivation (or lack thereof) in speech therapy. He has two sessions a week for 30 minutes each and there are two different therapists.

She mentioned several times that research shows that repetition in repeating the correct pronunciation is the only way Gage will improve and if he doesn’t get motivated soon, we should consider taking him out of speech. I don’t know if it’s really fair to judge Gage’s motivation (she characterizes it by saying he doesn’t try hard enough – he participates, but just enough) because I think in this particular situation she’s a new person in the picture and she’s not been able to be consistent about the day, time or location/room of therapy or who is with him in the session and Gage is a consistency hound. So, in theory he hasn’t had repetition in the delivery of therapy.

I just found that funny.

Honestly, I’m probably ready to let it go if we need to – I mean to say if he’s not progressing because of lack of motivation (I think she meant enthusiasm). He must be terribly tired of therapy. Of course, this could hurt his confidence as he gets older. It’s his R sounds and some L sounds. Plus, right now we have bigger things to tackle that we can be focusing his energy on.

She’s going to try for the consistency thing and we’ll reevaluate soon. It’s a plan.

This all got me thinking about the amount of people that are in and out of Gage’s life that have to do with his development and disease/disorder. I don’t think any of the people that are on this list realize the amount of people that Gage comes into contact with because all they (mostly) see only their one aspect. It’s a crazy amount of people, really, for an 8-year old and a high percentage we see on-going. This is just a list of people who are involved because of PKD or OMA. Over the years and currently, here is a list of Gage’s complete care team (less regular teachers and pediatrician)…

• 2 Neurologists
• 7 Occupational Therapists
• 3 Physical Therapists
• 1 Vision Therapist
• 1 Developmental Pediatrician
• 6 Speech Therapists
• 5 Nephrologists
• 3 Transplant Coordinators
• 40 Nurses (?)
• 2 Social Workers
• 3 Hepatologists
• 1 Urology Surgeon
• 1 Nephrology Surgeon
• 1 Psychologist
• 1 Chiropractor
• 10 Dialysis Nurses/Assistants
• 1 Orthopedist
• 1 Casting Specialist (for foot problem)
• 2 Special Ed Teachers
• 5 Tutors/Special Ed Assistants
• 2 Ophthalmologists
• Dozens of Residents/Interns (that have been brought in the exam/hospital room to touch the kidney/spleen and look at the eyes)
• 10+ Evaluators for Special Ed Services & Therapy Services Outside of Education System

If you have a special needs child, get ready to make a lot of new friends (and buy a lot of holiday gifts). Just warning you.

Raising kids with special needs isn’t for sissies.

There is the possibility every single day that a new challenge relating to a special need can send your day in a different direction than you planned.

There is always something to watch. To monitor. Last week and this week it was a med change with extra labs. Extra calls to the team. To the pharmacy. There are clocks to watch in order to set appointments and get to them. There were schedules and fun and lessons and therapy appointments to cancel, change or keep. There were tear soaked cheeks to wipe and comfort to give.

This week there are IEP (Individual Education Plan) concerns and assessments to arrange. Quinn is being assessed for vision functionality (how her OMA impacts her learning and social skills) and Gage for adaptive technology (keyboard). Permission to give, the forms to sign and return. There are impromptu meetings to be had to address concerns. There are so many things to watch. All the time. To make sure everyone is doing what needs to be done to give the best possible chance for health and education for the kids.

And it’s exhausting. Raising a special needs child (or two) requires a willingness to be flexible. If you have a chance to make it all work, you have to be willing to be many things to many people. Even if it is a forced willingness.

I spoke to a few ICU nurses that are in school to become Physician Assistants about our ICU experience and it had me remembering all kinds of things I had forgotten about Gage in the hospital. I wanted to jot them down before the memory fades more.

I wish I had known…

• That Gage would be pissed after surgery. Completely pissed. I expected him to be upset and crying but he was mad! Mad at us? I have no idea. He did say in those early hours that the doctor who did it to him was mean. And he asked why he couldn’t just "go back on dialysis."
• That it would be hard to be in the ICU with Gage doing so well. It just didn’t dawn on me that the energy of so much sadness might be felt inside our room sometimes.
• I should have toured the ICU with Gage before his transplant. It was a little shocking I’d say, having never been in the ICU with either of the kids before. There was no way to prepare really, but it might have helped a little for us to see it before. And I know it would have helped Gage to visit it before. I know I never thought of asking to see it. We certainly had time. We had 12 days to prepare and were there at least 6 times for dialysis anyway.
• I would become completely sleep deprived. I have no idea how much sleep I thought I would get (and I can and do survive on little) but I thought it would be more.
• That I would gain 15 pounds.
• That no matter what there was no way for me to feel rested and clean. And that Gage was going to smell bad and that his teeth would be layered with goo, and that his breath would be horrible! And that I wouldn’t even care.
• I would grieve as well as celebrate. I wasn’t prepared. I wasn’t prepared that I would feel completely alone with this emotion. Even parents in similar experience.
• That Gage would only need about 1/4 of the items I brought for him. I should have packed for him, then only brought 1 small bag.
• That it was possible to feel equal parts happiness/fear during the surgery.

Let’s talk about splitting up duties when you have sick kids, shall we?

Before the Kidney Debacle, Gage only had that little eye problem called OMA we were sent to specialists regarding his development. He was nearly 18 months old when we started the process of a complete evaluation for fine and gross motor skills and speech. Over the course of a couple of weeks he was evaluated several times and there were multiple reports coming from 4 different specialties.

At the time Julian was traveling for Big Corporate High Dollar job every week usually Monday through Friday. It wasn’t ideal, but at the time I was working a lot less than I am now. I had a few clients and they kept me busy about 15 hours a week. Back then, Gage was in a church morning out program about 8-12 hours a week. The schedule was perfect for me as I enjoyed both being a SAHM for most of Gage’s day and owning my own small little business. I felt lucky.

The team recommended a care plan that included seven 1 hour appointments a week – two speech, two occupational therapy, two physical therapy and one vision. We had appointments on 4 days between Monday through Friday. I’ve written about how emotional it is to have health care professionals line up to tell you about all the deficits in your child. Although his actual age was 18 months, they were placing him at a 6 month to 12 month old developmentally. To say the experience was overwhelming at the time is putting it mild.

During this time Julian handled all of the paperwork relating to medical issues. Because our insurance only covered 60 consecutive days of therapy we applied for a waiver to get Medicaid. It was approved and we were relived as Gage’s therapy cost over $40,000 the first year and decreased over the next three years, with the exception of vision as it was a free program covered a state program for the visually impaired.

Soon after Gage started therapy Julian quit the Big Corporate High Dollar job and began selling for my our little company. There was a need for marketing services for the industry he was in and we took a leap (a very big leap) that we could make a go of it, get him off the road, and make enough money to support our family.  His dad was having health issues at the time, so the timing was right. While on temporary insurance I found out I was pregnant with Quinn.

For a while during this time while we were getting used to working together Julian got more involved in Gage’s care but it became difficult because one person didn’t know the whole Gage medical/therapy/developmental story. While we both went to major appointments we didn’t both go to each therapy and follow-up appointment so we were relying on each other to report back every detail and it simply didn’t work.

Then Quinn was born and life as we knew it now revolved around kidney function and developmental talk (at 4 months old Quinn started therapy with 5 appointments a week and Gage was reduced to 4 or 5). There was no way to split of the responsibilities with two children needing the same medical/therapy care, but different levels and have all the bases covered so I took the lead. We always tackled new doctor meet and greets and treatment discussions together but mostly I was in charge of driving the car for scheduling, financial paperwork and getting to and from all appointments.

It was just easier for us. We knew as the medical management grew more complicated it would be more difficult to wing it with two of us equally taking on responsibilities for the care. Nobody owned it. It helped for us to have one person as the main contact and that contact was me.

Although it is stressful to be the one that has all the historical data in my brain (and 4 + jammed packed 3" binders) and all of the responsibility of the management it is less stressful because we know it’s harder to miss something thinking the other person has taken care of it. That’s not to say Julian isn’t involved either — Julian does meds most morning and a lot of evenings. He’s met all the doctors and knows where in the process we are with testing and med changes and if something happened to me he could handle the management – Quinn’s hair would frequently look like crap – but the medical management of the kids? He’d be all over it.

So, my Tip for the Day for families new to the medical vortex that is raising special needs kids – have one gatekeeper, but a really good gatehelper.