There are many things that I loved about 2009 and many things that are not so great. I will not miss 2009. I’m happy for 2010 to be here and for new beginnings for our family. And while I am looking forward to 2010, looking back is good, and then I’m kissing 2009 goodbye. While 2009 was hard on me and my family personally, this year brought new life to my girl and brought the glimmer of hope for living again for my son. For those two things alone I’m grateful in spades.

1. Kids are resilient to a point. They can hold their literal selves together for a period of time that they have to, but then they can, and often do, completely fall apart.

2. Mental health issues for children are extremely hard to navigate as a parent. Especially when many in health care have a hands-off attitude. If you can’t find services on your own by sheer will or luck, you won’t find services.

3. Helping your 2nd child through a kidney transplant seems like it should be easier. In theory.

4. A sense of humor is still helpful through stressful times. It also helps that your husband is intuitive with diet cokes and your need for time alone.

5. There may be nothing that prepares you for the reality that your child wants to die or wants to kill themselves. Sadly, you can get used to the idea that they want to die. If you didn’t, you’d be crying in fetal position in a corner of your house.

6. Your faith in the basic goodness that lives in people can be restored. By kidney donation, support and love from people close to you and people you don’t know. Sometimes, the basic belief in the good, it is all that gets you through from one day to the next.

7. Naps are essential.

8. People come and go out of your life. Don’t fight it when they are going and welcome it when they come.

9. Never underestimate the power of down time with your family and the healing that is needed.

10. Never, ever underestimate the power of yourself to help end your child’s suffering. Sometimes it helps to remind people that everyone who can help should want the best for them, just like you.

11. Creating time for yourself (in whatever form that pleases you) is harder than it looks, but sweeter when it’s achieved.

Cheryl,

I know, lucky, right? I get to use kind of the same theme as two days ago on Jody’s post except there are 30 months before it.

Can you believe it’s been 3 months? I can’t. Each day while getting us all used to post-transplant follow up was long but the 3 months flew by. How does that happen?

Quinn(lin) is doing fabulously, as you know. The kidney, like I said before, can be a little temperamental (she likes her water) but all and all she is happy with Quinn.

Quinn feels fantastic! She is sleeping better than she has in years. She isn’t itchy, she can concentrate at school, she can play an entire day without rest and her personality seems to be blossoming. She’s actually quite engaging now that she has kidney function. I think I just thought she was more laid back. One of her therapists said the same thing about Quinn.

Her skin color is back. She’s growing again. She’s feeling better so she is happier. That is about as much as we could ask for, right? We are so lucky and so blessed to have you and your family in our lives. Not only because you gave my girl a kidney but because all along you and Steve have been huge supporters. We so appreciate that you two are two of the first to have enough faith Quinn and Gage would one day get the kidney transplants they so badly needed. Thank you for that because you have no idea how desperate we were for someone how loved us to believe.

Thanks for waiting for 3 years to donate a kidney to her and for your remaining steadfast in your belief if would happen.

We love you and your nearly always behaving kidney, too,

Julia, Quinn’s proud and grateful mom

A dancing girl.

With energy.

Energy to play an entire day without stopping, except to drink water

and yell  “I LOVE THIS DAY SO MUCH!”

The girl who used to be itchy and sad about that, she had sunken eyes,

we call her Quinn.

Quinnlin. Quinny B. QB. Smart. Strong. Beautiful.

There’s something healing about the beach, we all feel it. Even though it’s cold and we’re not exactly in swimsuits soaking up the sun, but we are soaking up time with each other. Except for a few hours to write (ALONE) and a trip to the grocery store (and to search for shoes for Gage), and taking Quinn for labs in another town, we’ve been together.

Yes, there’s been issues with Gage’s behavior, because his ODD and OCD never leave us, but all in all we’re doing fine. None of us are stressed and we’re letting the kids and the flow of the day lead us. Yesterday a few hours on the beach with an afternoon of legos and a tea party followed by work on a puzzle (oh, and Julian biked the kids to a bar with walkie talkies, long story) is an example of our day.

Gage has only talked about dying young once when I referred to future beach trips. He’s only talked about killing himself once but I think it was to try to get a reaction from me (which he didn’t), because the difference in his demeanor from past suicide talk was noticeable. It didn’t have his same desperation.

For the most part Gage and Quinn are getting along even though we are in close quarters (800 sq feet?) and they are sharing a room. Gage has even been helpful to Quinn, which Quinn has enjoyed beyond belief, so starved for her brother’s attention.

Coming here wasn’t only a good idea, it was a requirement for the collective mental health of our family. There is something about watching the waves hit the beach and something about watching the kids run at the edge of the water that seems so healing and natural. Not like medication and life-saving surgeries or IEP meetings and behavior plans, which go against the natural essence of the waves that allow us actually forget all that mess for whole minutes at a time.

I know I am not articulating myself very well but that’s what happens when you are flustered by the sparkling yet cold water staring right at you. Julian and Gage just left for a bike ride and I’m about to take my girl on the beach for some shell searching.

So I must go for now to the healing beach.

The trip to the little white house on the beach.

Healing has come.

Surprised by the depth of how much the beach was needed.

To learn to become a regular family again.

Peace.

Or peach, as I accidentally type each time I type peace.

Dear Jody,

I am not sure why I am calling the title of this post Lucky 33. Probably because I just like 3 and 3 together and well, it looks like a lucky number so it became Lucky 33. Thirty-three months of kidney function for a curly-headed, crazy boy who loves to collect a lot of things like post marked stamps, beer bottle caps, and useless broken appliances.

We do feel lucky. We are so lucky and blessed and fortunate and grateful for your kidney donation to him. Yes, Gage is a handful and there are days we grind our teeth, cry about him and for him and cringe at the caller ID showing it is a call from school, but he is our boy and we love him and we are so happy he is able to enjoy life off dialysis. Happy he is able to enjoy life. Period.

I asked him last night what he remembered about getting his new kidney. I told him that today was the anniversary of the transplant and I wanted to know what he remembered or what he thought was good about getting his kidney.

Like I said, CRAZY. Here are his top three:

1) I didn’t have to go to school.

2) I got to be away from Quinn for a while.

3) I got lots of toys.

Didn’t he want to remember that he doesn’t need dialysis? Or that he feels better?

“Oh, yeah.”

I guess the best we can hope for is for him to stay off rooftops, huh?

But I appreciate his being off dialysis and I appreciate his kidney function.So thank you. Thanks for the chance for us to freely leave for vacations because that wasn’t possible without moving mountains when he required being hooked up to a machine 3 times a week. And let’s not forget the havoc it played on his body, his spirit, his academics, his social life.

You are our Lucky 33 Charm. Love you,

Julia

Your gift is late, well, because it is. If it makes you feel any better, our new kidney donor doesn’t have one yet either!

We’ve been to see this Santa for 10 years now. The longest wait is about 10 minutes, but usually we can walk right up to him. He resides at a small mall around the corner, at least between 10-7pm, probably 7 days a week during December. We love seeing this Santa, although admittedly he’s been shrinking over the years, doctor’s orders he says to get healthy. He’s a lovely Santa who does a great job, and for two or three years standing behind the chair to hide from Quinn because she was having none of the white bearded man’s lap.

I present crazy tradition (Where Gage and Quinn say they know the Santas are fake) photo 2009, for which Quinn excitedly said, “I look like a teenager!”

And 2002

Merry Christmas if you celebrate it!

We are spending the next several days together as a family of four. Limited work schedule this week and no work next (we’re typically closed during that time) and so we are having a lot of bonding time. Bonding time for a family that has been pushed and pulled to the max during the last year and we are grateful to have this time together away from home.

Monday we were all on the (cold) beach looking for shells and the kids were in and out of the (cold) water and the sun was shining and I was just so grateful. It was all that I had envisioned this time together would be. I’m so grateful their borrowed kidneys are working and that we have this time with them.

I’m so grateful they are alive.

We’d been functioning as a family with a mission over the last year, but it was a hard, hard year. Our (fight) goal was to bypass dialysis for Quinnlin and hold Gage together in the emotional sense.

It was a hard, hard year, indeed. I will not miss 2009.

We were essentially in a heightened state of something over nearly everything this year and it affected us all in different ways. As parents, we moved together as partners with a shared common goal, but I can’t say we’ve been all that connected directly. Mostly because it is nearly impossible to steal away a great amount of time as a couple when you have kids with special needs – and we’re good at that usually – but even for us it was hard in 2009. It is also difficult because your thoughts are somewhere else…like how to pay for the insurance premium next month, or who you have to badger next to get things moving for a transplant, or how to keep your child from wanting to kill himself to in fact, keeping him from actually killing himself.

That doesn’t leave a lot of time to be a couple. The way that counts that we were were a couple in 2009 were common goals that centered around the kids. Each to do what we had to in order to keep our kids alive, off dialysis, new kidneys safe, them educated, and decently happy. I can’t say we do all of that flawlessly, but we do it together, each trying to be sensitive to the other person’s need to do it their way (I’m not so good at this).

The kids get all we can give them but they don’t see a great amount of it directly. Sometimes it is not enough. Sometimes we don’t play the amount of games we want to, we don’t arrange enough play dates, sometimes we don’t linger and read books as much as we want to, sometimes we don’t go out and about for activities, and we’re perhaps more inclined to have down time in pjs than we should. The kids sometimes get short-changed because they have special needs because we are a lot of times, special needs only focused.

That’s  a roundabout way to say we all needed some down time to reconnect. We are making big plans for 1/2 day trips that include looking for shells, visiting historic cemeteries, biking, hiking. We’re working on a 500 piece puzzle, making gourmet candy jewelry each day, and letting the kids lead if we get out of our pjs or not (as was the case yesterday when I took Quinn to another town for labs in her pjs and decided that was a good way to spend her day). So far we’ve gotten up early to watch the sunrise (kids’ choice, dang) and we’re watching the sunset each night talking about what flavors match the colors we all see.

I hope, for me personally, that this helps me reset my start button. So that each day I am not in a state of panic regarding the kids’ care and needs. The end of the year is a good time for that. Maybe we will also reset our family start button as well and remember how to function as a family not in crisis.

Quinnlin didn’t know I was watching her when I caught her dancing.

After I snapped it, she turned to me and said, “This is my BEST DAY EVER.” And later we laughed and laughed at the sand in her hair, about how cold Daddy was and about how we could walk barefoot in December.Tears hitting my face watching her dance in the cold water, so grateful to our kidney donors Jody and Cheryl for the chance to be here with my children.

The Santa Secret

My son learned the truth about Santa when he was in Kindergarten. For you die-hard Santa supporters this probably sounds like sacrilege. You’re not alone: the other moms in my moms group were appalled that I’d destroyed the magic of Christmas for my innocent child. But in my own defense [and believe me, I have been defensive about this], I didn’t actually tell him that his dad and I were the ones filling his stocking on Christmas Eve; he kind of figured it out himself. Ok, with a little help from me.

He has always been precocious and thoughtful, and it occurred to him one Christmas that flying reindeer and time travel required an explanation. He wasn’t the type of kid to be appeased with, “It’s just Christmas magic.” And my more specific “special reindeer food” was as unsatisfactory to him as it was to me. He wanted to know how, and I’ll admit my lame answers raised more questions than they answered. I just wasn’t into fostering the notion of Santa, knowing that one day I’d have to confess. Further, Christmas to me isn’t so much about the chubby red fellow as it is a celebration of the birth of Christ. So building up the image of Santa wasn’t all that important to me. Finally, if someone was going to get credit for all that store-bought joy on Christmas morning, it was going to be me.

Flash-forward seven years: My moms group friends all have 11- and 12-year-olds, most of whom still believe that Santa is the person who surreptitiously slips goodies into their stockings on Christmas Eve. A couple of these kids are now in middle school and are being ridiculed by other kids who know better. And those same moms who wrung their hands at my early indiscretion are now wringing their hands about their own predicament: how they will now — after years of earnest prevarication — explain to their trusting children that mom and dad weren’t quite on the up-and-up all those years.

I don’t envy my friends their upcoming conversation. This is the age when we’re also talking to our kids about puberty and other sometimes-uncomfortable topics. So adding this to the mix will probably be painful for parent and kid alike.

I plan to follow-up with my friends who successfully manage to enlightened their tweens without destroying their faith in their parents and everything else they believed to be true because my young daughter isn’t as questioning as her older brother, and I fully expect to find myself in their position in a few years.

By Lori Thiel

I was out of town then in town, now out and well, the blog got moved the back burner because well, I guess I needed a break, then my friend Lori – a real writer – gave me a post about Santa and it is spectacular, just like her, so I thought to myself, “How awesome, I can put off posting another day!”

So thanks Lori…I’m going to hit you up again. Maybe this week.

Julian and Gage studying

Julian: “So, is the rabbit a wolf’s prey?”

Gage: “Depends on how big the rabbit is.”

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.

Remember when he was happy? And he didn’t talk about dying young?

I do.

I want him back.