When you are raising a child with special needs and/or a chronic illness you have many areas in your life you have to juggle. Doctor appointments, school IEPs, medication, lab work, and insurance. Add on the regular life things like house maintenance, laundry (darn those kids can dirty some clothes) church activities, grocery shopping, and, oh yeah – work and some days you aren’t sure how you’ll do it all.

It’s nearly impossible to do everything that you have to do and everything that you want to do. You have to neglect certain things. Sometimes it’s hard to send or call with birthday wishes. Sometimes you are always a couple of days, or weeks, or even a month or so behind. The kids don’t get to have many play dates because that time and energy is used for therapy appointments, hospital trips for routine labs, and doctor’s appointments. As parents we don’t always get to do things that we’d like to because frankly, we don’t have the energy.

We want to celebrate our friends’ birthdays with dinner parties. At the drop of a hat we want to meet friends out for a family dinner or visit the zoo. Or volunteer more. Or maybe a leisure activity that makes us feel like society’s normal. But our jam packed routine most times won’t allow it, and then there’s the meds and Gage’s urine factor.

Even we are 2^nd tier. We’re usually behind in making our own appointments for things to take care of ourselves. (Um…listen up dentist receptionist – I know I need my teeth cleaned, you don’t need to call me again.) As much as we know we should take care of ourselves so we can take care of the kids, we put ourselves low on the priority list.

But I promise, you are not 2^nd tier in importance to me. You are the friend who’s birthday I didn’t acknowledge properly (recently there are a few of you!), the husband who doesn’t get nearly as many mushy cards as he should, or hot dinners for that matter, the friend who gets the late sympathy card, the church that could use my help more, the friend having trouble with her child who I wish I could support more by getting on a plane, the friend who could use an ear to listen, or the family or friend I just haven’t called to catch up. I’m sorry.

I promise. You are 1^st tier in my heart.

When Quinn was about 6 months old, 3 years ago this month, I was matched up with a pregnant woman named Kristen in the 20-something week of her pregnancy. She had learned that her first baby with husband Keith, had ARPKD and things didn’t look good. We had connected through the PKD Foundation because she was looking for information and support. Seeing as how ARPKD is so rare, support with actual parents of kids who have it is a bit tough to find. One has to search for it.

Kristen searched. And we began conversing on email. Mostly about her appointments and how the pregnancy was going, how the baby was doing. The doctors didn’t give her baby much chance for survival, as the kidneys were very affected by the cysts. The cysts weren’t allowing any kidney function, therefore there was little amniotic fluid and the baby’s lungs were in danger. There was a slim chance with medical intervention that baby Helen, named for her great-grandmother, would survive. Kristen and Keith never lost hope. And when she was born on May 24, 2002 they held her, sang to her, and talked to her. People visited to welcome her. For 34 precious hours they hoped. Helen died while her parents held her and their hearts were broken.

Helen’s parents had no idea what an impact she would make on so many people. They donated her kidney tissue to further ARPKD research that will help future ARPKD children. They didn’t know that the love and support of families and friends would help them through their sorrow. That those same people would help raise thousands of dollars for PKD research at an annual picnic honoring their first born. Helen’s mom and dad didn’t know what kind of impact Helen would have on me either.

After the private memorial service for Helen, much to my surprise, Kristen kept in contact with me. I had thought that our correspondence would end, thinking that it would prove too difficult for Kristen to be friends with someone raising two children with ARPKD while mourning her sweet baby. Remarkably Kristen was interested in Gage and Quinn and how they were doing.  Among other things, we conversed about the difficult time of mourning their loss. She told me about making it through the first Father’s Day, about the garden Keith had started in Helen’s memory, about the grief they were working through as a couple, and about how she was coping personally.

A magical thing happened during late night email writings about grief and God, packages for Gage and Quinn and occasional phone calls. Kristen and I became friends. She was interested in every test, appointment and med change. She, better than most people I know, understood the fragileness and uncertainty of ARPKD. She encouraged me to be honest about how I was feeling, and in doing so, helped me face my fears about losing my children. When our family’s challenges seemed more than I could handle, I often thought about Kristen and how she would have been glad, even thankful, to be taking care of Helen’s needs had she lived with ARPKD. I became more grateful and appreciative of the many gifts I have. I was witness to Kristen’s faith, strength and resilience and I learned from her. I’m inspired to be a better parent, a better advocate for the kids and a better volunteer to help raise awareness and funds for ARPKD research. All because of Helen.

Last March marked a happy occasion with the birth of Kristen and Keith’s second child, Josie (Happy Birthday Josie!). What a beautiful baby, just like her sister. Josie is a bubbly, big cheek smiling, full-of-personality, playful girl. She is the center of her family’s world. And the world is a better place with her in it. 

Helen, in her amazing, short life taught two women whose paths would have never crossed, that lives intersect because of chance, but are intertwined because of love. Josie, in her 1^st amazing year, has taught two women to embrace normalcy when it occurs.

Kristen, thank you for the commitment you have made to our friendship. You have no idea what it has meant to me to have you in my life.

Helen and Josie. You lovely sisters. Thank you for your beautiful, teaching lives.

I’ve struggled with this post for a long time. I started working on it months ago when I read something someone wrote to people in her life while she was battling cancer. I would tell you who that is, but I don’t remember her name. It was an online journal, much like ours. I remember that her honesty struck me. I’m using her idea, but writing it from my perspective. So the credit goes to her…whoever she is.

It was hard for me to write it in a way that didn’t sound self-serving, like I wanted people to do more for us. This is not the case. We are surrounded by a loving, giving, group of people (you many people know who you are) who care for us and help us with so many things. I started writing this so that people would understand what is truly helpful for a family in crisis or for a family living with special needs kids, who simply just need some extra help every once in a while. I’m writing this using “I” but you could put any number of names to replace it. It’s your neighbor. A member of your family. Someone you know at work. A church member. Your friend.

1)       “Let me know if I can do anything”

We hear this all the time. I believe that it is true. If I call you, you will do anything for us. I know this. I’m not sure why I don’t call you when I really need some help.  Let’s be honest. I won’t call you and request that you do some laundry, come by and help me do a quick clean on the house, or pick up some milk and eggs and swing them on by on your way home from work. I know you have lives of your own; you’re busy with jobs, kids, etc. I think that is why I don’t call. I feel guilty that I’ve asked you to help me when you have your own things to do.

But if you really want to help me: call me. And insist that there must be something you can do. Don’t take no for an answer. Make a specific offer. An hour of babysitting, a simple dinner, a grocery store run since you will be there anyway, run an errand. If you have the time, an extra hand at a kids’ doctor’s appointment would be awesome – so I can actually talk to and hear what the doctor has to say. Or call, ask what is a good time to come by and come. Do anything. We really appreciate it. I promise. 

2)       Simple words.

We really do appreciate to know we are in your thoughts. Send an email, or a note, or leave a message and say just that. We feel isolated most of the time because few people we know in our day to day lives can truly understand what we are going through - what a strain our situation is on our family unit, our marriage, our emotional selves, or our finances this has been. Sometimes we don’t answer the phone because we just can’t talk about whatever bad news one more time that day. But it feels wonderful and comforting to know that we are in someone’s thoughts and prayers. Really, it does.

What to say:

Thinking of you.

I’m praying for you.

I’m praying for ________ (fill in the blank with something specific)

Anything that shows an interest in upcoming tests/evaluations or tests/evaluations already in.

You are doing a great job holding it together…how are you holding up?

I understand (if you really do).

I can’t understand what you are going through, but I want to.

I’m so sorry you are going through this.

3)       Complicated words.

I know you don’t know what to say to me sometimes. I know it’s hard to hear me talk openly about our challenges, and it makes you uncomfortable – I see it in your eyes. Please know that I need to talk about it. Talking about it helps. I need to talk about the tough issues. Our uncertain future. It’s ugly to talk about the kids’ mortality, but sometimes I must. It’s our reality.

When I do have to talk about the ugly issues, please don’t tell me that God choose me because I could handle it (although my disclaimer here is that some parents believe that, but let them tell you). Some days I don’t handle it very well. Plus, I don’t honestly in my heart believe that God chose me. I believe that God knew what would happen in our lives and God made sure we were surrounded by loving people to help us find our way.

What not to say:

God wouldn’t give you more than you could handle.

It’ll all be okay.

They’ll be okay.

You should take better care of yourself so you can take care of them. (trust me, this…I know)

You need to make sure you take care of your marriage.

4)       Please don’t feel sorry for us.

We really work hard not to feel sorry for ourselves. This takes practice: the art of not feeling sorry for oneself. Sometimes we need to have a little self pity, but we don’t want the kids to feel or see any of that. They have enough problems. Our main job on top of keeping them as healthy as possible for as long as possible is to give them as “normal” lives as possible. We have to do that between fitting in meds, therapy/evaluations, doctor visits and testing, etc. They still have to have fun, play, have friends, parties, color and be kids. It helps us to accomplish those things when we’re not feeling sorry for ourselves.

5)       Celebrate with us.

It’s nice when people know where we are in the process of treatment or testing. Pay attention. Inquire about it. We like to share the good things too. We like to talk about the successes. You might not think that Gage learning the alphabet is that big of deal – after all, he is 6 – but we’ve been working on it for over two years. Or that Quinn just recently mastered walking down one step without help – she’s three – it’s been a long physical haul for her. We like to talk about labs that show the kids are stable. It sounds silly, but some of the conversations I remember the most are the ones where friends and family were genuinely interested and excited about a great lab or small milestone reached.

In closing, please know that we get busy in our lives and aren’t always the friend or daughter or son or sibling we should be. We don’t always get to do what we want because we’re controlled by the kids’ medical, therapy and educational schedules. We’re not as forthcoming with thanks and gratitude as we should be. But know, that with all that I am, I appreciate your support and would not have survived with my sanity intact (that may be debatable with some people) without you.