It takes a team...and I'm the (reluctant) Captain

In the past year plus of having a child with complex medical needs, I've learned some important lessons.

Quality care depends on a team of good professionals working together. Seek out the best, not just by reputation, but by ability to work with others.

Surround yourself with support - family, friends, professional connections - and accept help, if it's actually helpful.

Be organized. Use whatever system that works for you.

Take notes and get copies of medical records and reports. 

Having contact info for all providers that you can easily share makes your life easier and gets care providers working together faster.

Getting your team to communicate with each other effectively can be difficult. As "Captain" you'll often need to be "Team Communication Facilitator" - it can be frustrating, but don't give up!

Trust your gut and speak up.

Ask as many questions as you want. Ask as many people as you want. Ask the same questions over and over again if you want. Don't be satisfied with "fluffy" responses. NEVER accept dismissals or scare tactics.

Find a balance between polite and pushy, but, ultimately, you may have to just be pushy.

If you are upset (and you have every right to be), talk it out with someone you trust before approaching the person you are upset with. Having someone "talk you off the ledge" and help you find the right words to express your concerns is better than being a crazed Mama Bear and attacking.

Pull every string you can find when there's something your child needs.

If one team member is not doing what needs to be done, either coach them or cut them. Keeping them out of loyalty does not get you better results.

Say "Thank you!" Those two words and a smile can go a long way.

The medical professionals may each know a lot about their specialty, but YOU are the expert on your child.

To other parents, wherever kids congregate

I see you sticking very close to your child, just a few steps away should anything happen. You may notice that I'm not always following my child around. It doesn't mean that I'm any less of a parent or that I'm expecting you to rush over and take care of my child for me.
Please don't assume I don't care about my child because I'm not following him around. I do care, just as you care about your child. I'm here and trying to let my child learn independence in what I've decided is a relatively safe environment. He knows where I am and that, if he needs me, I'm here for him. As he explores his world and interacts with others, I try to stay back so he can experience through his own lens, not mine.
If he does something to hurt or upset your child, I'll step in and remind him to use gentle touches, take turns, ask permission, and that it is not nice to hurt others. I will encourage him (not force him) to apologize and ask how he can make the situation better. Interpersonal skills and problem solving are things we need to teach. It starts by setting a good example through our own behavior.
If you think I don't see something my child has done, talk to me! If he takes a toy from your child, please don't yell at my child then snatch the toy back from him. I'm fine with "parent the child in front of you" but his childish behavior does NOT give you the right to behave like a child yourself.
Kids DO learn how to solve their own problems, when we let them. Where's the growth, learning, and independence if you fixing everything for them?
This is NOT about which parenting style is better. We each have our own style and if it works for us, that is what is important. We can respect that about each other and teach our children to respect each other and respect different opinions.

Thanks.

This Wrap is Perma-stash

This wrap is perma-stash.

It's osnaburg, so it's not, soft, cushy, or marshmallowy. At 21' long, it's too big to be comfortable for my 5'4" frame. It doesn't have sleepy-dust or an amazing design.

I can't get rid of it.

It is a symbol.

A symbol of friendship and community. It was tie-dyed and given to me by members of my mama-tribe at a time when I needed to be wrapped in love and provided with support.

My 2nd child was just a few days old and still in the NICU with an uncertain future. I spent my birthday and wedding anniversary driving back and forth between home and hospital, trying to give as much time and love as I could to both of my children.

My mama-tribe stepped up and helped out: watching our first so hubby and I could both go to the NICU, bringing us hot meals, messages of love and support, sometimes from people I had only met at a play date or two.

In the year since they made me this wrap, my "tiny guy" has grown and made so much progress. I have done what I can to help others in similar ways.

This wrap is perma-stash...
just like the love and support it symbolizes.

Why I Write (and share with others)

My writer friends tell me it is therapeutic... and my therapist agrees.

I never enjoyed writing. When I was in grade school, it was always difficult for me to organize my thoughts and get them onto paper. Using a tape recorder with variable speed playback and a computer did help some, but the added steps and technology often felt like they added to the onerous burden of each assignment. My papers for English classes often came back to me so bloodied with red ink suggestions edits and revisions that it often felt like a funeral was appropriate and what got buried was any enjoyment of writing. Even writing in a private journal or diary became distasteful.
As a voracious reader with a mother who wrote prolifically as a major part of her job, I became the friend who was always happy to read your writing and make helpful suggestions, but wouldn't share what I wrote unless absolutely necessary.
In college, I avoided classes that required writing papers whenever possible, and was relieved that most of my Engineering classes focused on generating PowerPoint presentations and brief technical memos. Lab reports were a necessary evil, but most of my classmates agreed, so we suffered through them together.
Fast forward several years to my first long-term substitute teaching assignment. I had be taken under the wing of a veteran teacher and literacy coach with a career path more circuitous than mine. I admitted to her my tortured experience with writing and expressed my doubts about my ability to teach something I so disliked.  She encouraged me to try writing using the Writers' Workshop program my elementary school students had been learning through. At first, I was leary, but I quickly surprised myself by how easy it was to write on any topic I wanted in a notebook nobody would see unless I chose to show it. (I plan to post some of those pieces here, as I find time.)

Why is writing therapeutic?
When I find make time, I write about the lessons I'm learning from life. It's a way to process what is going on. Sharing those lessons with others is a way to make them sink in for me. Writing can be empowering. By helping others, I feel less helpless.
Given the right circumstances, I can talk for hours. Writing forces me to slow down and really THINK about what I want to share and how I want to share it. There are some non-verbal cues that can get lost when writing, but I can choose my words carefully to express exactly what I mean. Once you say something, you can't unsay it.
When I was younger, I was bullied a lot. I was angry and hurt and scared, but I had trouble expressing my feelings in a productive way. Crying in a corner may be a natural response, but isn't productive if it doesn't make you feel better. Someone (a therapist, a teacher, my mom...I forget) suggested that I write a letter to the people bullying me. Write about how I felt and why I felt that way. Write about what I wanted to do and what I wanted them to do. Write about whatever was making me upset, and then I'd feel better. The only problem with that was, it didn't make me feel much better. It's one thing to be able to express your thoughts and feelings. However, if you still feel that nobody is listening or caring about it, that no change will come from your efforts, then the benefit is limited. Finding an outlet where you can safely share how you feel with someone who can make a difference, even if that someone is yourself, is the important step that was left out.
Now, with blogging and social networking groups, I can share my thoughts and feelings and I can help others who are going through something similar. Helping others makes me feel less helpless.

Why I Use Cloth Diapers

This original piece was published on May 9, 2015 via social media for the Real Diaper Association. Link to post here.

It's about more than saving money. It's about doing what we can to leave a healthy environment for our children and beyond. I don't want my children's first, and longest lasting impression on the planet to be a pile of dirty diapers in a landfill.
In the early 1980s, my parents used cloth diapers on my sister and I. They had a diaper service but kept some of the diapers for use as dish rags, cleaning cloths, and hand towels. I grew up with the idea that cloth diapers were normal.

When my friends and cousins started having kids, a few used cloth and I learned about "modern" diapers. When I had my first child, one friend gave me part of her stash and another gave me a copy of Changing Diapers. I had something to start with and a way to learn more, but not much of a support system. I muddled through for most of that first year, washing diapers almost every night so I would have enough clean diapers to send to daycare. Then I discovered my local chapter of RDA,  Lehigh Valley Diaper Circle.

LVDC is more than just a cloth diapering support and advocacy group. They are a family support system. We have play dates and parties. We talk about parenting and life. When a member is in need, we lift them up and help out with meals, childcare, sympathetic shoulders, and more.

I do cloth because it about more than saving money. It's about family and the environment, the past and the future. Some of those same cloth diapers my parents saved thirty-something years ago now get used on my children. That's a lasting impression I'm happy to leave.

Am I a Bad Parent?

The school office calling you back pick up your kid just 10 minutes after dropping her off. Kids getting upset and fighting with each other on the playground or at a party.

Your toddler throwing food, toys, and your favorite travel mug during his 4th major tantrum before 10am. Babies screaming their heads off every time you set them down, then continuing to cry even after you pick them up, hug them, bounce them, feed them, change their diapers.

And when you think you've finally figured out how to deal with things, it changes on you and nothing seems to work.

You worry:

• Did I do something to cause this?

• Should I be doing something different? 

• Am I giving them enough attention? 

• Too much attention? 

• Do other parents deal with this too?  

• Am I a bad parent? 

I've figured something out. These are questions that run through every parent's brain and here are the answers.

• Yes, you had a child (or 2, 3, 4, 10) and became a parent.

• Probably, but every "expert" will tell you something different. Do what feels right to you and try to stop stressing over it.

• Nope. Put down or turn off the electronic device. Stop reading that parenting book. Use ALL your vacation days. Love your kid.

• Nope. We all want attention from those we care about. It is how we know they care about us. Take another look at HOW you pay attention. What do you you say and do? How does it make you feel? How does it make your child feel?

• YES!!!! All parents struggle with their kids. You just may not see it.

• NO!!!! Just the fact that you are worrying about being a bad parent means that you aren't one. It is not about being the perfect parent. There are no perfect parents.

There are no perfect parents. 

We are all just trying to do our best, each in our own way. We struggle. We worry. We hope we're not messing up. We hear people tell us how amazing we are and we don't believe it. That's why there are so many blog posts, magazine articles, and advice books.

So take a short break from your worrying, buy a new travel mug, spend quality time with your kids, and know that you are not alone.

How Do I Explain This to My Toddler?

My baby has cCMV, a common viral infection I contracted while pregnant that attacked his brain before he was born. (If you are pregnant, ask your OB or Midwife about the TORCH test. Visit StopCMV.org for more info.) Because of how the virus affected his brain, he has developmental delays and is at high risk for hearing loss, vision loss, and seizure. He doesn't roll, crawl, or sit independently, yet. He doesn't eat solids either. He may not for months to come. As he gets older and bigger, his delays will likely become more obvious. Although we hope he won't, he may eventually need assistive devices (wheelchair, feeding tube, hearing aid, etc.) and even if he doesn't, he may never be able, or allowed, to do everything his big brother can.
How do I explain this to my toddler?

Besides his pediatrician, he has a team of specialists and therapists, some who come to our house every week, others we have to drive over an hour each way to see once a month. Many days, I need to spend some time calling doctors, scheduling therapy sessions, reading test results, or researching possible symptoms and treatment options. There are times when I need to focus on the baby so I can make sure he does his exercises, or so I can try to catch a new symptom on video. This often has to happen while my toddler is awake and wants my attention. Sometimes it means that we have to miss a play date or skip an outing or activity.
How do I explain this to my toddler?

There are some days that all the stress and uncertainty get to me. I just don't want to deal with any of it or the usual "Mom Stuff" and any little thing may set me off on a crying jag or a furious tirade. Those little things are usually the typical toddler stuff that aggravate most moms. Sure, I'll feel bad about it later and have to apologize to him, but right now, yelling, or hiding in the bathroom with a beverage and my phone are the only way I can keep my tenuous grip on any semblance of sanity.
How do I explain this to my toddler?

I explain it all to my toddler the same way I explain most things: honestly, simply, and with empathy for what he's thinking and how he's feeling.
The reality is, we love him and we love his brother. He and his brother love each other. We pull together as a family and support each other. We have amazing friends who care about us and find ways to show us they care. That is what matters. It is what will help us through whatever comes our way.
To our wonderful friends and family:
Thank you! Please don't think we don't want to spend time with you. Sometimes it just is too hard. Keep inviting us and including us. We appreciate that you care and want to help, even if we decline time after time. Keep offering, we may NEED to accept your help at some point.

The Power of Positive Thinking: Learning about life from my toddler's favorite books

Life can be hard. Then you become a parent and it gets harder. If you are the parent of a child with special needs, it gets harder still. Fortunately, love can give us strength and energy to deal with what is difficult.

My toddler loves books. A few of his recent favorites are The Little Engine That Could, Mike Mulligan and his Steam Shovel, Peck Peck Peck, and The Going to Bed Book. This means my husband and I read these books over and over again, nearly every day. I have them mostly memorized at this point. So does our toddler.

I've learned lessons about life and the power of positive thinking from these books. It's part of what gets me through each day with a spirited toddler and an infant with special needs.

The Little Engine That Could

There's an obvious "Believe in yourself" message in this book, but before you ever meet the Little Blue Engine who says "I think I can" there are 4 other engines. The first engine pulling that train full of toys and dolls breaks down. We all break down. We all reach a point when, for whatever reason, we can't go on. It's OK to ask for help. That funny clown won't give up. Maybe he's overly optimistic. He keeps flagging down other engines. Each says that they won't help because they are too important or too tired to help. The Little Blue Engine learns that by helping others, we can help ourselves. She learns that she's stronger than anyone realized.

When I was pregnant with my younger son and the doctors kept "finding things" on ultrasounds, I saw my world flipping upside down. I was doubting my own choices and judgement. Did I cause this? Am I doing the right thing, making the right choice? I needed help. So I reached out to people who could help and they helped me see how strong I was. I didn't trust that the doctors were being completely upfront with me, so I talked to an experienced midwife who used to work with those doctors and I got her take on their reports. I saw my hopes for the birth I wanted being pushed aside, but my doula helped me protect what little I still had control over. Given the circumstances of his birth, I anticipated that I'd need lactation support that the hospital might not have available, so I stayed in close contact with an IBCLC friend. Afterwards, my doula told me that I "willed" my baby out. She'd never seen anything like it in all her years being around babies being born. These three women reminded me of how strong I am and how, though things might not be going as I hoped, I was capable of making it work. Through all of the complications, before he was born and as we learn about his health struggles, I help others who need it, because it prevents me from feeling helpless and reminds me how strong I am. I've been there, struggled with that, overcome it (with help), and now I'll help you do the same.

Mike Mulligan and his Steam Shovel

Another classic with an obvious "Believe in yourself" message. Mike Mulligan and Mary Anne have already done amazing things: helping build canals, railroad passes, highways, landing fields, and skyscrapers. The less obvious messages are "Go where you can do good," "Take a risk," and  "Surround yourself with people who energize you." Mike recognizes that they aren't wanted in the big city anymore, so they take a risk and go where they can do good. Throughout the book, Mike thinks that Mary Anne can do something amazing (dig as much in a day as 100 men can dig in a week) but he isn't quite sure. So he takes a risk and they attempt to prove that she can. By recognizing that they work faster and better with people watching, Mike sets up for success...with a little help from the little boy and all the people of Popperville. The story ends with Mike and Mary Anne living comfortably but in a way they never expected.

I was an engineer, then a science teacher, now a stay at home mom. I never expected the path I've been on, but each move, even within my teaching career, was based on these three lessons. I started thinking I would teach elementary school, but found myself teaching 8th grade science. I later wound up teaching science to high schoolers with very limited English proficiency. I volunteered to coach an after school fitness and mentoring program Girls on the Run, because it energized me to be helping girls realize their own strength. I worked with the Drama Club as Technical Director, because I knew I could do good, teaching students how to make a show happen with lights, props, costumes, sets, and sound. Teaching the kids who saw themselves as misfits (like me at that age), that there is a place they fit. Now, I volunteer with Girl Scouts and several local moms groups, because in helping others, I find my strength and the energy to keep working through my own troubles. I never expected to be here, but I think I am where I need to be.

Peck, Peck, Peck

The lesson in this book could be "Practice makes perfect" but I like to think of it a different way "If you're going to do something, commit and do it well." The little bird is taught how to peck by his dad and sent off to go practice pecking. The little bird proceeds to peck all over the inside of a house until he is dizzy and tired. Then he goes back to his nest and goes to bed.

My baby has special needs and my toddler has needs too. I've committed myself to making sure they have opportunities to be kids. I've committed to doing stuff that helps myself through helping others, including creating and maintaining a website and social media for a local breastfeeding support organization. I've committed to being there for my husband, our family, and our friends. Often, the effort of all these commitments makes me dizzy and tired, but I keep going, because they depend on me. I am a mommy and I'm teaching my kids these lessons.

The Going to Bed Book

This book has special meaning for me. I am still reading from the same copy my parents used when my sister and I were little. It has been part of our bedtime routine for most of our toddler's life. I long since had it memorized and I recently discovered that he has it mostly memorized too. The lesson I see in this book is "At the end of the day, rest. The world will still be there tomorrow." No matter how busy, anxious, worried, frustrated, or upset I may be, I still need to rest and recharge, because I've got to do it again tomorrow, hopefully a little bit better.

I love reading with my kids, new books and old favorites. I love my kids, my husband, our family and friends. I love helping others. I love learning and sharing. All that love gives me strength and energy to deal with what is difficult.

Mommy's Doing Stuff: How I Balance My "Busy"

Give up on being perfect. Really. Let it go. I accept that I'm good at some things, great at a few things, and really lousy at other things. I remind myself of this daily because I struggle with feeling like I'm not good enough.

Find an organizational system that works for you. I rely on my online calendar and notes, and color-coded folders and piles. Growing up, I quickly learned that if it wasn't in my mother's book, it didn't exist.

Multitask, Multipurpose, and Make it work. For me, this means I am often (but not always) doing something else while breastfeeding. I've surprised even myself in the ways I've added to this list. http://womenshealth.gov/itsonlynatural/fitting-it-into-your-life/10-things-moms-can-do-while-breastfeeding.html Multitasking is a necessity as a mom, but can leave you feeling scattered and unfocused. Multipurposing means rearranging or combining your tasks so a single task can serve multiple purposes. Break larger tasks into smaller ones. You can fit several small tasks into your day between a few large tasks, like a jar full of rocks, sand, and water. I wrote this a few sentences at a time.

Ask for help! It doesn't mean you failed, it means you are HUMAN. I have a wonderful hubby, supportive friends and family, reliable sitters, and a network of resources to call on when I need them. (I really can't thank them enough!) I don't have time to wait for someone to come ask me what I need. I have to be my own advocate.

Identify the things you enjoy and make one of them a priority every day. If you keep putting off the less urgent stuff, you'll never get to it. This along with the next one...

Do what energizes you. I know many of you already do this, but be proud of it. I'm someone who needs to be involved and busy. (My mom is too.) I'm energized by learning new things and sharing what I've learned to help others. I've found ways to do this that include one or both of my children.

This is how I do stuff. 

My life as a mom of 2 kids with "special needs"

How do you define needs as being special? All kids have needs. They need food, clothing, safety, activity, and most importantly, LOVE. One could argue that neither of my kids have "special needs" in the usual sense, but, whatever words you choose to use, they keep me very busy.

My baby has congenital cytomegalovirus or cCMV and even though he looks like a "normal" baby, he has medical needs. He is given antiviral medication twice each day to help his immune system suppress the virus so it doesn't attack his brain and other organs. The medication has its own possible side effects. Since cCMV affects brain development and the medication is relatively new, there is no way to know for certain how affected he will be and his condition can change over time. Because of the complications that can occur with cCMV and the treatment, in addition to all his regular pediatric "well baby" appointments, he also needs checks of blood chemistry, metabolic function, viral load, hearing, vision, motor skills, and cognitive development. He has follow-ups with his immunologist every month or two, and has physical therapy every week. Some of these visits are nearby, others require a full day trip to a children's hospital more than an hour drive from our home. All this medical attention, and uncertainty, began months before he was born. I had 10 ultrasounds, many non-stress tests and blood tests, and even a fetal MRI. The doctors were concerned that he might have several other serious medical conditions that, fortunately, never came to be. We have high hopes that the medication and early intervention services will be enough to give him a "normal" childhood by the time he gets to school, but if he should develop other issues, I know we will do our best to overcome those difficulties and let him be a kid.

My toddler is "spirited" - high energy, inquisitive, intelligent, talkative, stubborn, and sensitive - and even though he looks like a "normal" toddler, he has high attention needs. Most days, he tears around our small house, playing with his trucks, blocks, kitchen, and other toys. I try to get him outside as much as I can when the weather is good, but trying to convince him to get dressed appropriately for the weather, including shoes, can be quite a challenge. He is "into everything" all the time: climbing on furniture, knocking things over, making messes, and pushing buttons. He loves asking questions, figuring out how things work, and often learns new skills quickly. It didn't take long for him to figure out how to circumvent drawer latches, climb over safety gates, or unlock the screen door and let himself outside. He enjoys music and has a very active imagination. He is kind and likes to help and share, but doesn't always accept that his "help" is not really helpful or that not everybody will share everything all the time. He can be easily frustrated, throwing things on the floor and screaming. He will demand assistance for tasks he can do independently, insist his favorite food is "yuck!" and often has difficulty transitioning from one activity to another, even when what is next is something he likes. I'm sure it must not be easy to have a brother that needs so much attention, especially when you need so much attention yourself.

As you may imagine, the combination of these two small people in one household can make for quite the challenge. It can be hard for us to get out the door. By the time I get one kid ready to go, the other one needs something, and then the first one again, and soon, it is nap time. There are always loads of laundry and dishes waiting to be washed or put away, assorted toys to be picked up, a floor in need of sweeping...but that's true for every home with kids and can be overwhelming enough on it's own. For us, there are always medical offices to call, insurance paperwork to wrangle, and records to keep track of. Scheduling of playdates and "mommy and me" classes has to coordinate with the therapy sessions and doctors appointments. I feel bad when I have to bow out of getting together with friends or family, but sometimes, I just don't have the energy to do anything more than collapse on the couch and watch tv.

I have my own needs too. I have never been someone to sit around doing nothing for very long, and I have always been a very engaged person, involved in several activities at once. To retain my sense of self amidst all this responsibility to my children, I am involved in a variety of groups, most of which support moms and/or their children. I also try to take time to do healthy things to relieve my stress, provide a sense of accomplishment, and stay intellectually engaged: reading, mentoring, web design, and mud runs. 

It is difficult to balance taking care of the kids, and the house, and myself. Some days I want to scream, throw things, and pull my hair out. Other days I want to run away. Fortunately, I have a wonderful, sweet, involved husband and caring, supportive friends and family.  Everyday, I'm glad I can be there for both my kids and try my best to meet all their needs, special or not. 

For more information on CMV, please visit www.StopCMV.org