Sunday, March 29, 2015

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 offeringwe may NEED to accept your help at some point.

Wednesday, March 11, 2015

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.