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