The Thoughts of a New Runner (Who Is Usually Quite Sane, I Promise)

As I pulled on my tennis shoes, I had lovely thoughts like, “I feel great today. The weather is perfect for a nice 3-mile run.” Or “I’m going to glide like a gazelle across the pavement.”

I gave my husband and the boys a quick wave, put on the headphones, and left. I started a fast walk as I fiddled with my iPhone: music on Pandora; tracking the workout with MapMyRun. And I ran.

As I began, my steps fell in sync with the music. “I could run forever,” I thought.

.25 mile later, my breathing started to get ragged. “Breathe in through the nose, out through the mouth. I can do this.”

Breathing under control, I turned onto a gravel road and faced nothing but fields and a farmhouse. My legs became heavy, tired. I focused on my arms, imagining they were parts of a machine, pumping and pulling me forward.

The farmhouse was on my right, a small house with several out-buildings. “Probably for storing equipment,” I thought. But I read a book recently about a family of country boys that were buying women and killing them, storing them in buildings just like those. I moved to the other side of the road.

Halfway up a small hill, my calves were on fire. “What happens if they burn right off my body?”

Then I heard, “Distance. One. Mile. Time. Ten. Minutes. And. Forty-Three. Seconds.”

“It’s only been a mile?” I tried to pick up the pace, but my legs didn’t seem willing. “I’ll just do 2.5 miles instead of three,”I thought. And then, “No. Three miles this time. I’m doin’ it.”

Finally, I reached the turn-around point. I paused the app, stretching my calves and catching my breath. A truck rolled slowly over the top of the hill. “Oh great, they’re going to stop and ask if I need help. I probably look like I’m dying.” The truck passed without pause. “Well I guess they’ve never heard of small town kindness. What if I were dying?”

I tapped the Resume button and started running again. “Halfway done. I can do this.”

My thoughts wandered until I heard, “Distance. Two. Miles. Time. Twenty-one. Minutes. And. Fifty-eight. Seconds.”

My calves started to burn again. I felt the back of my ankles tightening. “I can’t do this anymore,” I thought.

The next song started playing: “Die Young” by Ke$ha. I thought about my son. Cystic Fibrosis. Stories from adults with CF, swearing that running is what keeps them healthy. Ke$ha sang, “We’re gonna die young.” I fought back the tears. Pounded fear into the pavement. With each stride I thought, “Not if I can help it.”

When I crossed our driveway, I heard, “Distance. Three. Miles.” I shut it off.

I was finished. I did it. I will do it again. For myself. For my son.

Image Credit: Google Images

Image Credit: Google Images

**Happy Birthday to Yeah Write! Come join the celebration and maybe even win a lovely prize!**

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Munchkin Meals: 10 Months Old

**Linking up today with Brittany from A Healthy Slice of Life for this month’s edition of Munchkin Meals! Check it out!**

My little guy is now 10 1/2 months old, and looking and acting more like a toddler everyday. He is standing for a few seconds on his own, walking while holding on to furniture, and climbing on everything his short little legs can pull up on. He can crawl across the living room and be halfway up the stairs in less than ten seconds!

His meals are also becoming much more toddler-like, in that we are avoiding purees as much as we can (sometimes those handy pouches like the Sprout or Happy Baby brands are convenient for on-the-go snacks!) and focusing on “real” foods. With this change, I have to repeat to myself almost daily, “I am not a short-order cook. I am not a short-order cook.” Sometimes it can be hard not to let his CF (cystic fibrosis for new readers) get the better of me. With CF, growth and maintaining a healthy weight can be difficult, but it is an important factor for good lung health. Also, once I give him his dose of enzymes (which he has to take before he eats, every time he eats or his body can not process the fat and protein), he only has an hour time frame to eat, and there is a limited amount of enzymes he can take in a day, so if he doesn’t eat well, then I have to wait at least a couple of hours before I can give him more enzymes to eat again. So for that reason, I struggle with the feeding choices. The part of me that is always concerned for his health wants to keep offering him things until I find something that he’s willing to eat. However as his dietician pointed out,  doing that is teaching him to be in control of the food, which can lead to unhealthy habits. I know that this is true from experience: my now six-year-old only ate cereal, chicken, meatballs, corn, grapes, and snacks for the first four years of his life. Why? Because I would give in to his pickiness. If he wouldn’t eat the spaghetti and broccoli that we had for supper, I would make him his own separate meal of one of those things that I knew he would eat. Today, he’s a much healthier eater, but I wish I would have been persistent when he was younger about encouraging a variety of healthier foods for him. And so with my 10 month old, I am being persistent. I will give him a couple of options at snacks and 3-4  different foods for meals, and he eats what he eats. If it’s all or most of it, I feel good. If he barely touches it, I worry a bit about him gaining weight, but I don’t give in go through the fridge or pantry, shelling out food after food until I find something that he will eat. I does help me to know that I still nurse him or give some some formula after each meal, but the amount of that is slowly decreasing, and starting next month, we will begin transitioning him to whole milk! Stay tuned for next Munchkin Meals to see how that goes!

So, what does a day like this look like? I’ve taken a lot of pics to show you! (All from my phone, so I apologize about the poor quality. I’m definitely not a professional photographer!)

Breakfast: Whole wheat bagel with cream cheese and a banana. He ate about 1/4 of a large bagel and several bites of the banana, and then I nursed him.

BreakFAST

 

Mid-Morning Snack: Chobani greek yogurt. He has one of these almost every day, because it’s so healthy for him and high in protein. He almost always eats the whole thing like he did with this one!

Chobani

 

Lunch: Grilled cheese and avocado (such a yummy combination!) with strawberry slices and a few yogurt drops. He ate about a 1/4 of a full sandwich (and I finished the rest of it!) but barely tried the strawberry or yogurt drops. A pretty light lunch. Then I nursed him again.

Lunch1

 

Lunch

Afternoon Snack: Honeydew melon, string cheese, and Annie’s Organic Bunnies cheddar crackers. This was his first time with the melon, but he usually likes the cheese and crackers. However, this particular time he was completely uninterested. I did give him a bottle, for his vitamins and salt intake, but only 4oz, because I do not want him to fill up on formula alone. After the bottle, he ate a couple of crackers, but most of this snack went untouched. (PS-I also realized after taking these pictures how messy our highchair cover was that day! Just keeping it real.)

Snack

 

 

Supper: I made Creamy Cauliflower Soup (a recipe shared by Allyson at Domestic Superhero, except we used “real” foods instead of the low-fat versions. We need the higher calories and fat for my little CFer!) and BLTs. He was hungry and crabby before the bacon was finished baking (Anyone else cook bacon in the oven?? So much easier!), so instead of the BLT, I made a slice of whole grain toast and spread some avocado on it. He ate his whole bowl of soup (probably 1/2 cup) plus several bites of the toast. I nursed him afterward, and then he was ready for bed! Being so active (and down to only two naps a day) wears him out!

Soup

 

 

 

AvacadoToast

 

Some days are better. Some days are worse. But I refuse to let the fears of CF run our kitchen. Nutrition with CF-specific supplements will run it instead. And starting while he is young is the key.

Thanks for reading today! Be sure to check out the other Munchkin Meals link-ups for more healthy meal and snack ideas for babies and toddlers!


Baby Tips for First-Time Parents (Part 1): Health and Safety

In honor of my sister and her boyfriend who are expecting their first baby boy very soon (and my first nephew!), I wanted to put together a few tips that I’ve learned from nine years of being an infant teacher and 6+ years of being a mom. For first-time parents, caring for a baby can be overwhelming, exciting, nerve-wrecking, and blissful all at the same time. There are so many questions that I had as a first-time parent, and over the years as an educator and mom, I’ve learned the answers to many of those questions. That being said, I still don’t have all of the answers, and these are just a few tips for some of the many, many questions that will arise when caring for your baby for that first, precious year. Please consult your doctor and your own parenting instinct to find what is right for you and your baby. I hope this series of posts works as a good starting point to answer some of the perhaps less obvious or less talked-about questions that arise in caring for your baby.

The topic of today’s post in the “Baby Tips for First-Time Parents” series is one of the most important:

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Health and Safety

-When your baby becomes mobile, he needs a lot of practice before he becomes efficient in various motor skills such as sitting up, pulling himself up to stand, and walking. Falls are inevitable. When a baby falls, I would guess that most of the adult population reacts in one of two extremes: either they gasp with a look of worry or panic and rush over to console the fallen baby -OR- they smile, cheer, or clap and say “You’re okay!” with a lot of feigned enthusiasm. Here is a better reaction: do nothing. Maintain a neutral expression so that your baby can decide how he feels about the fall. Then base your reaction on his reaction to the situation. If he is okay, but you panic and your face reads “Oh, no! He’s hurt!” then that will cause your baby to think “Oh no, look at mom/dad’s face! Something must be wrong!” In contrast, if your baby is wailing because they are feeling pain from their fall, but you’re smiling and insisting that they’re fine, it’s not validating their feelings. If we fell and hurt ourselves, how would we feel if someone watched it happen and then was smiling and clapping about it? We would likely feel a little resentment towards them. Babies are smart enough to pick up on these unspoken messages. In fact, they are the only messages that a baby clearly receives, as they understand facial expressions and tones and their corresponding messages long before they are able to understand the meaning of our words. Hence, the best way to react to a fall is to remain neutral until the baby reacts, and then respond according to their feelings. If they cry, console them and validate their feelings: “Ouch, that must of hurt. I’m very sorry that you were hurt from that fall.” Calmly, but empathetically. Repeat the words this way until they calm down. If they fall but come up smiling, then it’s okay to smile back and say, “Yay! I’m glad you’re okay after that fall!” Obviously, if the fall is severe, you should take appropriate emergency/first aid actions. Which brings me to my next tip…

-Consider taking a CPR course that includes infant CPR and first aid. It is unlikely that you will need CPR for an infant, but you want to be prepared in the case of an emergency. I think we all agree that it would be better to know and not need it than to need it and not know. The American Heart Association and the Red Cross are two good options for considering a course. They will also teach you what to do about infant choking, which is the part of the course that you are most likely to need, since most babies explore things by putting them in their mouths. It’s also the only type of CPR/first aid that I have ever had to perform on an infant, with the exception of basic first aid for a few minor cuts and bumps from falls. Having the knowledge to potentially save your baby’s life is invaluable, and I strongly recommend an infant CPR/first aid course to all parents, grandparents, and caregivers.

-Speaking of choking, use an empty toilet paper tube to check items for choking hazards. The simple rule with choking hazards is to drop the object through a toilet paper tube. If it fits inside or falls through, your baby could choke on it, and that object should be kept out of your baby’s reach.

-Have your car seat properly installed or checkedWe called and made an appointment with our local fire station before our first son was born to have the car seat installed, or you can use this local “Inspection Station” locator from SafeKids.org. SafeKids also has this comprehensive list of car seat and travel safety for infants (and children of all ages!), including how long to keep the child/car seat in a rear-facing position, where to place the chest clip (at the child’s armpit level), how tight to have the car seat’s harness straps (you should only be able to just barely slip your finger in between your baby and the straps. No slack!), and to never leave your baby alone in the car.

-To keep your baby safe when he is asleep, be aware of the SIDS-prevention sleep safety tips. Always place your baby on his back to sleep, use a firm mattress, and your baby’s crib should be empty. No bumpers, no pillows, no blankets, no toys. It should be a crib, a firm mattress, a fitted crib sheet, and your baby. That may sound bare and boring, but if you think about the crib’s purpose, it should be boring. You want your baby to associate the crib with sleeping, not playtime, and any extra accessories not only prevent your baby from having a safe sleep environment, but they can also be distractions to your baby that may hinder him in falling asleep or confuse him about the purpose of the crib: plain ol’ sleep.

-At one point or another, your baby will get sick, and the only one who can truly help you with your baby’s illness is your baby’s pediatrician. However, should your baby need medication upon your pediatrician’s recommendation, I have one tip for using those little syringes that they provide for dosing an infant’s medication. I always had trouble getting the proper dosage because there would always be a little air bubble in the syringe, taking up space where medication should be in order to get the proper dose. Frustrating! To get rid of that air bubble, fill the syringe with the medication, and then press out the medication back into the bottle. This will leave a bit of medication in the tip of the syringe, instead of air. Then you can fill the syringe again to the proper amount, and the dose will be more accurate without that pesky air bubble!

-Finally, keep hazards out of reach, but remember that no amount of “baby-proofing” can take the place of the watchful eyes of a parent or caregiver. In fact, we do very little baby-proofing in our home. We baby-proof mostly through supervision and redirecting him to a safer place, should he encounter a potential danger (ie, the lamp cord!). Do the baby-proofing feels right to you (a good tip is to get on your hands and knees and explore your home at your baby’s level to find potential hazards), but know that no amount of baby-proofing is 100% safe and your baby should be monitored at all times. Babies learn quickly and should never be underestimated!

I hope these tips will help you in some way, or that you can pass them on to a first-time parent you know! Come back next Tuesday for Part 2: Cleaning and Hygiene.

If you have any additional Health & Saftety tips for babies, please leave them in the comments! I’d love to hear what you’ve learned through your parenting experiences as well.


Munchkin Meals: 7 months old

The first Thursday of the month (and the new year!) means it’s time for Munchkin Meals via Brittany at A Healthy Slice of Life. Check out what the other mamas are feeding their little ones!

Last month, we were having trouble with getting enough protein in our little guy. He just hates those plain old jarred meats (the ones the smell and look exactly like cat food… can you blame him??). I think we’ve come to a nice compromise, one that leaves him full and satisfied, and (hopefully) will pacify his dietitian as well! We have a clinic appointment at the end of the month, so here’s hoping!

Breakfast:

He is still waking up once in the night to nurse (actually, he generally wakes up more than once, but I will only nurse him one time). That time can vary between 2am and 5am. He’s definitely not a consistent sleeper, and our dietitian (man, she’s pesky! But we love her!) really wants him to stop nursing overnight. I try to put him back to sleep without nursing if he wakes up before 4am, but sometimes the little guy will just scream and howl, and for the sake of everyone’s sanity, I will nurse him. He always gulps and gulps likes he’s just starving, so I don’t think it’s simply a comfort thing. That part has been a struggle with trying to wean him off of his nighttime nursing, but I’m hoping that we get it resolved soon. My thought is that he is probably not getting enough during the day, and he’s waking up to make up for it at night. It’s a vicious cycle.

Even though his nighttime feeding is inconsistent, he is extremely consistent that 8-8:30am is breakfast. Whether he nurses at 2am or 5am, his internal clock seems to tell him he is hungry right around 8am every morning. It’s a nice schedule to have him on, because it gives me the morning free to get his older brother’s breakfast/lunch made and drop him off at school. When we get home, I give my little guy a few Gerber “Puffs” and a sippy cup of water in his highchair while I prepare his morning medications and enzymes along with his bowl of cereal and fruit. Those puffs are like baby crack! He loves them, and they have been wonderful for letting him practice feeding himself. My favorite thing about them is that since they have no fat or protein, he doesn’t need enzymes to eat them! What a great way to let him “snack” between meals or while we are on the go. He also loves bananas for breakfast, but he hasn’t mastered picking those up on his own yet (I give him half of a banana whole rather than cutting it into small pieces… kind of like the baby-led weaning! He prefers it that way). What he is getting good at is using his sippy cup. Ever since I bought him the Nuby brand with the handles, he is able to do it mostly on his own with occasional help. Woohoo! He also nurses about thirty minutes after his cereal, because the enzymes are good for one hour from the time we give them to him. After that, he has to wait until the next feeding to eat, so we try to make the most out of those little enzymes!

A few puffs to tide him over.

A few puffs to tide him over.

Morning meds.

Morning meds.

Oatmeal with fruit. Mixed with formula for extra calorie boost!

Oatmeal with fruit. Mixed with 2oz formula for extra calories!

Lunch: 

Anytime between 11am and 12pm is lunchtime. I typically eat leftovers from the previous night’s dinner, and then I give my little guy a few pieces of whatever I am eating to try. He’s still learning to pick things up and get them to his mouth, but he loves baked chicken and is able to chew and swallow it easily in very small pieces at a time. I don’t think he gets enough protein from such tiny portions to satisfy his dietitian though, so we also give him a jar food “dinner.” I’ve discovered that he prefers the “3rd foods” and mixing them with a substantial amount of his daily salt intake. He gets 1/4 tsp of salt per day added to his foods, so I generally divide most of that between his lunch and dinner jar foods. I’m hoping that this combo of small portions from my own lunch and the jar food “dinners” is a good compromise to the nasty jarred meats that his dietician wants and what I prefer, which is him getting into the habit of eating whatever the rest of the family eats! So far, so good! And again, he nurses about thirty minutes after his lunch.

Baked chicken and peas with a side of jar food!

Baked chicken and peas with a side of jar food!

Just for fun for all of you Munchkin Meal visitors, here is my oldest son, home with us yesterday on his last day of winter break! Going for his second helping of peas! He had some oyster crackers and a string cheese to go with his chicken and peas. :)

Just for fun for all of you Munchkin Meal visitors, here is my oldest son (6YO), home with us yesterday on his last day of winter break! Going for his second helping of peas! He had some oyster crackers and a string cheese to go with his chicken and peas. He was taking a break from a top secret mission, hence the swords. 😉

IMG_0308

Midday:

At about 2:30 or 3pm, my little guy will nurse again. (I’m sparing you all a picture of me nursing. You’re welcome!) 😉

Supper:

Like lunchtime, we are getting our little guy in the habit of eating a baby-friendly version of whatever we are eating. Last night I made homemade tomato and cheese tortellini soup (delicious!) and breadsticks with a side of peas (we were trying to use up our leftover peas, can you tell?). I gave him small portions of each, but his favorite was a big chunk of breadstick. I think sometimes he prefers the smaller pieces that he can pick up (like the puffs or pieces of meat) and other times he prefers a big chunk to hold on to. Also like lunch, he gets another portion of the jar food dinner with salt and then nursing about thirty minutes later.

IMG_0309

Breadstick! Nom Nom Nom!

Breadstick! Nom Nom Nom!

Bedtime Snack:

In a suggestion to help him sleep through the night, our dietitian recommended that we feed him a big bowl of cereal and fruit (which I mix with 2oz formula) for his last feeding before bedtime. It doesn’t seem to make any difference in his sleep habits, but he does love his cereal and fruit, so we give it to him anyway! He loves it so much that he slurped it all down last night before I could snap a picture, but it looks just like the breakfast bowl of cereal above. He also nurses, of course.

And that’s it for our seven month old’s day of eats! Thanks for reading our his progress!

How is/was your little one at sleeping through the night? Do/did they wake up to nurse or take a bottle? How did you wean them of it?


Your Complaints Are as Good as Mine

After we got our son’s official diagnosis of having cystic fibrosis, I was angry. My tender and delicate three-week-old baby had been suddenly thrown into a lifetime of hospitals, treatments, and life-threatening possibilities. When I went onto Facebook to make the announcement of his diagnosis–because what kind of sleep-deprived, devastated parent wants to make that many phone calls?–I only felt worse. Seeing all of the status updates about the wonderful things happening in the lives of my friends and family was like rubbing the injustices of the world in my tear-filled eyes, and it burned. There were friends who announced their children’s healthy well-checkups. There were family members who were on vacation, relaxing on a beach with a drink in their hands, like they were never going to have a worry again. What really made me livid were some of the complaints.

“Traffic is terrible today!”

“Ugh, the house is a mess, but I don’t feel like cleaning. Anyone want to do it for me?”

“I’m so hungry! Is it lunchtime yet?”

“Some people are so frustrating! Can’t wait for this day to be over.”

In that moment, those complaints seemed so insignificant and petty. I wanted to scream, “Really? That’s what you’re complaining about?” While these people’s biggest worry of the day was whether or not they were going to have time to stop at Starbucks on the way to work, I had real problems. I had a baby with a life-expectancy of 38. I had to endure the blood tests, the long doctor’s visits, and sorting out the confusing details of a complicated disease. Real problems, people.

I was angry with the world.

But then I thought about it from my son’s perspective. Despite the disease that had manifested inside of him, he was still a beautiful and innocent newborn. He cried and nursed and pooped and slept just like any baby should. He was content with the world. The last thing I wanted was for him to feel angry. After all, it was his body that was affected by this disease. It was his life that was imposed upon, and no matter how much it affected me, it would always affect him more. I couldn’t let him grow up thinking that he had a reason to be angry. I didn’t want him to believe that anyone else had a better life than he did. Or was more normal. Or was luckier. Or was more blessed. Something in me shifted when I looked at my sweet baby boy and saw the kind of man he needed to be: healthy, strong, and determined. I let go of the anger as best as I could, so that I could see my son as the perfect, tiny being that he was. I was grateful for him, and my Facebook status probably would have read, “I am such a blessed mama.”

Six months later, what do I complain about? I complain about the half hour wait at the doctor’s office. The never-ending piles of laundry and dishes. The grocery store being out of Cherry Pepsi. And somewhere out there, someone may overhear my complaints who is tackling something big. Something real. Something difficult. They may feel angry at my complaints.  Just give them some time and perspective, and their complaints will be as good as mine.

He's perfect.

He’s perfect.

**It’s Yeah Write Challenge Grid time! Come and join us.**


Munchkin Meals: Challenges

I’m linking up today (and the first Thursday of every month!) with Brittany at A Healthy Slice of Life for her Munchkin Meals! It’s so nice as a mom looking for adventurous, nutritious new foods to introduce to my little guy to have this as a resource every month. I’m always so impressed by the healthy meals that other mamas are creating for their babies! Take a look, and you’ll see what I mean!

The last time I posted Munchkin Meals, we were just starting our little guy (almost six months old now!) on some foods. He has taken to it so well, and we’ve tried several of the basic foods, and are starting to become a little more adventurous.

We typically start out the day with either rice cereal or a fruit. We have a gorgeous, HUGE pear tree in our backyard, that has produced more fruit this year than we can consume, and our little guy just loves it! Both our pears and our apples this year were just the juiciest pieces of fruit ever! And I love the homegrown appeal too.

Big old pear tree!

Pureed pears for breakfast.

Look at all that juice! (Yes, I was so set on making sure I got pictures for the post that I forgot his bib. Whoops!)

We aren’t doing a lunchtime feeding yet, but we have started doing two meals a day, so he has dinner. He has mostly been getting either a fruit (if he didn’t get one for breakfast) or a vegetable for dinner. I made a pear-pumpkin combo that he really liked! But yesterday we tried something new: quinoa! He did so good with it, even though I didn’t puree it. I am impressed with this little guy’s eating skills.

This is the small portion that I gave him. He ate it all!

It does take him longer to chew it and swallow, so it’s a lot slower-paced meal than the purees, but he does so good! Chew, baby, chew!

I think he does so well with the chewing, because he has been taking his enzymes on a spoonful of applesauce since he was three weeks old. He has to take these before every feeding, breastmilk or foods, so I always nurse him after each feeding (and for a total of seven times each day) to make the most of these enzymes! Thank God for health insurance, because these little suckers are expensive!

 

“Just a spoonful of applesauce helps the enzymes.. go down..” (Mary Poppins reference. Hehe!) 🙂

We have also introduced a sippy cup with water, and he can drink from it like a pro too!

Trying to do it himself…

He drinks great, as long as he gets some help tipping it up!

So far, feeding our little guy has actually made things a bit easier than made any new challenges. Now that he is eating foods, we put his daily amount of salt mixed in with whatever he is eating instead of having to make a two ounce breastmilk or formula bottle to put the salt in. Not having to pump and make a bottle has made things much easier in that aspect of his needs. However, I think the biggest challenge we will face with our little one’s diet is getting all of the high-calorie, high-fat, and high-protein in each and every day. It’s so important for his growth. I grew up in a home where my father was a diabetic, and therefore, we always had low-cal, low-fat, low-sugar diets, so this CF diet is a completely different way of thinking about food for me. It’s going to be tough at times to prepare foods, especially as he grows and starts to eat what we eat as a family, that have the full fat for him, but yet a normal diet for the rest of the family. But with everything else, it’s a learning process, and we have a great dietician at his CF clinic that I know will help us along the way! And thanks to Munchkin Meals, I find tips from other moms for foods that are naturally high in these things that our little one needs to give him the healthiest start possible!

Thanks for reading! Any suggestions would be so appreciated! 🙂

 

 

 

 

 


We’re All in this Together: Blending in Special Medical Needs

When one person in the family has an illness, it can sometimes be difficult not to single that person out. We say all the time that we don’t define our son by his disease, but at the same time, there are certain precautions that we do need to take in order to give him the healthy life that he deserves. But how do you do this without singling out the person with the illness? Here are some tips that work for our family, and although our needs are catered to our little guy’s cystic fibrosis, many of these ideas can be helpful for other families who have a loved one with special medical needs.

  • We try to be as matter-of-fact about any changes or special needs as possible. We do our best not to place emotions with our son’s needs in order to prevent him from getting unnecessary sympathy, sadness, or fear. Instead of asking our older son to wash his hands when he comes home from school, because we’re afraid that the germs might our little guy sick, we ask him to wash his hands, so that the germs from school stay at school.
  • Whenever possible, we make the changes for the benefit of all of us. It is certainly much better for our little guy if everyone washes their hands more often, and we avoid going to places that allow smoking. But it’s healthier for all of us too. There’s no need to say, “We shouldn’t eat there, because our baby can’t be around smoke.” It’s just better for our family if we choose a smoke-free restaurant. When our little guy needs to get exercise, we can go for a walk or play soccer in the backyard as a family, because exercise is healthy and important for everyone. Never mind the fact that it helps to keep our little guy’s lungs clear.
  • If there is a special need that does not apply for the rest of the family, we do our best to let it blend in to the rest of the family’s routine. Our little guy is going to have a specific diet with higher amounts of calories, fat, protein, and salt. We have already mentioned this to our older son when we first explained cystic fibrosis to him, and his reaction was, “Aw, man! But I like salt! I want extra salt too!” That’s an understandable reaction from a child. But how do we try to keep our meals from being focused on the differences in what we are eating? This is where some creativity is involved. We can find ways to cook one meal, but add extra calories like butter or oil and extra salt to our little guy’s portion before serving the meal. That way, each boy could add a little salt to their food at the table, but neither of them would realize they were eating anything different.
  • We can embrace the differences as a family. During treatment times, hospital stays, or long doctors visits, we can find ways to make those bonding times as well. On Monday after our little guy’s two-hour clinic appointment, we spent the afternoon at the zoo. During hospital stays (which we have not had yet, praise Jesus!), we could bring lots of games to play, books to read, and movies to watch together. During breathing treatment times, we watch a favorite TV show. When it’s more about family bonding time than the medical need itself, those important needs are being met, but they sort of fade into the background.
  • We all get involved. I do most of the care-taking for our little guy’s needs during the day when my husband is working and my older son is at school, but in the evenings, my husband helps with treatments and medications. We also let our older son help with treatments–turning on the breathing machine, keeping track of the time with the stopwatch during PT, etc–so that he feels involved too.

Today at my older son’s school, the health department was providing a free flu vaccine for each student. Most of the students were able to get the vaccine in the form of a nasal mist. However, it is not recommended for those who will be around someone with a weaker immune system. Therefore, my son needed to receive the injection, but our little guy’s CF doctor suggested that we didn’t tell him, “You have to get a shot because of your brother.” So I thought all day about how to tell him he needed to get the shot, when he knew that the rest of the kids were going to get the mist, without putting the blame on our little guy. I ended up telling him that we thought it was best for everyone if he got the shot instead of the mist, because sometimes the mist can make people sick. Then, I pointed out that his dad and I were both getting the shot on Thursday, and his little brother would get the shot as soon as he turns six months old in November. He was a little bummed at the thought of a shot, but he understood and had no hard feelings towards any of us for it. (Oh, and he said it didn’t hurt, that he didn’t cry, and that he was glad they didn’t do it in his “throwing arm.” We also have a wonderful school nurse who had a couple of the older kids that also needed the shot get it at the same time as my son. They went first and then made funny faces at my son to distract him when it was his turn. She is so good!)

With any sort of special need, it’s always healthier for the family to have a “we’re all in this together” attitude. It creates unity, whereas focusing on the needs themselves creates distance. I’m sure there will be times where our little guy will still feel singled out, despite our best efforts, but the fewer times that happens, the better it will be for his mentality.

If you have a special medical need in your family, how do you create a sense of unity where there are obvious differences? I’d love to hear some other ideas, since we are still very new to this. 🙂