Tuesday, May 30, 2017

Johnny is Four






Johnny turned four today. We had a birthday party for him over the weekend and it was so much fun! He really understands what it means to have a birthday. He knows there's cake and presents, and he knows the song you sing and that you're supposed to wait until it's over to blow out the candles. He's really good at blowing out candles. He has friends and cousins that he likes to play with who came to celebrate with him. It was a beautiful spring day and we all had a great time.

I love celebrating my boy. 

But Johnny's birthday is so much more than his birthday.

I can't think about Johnny's birthday without thinking about the two years of infertility we went through before becoming pregnant with him. Or the baby we lost during that time. 

I can't celebrate Johnny's birthday without being reminded of the awful week we spent in the NICU after he was born, and the feeling that the ground had given way beneath my feet and I was simply falling with nothing to grab on to.

But I'm not really saddened by these memories. No. I suppose I could be. Instead they are a reminder to me God's grace. 

My life can be bleak,  and my dreams may appear to be dead. But God is still with me, guiding me, loving me. 

I may face something I feared and dreaded and prayed would never happen to me. It may be hard. But I will make it. And there will be new found grace and mercy because of it. 

And the thing I thought I absolutely could not handle will actually help me find strength I never knew I possessed. 

Actually, it not my strength at all that I will find. It's strength outside of me. The kind of strength that comes from crying heaving sobs in the shower while your baby is taken away in an ambulance and saying "God, I can NOT do this. Help me."

Grace is found there. 

When I am weak, then I am strong. 

God is there through the good times. But I'm aware of Him more during the hard times.

Because I need Him during the hard times. Grace is always available. But I'm not always looking for it.

Johnny's birthday is a reminder of God's grace. 

Of answered prayer. 

Of gratitude.

Of joy.

Friday, May 26, 2017

7 Tips for Going Through Surgery With Your Child

A couple weeks ago I took Johnny to the hospital to get new ear tubes put in his ears and to have his adenoids removed. This was the 6th surgery Johnny has had since he was born almost 4 years ago. I feel like I've become a bit of a pro at going through surgery with a kid. I'd certainly rather I were a pro at some other parenting skill, but this is what I've been given. So I thought I might as well pass on my treasure trove of knowledge to the world wide web. Hopefully this post will always be irrelevant for you. But if you ever do end up needing it, I hope it will be helpful.

Here's what I've learned.

1. Fasting is the worst. The required fasting before surgery is so hard for a little kid who can't understand why a meal might be delayed a few minutes, much less a few hours. If you can, schedule surgery for as early in the morning as possible. That way you can just wake up your child and load him or her into the car, leaving no time to even wonder where breakfast is. If that's not possible, distract, distract, distract.

When Johnny was still nursing and couldn't eat or drink before surgery, Alex would be the one on baby duty and I would hang out in a different room. No mom, no milk. Once we got to the hospital there was enough going on to distract him so that he wasn't constantly wanting to nurse.

Now that Johnny is older distracting him means putting on a favorite movie and getting out all the annoying toys. When he asks for breakfast I tell him that we are going to the doctor soon and he can have something when we got home. He seems to understand this at least a little, because he stopped asking for food.

Ear tubes, 2016
Ear tubes, 2017. The fire trucks have saved us from meltdowns twice!

2. Distract again. Once you arrive at the hospital, you may still end up waiting around quite a while before it's time for surgery, and your kid still can't eat anything. So bring lots of stuff to do! Our children's hospital has tons of toys in the waiting area of the surgery center. They also bring you more toys once you're in your pre-op room. I don't know if this is normal for children's hospitals or not, so you may want to bring some of your own toys, or coloring books. Johnny had been given a book of Minions stickers from his Grandma to bring with on this most recent surgery day.

If your surgery is inpatient, and you're going to be in the hospital for a few days, these items will also be helpful in distracting and entertaining your child while he or she recovers from surgery.

3. Bring a lovey. Johnny's lovey is Zebra. Zebra has been with Johnny for all of his surgeries. He gets to carry it with him, it stays with him during surgery, and is there when he wakes up.

Zebra with us for Johnny's 2nd surgery at 4 months old. 

At this most recent surgery they gave Johnny a tiny air mask to practice putting on Zebra, so that when it was his turn it wouldn't be as scary. Well, it was still scary for him, but he had Zebra and Mama with him for comfort.

4. It's ok to be upset. Like I mentioned before, I've become kind of a pro at taking my kid in for surgery. This time around I thought I was doing pretty good. It was just outpatient surgery, it would only last about 30 minutes total. We've definitely been through longer and scarier procedures. But when the time came to take Johnny in to the OR, I couldn't help but feel the lump in my throat, and the burning in my eyes.

It's OK to be upset when your child has surgery, big or small. It's ok to be scared when your baby goes through something that is scary for them. It's not a sign of weakness, it's a sign of love, concern, and empathy. And it actually is a scary thing, entrusting your child's health and safety to someone else. But while you may feel sad and scared, don't despair, pray, and do remember that the doctors know what they're doing.

Johnny after his very first surgery. He was 3 days old. 

5. Waking up can be rough. It might seem like saying goodbye to your kiddo before surgery is the worst part of this ordeal, but seeing them right after they wake up can be hard too. Depending on your hospitals protocol, they may still be asleep, hooked up to machines and monitors, or have wounds or bandages, which can look scary. They may be awake, disoriented, and in some pain and upset about it, which can also be scary. Or they maybe laying in bed groggy and bleary-eyed, but comfortable.

Whatever state your child is in, the important thing is that you are with them. It will comfort them to see you and know they're not alone. You can also help advocate for your child if you think they need more pain management or anything else.

6. Bring some support for yourself. For this most recent procedure I took Johnny to the hospital by myself. I didn't really have a choice. Alex can't miss a day or rotations unless it is an emergency. My mom was staying with Trixie. My dad and other family were working. And my friends either work or are home with their own babes. I thought I would be fine to take Johnny on my own, because it was just outpatient, and we've been through this before. But by the time we were done I was completely drained.

Having another grown up around is really helpful, even if the procedure your child is going through is minor, and all the more so if it is higher risk. It makes such a difference to have an extra set of hands to help hold kids, play with kids, get water, carry stuff to and from the car, if you're pumping to wash those stupid pump parts for the millionth time, wait with you during the surgery, and be emotional support.

If your child is going to be in the hospital for a few days make sure you are not stuck in the hospital the entire time. You will want to be by your child's side every minute of their hospital stay, but it will be good for you to get out a few times. Take turns with your spouse, or have another family member come so that you can step out of the hospital for some fresh air, go for a walk, or go home and shower in your own bathroom.

It's ok to take a break. In fact, it will be good for you. In order to take good care of your child you have to take care of yourself too.

7. Keep asking until you're satisfied. As your child's parent you are their number one advocate. It is important you understand what's going on and that you are happy with the care your child is receiving. So ask questions. If there is anything you don't understand, ask about it. If you concerned about something, ask about it. If you are unhappy about the way something was done, ask, nicely, about it.

It is true that there is no such thing as a stupid question. My experience has always been that health care providers are more than happy to answer questions and talk through anything with you until you feel good about it. No question is too small or too silly when it comes to your peace of mind and your kiddos healthcare.

Sweet snuggles after surgery in January 2014, 9 months old.

Linking up with Kelly for some quick takes!

Tuesday, May 23, 2017

Just a Mom

I recently quit my job.

And when I say I quit my job what I mean is that I stopped teaching piano lessons out of my home.

I've been teaching piano lessons for ten years. I was a piano major in college and started teaching a few students during my junior year. The first thing I did when Alex and I bought our house (10 days before our wedding) was get a piano so that I could start teaching from home, and I've been doing it ever since. I've always been proud of myself for actually using my less-than-practical degree. And I was especially proud of myself when I kept my studio going after I started having kids.  It was a creative outlet that I've really enjoyed and that has helped my life feel a little more balanced.

Until now.

I've been balancing my work-from-home job and being a mother for four years, and well, I'm losing my balance. No, I've lost my balance, and I'm spiraling out of control.

Coordinating babysitters, arranging who would pick up and drop off  Johnny at school, strategizing meals that I could make ahead of time and eat quickly between students, keeping our main living areas company-ready for half of the week, screwing up naps and bedtime because of lessons - all these things were making me crazy. All that combined with the regular chaos and sleep deprivation of life with small children, a husband in grad-school, and a child with medical needs that are far from being resolved, had me feeling like I was drowning and couldn't come up for air. To top it all off doing a very extroverted type of work - teaching kids - left my introverted self feeling completely drained at the end of the day, making me annoyed with my family and unpleasant to be around.

I want my family to come first - I want to give my very best for them. But instead of giving my best I found myself being half-present, always looking to the next thing, and treating my family like they just another item on my long to do list.

One night in January I was crying to Alex about how I couldn't go on like this. Something needed to change. He couldn't quit school, we couldn't get rid of our kids (not that we'd ever want to - that was a joke), we couldn't change our oldest child's medical needs. So that left teaching piano. That was something we could change.

As soon as Alex suggested I stop teaching I felt a wave a relief. But I also felt some stubborn pride. I had worked so hard to build my studio over the last decade. I liked being able to contribute to our finances in some way. I liked having something to do that was separate from parenting. I liked that I wasn't just a mom.

But being a mom is the best thing I've ever done! Having my children and caring for them has been my greatest accomplishment - more than my degree, or any of the jobs I have had, or any travel I had done, or talents I have developed. Even if I end up doing amazing things later in my life, I feel certain that nothing will top this experience of having partnered with God in the miracle of creation. And if quitting my job can help me be a better mom, and better enjoy these long days and short years with my kids, then that's what I should do.

So I quit my job. Not all at once. I finished out the semester, gave my students time to find a new teacher, and held one last recital. And now I'm done.

Now I'm just a mom. There are still demands, but the demands are not pulling me in different directions. My days are still busy, but there is less going on, the pages on my calendar have become very blank. I don't need to shower and put on my make up first thing in the morning anymore, although I usually still do, because I like feeling put together. I don't need to plan or coordinate and strategize to get my family through the day. We can move at our own pace.

And you know what? If feels really good.

Monday, May 1, 2017

what I'm learning from my hearing impaired child.

As I was getting dinner ready the other night I could hear Johnny and Trixie playing in the next room. All of a sudden Johnny raised his voice and shouted, "No Trixie! My train. Time out. One.....two.....three...."

Most parents get pretty used to hearing their children imitate their style of discipline. Some so much so that it may become an annoyance. But to hear Johnny sentence his little sister to a time out actually brought tears of joy to my eyes. 

Because he was talking, all on his own. 

These days our house is filled with the sound of Johnny's voice. But it hasn't always been like this. 

Johnny was born with a hearing loss. He was just four days old when we received this diagnosis. It came on the heels of a whole slew of other diagnoses, a NICU stay, and major surgery for Johnny. So when the audiologist told us that he had a mild to moderate, bilateral (both ears) hearing loss, it seemed like small potatoes.

Johnny was fitted with hearing aids when he was 8 weeks old and we thought we had dealt with his hearing loss. But by the time he was 20 months old his speech was severely delayed and it was clear that his hearing loss was something we would be dealing with for a long time.

We started taking him to weekly speech therapy at our local children's hospital. The therapy sessions were helping, but not as much as we would have liked. Then when he suffered major setbacks with retained fluid in his inner ear, had PE tubes put in, and had his hearing loss re-diagnosed as moderate to severe, we knew we needed to take more proactive measures. We enrolled Johnny in an oral school for deaf and hard of hearing children. The transition was hard, for all of us. (Picture me looking at photos of Johnny on my cell phone and crying while he was at school) But it was definitely the right decision. He has been receiving very intensive speech therapy 4 days a week for almost a year, and for the first time ever we are really hearing him use his voice all on his own initiative. 

I've been the parent of a hearing impaired child for almost 4 years, and the learning curve has been steep. Of course Johnny is worth any struggle, but this experience has been made even more valuable by the lessons I've learned along the way. I know they are making me a better mother, and I think they apply to parenting across the board and are worth sharing here. 

I am my child's number one advocate. We are fortunate in that we live in an area where there are multiple organizations for deaf and hard of hearing people, and parents of deaf and hard of hearing children. We have an amazing children's hospital system with a wonderful team of ENTs and Audiologists. And our public school system has a very aggressive and supportive early intervention program.

But even with all these resources and experts available, my husband and I are still our son's biggest advocates. We are the ones who are with him everyday. We can see what's working for him and what's not. And since he can't speak (much) for himself yet, we speak for him and help make his needs known.

In Minnesota we have something called Minnesota Nice. It's where you smile and be polite and try to avoid making anyone feel uncomfortable. I'm learning that I need to step outside of my Minnesota Nice comfort zone from time to time to get the results my child needs, whether it's being more assertive with the scheduler at the doctor's office to get him seen sooner, or switching speech therapists even though it might be awkward.

Education Matters. If I had a dollar for every time I was at the park with Johnny and some other kid pointed at his ears and said "what are those?" I could buy myself a pair of Frye boots.

I used to get annoyed by people asking about Johnny's hearings aids, and by answering the same questions over and over again. I didn't want anyone to single him out by drawing attention to his hearing aids. I wanted to people to treat him like every other kid.

But I am learning now that people won't be able treat him like every other kid until they understand his hearing loss, and so I am happy to educate them.

Those are hearing aids. He wears them to help him hear better, just like I wear glasses to help me see better. He was born with a hearing loss. It probably won't ever get better, it might even get worse. But he hears pretty normally with his hearing aids on. No, they don't hurt him. Yes, he takes them off when he sleeps. Yes, he can still do all the things you can do.

But the education doesn't stop with telling people why he wears hearing aids. I also need to educate people on how they can help Johnny reach his maximum hearing potential.

Crowded rooms, noisy car rides, being outside on a windy day, these are all settings that can make it difficult for Johnny to hear. But there are things you can do to help make up for that difficulty. Make sure he can see your face when you're talking to him. Tap him on the shoulder before you start speaking so he knows who's speaking to him. We have chosen not to use sign language in our house. With the craziness of Alex's school schedule, and having a baby in the house it was not a good fit for our family. But there are a few signs that we know and use, and we do plenty of gesturing when speaking to Johnny. Something as simple as pointing to the thing or person we're talking about can help him out a lot.

Understanding comes before expressing. Because Johnny's speech is pretty limited it's easy to fall into the habit of only using words that I know he knows. But if I only did this then Johnny would never learn any new words. I have to remind myself that he is capable of learning language, and that he has to hear a word anywhere from 1 to 100 times before he will start to use it.

Parents are their children's primary educators, even if the child goes to school outside of the home. That means it's up to me to keep challenging Johnny, introducing him to new things, and giving him the opportunity to improve. I do want to make sure that he can understand what's being said to him, but it's not my job to make things easy for him. It's my job to help him grow.

Intellect is shown in many different ways. I think this is something every parent knows to be true, until their child shows a lack somewhere. Then all the doubt floods in and the comparing starts.

Because Johnny's speech was so delayed for so long, it also delayed a lot of other learning milestones. He wasn't naming animals or imitating their sounds. He didn't know colors, or how to count. He couldn't identify any extended family by their names. I never would have said out loud that I thought he wasn't intelligent, but I think deep down inside I was afraid he wouldn't be successful in life.

Around the time Johnny's speech was at it's very worst we started seeing a new speech therapist who knew how to draw Johnny out. In that first 50 minute appointment with her Johnny said more words than he had said in all his previous appointments combined. "He's doing really well!" she kept saying to me. I just stared in stunned silence.

At the end of the appointment she told me not to measure his intellect based on how much he's able to say. Verbal skills are probably the easiest way to measure a child's intelligence, but they're definitely not the only way. When I started to look for his intelligence in other area's I began to see it everywhere; in his ability to do puzzles, and build with blocks, his fine motor skills in holding a pencil or using a scissors. I started letting him help me with chores around the house. I was amazed to see him folding pieces of laundry and putting shoes away where they belong. I let him help me unload the dishwasher and he sorted all the silverware correctly and knew in which drawer or cupboard all the dishes belong.

Evaluate how you define success. Johnny's speech is doing so much better than it was a year ago. He's counting, identifying shapes, colors, animals, letters of the alphabet, and he's able to communicate his thoughts and desires. He still has a lot of work to do to catch up with his hearing peers, but we are hopeful that his hearing loss won't limit him as he grows up.

I do still worry sometimes about the future, and that Johnny won't be "successful" in life. When I find myself thinking those kinds of thoughts I need to ask myself what my definition of success is. Is success getting into a great college, getting a high paying job, and being esteemed by many? If so, then he might not be successful. Come to think of it, Trixie, or any other kids we may have, might not be successful either.

But what are the things I really want for my children? I want them to know and love God, and to know that they are loved by Him. Then I want them to know that they are loved by Alex and me. And I want them to use the skills God has given them, and to have close and meaningful relationships to help carry them through the challenges of life.

If this is my measure of success then Johnny is well on his way.

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