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.

t h r e e

Everyone's heard of the terrible twos, but our friends with older children warned us that it's the terrible threes we need to be wary of. 

Johnny turns three today. We had a party for him last night with family and his godparents and best buddy Iggy. My grandma said that three is such a precious age because kids are not old enough to understand birthdays, or to expect gifts. But they are old enough to take in a party, and enjoy opening the gifts.  They are actually somewhat amazed that they get gifts. I think that was pretty accurate of Johnny. He seemed to enjoy his party in a sort of sweet and blissful unawareness. 

Until it was time to go to bed. Then we got our first taste of the terrible three's. Lots of tears, kicking and screaming, and refusing to go to sleep until 11:00. And then still waking up at 6:00 am. We've all been a little out of sorts today as a result. 

Despite being cranky I've still felt a warm glow about me today. It's the anniversary of when I became a mom. It's another year that we've gotten to spend with Johnny, who, it's true, does make us a little crazy pretty much every day, but he is our joy. I feel deep gratitude for Johnny's good health. I feel the strength and unity our family possesses from everything we went through during his first year. I feel tired. After all, it's been three years of sleep deprivation, but I also feel happy. Very happy. 

Happy Birthday, Johnny! 

let me get you all caught up.

Back to life, back to reality.....

Anyone remember that song? After two weeks of staycation and having Alex home ALL DAY these are the words now running through my head.

We sent Alex off to PA school this morning. It was a little sad to see him go when we had gotten used to him being around during the day, but I am excited for him, too. Alex is one of those people who really loves learning and truly finds things other people may find boring, interesting.  I know he is going to enjoy school, even though it will be hard. And I know when he's done he'll have a career that he enjoys and finds rewarding.

But we had great little staycation.  We got a ton of little house projects done that we normally don't have time to do, including hanging a bunch of shelves, cleaning out the garage, and totally reorganizing our closet. We got to go on a date to our favorite little Vietnamese place. And we started watching Revolution on Netflix. It's from the same creators of Lost (such a love/hate relationship) and it feels very Lost-y. But it's exciting and not too scary for me.  Now that Alex has to study in the evenings I guess I'll have to watch it on my own. 

Johnny turned two! We had a nice "little"gathering of family to celebrate, (our immediate families alone total over 20). Johnny had a juice pouch for the first time and thought it was the bees knees. And I'm realizing that I always stand like this because whenever I do Johnny copies me. I don't usually lean on the wall like that, but I do cross my ankles.


Johnny got a kiddy kitchen. He loves it.  It's happily installed in our kitchen and I'm hoping, hoping, hoping it makes getting things done in the kitchen easier. 

Johnny doesn't like cake (weirdo) so I made him an ice cream cake inspired by something I saw on Pinterest. 

Here's the orignal.

found at
And mine was not worthy of a photo of it's own, but you can see a little of it in the photo below. Let's just say it rivaled the failed Pinterest attempts you see on buzzfeeds and things of that nature. At least it tasted real good.

Oh, and Johnny can't really blow out candles.

This is what was happening. But he tried so hard.

Last weekend we took a trip to WI with my family for my cousins wedding. In an attempt to be frugal we got two rooms; one for the the boys, my dad, two brothers, Alex and Johnny, and one for the girls, my mom, sister, future sister-in-law, and myself. This meant that I didn't have to worry about Johnny during the night at. all. And my future sister-in-law got to fulfill her dreams of rooming with her fiance's female relatives. Sorry Faith! Actually, she was pretty cool with it. 

Vacationing with family when you have babies/toddlers is the way to go.  There was always someone to watch Johnny or play with him or keep him from flushing the toilet over and over. My dad even took charge of putting Johnny to bed. Major plus. I'd definitely do it again.

It's been a couple years since Alex and I have been to a wedding. And they're not as fun with a toddler as I remember them being without one. Oh well. My dad was there again to do some chasing. And my husband looks slammin in a bow tie. So all in all it was a positive experience. 


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7 quick takes vol. 16: iPhone photo dump

linking up wtih Kelly at This Ain't The Lyceum for some quick takes.

We are reaching waaay back to get you all caught up and to give me the opportunity to post some iPhone photos that you otherwise would never get to see.


On Mother's Day we took the train downtown to the St. Paul Farmer's Market where Johnny picked out some hanging baskets for me. Going to the farmer's market on Mother's Day has become our thing. And getting me hanging baskets for my Mother's Day gift has also become our thing. Every year I try really hard to keep them alive the whole summer and usually make it until August before they are totally dried up, but this year is going to be different. 

We had a blast riding the train. Shamefully it was our first time, even though it's been running for over a year and there is a stop 3 blocks from our house. We didn't even have to pay because I had two free passes that were included with my jury duty summons. Jury duty, the gift that keeps on giving. 


We've started potty training! Well, only a little.  If you've ever come to our house or spent any time with us at all you will know that Johnny poops A LOT. This is because of all the intestinal surgeries he has had. No joke, it's about 10 poops a day around here.  So we just figured we should get a potty chair and stick him on there a few times a day to try to reduce to number of diaper changes we have to do. It's been great. The first day he went 6 times in the potty chair.  He really likes to sit there and then peek in to see if anything has come out yet.  TMI? Ok, sorry. 


Also on Mother's Day, we became godparents again! Johnny's godparents, Ian and Jacqui, welcomed little bundle Archie about a month ago, and we were named his godparents. It's just a big circle of godparents around here.

Johnny really doesn't like it when I hold other babies. He has no idea what's coming. 


My husband is unemployed! It's ok though, we knew it was happening.  Actually, it was intentional. He's going back to school to become a Physician Assistant. His program starts June 1 and he's taking a couple weeks of vacation before he starts. And it has been SO NICE to have him home.  I just have to remind myself not to get too used to it. 

This is what staycation looks like. 

Actually we have a to-do list the size of Texas that we've been trying to get through.  But there's been plenty of lazy time too.


In related news, Alex started a blog! Yay! Welcome to my world, sweetie! He will be blogging about what's it's like to be in PA school and will also be doing lots a baking projects now that we no longer have the unlimited access to bread that a bakery manager's family is accustomed to. Find him over at The Baking PA.


Last week Johnny and I went to visit a friend in the hospital. It's the same hospital we go to for speech therapy, and the same hospital where Johnny was in the NICU. While walking to see our friend we passed right by the entrance to the NICU, the very doors we walked in and out of for 9 days while our baby was there. I haven't been back since we left and at first I was feeling kind of nostalgic, but that quickly turned into painful memories and the welling up of eyes. I don't think about it as much as I used to, but I know I will never forget what it was like to have our baby in the NICU. 

But we have come a long way from this:

to this:


Speaking of Johnny, he is turning into quite the budding photographer.  He takes even more iPhone photos than I do. In fact, hardly a day passes when I don't find something like this on my camera roll.

Here is one of his most recent selfies. He's still got the cheeks. 

And because there is nowhere else to fit it in, here's a picture of Johnny wearing Alex's socks. He loves to wear Alex's socks. I guess they're comfortable?

Have a great weekend!


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Johnny Speaks

When Johnny is focusing hard on a toy, or looking curiously at something going on outside and we can just see the wheels turning in his head we often say something like this: "I can't wait until we can hear what's going on in that little head."

We're still waiting. Johnny has such expressive faces. It's easy to figure out what he wants or needs. But he remains, for the most part, pretty silent. Sometimes he does pipe up and babble or coo or sing. Then we say something like this: "I love to hear your pretty voice!"

And oh how I want to hear more.

During the first week of Johnny's life, as we were receiving all of his diagnoses, his hearing loss was the least of our concerns.  I was getting letters and phone calls from all the deaf and hard of hearing associations in the state wanting to sign me up for their news letters, and get me involved with a mentor, and put me in touch with a speech therapist and sign language instructor.

And I was so annoyed!

My child is not deaf. He can hear. And his hearing aids are correcting the hearing loss he does have. So what's the big deal?

But as things have wound down with other medical needs, as he's gotten older, and people keep asking, "does he have any words yet?" and we keep saying, "no, not really." we've started giving his hearing loss more attention.

Johnny signing "help".

It's hard to say whether Johnny's speech delay is related to his hearing loss, or if it's a part of his shy and stubborn personality. He was born with a mild to moderate hearing loss, he's been wearing hearing aids since he was 2 months old, and theoretically with the hearing aids on, he should hear normally. But he is still at risk for speech delay.

Because of that risk, and the fact that he was 20 months old and had only one word ("up") we started weekly speech therapy appointments in January. They are first thing Monday morning and oh I hate starting the week with a frantic morning of hurrying to get diapers changed and breakfast eaten and coats on and out the door. And sometimes Johnny's shyness and stubbornness dictate the appointments and he doesn't do or say anything and I wonder if it's just a waste of time. But all and all I think it's been good.

Johnny signing "bath time".

The speech therapist first encouraged us to give sign language another try, which we had done very halfheartedly when Johnny was around 8 months old. We did, and within a week Johnny was signing more, all done, bath time, and milk. since then he has added help, open, diaper, waiving bye bye, and a very fuzzy version of the sign of the cross! It's pretty cute to see him sign, but it's even better to see how proud he is when he realizes he's communicating with us.

Johnny signing "more".

After he mastered some signs we started trying to get him to say the word with the sign.  This has been a lot harder than just signing. And it often seems like no progress is being made. But he is making progress. Before we started therapy the only word he had was "up".

Now he says all done, more, help, up, bye bye, papa, mama, hot, open, ("mmmpa") and sometimes he'll bath time. He also says ball, bite, and bus, but they all sound the same. And he babbles. He babbles all the time. Well, not at therapy.  At therapy he is basically silent. But at home he babbles all the time. He knows what he wants to say, and he's starting to say it to us.

And I love to hear his pretty voice.


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// T U E S & T H U R S //

Our Summer schedules are in full swing.  I have started summer lessons and Alex is back in class. This summer is going to be a doozy for him.  He has class every Tuesday and Thursday from 1:00-9:00. He still goes in to work before that so that means he is gone from about 6:30 am to 9:30 pm. That also means that I play single mom on those days.  We don't like Tuesdays and Thursdays around here.  For Alex it's stressful and tiring. For me it's isolating and time drags by. Especially in the evenings as bed time approaches and I miss my parenting teammate.  The world around begins to quiet down but I am restless until I get the text, "I'm leaving class now!" Then I can relax. Needless to say it's hard for both of us. I admire Alex so much for his hard work, and I know it will all be worth it. 

Thankfully, Johnny has been really good lately. The one-year-mark has brought a very happy little guy. So what are already hard long days could be a lot harder and a lot longer, but haven't been!  The only really bad thing Johnny did today was dunk his hand in my coffee mug and then grab my white shirt. I was really setting myself up for failure there by holding him and my coffee mug with the same arm. And I should know by now that I just can't wear white shirts anymore. 

I made a little smash cake for Johnny's birthday party, put in the the freezer, then forgot about it. Johnny just had a slice from the big cake at his party. So today I pulled it out of the freezer, frosted it, and Alex and I had it along with a little white wine to celebrate the end of another long day. 

Fulfilling a dream today: letting Johnny run around in nothing but a t-shirt and diaper.  When he had  his colostomy we had to keep him in a onesie or he would rip his bag right off his belly.  It was the middle of winter when his colostomy was taken down so he stayed pretty bundled.  Now it's summer and we are embracing the diaper and t-shirt look!

I can't resist his little butt cheeks and I couldn't resist sharing these.  I'm sorry Johnny of the future, I know you'll hate me for this! 

// U P D A T E //

I think there is some quote about how having kids can be scary because your heart goes walking around outside of your body.... Has anyone heard this? Do you know what I'm talking about?

Anyway, I've been thinking about that a lot, cheesy as it is, because it's kind of true. You bring a new little person into the world, who is very much a part of you, but you can't always control how the world treats them. You want to protect them and ensure that no evil will ever befall them and that they will have a good and fulfilling life. But some things are out of your control, and things don't always go the way you planned. 

I've been thinking about that a lot too. Johnny is one now. We've had him for and year and it's been great and he is amazing and brings so much joy. But this past year has also been the hardest, scariest year of my life! We have experienced things that I never imagined I would go through. We are a strong and united family because of it, but that has not come without pain. 

I have been thinking about how before Johnny was born we prayed everyday that we would have a healthy baby. And then our baby was born with some pretty major birth defects. I'll never know why God didn't answer our prayer. Or rather, answered differently than what we wanted. But I know that for whatever reason (to grow, to learn, to give Him glory) he has allowed us pass through great difficulties, and what's more, has been faithful, has been a comforter, and has provided strength when we needed it most. And here we are, a year later, happy, enjoying good health, enjoying our baby. 

I like to be in control and I wish I could make it so that Johnny doesn't have to suffer any more in his life. He's been through so much, and doing so well. But there are still some unknowns in regards to his health. Namely his neck. I think I have mentioned before, back in December we were told that the top two vertebrae in his neck didn't fuse together properly, thus leaving a week joint which caused his head to tilt to the left. We were told that worse case cinario, Johnny would heed surgery to fuse that joint together, correcting the head tilt, but leaving him with a pretty limited range of motion in his neck. Whether or not he would need this was a complete unknown, and we were left to wait and see how his bones would continue to grow. 

Six months have gone by since then, and it's time for some follow up X-rays. These will be done Wednesday morning. His neck looks so much better than it did, and I can't help but feel great optimism. (Which I am always hesitant to do.) If you are reading this will you please join Alex and me in praying for great results, and that no surgery would be required? 

I know that The Lord is good, that He is in control, and that I am not. And whatever happens, He will see us through. 


// O N E //


Now you are one! It feels like we were just bringing you home from the hospital and like we've always had you all at the same time. Time passes, each day is so full, and this first year has gone by leaving so many memories in it's wake. Some moments and feelings are preserved so perfectly in my mind, etched in deeply by extreme emotions. Other things linger only as an impression. But I know I will never forget this first year we have had with you.  

Now you are big! Well, you've always been big; 9 lbs 7 oz put you at the 90th percentile right from the start. But now you are "sooooo big!" (as we say in your favorite game.) You're almost 22 lbs, and my arms are getting a good workout from toting you all over the place. You're long too,  I notice this most when you are nursing and your body is stretched out across my lap. You're active. You crawl and cruise all over the house. We can tell you want to be walking on your own, and it's only a matter of time as you become more confident and more daring. You love to play with toys and go for walks and look at the world around you.

You are brave. You have been through more in your first year of life than most people go through their whole lives through. I think about you in your incubator just shortly after you were born.  You didn't cry. You just looked at us with your deep eyes. Everyone who came to see you said you were brave. I've learned to be brave too. I know that you won't remember any of these things, (and I'm so thankful for that) but I want you to know that you were brave and I hope that you carry that bravery with you as you grow up.

You have a will. And you exert it. Often! You know what you want and you will fight and wrestle and wiggle to get at that power strip/laptop/toilet/stack of mail/pile of laundry. I know that you can't tell right from wrong yet. But I have this growing suspicion that you can tell what we don't want you to do and that you take some secret delight in doing it.

Example 1: Moving the TV. You love to stand between the wall and the TV stand and push the TV in any direction you can manage. We always tell you to stop and quickly take you away from there because it's dangerous! But that only makes you want to go back for more. You'll put your little hand up on the TV and then look over at us and smile!

Example 2: Diaper Changes. You always try to escape the diaper changes. I put you on the floor on your back and you quickly roll over and crawl away. I hear you squealing as you go and if I happen to catch a glimpse of your face you are smiling! 

You are a mama's boy. You want to be held and cuddled and nursed. You sleep best when you sleep with me. You give me sweet hugs and kisses. You've always been a mama's boy and I hope you always will be. 

Every day you are a blessing.

Every day you make me smile and laugh.

Every day I thank The Lord for entrusting me with you,.

Happy First Birthday, Johnny.  I love you!