You Know You’ve Spent a Lot of Time in the Hospital When..

A lot of these could apply to if you or a parent or other loved one is in the hospital, but mine is mostly geared toward things you will notice or become accustomed to if you have a child in the hospital.

1) You start to grab a jacket (even in summer), snacks, and water on the way out the door to the emergency room. Hey, you’ve done it before-you know whether a minute to grab those is going to make a difference. And you know how cold the ER is along with wait time.

2) You don’t need reassurances anymore about procedures like X Rays, feeding tube placements,or respiratory treatments because you’ve seen it all already.

Ethan and his Dad hanging out on one of Ethan's shorter, less dramatic hospitalizations (aspiration pneumonia, one night)

Ethan and his Dad hanging out on one of Ethan’s shorter, less dramatic hospitalizations (aspiration pneumonia, one night)

3)During said procedures, you go ahead and volunteer to hold your child’s limbs in place so the procedure can be done quickly and correctly without extra kicking from your kid interfering.

4) Instead of calling for a nurse for everything, you try to spot oxygen adhesive dots or IV tape and try to do it yourself before you call (if its in an open public area. Not advocating for rifling through the nurses’ personal workspaces lol)

5) You’ve had just about everything they will ever serve in the hospital cafeteria and know what is tolerable and what is just gross.

First time to hold him after heart surgery. He was there 7 days.

First time to hold him after heart surgery. He was there 7 days.

6) You have made it into at least one public service announcement or brochure for the hospital.

7) People on various units see you and say, “Now you look really familiar” or “Your child’s name is so familiar…you’ve been here before, haven’t you?” Or depending on the staff or unit, they don’t even have to think-they just run up to you betweeen patients and say, “Hey! OH, he’s grown so much! What are you guys in for again?” Or “sorry I haven’t said hi, its just been so busy. But I wanted to come over and see you guys!” Its nice to be reunited, yet  its also like “oh my…our lives.”

8) You are able to direct lost parents around te hospital better than some staff because you have been to nearly every unit as well as almost every speciality outpatient clinic in the hospital.

9)You can help other parents compare notes on who is best at finding tiny veins for blood draws and which doctors are reliable (or not).

10) You aren’t phased by holding a baby with cords. It doesn’t scare you or make you nervous, but still are annoyed by it. Its always annoying. That hasn’t changed for me . 😉

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The Church: Why You Shouldn’t Take it for Granted

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I know at this point readers are expecting something about tonsillectomy or Ethan’s recovery, and I will post about that when I have more of an overview, but instead I wanted to share something that has been on my mind and heart more and more over the past 2 years…Before that, though, I’ll rewind a little to give some background.

CHURCH ATTENDANCE, THE EARLY DAYS
I have gone to church my entire life like many good southern girls. 😉 Only for my family it wasn’t just a routine like some may think. My parents raised me to appreciate church and to gain meaning from it. We had devotionals (with actual meaningful discussion) around the supper table and in our beds at night. I went to AWANA as a kid to memorize Bible verses and play. I went to youth group, youth choir, youth camps, you name it. In college I did keep on seeking out Bible studies, ministry to help International students get rides to the special food stores in the city where they could make foods from their countries they missed. Ryan’s upbringing was much the same: His family had him in church, and with a definite purpose behind it. Their family also practiced having a personal relationship with God, and with serving others.

When I was single, I went to a singles group at a church and invited my friend who is now my husband. ( Bonus! ) And when we were married, Ryan and I still stayed true to being involved in church by serving as Sunday school teachers for elementary kids and serving as youth group leaders. Ryan also joined me in doing some child sponsorship advocacy at some Christian events like church and concerts and we had a great time serving God in that way.

LIFE HAPPENS.
Then we moved to another city, and another, and attended church trying to find our niches there. The two churches were connected (multicampus church) and we enjoyed it but due to all the changes in moves and pregnancy, jobs etc., the most we did was try out being youth leaders and when I was (very) pregnant, helped in the children’s ministry.

Then Ethan came a few weeks early. And as many well know about us, it has been a very VERY busy two years! We love that little guy but wow we should have registered for some luggage and soda bottles on our baby registry, we’ve had so many hospital visits! If you are lost read Ethan’s birth story and about his surgeries and sicknesses in posts throughout.
We have changed so much about our lives, like any parents do, but it has included a ton of transitions and complete life changes such as selling our home, moving to another city and renting an apartment eventually. We did that to be close to the children’s hospital in our state and to be close to family while we are in this very busy stage of getting diagnoses, treating, and repairing things to get little Ethan where he needs to be.

WHAT WE SEE MORE CLEARLY BY WHAT WE MISSED ABOUT CHURCH

No, we didn’t stop going to church. We didn’t even stop going to lifegroup. (bi-monthly meetings, sometimes a Bible study or topical group that encourages one another spiritually) But we missed HUGE chunks of church and consistency in a certain church, and consistency in WHEN we could go to church because we were at the hospital, working, or asleep after being up all night at a hospital. I’m not trying to get out my violin and start playing a sad tune for us, but I’m saying how we missed out and why its given us such a greater appreciation for church in general!

1) GOING TO CHURCH IS A PRIVILEGE. When I DID get to attend church, I looked around a felt like it was such a privilege to join with other Christ-followers and all get together for that purpose, to worship alongside them. And it made me think, wow, this is a little glimpse of Heaven, how amazing is this? I wouldn’t have thought about that EVERY time I went to church before, but since I’ve had to miss out NOT by choice? I think about it everytime. And something interesting happens. I don’t CARE what style the song is. I don’t even really care if I know the song. I wasn’t ever one to whine about those sorts of things anyways, but having the perspective of church being such a rare privilege definitely strips away all the petty things. It may not seem petty to some, I understand, but trust me when I say it is! Followers of Christ who are in a new place, a different country, I’m sure would not care so much about the style if they had the rare occasion to meet with a fellow believer. In the same way, if I haven’t had the opportunity to have fellowship with other Christians and worship alongside them and then suddenly I get to, I will not be picky about style. Aside from the music worship, when you hear a word from Scripture by any pastor-any Bible-believing, theologically sound pastor, it doesn’t matter if its the stomping, “can-I-get-an-Amen?” pastor or the kind that talks like Mr. Rogers when he preaches (no one in particular comes to mind, don’t worry) , if you GET to hear someone teach from God’s Word..jsut break that down and think about what that means. The God of the Universe wants a relationship with you, to save you, to give you purpose AND left an instruction book and love letter that he has appointed pastors to teach from…maybe you will appreciate it more. I don’t always think of it that way, but by golly after missing a lot of church and needing it I do!

2)THE CHURCH HOLDS YOU UP WHEN YOU ARE IN THE DEPTHS. We had new appreciation for the Church because the Church acted as the Church to us in our times of need. Now when I say the Church–I mean the Christ-following, evangelical Church that came to our aid in the forms of several different church bodies and individual Christians. When Ethan was first born, some pastors we only met once at a church we visited were out mowing our lawn! I don’t even remember their names. Friends from a lifegroup that we also didn’t know well yet brought us meals until we had food coming out our ears once we returned home from NICU. People from our parents’ home churches sent vending machine money, meals, prayers, met with us in person to pray over us. A girl I met once at church texted me encouraging words and verses each morning and my youth pastor’s wife from growing up texted me similar things in some of our darkest times. I hadn’t seen her in years. People asked to share Ethan as a prayers request with their Sunday school classes, Christian friends from highschool contacted us online telling us they were praying for us last year when Ethan almost didn’t survive from a medical perspective. Of course our close friends and family were constantly asking us “what can we do? Are you ok? Can I buy anything for you? Scrub your toilet? Feed your dog?” THAT is the Church, a big part of it. Faith without works is dead, as it says in the Scripture, and all these Christians definitely put their faith to work in helping us! Even today with Ethan’s fairly simple surgery, we had pastors and Sunday school leaders from two churches come. Two of those we have only known for a few weeks.

It was kind of strange being on the receiving end of the serving, having grown up in church and served ourselves. I had a pretty easygoing life before then. I love my life more and more everyday, though, so don’t get me wrong! I think anyone who knows me and has read even a sentence of the rest of this blog know I’m a pretty proud Momma! It was a good kind of strange, though, the being on the receiving end. It made me see how much we all need one another, in the Church. Also how much the world needs the Church. Of course I did know this before, but I see it more vividly now, the need.

BOTTOM LINE

I say all this to say..church-goers, stop yawning at church and sing hallelujah with some gusto! (okay, you can yawn. This Momma’s tired too. But take notes and we will help slap each other to stay awake and learn something with the knowledge that not everyone in the world can get together to worship God with such ease as we do here!)

And non churchgoers..give it a shot. We’d love to have you. 🙂

“Scream”

8 Months Old sleeping in PICU

8 Months Old sleeping in PICU

Just want to scream sometimes,
But that’s what unstable people do, right?
Do you ever get tired of having to be stable?
I do.

Can I just get a pillow or an empty forest?
Something to throw when I’m sick of this scene?
Have you ever had a place that you owe something to-
but you want to wail on its very walls at the same time?

Tell the people inside to just leave you alone-
let me take myself, my kid,
and just go? Yet, you can’t.
Just want to stop the effort, the worry,
and go be “normal”
for awhile,
whatever that means.

So then I scream out to God-
And His answer is the same as before, calm.
Unchanging, saying

“I am here.
I have a plan
And its okay now,
to scream.

Lean on me, quit trying
so hard and let me.
I know what it means to scream, too.”

I wrote this when reflecting on some times in my recent life, in the past few years. Who would like to guess what the inspiration was, what times they were? 🙂 Thankfully, the times I feel like “screaming” are not all that often. But they happen. And I thought some others could relate. Everyone feels like this sometime if we are honest with ourselves.

Comparison, Thief of Joy

This was written in the middle of Ethan’s stay in PICU for RSV in Winter/Spring of 2014..

Well as soon as I started saying how thankful I was that we didn’t have a repeat of last year, here we are in PICU again. However, it is not just the same because last year he declined very fast and had to be on a ventilator and chemically paralyzed.
It is so frustrating that we are so very careful with Ethan yet he gets RSV anyway. Since I am so busy tending to Ethan at the hospital, I tend to reflect on the car ride to and from the hospital when I am taking a turn at spending the night at home. Yesterday I started feeling a little wronged, that things were unjust, unfair. “ We already have a kid who has therapies all week long..he struggles through every milestone he meets…we have been so thankful and patient while we stay indoors and away from birthday parties and such trying to keep our child safe through the winter..while we see other families go and do, seeming effortless. (I know this is not true, it just feels it sometimes.)

I asked God and myself, “Why does he have to suffer again? Is he going to spend his second Easter in the hospital again?” In a dark moment of worry my husband said it aloud too, “Why does this have to happen to him? It just isn’t fair…” I’ve had friends tell me this before, that its unfair and I still felt strong and sure that yes, its unfair, but I don’t feel wronged. Things do happen for a reason.
This is all true. But did I feel it while driving home yesterday? No. Then as I heard the Christian radio station (K-LOVE, that actually isn’t playing as often as, say, classic rock or children’s music,) happened to be on at just the right moment. Someone from a Proverbs 31 ministries said that, “Feelings are indicators. They show the condition of our hearts..” She went on to say that basically we should be mindful of this as not to let it drive how we act and interact in ours lives. I really needed to hear that yesterday. Just because I feel wronged, an outsider, doesn’t mean that I am. It would be plastic and disingenuous to say that I do NOT sometimes feel that things are unfair and that I get weary, but I am realizing that the weight of the feelings are just that and it does not mean God loves me any less or that people take us or our experience for granted, because it is very clear that most do not. People are very gracious in saying that they are praying for us and that they are reminded of what they take for granted as people, as parents.

It does still sting sometimes to see how seemingly effortless other parents’ lives can be, that they can just tote them around, breastfeed them, go play with other kids, and choose what to do with their free time (or time as a stay at home mom, rather than have time blocked out for therapies that would otherwise be trips to the park or fun activities with my child.) It’s hard to look outside at a beautiful day from a hospital window.

While I know all families have some hardships (because hey, this isn’t Heaven!), it FEELS like families who don’t have kids with ongoing special needs have it easy even if I’m just seeing the fun parts of their lives.

I also know that comparison is the death of happiness and the thief of joy. After all, you always find someone who seems to have it easier. Or seems to have it harder. That is just how life is, we are not supposed to all have the same life experiences. God shows himself in us humans in our compassion toward one another, and our help for one another. For example, people who have grown children or no children can come alongside those who do have children and help them. I feel guilty because I feel I can’t do much for others who have children in the hospital (because I definitely feel their pain!) because we are in and out of the hospital so much and try to maintain Ethan’s health when he is at home. That is just one aspect of the beauty of differences in experiences. By the same token, people have told me that perspective it gives them to see our family struggle through, but keep faith, through Ethan’s illnesses and challenges that come with his Down Syndrome.

I do think we have, overall, a great way of appreciating and seizing moments because we have spent so much time NOT at home. It is that much sweeter when we are home. That should come soon again, we pray.

Occupation: Stay at home mom :)

STAY AT HOME MOM
Well I have been a stay at home mom for about two months now… First of all, the reasons my husband and I made this change from me working full-time to being a full-time stay at home mom are as follows…Ethan kept getting sick and being hospitalized (twice but had already had two surgeries, so already at lot of time hospitalized under his belt..or diaper 😉 ) When he got pneumonia from aspiration, it is true that exposure to daycare germs had nothing to do with it; however, because I could have taken him to the doctor sooner if I hadn’t been working (and Ryan was also working that day), we wondered if the hospitalization could have been avoided. Maybe, maybe not. Bugt the next reason we chose to make this change is that Ethan has so many appointments for wellness and follow-up checkups in addition to times he becomes ill that I was running out of PTO as it was…I could hardly take off for holidays and my own health, much less a vacation (whatever that is, ha!) Our temporary plan was for Etan to be with his Daddy on his off-days (He’s an RN) and with his sitter on the other days (who was an amazing sitter, by the way!) We were about to tour the developmental prek center down the street from my former workplace when Etan got pneumonia. We had already been thinking over me quitting work to be at home just to put off Ethan being in center until he was more hearty and able to withstand sickness that come with lots of group care exposure. And because we just wanted a more balanced life! The hospitalization made the thought become a decision.

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W think it was a great decision…he had 4 regular appointments (not counting therapies) in FEbruary and I took him as many or more times for illness symptoms! There is no WAY we could have kept up with missing that much work. Or we would have not ended up taking him in as much possibly, and maybe missed something. This gives me the freedom to take him over a slightly alarming symptom, rather than an out of control symptom.

Please note: I do not think working moms are not good moms by any means..I was one after all! Different situations all call for prayer and consideration on what is best for each family. Some people may feel they have things all balanced and all together with both parents working. We have just enjoyed this adjustment and for us in this time in our life, it is the right decision.
Here are some things I love about being a stay at home mom that have added to or made things run more smoothly for my family:

1)I get more time with Ethan! When I was a fulltime working mom, I felt guilty for only seeing him for supper and bedtime routines. ON the weekends, I felt I was making up for lost time, and that sometimes meant I was not making efforts to do things with friends, or make additional friends when we moved life groups or churches which meant
2) Increased social life ..seems paradoxical, doesn’t it? While I don’t see coworkers throughout the day (not that I had much time to talk to them I was so busy!), I have more emotional freedom ( we will call it. 😉 ) to feel okay about having my parents watch Ethan while I hang out with my girlfriends or my husband and I get together with another couple.
3) Increased time with husband. You would think it would be the same, and maybe for some families it would. For us, this means on Ryan’s days off, I am at home! So we have more time as a family unit as well. I also don’t feel I have to choose between Ryan and Ethan in the evenings. Of course I wanted to spend time with Ethan in his waking hours when I was a fulltime mom, and I had to get him ready for bed! Ryan usually needed a break as he was alone all day with a toddler (not something most men do or are even willing to do!) Or we were all three together. Either way, I tend to put Ethan to bed right at his bedtime rather than dragging it out to see him more on weekdays as a working mom.
4) More balance in household functioning and in marriage. When I was working, Ryan and I basically had the same roles and traded off. It was working out okay, but I love the dynamic of us having complementary roles in the household and family..This means we aren’t both looking at the other to complete household chores in our only time off work..it did get done (mostly by Ryan, honestly because like I said, I was making up for lost time with Ethan on the weekends. I feel bad I didn’t do a little more, although I sure did try.) Now, I get the chores done alongside Ethan’s play (although he still gets plenty of undivided attention and play with me 😉 ) and I get chores done during his naps (and therapies).
5) More “emotional freedom” and time to do ministry. I think some form of ministry needs to be done regardless of circumstances, but time and the freedom (also referred to as “the gift of availability” as I’ve heard some refer to it) come with not having as many demands to juggle. I do not mean that being a stay at home mom is “easy” but I do believe if it is less complex (for us anyways) and there is just more time available. I haven’t done a specific church ministry in a while since we have had so many transitions and are praying about which church to be a part of at the moment, but I do plan to do so and don’t feel as stressed about juggling everything.

I realize that people with multiple children have different experiences but this is ours and what we enjoy about me being a stay at home mom. I love it! I plan to share more about what I do for Ethan’s learning and so forth at home. By all means share what you love and do for your kids as a stay at home mom!

I have also had experience as a part-time working mother which I enjoyed, but with a toddler it would be pretty difficult with the paperwork I’d imagine! (He was a young infant at the time, and I often had paperwork to do at home when I worked on contract as a therapist)