Changes for Ethan and our sanity

I don’t even know what this is going to look like since I opted to skip pen and paper journalist and I have had so much I have not fully processed because I’m taking care of kids/working and chugging along, but I knew I needed to journal by typing or pen and paper (cuz I’m way faster at typing than pen and paper writing, so here we are.) And I like to share some things because its hard to have time or the words on the spot in family gatherings and attempts to talk with friends. Because of all the things I am going to share is some of the reason I might come across as flaky or inconsistent in trying to make or maintain friends although traditionally I have been pretty great at that (ha)

So here we go…
What I thought was a short-term journey of getting Ethan to get “a little older and stronger…to school age” etc. has become more clearly not quite as short term as I had thought and hoped. He gets hit just as hard by illness and as we were told in May by his pulmonologist (lung doc/APN) his lungs are like “preemie lungs” basically. This to my understanding is mostly due to him being on a ventilator for a month as a baby (7-9months old in hospital). I used to say I don’t think I have PTSD, even a little bit of the characteristics (and I mean real PTSD because Im a therapist for those who don;t know, so I generally don’t throw out diagnosis labels like slang) but more and more I feel like Ethan’s illnesses and anxiety revolving around it have gotten to me more than I thought. For example, I was at orientation and doing a half day of CPR like I have for other jobs in the past, even in NICU before we could leave with Ethan we had to do CPR. Never have I felt I had to look away, have my heart beating fast, or start to cry from watching a basic, poor acting and low budget CPR video.

I am still positive and feel like overall he will do well, but it is really overwhelming to know its no longer an “if” Ethan will get hospitalized (and not just an overnight trip either. We are talking a week ast least, even with home oxygen available for the tapered oxygen end. Which is now up to 3 weeks overnight when he has a basic cold, by the way.) Those hospitalizations usually involve a stay in ICU sometimes for his history but they actually said they (experienced Picu nurses) were worried he was going to have to be put on a ventilator a few weeks ago…at age 5! for RSV! That illness is usually nothing for older kids and we were told he is so inflamed he could have another bad round if he were to get it in the next 3 months (or something like that…all that information swirls around in my head especially because I am getting it all by text and conversation usually since I started a new job.)

So here we are, trying to find a balance with Ethan’s social, educational, and medical needs (and survival) It is not us being dramatic but rather doctors telling us he does not need to be around kids with snotty noses or coughs. Well if you have ever worked in group care or at a school you know that is basically ALL winter. Last time a lung doc told us she thought he needed to be at home until he is older because of illness, we decided that if we were near a children’s hospital, we would take the bad in with the good so he could be in school/preschool while he gets therapies. Well after that scare in ICU and what even more lung docs with varying degrees of conservatism, we decided if that many of them all agreed he doesn’t need ot be around it, we would do what we could to get him to be in school in hte spring and summer (for prek) and homeschool in the winter so he wouldn’t be in a hospital as frequently. (He has not had therapies in quite awhile because if you get inpatient therapies but you don’t feel your kid is well enough to do so much being around other kids, you don’t get therapy. Which is fine, that is how it is set up. But as it stands, he is already missing a lot of school anyway from being sick and missing therapy. Sitting in a bed and suffering by feeding tube placements and suctioning. Yep it literally and figuratively sucks.

So what a crazy notion-When you think about parenthood, you aren’t thinking about how you will have to decide “If I take my kid to church, is it going to make it so he’s still hospitalized from a cold he got and we can’t go out of town to celebrate our anniversary in two weeks?” or worry about germs from Communion ( I know that’s bad but guys this is what it has done to us…) We try to not worry and everyone says don’t worry, pray, and be happy (ok not really but its like the song. 😉 ) I do believe God has reasons for things. But man this kid and our hearts have been through a lot. I do think that’s one reason Ryan is an RN. If it was up to me, there were times I would have waited to take Ethan to the ER or not gone at all. Or Ryan had to fight to get better treatment for Ethan at the hospital because he was being overlooked or the seriousness was not realized then lo and behold, he was deteriroating and needed a transfer to higher level of care. (The hospital is wonderful overall, but you do have to be on your toes as a parent at any facility.) I can watch for the signs but I’m just saying I think that is God watching out for Ethan by his Daddy being an RN, with lots of ICU experience at that.

I say ward because his room is getting to look more and more like a hospital room. Not be all doom and gloom because I am SO very thankful we have those resources. It has shaved off a day or two or more of hospital stays that he can have up to 2 liters oxygen at home (usually just overnight with colds). So while that sounds great, the flip side is this-you hear the alarms go off while you’re asleep/trying to sleep. Your kid is only 5 and likes to rip the pulse ox probe off his toe, so largely Ryan is forced to lie down with him overnight or ast least to get him to sleep. And I know that a lot of parents do that anyway, but trust me being able to choose whether to do so and have no choice are two different things. So our schedules have often been different so we can adequately keep up with Ethan’s needs and when we are both at home, we might not even share a bed for the greater part of a few weeks because of all this medical stuff. Also it went out the other day so we needed a new cord.

Another thing that might be making his room look a litlte more medical ward-ish is that Ethan might be getting a g button/tube /feeding tube whatever he ends up getting or you call it. He basically is very under height and under weight and he is scheduled to get tested for a growth hormone deficiency, but since he is also not drinking much at all (because super thickened liquids are nasty and like pudding and hard to handle…) he is chronically dehydrated and putting in a tube might be a better choice than jumping to testing, although endocrine has followed him for over a year and recommended it. It may be that malnourishment is just a simpler answer to his lack of growth problem. I cried when a doctor first mentioned it, but there ought to be a way he can still eat food but only get liquids by feeding tube. That would be fine with me at this point. We need him to grow so his lungs can grow well and he can heal and hopefully have a more inclusive life all year long. If me or ryan seem to change our minds about things we attend or don’t attend with Ethan please understand we are not being flaky and we are just trying to do what is best for him. Sometimes that might change based on what we know or even what we feel. We try to think of what Ethan would want as well since he doesn’t talk a whole lot. I know kids shouldn’t make those choices but you do think about that some when it comes to 6 weeks of hospitalizations or doctors’ visits per winter vs one per year. He likes school but he likes home too and he has become very anxious about the hospital. So much so he screamed when i showed him a little girl’s picture because she went to his school and she got sick and was even smiling in the picture. the yellow hospital gown scared him and the bed and oxygen tubing . He knew where she was.

Ok this is really just venting and like purging, really, but I don’t care. Another thing that is so hard is every hospitalization is a battle, some more than others, to get staff to listen sometimes. They are good at their jobs for the most part, and some know to go with what we say because we know our child best-but because of delays or people not listening to us, he gets painfully constipated every visit.

So yea that’s why we have moved to different cities and apartments like we are running from the law (lol) because something happens that we thought was behind us and we have to make decisions based on what we currently know.

So we currently know he has chronic lung disease, is malnourished in some ways, and me and Ryan combined at least have PTSD.
Again, these are not all things kids with “just” Down Syndrome have so its really not about that. Like I’ve said in past posts, it can happen to any kid hypothetically. Some of his airways traits that can go along with DS do not help matters, but I don’t even think quite as often about the DS to be honest. At least not when we are dealing with an illness and figuring out interventions for him.

He is making progress developmentally and we will continue to work on that as we are trying to cooordinate outpatient therapies for him.
One thing for sure I know is he is all worth it.
This post/journaling is all over the place but basically it is hard to let it sink in that something is going to be around awhile and you don’t know when an end in sight is. Things have been so hard and socially isolating for us as parents that I reallly just want to kick something or lie my head down and cry. There are no simple answers and us as the parents have to come up with that. We put prayer to it and do what we feel led to do but any decision we make is scary and frankly none have come up with the outcomes we 100% wanted except that Ethan is still with us. And for that we can be truly grateful. He is maturing and putting his dishes in the sink and saying more words and being very affectionate to his little sister. He is not perfect but I’ve complained about his medical issues enough that it wouldn’t be fair to talk about other things. He’s a good kid.


The Rainbow Baby-Miscarriage and Life Beyond It

While this is a very happy time, its another one of those things that did not happen the way we thought it would. This baby came unexpectedly after lots of tragedy and disappointment in the form of two miscarriages while we were trying to get pregnant with our second child. The first one (several months prior to seeing the current pregnancy’s positive test) was a very early miscarriage-what is typically referred to as a “chemical pregnancy”-and we only knew we were pregnant for about a day until we realized that one was a failed pregnancy. It was such a high and low within one day and we hadn’t even told anyone yet, so it was like a quick slap in the face. We weren’t even sure if it was a true pregnancy or a rare false positive somehow, but later the doctor said that it was most likely a chemical pregnancy.

miscarriage blog post photo


The most recent tragic event, however, was the miscarriage that happened at about 7 weeks along. We knew about it for a few weeks and had told our parents, all our siblings, and maybe one or two friends we happened to be around at the time. We bought Ethan a t-shirt about being a big brother to tell my parents about the news. Close to 7 weeks along, I thought it was just some similar bleeding to when I was pregnant with Ethan, but as time went on I knew it wasn’t normal. It was just an awful feeling, calling my parents to watch our 2 year old (Ryan was at work) so I could just lie down and feel and see it all unfold-one of my first nightmares of parenthood from back before I had kids. I really wasn’t sure for a while WHAT was going on and it was the weekend so I couldn’t run up to the doctor or anything and the doctor on call said there’s really nothing to be done except rest and wait to see what is going on.
She said she really didn’t think I was having a miscarriage, but I think she was trying to make me feel better because it really was still up in the air based on my symptoms. My fear was not misplaced, though.

I couldn’t believe after ALL we had been through with Ethan’s surgeries and illnesses and adjustment to our firstborn having Down Syndrome that we had not only one, but two failed pregnancies in a ROW. We started to wonder if something was amiss since I had yet to have any typical pregnancies (while Ethan made it, I don’t consider it a typical pregnancy because he doesn’t have the typical number of chromosomes.) I did the usual panel of blood tests doctors do if someone has had three miscarriages in a row or suspect something unusual. All tests came back normal, and we had no immediate plans to try again. We wanted to have a vacation (with our extended family as planned) as we have yet to have more than a couple of days out of town (if that) since before Ethan was born. We thought we would wait at LEAST six months to try again. We wanted to have some emotional healing, some time alone, some time away, etc. As you know, that’s not how it happened!


Just two months after the second miscarriage, I decide to take a pregnancy test since I was late-negative. I waited a few more days and while I was on a walk I just thought something seemed off and I should test again for obvious reasons (Ryan kinda pushed me to, though. I’m really cheap when it comes to pregnancy tests for some reason.) Then bam-with a faint line, but two lines nonetheless, I holler down the stairs to Ryan, “um…there’s a second line.” Not as much the Hallmark moment as the other times we’ve had positive pregnancy tests but when is a surprise and after such stressful and depressing events, who could blame us? We started getting excited over time and tried not to worry. One of THE most rewarding moments of my life was that first ultrasound at 8 weeks when we were told “strong heartbeat, 159 beats per minute..and measuring just like he/she should!” It was on the same ultrasound machine they used to confirm everything had “passed” after the last miscarriage, so going into that room was scary and depressing at first. What an amazing relief it was! We even got to see AND hear the heartbeat, and it was just one of the sweetest sounds I’ve ever heard. It was one of the biggest reliefs of my life, almost up there with being told Ethan’s heart surgery was successful and we could come back and see him.

If you have never heard the term “rainbow baby”, it is what women who have had miscarriages call a successful pregnancy that follows a pregnancy loss. I looked at a forum about miscarriage support on and saw it mentioned and I thought it a very appropriate term. I know, sadly, not everyone will get a “rainbow baby” and maybe not so soon after a miscarriage like we did. I don’t understand why some seem to have it easy while others struggle to get pregnant and still others get pregnant easily just to lose their pregnancies before they can share it with the world. There are so, so many things I just don’t get but I know that doesn’t change that God is good and He has a plan for our lives. While He doesn’t cause all the horrible pain in the world, He does use what we have gone through to a greater purpose (and sometimes things we can find within our own lives). I hope that is what He can do with our story-about miscarriage, about trusting God in all these extreme highs and lows and unexpected twists and turns in our lives. Our experience in having children has certainly been that way! Regardless of the hard times, we have mostly great times lately. We love our sweet 3 year old and all his uniqueness and hard work he puts in to everything. We also already love our little Rainbow Baby Bean on the way very much.

Ethan’s Birth Story-From the Dad’s Perspective

first family photo edited with watermark

July 2, 2012 has forever changed our lives. This seems an obvious statement to any who have had children, but our experience was different than a majority of births out there. Ours was both joyful and heartbreaking at the same time. For 9 months my wife and I prayed for the health of our son, that he would be strong, and be a light for our savior Jesus. Each night before we went to bed we prayed that God would use our sons life to reach those who don’t know about him.

I can now say that he most certainly has done just that, but in a way that was most unexpected. It reminds me to be cautious about what I pray for because it just might be answered in a way that I didn’t see coming! It taught me to be prepared to serve the Lord however it is he calls me to, and be ready for whatever circumstances that it surrounds.
The day Ethan was born was interesting from the start, but to get a full picture I want to go back to July 1st, my wife’s birthday. We had traveled from Conway to Sherwood, about a 45 minute drive, to celebrate Natalie’s birthday. She was having pain that we thought most likely was just due to a uti as Ethan was only 36 weeks along. Natalie has had several uti’s by this point and we just thought this was a rather bad one. We finished celebrating my wife’s birthday and drove back to our house, and this is when we began to suspect something might be amiss. Granted I didn’t think she was in labor, and we will get to more on that later. Every time we hit a small bump in the road Natalie would groan with pain. I thought to myself man that is one heck of a uti we had better get her to the Doctor tomorrow morning asap. We got home and promptly went to bed. Natalie was having quite a bit of pain still so I slept in our spare bedroom so that she could have free reign of our bathroom, and bedroom if she needed it. At one point she comes in saying “I’m hurting really bad”, and me being the brilliant nurse that I am said “It’ll be ok sweetie we are going to the doctor in the morning” not realizing that she was in labor! In my defense we had already made at least 1-2 trips that week to labor and delivery suspecting that she was in labor.

I believe that later that night Natalie’s water broke, but again we attributed this to Natalie having a uti and not her water breaking. I think even Natalie would agree that her description of her labor pains did not subscribe to typical labor pains. We got up early the next morning, or rather I did as Natalie informs me that she didn’t really sleep, and went to chick fila and got us some breakfast and proceeded up to the hospital. Fast forward an hour or 2 and Natalie is now in a room and we are waiting on the Doctor to come in and check her. As soon as the doctor walks through the door she notices Natalie looks pretty rough and decides to check her to see if she is dilated. Come to find out at this point Natalie is 6 cm dilated and we will be having our healthy baby boy today!
Words cannot describe the excitement we had. We had waited 36 weeks to meet our child. All our ultrasounds showed Ethan would be healthy and by all means what we experienced in the pregnancy did nothing to change that. We were so excited and called our parents and texted our siblings that there would be the first Grandchild in our family today July 2, 2012.
Natalie got settled in and got her epidural and finally rested for about an hour or 2 before having to start pushing. By this time my parents and Natalie’s parents are at the hospital and our siblings are making their way to Conway to be present for the baby’s arrival! At 7pm Natalie begins to push, and push and push. I’ll never forget her wanting to panic and stop she wasn’t sure she could do it. She was so tired that she couldn’t stand it any more she hadn’t slept in over 24 hours and was now trying to deliver our son. An hour passes by and Natalie has delivered Ethan. I was expecting to be elated to see my son come out and crying and seemingly healthy with no problems. As soon as I saw Ethan my heart sank into my gut. I thought something didn’t look right. Ethan’s neck was to short and thick, but I quickly chastised myself saying in my head “Its nothing, all babies look weird when they are first born Ethan was just in the birth canal weird that is all”. So I kept trying to reassure myself that nothing was “wrong” with Ethan.

The Nurses within the delivery room quickly took Ethan away to do his cleaning and apgar scoring; however, I noticed they were surrounding him to much, blocking my view for slightly to long, and talking to each other quickly and quietly. I walk over to them and ask if everything is ok, “Is Ethan alright”. They quickly, almost to quickly, assure me that Ethan is fine they are just cleaning him. So I snap a quick picture of him and text it to my family saying “Ethan is here!” all the while thinking he doesn’t look “right”.
I walk back to Natalie and show her Ethan’s picture and comfort her while she rests. The rest of the evening is all jumbled together so if I get the sequence of events out of order I apologize. Next we let our parents come back to get a quick look at Ethan, and after they leave I walk out to go get our siblings to see Ethan for the first time in person.
When I got back to the room I entered first to make sure all was ok and Natalie was decent. As soon as I walked through the door my world shattered, I saw a pediatrician sitting on a chair, Natalie crying, and I thought “Ethan is dead, there was something wrong, I have lost my son… I didn’t even get to know him or feed him” I stop our siblings from coming in and told them to wait outside the door. It wasn’t until later that the Doctor suggest the siblings wait in the waiting room. It feels like an eternity walking to Natalie’s bed, sitting down, and letting the Doctor deliver the news I surely thought meant my son wasn’t alive.
The Doctor looks at us calm, but sad and begins to say “I am sorry to tell you this, but I think there is a 50% chance that your son has Down Syndrome…..You can yell at me, cuss me, if you want I understand. I am sorry to bring this news to you. We are going to run some tests, and this could take several days to get back and know for sure. Ethan has some of the physical characteristics, but not all for Down Syndrome I am hopeful he doesn’t have Down Syndrome”

Needless to say Natalie and I were utterly devastated. We didn’t know what that meant for our child. We never got a report that something looked wrong with him on ultrasound, and that he may have a disorder that in our current frame of thought would doom him to a life of inadequacy and loneliness. We wept for him, for us, and for the child we thought we had. We lost the idea of a healthy child that would grow up in our minds “normal”, no challenges, and all the friends in the world. This is the thought, the idea, that we lost and it was a devastating loss. It felt like the loss of our child. So we cried for what seemed like hours, but was actually only a few minutes. After we collected ourselves I knew I would need to go and tell our families what we were just told.
I made sure Natalie was ok for me to leave and talk with our family, and left for the waiting room. I kept wondering what I would say, how I would keep my composure, and what the reaction would be. I walked out and saw all our family waiting. I walked up to them and just fumbled it out “The Doctor thinks Ethan could have Down Syndrome.” The effect was immediate, everyone was shocked, everyone was sad, and everyone was worried. I knew this would be the reaction, and I thought I had prepared myself. I was simply in shock or I would have broken down right then.
I excuse myself back to the room, and wait for Ethan to be brought back to us. After we finally get to see him again we prepare to let the family come back. Once back everyone made an effort to dote of Ethan, and try not to mention the Elephant in the room. They made sure to show they loved him no matter the challenges that he would come to face, and smiled, laughed, and took so many pictures. They were so happy to see him. It made me feel that everything just might be ok.

I walked down with my parents and siblings so I could get out of the hospital for a minute. We got to their car and I just started crying and asked them “who is going to watch over him when we die, who will be his friends, what is his life going to look like?” There were of course reassurances but to me there were no answers.
After everyone had seen him and dispersed back home we decided to try and get some sleep. We had Ethan at our bedside, and lights off. At this point all was quiet but Ethan. I kept hearing him spit up, and I knew that this wasn’t normal but I thought maybe it won’t keep happening. It did Ethan continued to spit up bile. I finally decided that we should call the nurse and tell her what was going on. By this time it is nearly 10 o clock at night, and they took Ethan for an Xray of his stomach. He was gone for nearly an hour when the Pediatrician came back a second time and I knew there was no escaping it. The Pediatrician sat down again and said “I think Ethan has duodenal atresia which means his stomach is either not attached to his intestines or there is a membrane separating the stomach from the intestines. We cannot treat that at our hospital, and I have called Arkansas Children’s Hospital to come and get Ethan and they will most likely need to perform surgery. When the physical Characteristics and duodenal atresia are present together it is near 100% chance that Down Syndrome is present as well. I am now certain that Ethan has down syndrome. We will of course be sending off the blood studies to confirm it but I do believe that Ethan has Down Syndrome. The med flight team for children’s will bring Ethan to the room before he needs to depart, and once he arrives at Children’s the attending NICU Doctor will call and update you on Ethan’s status and answer any questions you might have.”

He again apologized and left, and we were left alone knowing soon our son will be at Children’s away from us, and away from anyone who could care for him for the time being. It was only a few minutes 10 to 15 tops before ACH flight team arrived with Ethan in our room and I asked if my wife could please hold Ethan just 1 more time before he was flown to ACH. I am so thankful to the flight nurse because they unhooked Ethan from all the monitors and brought him to Natalie to hold for a few fleeting minutes while they prepared the paperwork to go.

Ethan in his pod with his ear protectors for the helicopter ride to the children's hospital

Ethan in his pod with his ear protectors for the helicopter ride to the children’s hospital

They informed us that Ethan would be inflight for about 15 minutes and that the Doctor would call just as soon as he gets settled into his bed. They then took Ethan and left leaving us feeling alone. I encouraged Natalie to try and get some sleep I would let her know when they called, because by this point Natalie had not slept in almost 36 hours but she wanted to wait until she heard from ACH.
I called my parents and asked if they couldn’t come back up to the hospital and stay with us until we hear from ACH and so they did. They prayed with us and when the doctor called they left to give us privacy. The NICU doctor informed us that Ethan had made it to the hospital safe and sound, was doing well, and did almost 100% certainly have Down Syndrome. He delivered all this news with kindness which I am thankful for. He then went on to say “Ethan will need to have surgery to repair his stomach so he can begin to get nutrition into his body. Without this repair then there is no way he can get food. The surgeon will call in the morning to go over plans for surgery”
After the call with the doctor we were finally able to lay down. I encouraged Natalie to try her best to sleep, but even so I could hear her crying every once in a while. I lay awake the whole night wondering if it was my fault. Wondering “Is God punishing me for something I did? Why is this happening to us? Haven’t we been through enough?” I asked all these questions all night long. Finally around 5 am the obstetrician comes in and says that she is sorry for the news, and that she is going to discharge us early so we can get to Children’s as quickly as possible. I knew that Natalie hadn’t slept any and that someone should be with Ethan while I took Natalie home to rest. So I called Natalie’s parents and asked that they please go be with Ethan until we can get there as I needed to get Natalie home to sleep for a few hours.

After being discharged from the labor and delivery unit, we went home and got showered up and laid down to try and sleep while we wait to hear from the surgeon. Once completely alone in the safety of our home Natalie and I hugged and simply cried for a solid 5 minutes. The previous night was just to much to take in, and so we cried. We didn’t talk or reassure each other we simply cried, and after we let go of all that built up emotions Natalie was finally able to sleep, and I felt like the mourning period was over and we could be hopeful for a change. It seemed a turning point for us and our view on Ethan’s so called “problem”. I was so relieved I couldn’t sleep so I left Natalie in our room and went out to the living room and watched TV until the surgeon called.
The surgeon called to get consent to do a surgical repair of a duodenal atresia repair and also informed us that Ethan had a medium to large Ventral Septal Defect in his heart, but they felt they could still do his gastric surgery safely and it was important enough that they needed to proceed on with his surgery so I gave consent over the phone for his surgery and felt some comfort knowing that Natalie’s parents would be with Ethan while they took him to surgery and we would be there when he was done.

After 3 weeks in NICU, we got to take Ethan home! Here he is with his Daddy.

After 3 weeks in NICU, we got to take Ethan home! Here he is with his Daddy.


As we all know by this point Ethan made it through his surgery fine, spent 2 weeks on the ventilator post op during which point he earned a flat spot on his head that would require a helmet to fix, and we found out the day before he was discharged that the “medium” sized hole in his heart was actually rather large, and there was also a atrial septal defect that would probably need surgical repair in the future. It turns out at 6 months old Ethan would undergo extensive open heart surgery to repair not a Atrial septal defect and a ventricular septal defect but a Atrioventricular canal defect that took 6 hours to repair.

Ethan was only in the hospital for 1 week after this, but the real challenge was still ahead with the flu which Ethan barely made it through. If Ethan had gotten the Flu 9 week earlier he would have died. The only reason he has done as well as he has was because he was a heart baby and his heart was repaired. If he had not been used to lower oxygenation things would have been a lot worse than they were. We were so very close to loosing him, and we are so thankful that God timed it just right so that Ethan could survive!

This post is one of the hardest ones I have ever written because it reminds me of the hopelessness and loss we felt on the night that Ethan was born. We were so ignorant of what true blessing Ethan would be in our lives. We have come to understand Down Syndrome better than we every could had we not had a child with it. It is normal to feel utter devastation when you get a new diagnosis of DS and have no idea what is out there. There is so much community support present now that we have no fear that Ethan will have no friends, the developmental care Ethan receives is top notch, and Ethan himself is the most amazing, driven and talented child I have ever laid eyes on.

Nothing has come easy for our son. His very life has been put into jeopardy, he struggles with what would be easy for us physically, and he struggles to talk. Yes all these things are difficulties that he has to overcome. He may cry when we make him work on something he struggles with, but he never stops working towards it, he never gets angry at his challenges. He laughs and moves on, and when he gets it he gets it. He isn’t worried by what he can’t do, but enjoys all that he can! He is stronger than any I have known. He is so full of love, joy, and kindness even at age 2 and a half it astounds me. I learn from him to love others, and to be better about wanting to persevere even in a situation that seems impossible.

I am so beyond thankful for Ethan being who he is. I wouldn’t change a thing about him. Ethan is who he is, he is not his diagnosis. I encourage everyone to please look at children and people with Down Syndrome as PEOPLE. Don’t look at them and be scared because what you see is Down syndrome people that are so very different from you. That is so wrong, People with Down Syndrome are more alike than they are different. Where Ethan can’t talk and express what he wants with words as easily as a “typically developed” 2 year old Ethan signs what he wants and conveys it just as easily and quickly as anyone else. When he struggles to get something off a shelf because he has trouble walking or crawling he would invent new ways to get there. He is more alike to us than he is different no matter his delays. I am so proud to call him my son. I am so thankful that Ethan is the way he is. I couldn’t ever be happier and more proud of my son. Thank you Jesus for him.
Ethan and his Dad hanging out on one of Ethan’s shorter, less dramatic hospitalizations (aspiration pneumonia, one night)[/caption]
I also wrote this post for you Father’s out there who are hearing this diagnosis for the first time. I want you to know its ok to be angry with God, its ok to be devastated, and its ok to mourn the loss of what you thought you were going to have with a child. However, don’t get lost in this remember that your new child will bring you just as much joy and pride as any other child could or would. Take heart in knowing that your child will get to live a mostly normal life! Fall in love with who your child is not what they have.

God Bless,
Ryan (Ethan’s Daddy)
To see Ethan’s Birth Story from his mother’s perspective, click here.

Difficult Discussions

The following post was written by Ryan on social media after a story about a young couple having to say goodbye to their baby was released. It is not on the topic of Down Syndrome necessarily, but it offers some insights about end of life decisions which will effect all of us at some point.

“It is never easy having someone you love get sick, and then thinking that after a while modern medicine will surely keep them healthy or help them pull through. As a critical care nurse I am a little jaded towards modern medicine more so than most. I know that my previous statement may raise alarms in some people’s minds so let me explain what I mean.

Modern medicine from my point of view is both a blessing, and a curse. We can work hard to perform miracles and bring people back from death (or the point of death) and see them sometimes go home to live a few more years with their families. I have seen the opposite happen, and patients slowly and painfully deteriorate on ventilators until their is no hope, the heart simply gives out and the patient dies.

Often times families think that we can always keep a patient alive no matter their condition. They have open hostility to those medical professionals that would be the voice of truth and say this simply isn’t true. A quick google search will bring up results of post code blue (or cardiopulmonary arrest) mortality rates as reported in studies on the NLM website. You can read the full study here:

or the conclusion of the statistics here:

In-hospital CPR for cardiopulmonary arrest was associated with 30.4% success at our center at the end of CPR but only 12% were alive at discharge. Duration of CPR >10 minutes was predictive of significantly decreased survival to discharge.

12% of people who have CPR performed survive in this particular study. 12 percent chance of walking out of the hospital alive after CPR; I have had one Doctor tell me that the chance of survival after cpr is usually less than 10%. There are so many factors that contribute to even this statistic such as comorbidities, current state of health (including the state of the patients hemodynamic stability), and many more.

As you can see that it is never the case that we can always save you in modern medicine. I am by no means saying that we should never ever try to save someones life, and quite the contrary. I am all for attempting to save someones life with a realistic and down to earth view of what can and cannot be done. Many times we try to act like God and save people who simply can’t be saved. An old LPN friend of mine once told me “When it is your time to go home, there is nothing on this Earth that will save you. Nothing.” So I say to all that read this be prepared. We medical professionsals will do all within our power to save you, but please understand that we can’t save everyone. When it is your time to go home it simply is your time to go. Please try to understand that when a Doctor says “I am sorry, there is nothing else we can do. Your loved one is not going to make it” it isn’t because we have given up, but we realize there is nothing left and your loved ones time has come.

The best thing that anyone can do for themselves is know that we are deeply and passionately driven to save lives, but we are also just as deeply and passionately driven to prevent needless suffering, and this is where my jaded attitude towards modern medicine needs to be checked. Many times we are driven to protect our patients from harm, and sometimes that includes modern medicine. It isn’t always appropriate to continue care of a patient, and try to understand it is never due to us wanting your loved one to not make it. It is simply that we don’t want to watch them suffer and also we don’t want to watch you suffer when all options have been depleted.

I am deeply passionate about what I do. I am a critical care RN. I have loads to learn, but one of the most important lessons I have learned over the past few years is to be passionate about my care not just for the patient but for the families. I attempt to utilize a holistic approach to my care and let my families as well as my patients understand that we are only here to help the patient and in doing so sometimes that requires letting them go.

There are many who would disagree with what this young couple has chosen to do. I have never faced the time when I had to make a decision a bout someone I love more deeply than any others around. I know that at some point in my life this is likely to happen for me or for Natalie making that choice about me.

I am thankful for this young couple’s view on what can and cannot be done. I ask that you join me in praying as the mourn the death of their child, and at the same time celebrate the life they were able to have with him.

Take this time to talk with your spouse, children, parents, and friends about what you expect should you become severely ill, have a wreck, or some other medical emergency. I promise you that it can happen unexpectedly and it is always helpful for you and your family to have a game plan. Talk about this important issue as now more than ever the line between meaningful life and a life where someone should never have remained is blurred; to often do we truly attempt to play God.

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

church image

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.

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.

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.


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.


I say all this to, 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. 🙂


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.