21 Month Milestones

>This month Ethan’s big breakthrough was standing from the sitting position with NO assistance! He started bear crawling and this next step came naturally. Hopefully he will be walking soon! He has also been adding to his signing vocabulary pretty quickly (star, Daddy, hot, etc.) He has gotten better at spatial reasoning, such as putting the rings on his ring holder and attempting to put puzzle pieces in the correct spot.

I also made some flashcards with words for him, and he was able to sign and say, “up!” within just a few reviews of the cards! The idea is to go fast and teach whole words (young kids can recognize words as they would pictures.) Others with children with Down Syndrome have had success in toddlers knowing several words, and I hope for Ethan to know several before he enters school. this way he can focus on decoding and phonics (if that is in fact the way they will teach him.)

He can now say “ball” very well. Plenty of new signs, not so many spoken words. But that is okay, I think if he could he would probably say more words. Just like I think he would sing along if he could-he loves music! I’m just thrilled to have a way to communicate with him and see how much he understands.

We also went to the zoo for the first time! He loved it!

By the lion exhibit

By the lion exhibit

on dads shoulders at zoo</a

on dads shoulders at zoo


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 :)

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.


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)