Moming through the Pandemic – Erin: Stay-at-home mom of two

Well Momfaming friends, it’s been a while. In order to catch you up on my life let’s rewind to February of last year…

• I went out to dinner to celebrate my 35th birthday with my 3 best friends…little did I know this would be the last time I would step foot in a restaurant
• I took Ryan to his Physical Therapy appointment…not realizing it would be his last in-person therapy
• We went to our local Gigi’s Playhouse for Ryan to play with some friends…having no idea that it would be his last chance to see other kiddos
• Oh yeah…and I found out that I was pregnant with my second child.

To say this past year has been difficult is a gross understatement. Moming through a pandemic is something I never imagined I’d have to do and it is anything but easy. Since I know a lot of others are in the same boat, I decided I should share some of my experiences and hope others can relate (or commiserate?!)

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Tell us about yourself and your family.

I am Erin, the other half of the Momfaming Duo. I have a spirited 3 year old who is rocking an extra chromosome (Ryan) and now I also have a 3 month old “pandemic baby” (Lincoln). I found out I was pregnant with Lincoln a few weeks before all of the craziness began. I remember when I was finally telling people I was pregnant everyone’s response was “at least all of this will be over by the time you deliver”; boy were they wrong! Every single one of my prenatal appointments as well as my delivery were during the pandemic. I wouldn’t suggest being pregnant during a pandemic, but I’m glad I was because now I have another amazing boy to add to our clan.

I am also a “retired” teacher turned stay at home mom and I never once questioned that decision until the pandemic hit. Being a stay at home mom during a time like this is a whole different ballgame!

How has life changed for you since quarantine began?

Well, we basically don’t leave the house. All of Ryan’s therapies have turned virtual and we have stopped doing any activities with the kids outside of the house (besides for playing in our yard and walks around the sub). The only person outside of our house that we see is my mom so we occasionally go to her house too. When the weather was nice we saw a few friends outside a handful of times and I am hoping to be able to do that again come spring.

Not leaving the house has definitely changed my stay at home mom parenting style. We used to make sure we had something fun to do outside of the house at least a few days a week to keep us sane (even if it was just running to the grocery store). We also tried to get together with friends for play dates as much as possible. Without being able to do those things we have had to come up with different ways to stay occupied. In the summer we bought an inflatable pool, swing, and slide to have in our yard so that Ryan would have things to do. Now that it’s too cold to go outside for long periods of time we have had to become more creative; like dance parties, baking, and an indoor basketball hoop! It hasn’t been easy, but we are making it work (barely)!

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What is something positive that has come out of having to quarantine?

My husband has been able to spend more time with the kiddos. As a stay at home mom I was already present for all of the milestones and funny stories throughout the day; now he is able to join in with that too. He is working from home most of the week so he is able to come down and play with the kids while he’s taking a break as well as eat lunch with us.

It’s been so nice to see his and Ryan’s relationship flourish because of this. Ryan used to only come to me for things, and now he’ll go to his dad too. Sometimes he’ll even take something away from me to bring to his dad because he’d rather play it with him. Although that stings a little, it’s also very nice to see (and even gives me a break every once in a while)!

What is the hardest part about it?

There are so many things that have been hard about quarantine; not seeing friends, not getting any alone time, not getting to see Ryan with kiddos his age, not being able to introduce Lincoln to anyone, and not being able to just throw the kids in the car to run some errands. Without a doubt the hardest part for me, though, is having to decide between Ryan’s health and his development.

Like I said before, Ryan has Down syndrome so he used to have PT once a week through the school district and had also just started private PT and Speech through our local hospital. I was also going with him to a class once a week where he was socializing with peers as well as learning the classroom routine. Once everything shut down, that included all of his therapies. He would continue virtual PT and OT and in the fall we began virtual preschool.

Trying to get a 3 year old (especially one with Down syndrome) to sit at the computer for PT, OT and/or preschool has been quite the challenge. It is a constant battle and I know that he is not getting anywhere near as much out of it as he would be if he were attending in person. He has made some great progress during quarantine (he started walking) but I also know that things are moving slower than they would be if he could be face to face.

On the other hand, Down syndrome is considered a high risk group when it comes to the coronavirus. Because kids with DS are immunocompromised and have low muscle tone they usually have serious side effects if they get any respiratory illness. We have been very lucky with Ryan and haven’t encountered these issue at all but we do not want to risk it. Ultimately we decided to keep him at home because we know that is where he is safest, but I still feel guilt every day that he is not getting the support he needs to develop his skills.

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What have you learned about yourself during this time?

That I can do anything life throws at me and no matter what I can put on a brave face for those around me. Living through a pandemic while pregnant and then with a newborn and toddler is TOUGH and although I have been super frustrated and even sad some days my kids would never know it. I have always prided myself on the fact that I have a lot of patience, and boy was that tested this year. Did I have as much as I thought I did? Probably not. But no matter what was going on in the outside world (or even my head) my kids lived as normal of a life as possible through all of this.

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What surprised you the most about your child(ren) during this time?

Well Lincoln has only known this way of life (poor kid) but it really surprised me how much Ryan apparently thrived on socializing with other people. Since I am a stay at home mom he has never been in daycare so I would never have labeled him as a social kid. But now that he does not see anyone besides mom and dad (and occasionally grandma) I can tell it’s affecting him.

We were lucky enough to see my brother, sister in law and niece and nephew over Christmas and he was a completely different child. He loved playing with his cousins as well as being around different adults. It was like a weight was lifted off his shoulders and his frustrations seemed to go away. This makes me even more excited to be able to get together with friends again!

What are you most looking forward to doing once life gets back to ‘normal’?

Getting a break from being a mom! I can’t wait to just go out with my friends (without the kiddos) and talk about normal things (in between complaining about our kids and our husbands) while sipping some wine and eating some good food. I never realized how much these nights away gave me the restart I needed to continue to be the best mom and wife I can be.

What is something you began doing during quarantine that you will continue to do (or hope to) once it’s over? Why?

Asking for help. Even without a pandemic I can’t do it all, nor should I have to. As a stay at home mom I feel like there is a lot of pressure to do everything yourself instead of asking your spouse to help because they have been working all day. Well now that we have two and are living through such a stressful time, I have realized I just can’t do it all myself. Some days I need my husband to take one of the kids while I deal with the other one, and other days I need him to take both while I collect myself. And that is okay. Pandemic or not; stay at home mom or not; I need help and I am now not afraid to ask for it!

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Anything else you want to add?

I just want to make it clear that I know that in the grand scheme of things we are extremely lucky. We have not lost anyone close to us to this horrible virus nor have we gotten sick ourselves; we have a safe house to quarantine in with everything we need to keep us comfortable; we have not lost much income due to things shutting down; we are able to buy enough groceries to stay healthy; and we have each other and two pretty amazing kiddos to keep us company while we are stuck at home. So although this was one of the hardest years of my life, I know that others have had it MUCH worse and my heart goes out to them every day.

Mom of Fame – Amy: The Gift of a Down Syndrome Diagnosis

When I first learned that my son, Ryan, had Down syndrome Lisa suggested I follow @uplifeofemmyjoy on instagram. I checked her out and I’m so glad I did! Each day Amy posts videos and pictures of her adorable Emmy, who has Down syndrome. She made me understand how lucky I was to have Ryan and I loved watching Emmy, and now her son Reese live their day to day life!

When we reached out to Amy we were so excited that she agreed to share her experience with us since  was such an integral part of my transition to being a mom of a baby with Down syndrome. She shares her struggle getting pregnant, why being a stay at home mom is NOT boring, and how Down syndrome is a gift. Please read her amazing words and help us welcome her into the Hall of Fame, where she obviously belongs!

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Meet my family.

We are Chris, Amy, Emerson aka Emmy, Reese and our dog Ozzie.

Chris and I have been married for 8 years. We always knew we wanted kids and after saving a little money the first two years of marriage we decided to start our family.

We never anticipated the struggle.

It took 3 years and a lot of medical interventions for me to finally get pregnant with our first baby, Emmy. She has been such a gift to our family. She is such a bright light. 2.5 years later her little brother Reese miraculously joined our family with absolutely no medical help whatsoever. We live in Southern California along with our entire extended family. I stay home with the kids and Chris works for a home builder.

What is the best piece of advice you were given about motherhood? Did you take it? Would you give that piece of advice to someone else?

I don’t remember what advice I was given besides, it goes so fast so enjoy every moment. I really do try my best to soak it all in and yes, I think everyone should follow that advice.

How is motherhood different than you imagined it would be?

It’s much busier than I imagined. I was told I’d feel lonely and bored as a stay at home mom but when your first born goes to therapy neither of those are true. I have a huge support group of friends and I’m never ever bored. We are a very busy little family.

What are your three strengths when it comes to motherhood?

I have come to realize that my biggest strength is patience. I knew I was patient in my teacher days and I’m even more so when it comes to my kids.

2. I have thick skin which is a major asset when raising a child who is differently abled.

3. I have great confidence in my abilities to love my children and to stand up for when they deserve and need.

Describe a time where you were completely overwhelmed as a mother.

I felt overwhelmed the first few weeks after my new baby was born. I had a very rough c section delivery, we were struggling with nursing and I wasn’t healed enough to fully care for my kids on my own. I was use to doing it all myself and needing others to help A LOT was overwhelming.

Is there anything you feel that you have lost about yourself since becoming a mother? What have you gained?

Every stay at home mom looses their freedom to a certain extent. I can never go anywhere or do anything without making plans for someone to watch the kids or taking them with me. I’ve gained my purpose. I love being their mom and I love being an advocate for the special needs community. I wouldn’t trade what I’ve gained for the world.

What do you want your child(ren) to learn from you?

I want them to learn everything but mostly I want my children to learn to be kind, independent and loving individuals that make a positive impact on the world.

Since it is Down Syndrome Awareness Month, what is the most important thing you want people to know about Down syndrome or about being a mom to a child with Down syndrome?

Down syndrome is a gift.

It’s not scary and if you get to be a part of someone’s life with Down syndrome you are lucky. Parts of this journey are hard but it’s mostly so beautiful. I wouldn’t change one hair on my daughter’s head.

I want for her what every parent wants for their child and in a world that doesn’t fully understand disabilities we will work harder and shout louder for her to be seen as the valuable human she is.

In order to help spread the truth and joy that Down syndrome is we need all of you to join us in shouting the worth of these beautiful humans.

Down Syndrome Awareness Month: What is Down Syndrome?

October is Down Syndrome Awareness Month which is very exciting in our household because we love getting to share what Down syndrome is to anyone who will listen. When we were told our son, who is now almost 2, had Down syndrome we had to do a lot of research because we didn’t know a lot about it. That research led us to understand that technically “Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21 [and] this additional genetic material alters the course of development and causes the characteristics associated with Down syndrome” (according to the National Down Syndrome Society). But to us, Down syndrome is so much more than that…

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To us, Down syndrome is:

• watching my mom get a tear in her eye when Ryan finally calls her “ga-ga”.
• hearing my dad say that Ryan was “chosen for the perfect family” and “that he will teach us so much.” when we told him.
• having everyone stop me in a store just to say “hi” to Ryan.
• immediately having a club of strangers who are also part of the “lucky few” and feeling connected to them in a way other people can’t understand.
• celebrating like crazy when Ryan meets a milestone he has been working so hard on—and even FaceTiming “ga-ga” so she can celebrate with us!
• listening to my 5 year old niece tell me how lucky I am that Ryan is my baby–and knowing how right she is!
• looking into Ryan’s eyes and realizing that he understands people in a way I never will.
• seeing Ryan’s smile light up a whole room.
• having the most walkers at our local Buddy Walk and realizing that our support group is absolutely amazing.
• receiving all of the uplifting articles about people with Down syndrome from everyone we know.
• dealing with normal day-to-day ups and downs of a typical toddler; because he is first and foremost, a toddler.
• advocating for Ryan so that he can live his best life–whatever that entails.
• not wanting to change a thing about Ryan because he is “down right perfect”!
• feeling like the luckiest mama in the world because Ryan is mine!

 

But don’t just take my word for it…come back and check out our Mom of Fames all month to hear what other moms who have kiddos with Down syndrome have to say! And please, if you know, tell us what Down syndrome means to you and your family!

To My Friends…Thank You for Making This Easier!

When I first learned that my son, Ryan, has Down syndrome there were so many different thoughts going through my head. *Will he be okay?*, *Will he have friends?*, *Will he be included?*, *Will he be happy?*

After we found out that he was otherwise healthy, one of the biggest concerns I had was about the support we’d receive. I have a great group of friends but this is something we had never experienced before so I didn’t know how everyone would handle it, including me. It’s a lot to deal with when you find out your child has special needs; you definitely need your support system to help you through it. Don’t get me wrong, he’s the best thing that has ever happened to me and I wouldn’t change a thing about him, but having friends that love and support us makes it so much easier. 

So to my friends (and family)…thank you for:

Loving and including Ryan

One of my biggest fears was that Ryan wouldn’t have meaningful relationships with my friends’ kids because he was different than them. This couldn’t be farther from the truth. My friends are amazing at loving and including Ryan. He is invited to every play date and party and while he is there they make sure he is treated just like everybody else (if not better!) Everybody comes over and makes sure Ryan is doing okay and if he can’t participate in something (because he hasn’t reached the milestone yet) they make sure he has something else that he can do. He loves being around people and it is so fun to see him interact with the kiddos and other adults.

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Always asking about him and his development

Along with Ryan’s diagnosis comes weekly therapies (occupational and physical) and extra doctor’s appointments. My friends always seem to remember to ask about how he is doing in them and what he has accomplished during them and it really means a lot. Sometimes I don’t feel like having OT and PT every week. I feel like the house always has to be clean and some days it just really disrupts his schedule. I know he needs it and he is thriving because of it, but it can honestly get really frustrating. When my friends ask how it’s going or cheer because Ryan met a new milestone, though, it really reminds me of my priorities and eases my frustration.

Still sharing your kids’ accomplishments

Another one of my fears was that my friends would feel bad bragging about their kiddos to me. I didn’t want the fact that Ryan was reaching milestones later deter them from telling me all the cool things that their children were doing. Luckily, my friends are very open and let me know when a new milestone has been reached. And just like they celebrate with us when Ryan succeeds, I love to celebrate with them!

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Going to fundraisers

One of the most generous ways my friends have found to support us is to donate to the Down Syndrome Guild. Whenever there are events that we invite them to, they show up without question. Our first event was for World Down Syndrome Day last year. I invited everyone on a Monday (when it was on Wednesday) and somehow we had over 30 people show up just to support Ryan. It was so amazing to see and really made us realize how lucky we are to have these people in our life.

Having the difficult conversations

Most of my friends’ kids are under 5 so I’m not sure we have crossed this bridge yet, but it is definitely coming. Eventually (probably sooner rather than later) their kiddos are going to realize that Ryan is different. They’re going to ask why he looks different or why he acts different than other kids his age. I know this isn’t going to be the easiest conversation for them to have and I want to thank them in advance for having it. And I know their kids will be just as supportive and kind as they all have been because they’re all amazing moms (and dads) and are raising amazing kids.

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Ryan is one lucky little boy to have you all in his life and I am one lucky woman to have you all as friends.

So…thank you from the bottom of my heart!

 

4 Ways Motherhood Has Pushed Me Out of My Comfort Zone

Becoming a mom has been the best thing I have ever done. It has made me a better person in so many ways. Since I was a little bit older when I became a mom (32) I was pretty set in my personality traits. Now that I have Ryan, though, I have been pushed out of my comfort zone and have changed for the better. These are the 4 ways that motherhood has helped to do that. 

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Being Social

I am a fairly social person, but I like to be social in situations that I know with people I know. Since having Ryan I have had to move past that. I have been going to new activities, sometimes with just Ryan, and I know that it is good for both of us.

After we found out Ryan’s diagnosis we joined the local Down syndrome guild and have been going to their events. First, we went to a fundraiser for World Down Syndrome Day (granted most of our friends came with us so this didn’t take me too far out of my comfort zone). Then, we went to a New Parent Breakfast and met lots of nice families that are also a part of the organization. I even joined the board of the guild so now I will be going to those meetings as well as lots of other activities throughout the year.

Since I am a stay at home mom I am also now trying to find activities during the week that Ryan and I can go to outside of the house. We signed up for the story time at our library and we have been there twice now. I was very nervous about going, but it is very fun and he absolutely loves it!

Being Less Than Nice

This may shock some friends and family but I try to be a nice person. Yes there are times when I lose my patience and not nice things come out of my mouth, but usually I try to keep it kind. When it comes to Ryan, though, Mama Bear comes out and I am as rude as I need to be.

The best example of this is a fight we are having with our insurance company about a hearing test that Ryan had when he was a few weeks old. It was a necessary test but the insurance company denied the claim because they say it was “informative or experimental” and the hospital billed us almost $400 for the routine procedure.

I have been on the phone for the past couple of months trying to deal with this and let me tell you that the conversations have not been friendly. The worst of it came when I told the woman on the phone that my son has Down syndrome and that children with DS often have hearing problems so the procedure was even more necessary and she said, “I’m sorry to hear that”. My blood boiled, I turned red, and I told her that it is nothing to be sorry about.

Although this is a silly fight to be having, I feel like it is my first dive into advocating for Ryan. He needed the procedure and I want them to acknowledge that. I know that I will have a lot more advocating to do for him as he grows up and goes through school and ventures out into the real world and this is my dress rehearsal.

Being the Center of Attention

I have never liked being the center of attention. People looking at me makes me nervous and now that I am out and about with a cute 1 year old people look all the time. Everywhere we go people tell me how cute Ryan is and try to talk to him. Obviously I appreciate the kind words, but it makes me uncomfortable, especially at this age when he can’t actually talk so I find myself answering the questions for him. 

I know this is something I am going to have to get used to because people love babies and toddlers. I also know that the positive attention is going to turn into negative attention when he is having a tantrum in the middle of the store and everybody inevitably stares at me. I have already decided this is going to be one of the hardest parts of parenting for me, and I am trying to get ready for it!

Being Demanding

Again, my friends and family may think I am already a demanding person but I really try not to be. I try to make sure everybody else is happy and comfortable and adjust my needs accordingly. Now that I have a child, though, I am definitely more demanding.

When he was a newborn I had lots of demands. I didn’t want people to kiss him, we didn’t go to parties until he was 8 weeks old because of all of the germs, and people had to wash their hands before they held him among other things. All of these seem reasonable but it felt weird to me to demand it.

I also am more demanding when it comes to making plans. I make sure to make them around his nap schedule and if that doens’t work for other people then we just can’t get together that day. This one is really hard because it obviously changes my social life, but if he doesn’t nap when he’s supposed to it just makes for a miserable day (and sometimes night) for everyone. So really, he’s the demanding one, not me!

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I knew motherhood would change me but I guess I didn’t realize how much. How has motherhood changed you? Has it pushed you out of your comfort zone? How?

Throwing a Football Themed First Birthday Party

I can still remember talking to Lisa on the phone before Ben’s first birthday. She was super stressed and telling me everything she was doing for the party and all of the money she was spending on it and I said, “you are crazy, he is never going to remember this” (Sorry, Lisa!).

Fast forward 3 years and now I’m the crazy one. I guess I can add spending a lot of time and money on a first birthday to my Things I Said I’d Never Do blog! Since I did spend the time and money to make it the best first birthday I could for Ryan, I figured I’d share some of the ideas with you guys in case you decide to do the same theme.

A little disclaimer…I am not a very crafty person. While I was making the chocolate football molds for the cupcakes (which I thought would be a super easy task) I sent Lisa a text that said, “if I ever say I’m going to do something creative again, please slap me!” So keep in mind that I did most of this myself and I tried my best!

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Theme: Detroit Lions

Since Ryan was born in October and fall is my favorite season I wanted to do something that celebrated that. Football is an obvious fall activity and my husband is a die-hard Lions fan so I figured that would be the perfect theme! I also thought that football decorations would be easy to either make or buy. I started by buying Ryan a personalized Detroit Lion onesie to wear for the party.

 

 

Invitation

I wanted the invitation to look like a ticket to a Lion’s game so I looked at a picture of a ticket and made the invitation using Microsoft Word. I took a picture of Ryan wearing the Lion’s onesie and I luckily had a picture of him in a different Lion’s onesie from when he was a newborn. If you want the template to make your own football ticket invitation, email us and I will send it along!

Decorations

I didn’t really want to go crazy with decorations so I kept it pretty simple. I bought a few football decorations from Party City and made sure all of the supplies were Honolulu Blue. I also printed out all of Ryan’s monthly pictures and arranged them on the wall in chronological order. It was really fun to see how much he grew throughout the year and I kept the football theme by titling it, “Ryan’s Rookie Year”. I also decorated the high chair with Detroit Lion footballs and a ONE banner. Again, I made all of these using Microsoft Word and then laminated them so that they looked a little more professional.

 

 

 

Party Favors

We had several kiddos coming to the party and I wanted to give them something they could actually use as a party favor. So I found football cups at Oriental Trading and used a metallic paint pen to write their names on the back. These were perfect because it gave them something to use as a cup while at the party and they could also take it home and use it again and again.

Food

This was probably the hardest decision to make for the party. I wanted to stay with the football theme but I also didn’t want to break the bank. We eventually decided to cater the party (in hopes of taking a little stress off of us during it), and ordered fried chicken, potatoes, and coleslaw. I also made a football shaped cheese ball, and had veggies and fruit for appetizers. For a little more decoration I used letter boards to make a “Concession” and “Beverage” sign in hopes of it looking like the concession stand at a football stadium.

 

 

 

 

Dessert

I decided to make all of the dessert myself which I definitely wouldn’t suggest. I love baking, but like I said before I am not very crafty. So things that seemed simple (football molds, mini-cupcakes, piping bags) did not end up being so simple. But in the end it turned out semi-cute and people seemed to enjoy them. I made mini-cupcakes (half with chocolate footballs and half with sprinkles), chocolate chip cookies, and a mini-football cake for Ryan (with healthy ingredients–yes, I am apparently that mom).

 

 

 

Overall, the party turned out great and Ryan really seemed to enjoy it. He obviously won’t remember it but we took lots of great pictures for him to look at when he’s older.

I hope some of these ideas help you when planning your football themed birthday party (either with what to do, or what NOT to do!)

If you want any of the templates (invitation, high chair banner, 12 month picture banner) please email me at momfaming@gmail.com and I will send them to you.

Down Syndrome Awareness Month

October is Down syndrome awareness month. I didn’t even know this existed a year ago because I honestly didn’t know much about Down syndrome back then. But I do now because of my amazing son, Ryan. Ryan was born in October so you would think that I would have actually known about this last October, but our introduction into the DS world wasn’t as simple as all of that. You see we went four months without even knowing that Ryan had Down syndrome. Weird, right? Let me rewind…

Meet Ryan

Ryan was born on Saturday, October 14th at 1:18 am. He was a perfect 7 lbs 2 oz and 20 inches long. He was 11 days early but came into the world without any problems. We were immediately in love and cherished every minute with him. He didn’t have any health issues besides having to have a hearing test (which he passed) when he was a few months old because he didn’t pass the one at the hospital. He was a pretty easy going baby who was a great sleeper and hit his milestones either early or on time. Fast forward to our 4 month doctor’s appointment… 

The Doctor’s Appointment

We go to a practice that has several pediatricians and this was our first time seeing this particular one. Everything was going great…his heart sounded good, his lungs sounded good, he was babbling for the doctor…until she excused herself to use the bathroom. She was gone for quite a while, which I thought was weird but didn’t really think much more of it at the time. When she came back she said, “does he always stick his tongue out like that”. I said “yes, he does stick his tongue out a lot, but he’s doing it less than he used to.” Then she very casually said, “I think we may need to get him tested for Down syndrome.” I felt my heart fall to my stomach and needed to sit down so that I didn’t drop Ryan. She went on, “let me explain. He has almond shaped eyes and sticks his tongue out which are both characteristics of Down syndrome. He doesn’t have many other traits and I feel in my heart that he doesn’t have it, but I think it’s something we need to get checked out to know for sure”. I was at the appointment alone and immediately called my mom when I got in the car. I’m not sure she could understand much through my tears but she definitely heard the words “Down syndrome”. She eventually calmed me down and we made it home, where she met me to calm me down even more. My husband, who was at work, kept texting me about the appointment and how it went so I told him to call me when he got a chance. We spoke and he left work right away so that we could take Ryan to get the blood test.

The Call

The results of the blood test took a week to come back and it was the longest week of my life. I tried to stay away from Google, but obviously gave in and looked at a few things. I spent the week staring at Ryan and going back and forth from “there’s no way in hell he has this” to “okay, maybe I see it”. I think throughout the week I eventually came to terms with the fact that he really might have it, which made the phone call slightly easier. It was a Friday and the doctor called at 7:00 at night. She told me that he does have Down syndrome and some other things that I honestly don’t remember now. When I hung up I told my husband and we took turns crying and comforting each other. At one point we were both crying and Ryan, who was on his tummy, looked at us, smiled, and rolled over (the first time he had done that since he was tiny). I think it was his way of saying, “I’m good, what’s wrong with you guys!?”

The Journey (so far)

The next couple of weeks were a blur. We had to tell all of our friends and family and we had to sort through our own emotions. As much as I love my baby and knew we were all going to be okay there was still a little bit of grieving to do. Grieving for the future, really. The plans I had already made for him in my mind that will now look a little different. 

We also had to follow up with the doctor and get him into several other specialists. He had to see a cardiologist—even though his heart had always sounded fine, heart problems are very common in babies with DS so he needed an EKG and an echocardiogram to be sure. We also got an appointment with an ophthalmologist (because vision problems are also common) and have to see a pediatric dentist by the time he is 1 to try to help with any dental issues. He also had to go get his blood drawn to check for several different things (which he’ll have to do every year for the rest of his life) and we made an appointment to see a genetic specialist. On top of those, I had to get in touch with our school district to start with Early On (a special education program for children birth through 3). So far all of the appointments have gone great and we love the Occupational and Physical Therapist who come to our house each week through Early On.

The Point

So why am I telling you this long winded story? For several reasons, really. One, if you have been reading this blog or looking at our Facebook page, you have seen Ryan a lot. Along with seeing him I wanted you to get to “meet” him too. Second, since it is Down syndrome awareness month, I wanted to make everyone AWARE. This is what Down syndrome looks like for us. This is our story and from what we’ve learned it’s not a very common one. Finally, and most importantly, if telling our story helps even one other family going through the same thing it is worth it. Obviously Down syndrome has changed our family, but for the BETTER. It was definitely hard when we first found out and we know that there will be bumps along the way but Ryan is an amazing little boy who has a very “normal” life. He does the same things as other babies his age, he just does them a little later and has a few more appointments to go to. We know we were chosen to be his parents for a reason, and we will fight to get him everything he needs to succeed in life. Trust me, he’s worth it!

~Erin

Activities to Promote Cognitive and Physical Development in Babies

When Ryan was 4 months old he qualified for Early On because of his Down syndrome diagnosis. Early On is a special education program for children aged 0-3 that is provided through our school district. As part of his services he has an Occupational Therapist (OT) and a Physical Therapist (PT) come to our house once a week for an hour each. These amazing ladies use the hour to “play” with him and basically teach me (and sometimes my husband) activities to do with him to promote his physical and cognitive development. I thought I would share some of their tips and tricks for others looking to do the same with their babies.

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Tips & Tricks from an OT and a PT

Start with Signals

Babies can understand and use signals long before they can actually say them. So if you want your baby to be able to communicate with you before he has the
words to do so teach him some easy signals.

Trick #1:
To get a baby to raise his arm up —
Softly run your hand down the baby’s arm (from elbow to wrist) and it will automatically raise up due to his natural reflexes

The three we started with were “up”, “hi”, and “bye”. All of these include the baby raising his arms up so the trick to get him to do this is to softly run your hands down his arms (from elbow to wrist) and his arms will automatically raise up due to his natural reflexes. Once you get his arm(s) up, say the word you want him to learn (“up”, “hi”, or “bye”).

So for “up”, run your hands down both of the baby’s arms at once and repeat “up” several times. We did this before we picked Ryan up each time (and had other people do the same) and he now does it whenever we say “up”. He also reaches up when he wants to be picked up without us prompting him occasionally.

For “hi” and “bye”, run your hands down whichever arm you want your baby to use and then once the arm is up, put your hand on his and move it back and forth while repeating “hi” or “bye”. We are still working on this one with Ryan but he does do it occasionally on his own.

Take Turns Talking

Babbling and cooing are a baby’s first steps in language development. In order to help your baby progress from this to saying real words you need to join in the conversation. When he is “talking” act interested and look in his eyes.

Trick #2:
To promote language development —
Have a conversation with your baby and say things like, “really!?”, or “I can’t believe it!”

Then when he takes a break, start talking back (just like you would in a real conversation). Either repeat back to him what you think he is saying or say things like, “really?”, or “I can’t believe it!”. Then once he starts saying a group of sounds (ga-ga, da-da) repeat those sounds back to him a few times and then introduce a new set of sounds (pa-pa) and see if he will say that back. We have been doing this with Ryan ever since he was a newborn and the OT and PT are both shocked at how vocal he has been since they met him!

Use Furniture Instead of “Containers”

We got to a point where we wanted Ryan to sit up and play before he was able to do so independently so we used a Sit-Me-Up Chair to help him. He loved it because he could see so much more than when he was laying on his back, and I loved it because I could see his cute little face while I played with him.

Trick #3:
To help a baby sit up before they are able to do so independently —
Use couch cushions to prop your baby up so that you can play with them

While this chair is perfect for when I want to leave the room for a minute and for feeding him (when we don’t have access to a highchair) the OT and PT suggested not to use it for play time. They said that the chair was doing most of the work for him instead of his muscles learning to do it for themselves. So instead, they suggested I use the furniture to help him sit up. We either put him in the corner of the couch (if we were sitting right next to him) or we bring the couch cushions to the floor and put him in the middle of them. He loves sitting like this to play with his toys and even though the cushions are there if he starts to fall, he is now usually sitting up on his own and not even using them.

Have Fun with a Mirror

Mirrors are great to promote language and cognitive development. When Ryan looks in the mirror he immediately starts “talking” to the baby looking back at him. This is great practice for him (and hilarious to watch)! He is also able to see how his mouth moves when he is making his sounds (or how my mouth moves if I join him in the mirror and talk back to him). This helps him understand that his mouth needs to make different shapes in order to make different sounds.

Play Peek-a-Boo

It is so fun when your baby reaches the age where he can really start to play with you and Peek-a-Boo is one of the first games he will be able to play. In order to help Ryan learn this game the OT first put a burp cloth over his head to see what he would do. The first time he just wiggled around trying to figure out how to get it off. After she did it a few more times, though, he realized that he had to grab it off using his hand. Once he had it off we excitedly said, “peek a boo!” so he realized that it was a game. He now immediately takes the cloth off and smiles because he knows that he has won the game. He will also sometimes hold the cloth over his own face, pull it down, and smile when I say “peek a boo”.

Trick #4:
To help your baby understand object permanence –
Teach them to play Peek-a-Boo with themselves and with toys

The OT then moved on to putting the burp cloth over one of his toys. She started with his favorite toy so that he would be more interested in finding it. So she put the toy in front of him, let him see and touch it, and then placed the burp cloth over it. This version of the game took a little longer for him to figure out but he finally understood that if he took the cloth off his toy was still under it. This really helps to promote cognitive development because it means that the baby is beginning to understand the concept of object permanence and realizing that something doesn’t disappear just because it is out of sight.

Encourage Mimicking

They say that imitation is the sincerest form of flattery, right? This is even true with babies! When you can get them to mimic something you are doing it is really helping to promote their cognitive development. One of the first things I was able to get Ryan to mimic (besides sounds) was clapping. I started by clapping his hands together with him and cheering, “yay, Ryan!” I did this for several days until one day I said it and he clapped all on his own. We then moved on to “Patty Cake” and he’ll now start clapping if I just start singing that song. Other ways to encourage mimicking are playing with a toy first and then seeing if he will do what you did after, making sounds and trying to get him to repeat them, and joining him in the mirror and seeing if you can get him to make the same silly faces that you do!

All of these activities are very simple and use things that are easily found in your home. Some may be things that you are already doing, but hopefully this gave you a few tips and/or tricks to help you the next time you want to meaningfully play with your baby!

What are the best activities you have found to help promote your baby’s cognitive and physical development?

My Toughest Decisions About Motherhood (So Far)

I’m not very good at making decisions. I just don’t like doing it. Motherhood is all about making decisions, though. What color should the nursery be? Which stroller should I buy? Which pediatrician should we go to? What food should we give him first?

I assume as my son gets older the decisions will get harder to make, but so far these have been my toughest decisions about motherhood:

Should we even have kids?

I grew up loving kids. I played with dolls from as early as I can remember, I babysat starting in middle school and I even became a teacher (which trust me, you have to love kids to do!). If you would have asked me when I was younger if I wanted kids it wouldn’t even have been a decision to make; I obviously did! Then I started teaching…

I gave my students all that I had throughout the day and I couldn’t imagine coming home and having any more to give to my own child.

Teaching is not an easy job. I gave my students all that I had throughout the day and I couldn’t imagine coming home and having any more to give to my own child. I would always tell the other teachers who had their own children how amazing they were for being able to do both. I wasn’t sure I was going to be able to be one of those people, though. Then, after several years of teaching, I became a director of a preschool. It was the perfect balance of teaching, managing and office work and it really reminded me of how much I loved kids.

My husband and I discussed it a lot while I was teaching and he said that he would be okay if I decided that I just couldn’t be a mom and a teacher. Then once I became the director we talked again and decided to try to get pregnant. We got pregnant almost immediately and I was so excited right from the beginning. Unfortunately that pregnancy ended in a miscarriage. It was an extremely tough thing to go through but it just proved to me, even more, that I was meant to be a mom. Right when we could start trying again we did. I was very nervous throughout the pregnancy, because I didn’t want the diasppointment again, but once I saw my son I knew that we had made the right decision. I couldn’t imagine my life not being a mom.

What should we name the baby?

This should not have been as big of a decision as it was for us. I knew we were in trouble, though, right before we got our first dog and my husband said “it’s really important to me that I get to name him”. Umm…what? So for months we discussed names and we finally agreed on Dexter (from the show Dexter). When we got our second dog it was easier because we decided to just stick with serial killer names and went with Norman (as in Bates).

Once I was pregnant and we started talking about names we realized that we couldn’t continue the serial killer names with our child (well, we could, but people might start to talk). So we started discussing other options. We started with boy names and we easily came up with two that we both loved. When it came to girl names, though, we had a much harder time. Every name he said I would hate, and vice versa. There seemed to be no compromising, so we decided to table the discussions until we knew if we were having a boy or a girl.

Luckily, we found out we were having a boy so our decision became much easier. My husband said that he loved both names equally so he would leave it up to me to decide. Both of the names were very different so we thought we should wait until the baby was born to decide which name to go with. The second I saw him I knew he was a Ryan and I have been happy with that decision ever since!

Should I stay home or go back to work?

This is a tough one that I think plagues all mothers. On the one hand I grew up with a stay-at-home mom and I loved it. She was able to participate in every school event (she was even the PTO president!) and I knew I wanted that with my child too. On the other hand, I had worked very hard to go through college, an internship, and back to school for another endorsement on my teaching certificate. I had worked many tough jobs to get enough experience to get into a good school and worked my way up to Director there. I loved (most parts of) my job which made it an even harder decision to make.

I also know that everything happens for a reason and now that my son was diagnosed with Down syndrome I am so relieved that I get to stay home with him.

Ultimately, I decided that my job was just not flexible enough to do while also being a mom (I give so much credit to the moms who can juggle both, I just didn’t feel like I could). It was a very hard decision to make and I definitely miss going to work, but I also know that I am very lucky that I could even make that choice. I also know that everything happens for a reason and now that my son was diagnosed with Down syndrome I am so relieved that I get to stay home with him. Eventually I want to go back to work (part-time at least) but for now, I am very happy to be a stay-at-home mom.

Should I get an epidural?

Just kidding! That was by far the easiest (and best) decision I’ve ever made! Yes, please!

Should we have another baby?

I feel like right when you get married the first question people ask you is, “when are you going to have kids”. Then once you have one you think they’ll get off your back for a while. Instead, the question always comes… “when are you going to have another?”. Umm…can I please just enjoy this one for a while (not to mention, let my body heal for a few minutes)?

But we aren’t getting any younger so this is definitely a decision we have to make sooner rather than later. We had discussed it a lot before we even had our son and we were definitely on the fence about how many kids to have. The fact that he has Down syndrome now has to be entered into our decision making as well (I love him with all of my heart and soul and wouldn’t change him for the world, but we can’t be ignorant to the fact that our chances of having another child with DS goes up to 1 in 100 which is definitely something to think about). I think we change our mind weekly about having another and it will be something we have to continue to think about before we make a final decision. Stay tuned!

~Erin

Mom of Fame – Erin

Erin is a very special kind of person. She is the kind of person that worries about others before herself. She is, in all honestly, the type of person you want by your side through thick and thin (I don’t think any of her friends would argue this). I am so incredibly happy to call her one of my very best friends.

I knew when she became a mother that she would be a rock star. She is the most organized person I know and she gives a 110% to everything that she does. Ryan is SO very lucky to call her mom and vice versa.

It is hard to be as honest and real when it comes to blogging to complete strangers (and friends). It’s not something that just comes naturally. This is especially true for Erin. She is not the type of person to put her baggage on other people. She isn’t the type of person to talk openly about personal matters. But, she did just that for her mom of fame interview. This season of her life has not only been joyful, but it’s been challenging in ways most of us cannot understand. She is an incredibly resilient person and mother.

Without further ado, I am very excited to induct Erin into our Mom Hall of Fame forever. She deserves it more than she will ever know.

-Lisa

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What is the best piece of advice you were given about motherhood? Did you take it? Would you give that piece of advice to someone else?

One of my best friends told me that no matter how hard motherhood seems to get to just remember that “the days are long, but the years are short” (which happens to be a quote by Gretchen Rubin from The Happiness Project).

She is also a stay at home mom so she wanted me to understand that sometimes the days are not going to be all fun. There might be no sleep, a cranky baby, and lots of housework to do. In the end, though, each day needs to be cherished because time goes by so fast.

I didn’t quite understand this until I was a mom. My little one is less than a week away from turning 6 months old and I just can’t believe it. I have already had to put away his newborn, and 3 month clothes, and the 6 month ones don’t have much time left. I am definitely taking her advice and really trying not to get stressed out by the little things, and focus more on the good things that happen each day.

I will give this advice to any friend who is having a baby so that they remember to stop and enjoy these days because they go by so fast and we don’t get them back

How is motherhood different than you envisioned it to be?

It is honestly more fun than I thought it would be! I used to work in a daycare and I absolutely hated going into the Infant Room. It was either 4 babies crying, or 4 babies sleeping and super boring. I was worried that I would be bored, especially as a stay at home mom. This has not been the case at all, though. We have created a little routine each day and I love playing with him (especially now that he smiles and laughs!) The time flies and I can’t believe it when my husband comes home and it’s already time to start making dinner!

What are your three strengths when it comes to motherhood?

Multitasking 
I have always been very good at multi-tasking. As a teacher there were so many different things happening in the room and you had to be aware of all of them (or a kindergartner could stick a penny in a wall socket —true story!) As a mom I feel like you are also always doing a million different things at once! I feel that I am able to juggle all of these different things while still giving each one the attention it deserves.

Patience
My husband and his friends have a reunion every year and one year they were listing everybody’s super powers for a game they were going to play and mine was “unending patience”. I think this may have been a dig at my husband (because to be with him you need to be patient, haha) but it was also a compliment to me. I have prided myself my whole life on being a very patient person (with kids at least) and I feel like I have only become more patient now that I’m a mom. I’m sure my patience will be completely tested once he’s a toddler (and a teenager!) but for now, it’s definitely one of my strengths.

Experience
I know this sounds kind of silly to say as a strength for motherhood but I think my experience has really helped me feel comfortable being a mom from the beginning. I have been working with kids since I started babysitting in middle school and I’ve worked with many different ages including infants, toddlers, preschoolers, and elementary schoolers since. Through my training I also know developmentally appropriate activities to do with my son (through first grade at least!) This really gives me an advantage as a stay-at-home mom because I know he will be learning even though he is not in a school setting.

Describe a time where you were completely overwhelmed as a mother.

I know I was chosen to be his mom for a reason and it will all work out the way it’s supposed to.

The answer to this question came to me the fastest, but it was definitely the hardest for me to put into words. It was when my son was diagnosed with Down syndrome.

When I took him for his 4 month check-up, the doctor was slightly concerned about how he kept sticking his tongue out, so she wanted to have a blood test done to analyze his chromosomes. It was a total shock and I left there feeling so stupid. How could I not have known? I am his mom, I am supposed to know if something isn’t right. I am also a teacher who has had classes in special education, I should have seen the signs. I had been staring at his face for four months and it never even occurred to me that anything was wrong.

The week we waited for the test results were basically torture. My mom told me “you know, we’ll be okay either way, right?” And I knew she was right, but I said, “I just want his life to be as perfect for him as possible”. Because she’s also a mom (and a grandma), she knew exactly what I meant.

So, after a full week, the results finally came back; he did have Down syndrome. It was a rough couple of days for us (and our friends and family) as we processed the information. We are doing so much better now, and realize how lucky we are to have this little boy in our lives.

Even so, the diagnosis was and still is very overwhelming. It’s overwhelming for the obvious emotional reasons, but it was also overwhelming for the logistical reasons. Right away we had to take him to see a cardiologist, genetic specialist and ophthalmologist. Then we had to sign up with our local Early On program who is going to service him for 2 hours a week at our house. Every 6 months he needs a blood test to check for several different things, as well as see a dentist by the time he is 1 year old. The list goes on and on (I’m getting overwhelmed just thinking about all of it!) but I know I was chosen to be his mom for a reason and it will all work out the way it’s supposed to.

Is there anything you feel that you’ve lost about yourself since becoming a mother? What have you gained?

I have lost my independence (obviously). Having dogs was good practice for this because you have to keep them in mind when making plans but having a child completely takes it away from you. Since baby cages are frowned upon it makes it very hard to go out and do things unless you have a plan for the baby. Luckily I have parents that live close by and a husband who is very understanding of my need to occasionally do things by myself in order to keep my sanity!

I gained an understanding of true love (I know, sappy, right!?). Everyone tells you when you’re pregnant that you’ll understand true love once the baby comes out but I didn’t really believe them. I am not a touchy feely person and don’t really believe in grand romantic ideas but once that baby came I was immediately obsessed. I can’t get enough of his snuggles, I miss him when I’m not around him, and every decision that I make is made with him in mind.

What do you want your child(ren) to learn from you?

My mom used to always tell me that “life’s not fair”, and although I used to hate when she would say it to me, I would like to instill the same thought process into my child.

Obviously “life’s not fair” is not a super optimistic thing to teach your child, but it is a very necessary one, especially in today’s world. I think it really helped me to understand that things are going to happen that seem unfair, but that’s okay. I want my child to know that sometimes you’re going to want things that other people have, and sometimes they’re going to want what you have. It’s really best to not compare yourself to others, but to instead enjoy and appreciate your own life!

Welcome, Erin, to the Mom Hall of Fame!