how not to compliment my son's appearance

I can't count the number of times I have been told that Archie "hardly even looks like he has Down syndrome". I have heard it said in many different ways. From "wow, I couldn't even tell he had Down syndrome when I first looked at him" to "he really doesn't look very Down syndromey". (I kid you not, a mom at his very first school said those words.) I was so new to the world of parenting a child with Down syndrome, that I had no idea how to interpret that. I thought about it for a long time. Was that supposed to make me feel good? It didn't. Was that something moms of kids with Down syndrome would like to hear? I didn't think so. I even asked friends, "can you tell by looking at Archie that he has Down syndrome?" I could tell by their reactions that people thought it was a nice thing to say that he didn't look like he had "that much Down syndrome". Like they thought that if they said, "absolutely, he has all the features that come with Down syndrome, I definitely see it..", that would be a negative or hurtful thing for me to hear.

The other day at a McDonald's playground, (cause interesting stuff always goes down at McDonald's playgrounds), a woman asked me if Archie "was Downs". I told her that he does have Down syndrome. Then she said, "I thought so, but wasn't positive. He doesn't look that severe." I didn't have any good words. I usually don't in those situations. The clever words always come later. I knew that she wasn't trying to sound ignorant or be rude. In fact, it was clear that she was trying to be complimentary of my mildly Down syndromey looking kid. 

But here's the thing: Telling me that my child who has Down syndrome doesn't look like he has it "that much" or in whatever arrangement of words one can phrase that thought, is not a compliment. It implies that you think it would make me happy to know that my child looks less "wrong" than he could. That "it could be worse".

First of all, I happen to LOVE the physical features that come with the extra chromosome. I think they are beautiful and precious. I am not just saying that to try and romanticize. And Archie does have all of those features. From his almond-shaped eyes, to his little, low-set ears. His chubby little hands, and extra wide feet, with my most favorite: the extra space between his big toe and the rest of them. He has all the classic Down syndrome features and I wouldn't change a single one if I could.

I have absolutely no desire for my son to appear more "typical" or for him to look like he is "less disabled". Whatever it is you are trying to say. I really don't like it. I get that this is one of those times when the person making the comment is well-intentioned. And I always try to extend grace. If you want to say something about his appearance, tell me that he is beautiful, that you love his eyes. But don't tell me that you couldn't tell that he had Down syndrome at first glance.

Thanks for letting me share, 

Jojo is a big brother! {well....sort of}

Many of you know that my journey to Jojo began with foster care. Well, not long after we brought Jojo home from Texas, I felt the Lord nudging me to finish my foster care licensing....just in case.

Almost exactly a year after Jojo was born, I felt like the time was right to get my license and be ready just in case a baby like Jojo ever needed a family. Babies with special needs are abandoned at the hospital often, and it is hard to find foster families who are able take them. I wanted to be available to take the hard to place kids with special needs.....but not to be a "normal foster parent" and take in "typical kids".

I turned in the final piece of paperwork on a Friday in July, assuming that I would sit back and wait until I was needed. I sat back and waited .....until Monday when I got the call!

A statewide email had gone out (meaning the county the baby came from could find no one to take him) about a 6 month old baby who was born with Down syndrome, but also had a "whole host of other medical issues". My social worker immediately thought of me. The list of his needs was overwhelming as I talked to her on the phone and tried to scribble down as many of his diagnosis as I could (on a trach, floppy airway, hearing issues, problem with his spleen, complicated heart defect, terrible diaper rash-those are the ones I can pronounce) so I could figure out what they actually meant later. But I knew then that the sick child she was describing over the phone was very different from the real child in real life. I said I needed to meet him.

So the next week Lili and I (they were in town..... halleluiah) went up to the hospital to meet this little guy. On the way she said "You know once you see him you won't be able to say no". To which I responded, "obvi".

As I held him for the first time, he was no longer a list of medical conditions, he was no longer a diagnosis, he was a beautiful child of God in need of someone who could care for him when his family could not. I told the room full of social workers, doctors and nurses that I was in. I was on board to do whatever necessary to bond with this sweet boy and do the training required to bring him home.

That was on the 23rd of July. I have been visiting the hospital, loving on and advocating for this sweet boy since then. He has been in the hospital since he was born, but has already had 1 heart surgery and is on the road to recovery. We call him "Baby Zee".

On the 28th of July, Lili and family had to go back to Texas. Later that afternoon, I got a call about two boys, ages 5 and 9 who needed a safe place to stay for 1 week.....and they are still with us today. But that is another story for another day!

Please pray today for an important evaluation that Baby Zee will have with a Pulmonologist that will likely determine how much longer he will have to be in the hospital.

Will I adopt him one day? I don't know. For now I will just love him just like I love my other kids and go where the Lord leads!

{I WISH I could post pictures of him, but since it is a foster placement that is against the rules....but here are some that I can show you}

Jojo and Zee

Heading off for his first heart surgery on Aug 28th

 Thanks for letting me share,

that one time when i found out my baby had down syndrome

When I first began blogging about our journey to, and our life with Archie, I had no idea all of the people I would have the opportunity to support and walk with in their own journeys. I recently received a message from an old friend. Tiffany and I went to high school together, and her husband Matthew and I went to school together from Kindergarten on. I hadn't seen either of them in years. Tiffany sent me a message to let me know that she and Matthew had just found out that the baby girl they are expecting has Down syndrome. She had been following our story and reached out for support. Our families were able to go sit down and have lunch together and they got to meet Archie. I am humbled to walk beside them during this time and can't wait for their newest bundle to arrive. 

That One Time When is a place where we want to share your stories of how your life has been impacted by someone with Down syndrome! If you would like 

to submit a guest post, just use the "Email Us!" form over there ----->

Today's post is by Tiffany Lim

Matthew and I found out that we were pregnant with our second child this past April. We were excited and we were ready, but it’s always just a little shocking when you see that positive pregnancy test. After finding out we were pregnant, I felt like I had to brace myself. I’ve had several close friends and family members have miscarriages, I didn’t want to let myself get attached to our baby “just in case.” I went to my routine obgyn appointment and everything seemed normal. We wanted to know the gender of our baby as soon as possible and heard that you could do this early through a blood test. So when I went in for my next visit at 12 weeks, I asked if I could take the Panorama blood test. I knew that the Panorama was a non-invasive screening for genetic abnormalities, however, I didn’t think anything of it. I just took the test because we wanted to know the gender of our baby as soon as we could. 

One week later, the nurse called. I had mixed emotions when I saw the voicemail icon on my phone. I knew that I would be finding out the gender of our baby! We already have a sweet baby girl, Madeline, who is almost 2, and I knew that Matthew wanted a boy, but of course, we would both be happy with whatever baby that we were blessed with. When I called the nurse back, my world started to crumble. She said that my test results showed that I was “high risk” for Trisomy 21. I didn’t know what high risk meant, I didn’t know what Trisomy 21 was. She said this was Down syndrome, but I didn’t even know what that meant. She said the obgyn wanted me to come in to see him that day. When I got off the phone, I was paralyzed in shock. I had no idea what was going on. I am young. I am healthy. I already have a perfect, healthy child at home. We didn’t have any family history of anything like this. I knew that most people in our small city don’t opt for taking this test and most don’t even know it exists. So, I banked on it being a mistake. Maybe they switched my blood with someone else’s. It just wasn’t right. Matthew joined me that afternoon for our visit with the obgyn, and things started to get real. When my doctor showed me the test results, he said that the probability of our baby having Ds was >99%. He was confident that the test results were accurate and there hadn’t been a mistake. The world fell completely silent. It was as if I were alone, Matthew sat next to me, but it felt so unreal. I felt like nothing mattered in the world. Our world was shaken.

When we got home that night, the tears would not stop. I tried to hold it together when Madeline was awake, but when she went to bed, Matthew and I just sat and cried. We didn’t sleep. I cried so much and so hard, I threw up all night. Matthew and I tried to talk about how we were feeling, but it just seemed like there weren’t words to describe it. We didn’t know anyone who had Ds, so our worst fears ran through our minds: The comfortable lifestyle that we had planned for ourselves was no longer obtainable. The idea of our family going abroad for Matthew’s job was no longer a question. We would have to take care of our child for the rest of her life. We would have to ask Madeline to help take care of her sister. We would outlive our baby. Would we be strong enough to stand up for our baby?  

Even through all the tears, the silence, the storm, there was constant peace in me. Yes, it was hard and it hurt, but there was a stillness in me that can only be described by God. In my very minimal research after receiving the results from the blood test, I knew that only 1 in 691 children are born with Ds and that there is no reason found that some babies are born this way. That told me that the only reason we were having this special baby was because God had chosen our family. We know that God is perfect and makes no mistakes. He chose our family to raise this precious child and will use us to glorify Him. We completely surrendered. Slowly, and I mean, very slowly, our fears started to turn into excitement. Through a little bit of research, talking to our genetic counselor, and reaching out to friends and their friends of friends who know someone who has Ds, we learned that kids with Ds can do almost anything normal kids can do, they just move at a slower pace, but that makes their accomplishments that much sweeter, and they are probably the most joyful people that you will ever meet. Eventually, we were able to grasp the understanding of the diagnosis that we had been given and share our news with our family and close friends. The response that we received was overwhelmingly sweet. Initially, they mourned by our sides, but turned quickly to a desire to walk with us and support us in our journey. 

We know that our adventure will be difficult at times, but we know that God is faithful and equips us with everything that we need to endure if we surrender to Him. 

To my baby girls, we love you. Don’t ever forget it. Every day and every second we love you and can’t wait to share in the challenges and joys to come.

why i like to give my son opportunities for failure

Last week I wrote a post in which I talked a little bit about how I like to give Archie (my ten year old with Down syndrome who we adopted from Bulgaria at age seven) opportunities to fail. I got several responses from people who were concerned with my love for a good failure. Some insinuated that was cruel and unnecessary. So I thought I would go into a little more detail about what I mean.

One commenter asked, "You 'love' giving him opportunities to fail? Doesn't life do that?" Of course, life gives every single person in the world chances to make poor choices. That's not the point. Down syndrome or not, life gives us all plenty of chances for failure daily. As Archie's mother, it is my responsibility to give him opportunities for small failures. The thing is, if he isn't allowed minor failures today, then there is a much greater chance of him making catastrophic mistakes later in life. So yes, when I see an opportunity for him to potentially make a bad decision (that won't be harmful to himself or anyone else), I jump on it, step back, and let him learn.

His first Christmas home, we were walking through Urban Outfitters and he came across a lovely display of shiny, very breakable ornaments. His eyes lit up and he walked up to the ornaments and stuck his chubby little hand out to grab one. I KNEW what was about to happen. If I wanted to take the easy, less stressful way out, I would have grabbed that ornament out of his hand and told him not to touch them. But I just watched him dangle it in front of his eyes. His fingers separated and it was like slow motion watching that thing fall to the concrete floor and break.

To be clear, this was not Archie's first time in a store. And he had been told many times before not to touch things in stores, and especially not to drop things on the ground. HE KNEW. Would it have been fair for me to let him do that if I thought he didn't know any better? No. But, regardless of how helpless that boy can make someone think he is....he knew exactly what he was doing.

Luckily, the ornament did not smash into a bunch of pieces and I was able to pick up the few chunks and we went and stood in line to pay for it. I was also fortunate that my mom and sister were there with us, so I was able to whisk Archie home for a time out and leave Ace with them. A little while later Archie and I went back up to that store. He walked in with his hands behind his back and kept them there as we slowly strolled past the ornaments. And to this day, he remembers that incident and does not grab and break things in stores.

In my last post, I told a story about Archie losing cake privileges at a birthday party for attempting to blow out the kid's candles. And another commenter asked if I should have given Archie some sort of verbal cue when he was faced with a situation in which another mom was trying to get him cake. No! Most definitely not. Again, Archie knew what to do in that moment. Yes, he looked at me with a "is this a test?" face, and I could have absolutely said, "no, Archie, remember you aren't allowed any cake today." Of course I could do that. That would be EASY. But here's the thing- our goal for Archie is independence. And I am not going to be there holding his hand throughout every step of his life to say, "No, Archie, remember, we don't (fill in the blank)." He has got to learn to control his impulsiveness and make good decisions without me there to remind him.

This video shows one of my most proud mama moments. Ace and Archie had a choir performance at church. During rehearsal, Archie could not help himself from messing with the bright lights shining up from the floor. He kept reaching down and grabbing them, and earned himself several timeouts in the pew with me. I was certain come show time, those lights would catch his eye and he would be right down there on the floor with no concern of what was going on around him. But a miracle happened. Around 1:15 in the video, you will see his eyes find the lights. Then he grabs Ace's shoulder as if to say, "don't let me do it, sis." Then he signs "good boy" as a reminder to himself. He wants so badly to jump down and mess with those lights but he doesn't. He is fixated on them for the remainder of the performance, but he controlled himself. And he was so proud. And his dad and I were SO proud.





If I wanted to eliminate stress, and ensure that Archie could not screw up during the actual performance in front of a packed chapel, I could have had his teacher move him away from the lights. But then he wouldn't have had the opportunity for that great SUCCESS. And that smile and laughter in the end is him being so excited that he did the right thing. That is a major win.

So when I say I love to give Archie opportunities for failure, it is not because I am being mean or cruel. It is because I love him and I owe him that. I owe him the greatest chance at independence. I owe it to him not to take the easy way out on things, but to go through the struggles, and fights, and failures with him so that he can learn.

Thanks for letting me share,

That one time when my brother saved my life

That One Time When is a place where we want to share your stories of how your life has been impacted by someone with Down syndrome! If you would like 

to submit a guest post, just use the "Email Us!" form over there ----->

Today's post is by Linda Marie.

I always knew my big brother was different, from a very young age we had a bond unlike any other relationship in my life. A world of difference from the bond I had with my little brother, Bobby. I always knew he was different but I didn’t realize how special he was until the 7th grade when I threw a book at a bully’s head who was making fun of a girl in our class who also had Down syndrome. It was very apparent my brother wasn’t like the other kids.

Our favorite game growing up was checkers. We spent every weekend at our grandparents' house; there we played on a rug that had a large checkerboard pattern on it. We would separate out our Ninja Turtles, Wrestlers, and Power Rangers toys… those would be his pieces. They were obviously the superior toys, OBVIOUSLY. And my pieces would be various Disney and Looney Tunes toys, Treasure Trolls, and those small plastic Barbie toys that came in McDonald happy meals. (90’s toys were by far the coolest). We would sit on each side of the rug and play checkers for hours. We were very competitive. I would like to think I was better but that probably isn’t true.

We loved our Nintendo, the original NES of course. My big brother was better than me in Duck Hunt, Super Mario… actually, he was better than me in most things. We learned our numbers and letters together, watching Sesame Street. We taught ourselves to read with books on tape, side by side; I’m pretty sure we had every book and tape that they ever created. That’s right, tapes, CASSETTE TAPES.

We amused ourselves. Annoyed each other. Goofed off. Brawled. We rivaled for affection and attention. We learned from each other. Sometimes I was the only one who could understand him and communicate for him. He flirted with all my girlfriends. We shared our crushes with each other. He would display how I needed to pick up guys: "you must be direct, compliment, compliment, compliment, and most importantly always be cool." Sage advice. He protected me as any big brother would. We were best friends. I wouldn’t realize how fundamentally important that relationship would be growing up, until many years later.

My big brother, Christopher John, is 31 years old now and I’m 29. I’m now married to the love of my life, and as important as my husband is, there is absolutely no doubt my relationship with my big brother is the most important one in my life. (If my little brother reads this, I love you too!). Chris has shaped me into the person that I have become. This might be cliché but he really has taught me how to love. He’s the most caring, devoted, and affectionate human being I’ve come across. He brings out the goofiness in me and shows me how to not take life so seriously. Because of him I love deeply and without discernment. He has taught me how to always stick up for the underdog. He sincerely has effected my whole family, we are one of the most giving, empathic, and forgiving families. No other man holds the key to my heart.

He gave me a reason to live at times when I didn’t think I could make it through another day. He knew exactly when I needed someone to tell me "it was all going to be okay” or when I needed a pair of arms to wrap around me. His intuition is amazing. He was by my side as I worked through my mental illness. During the darkness of days he was the only person that was able to shine the light. The only person that could put a smile on my face. Offer a shoulder to cry on. Without judgement, without rejection, he pulled me through when I was all alone. 

"Good Morning Sunshine, did you have a nice nap?" is how Christopher greeted me every morning. He gave me the courage to start each day as it was the first day of my life. He ignited a fire in me that I thought to be gone. Going home a few years ago and spending that time with him saved me. Christopher John saved my life.

I’m not going to lie, it hasn’t always been a bed of roses growing up with a person with Down syndrome. In fact, sometimes it was, and still is, very exhausting. Some days I detested how every moment of our days were defined by his schedule. Spontaneous is not a vocabulary word in a world with a person with Downs. At times I would resent the special treatment he would call for. The favoritism and attention he would get. Some days there was just nothing that could stop a tantrum. Arguing with his stubbornness is just utterly impossible. Simple tasks, like just getting him to put his shoes on, can sometimes take hours. Don’t expect to be on time for anything ever again. Watching him manipulate people into "babying" him is just annoying. Especially when he’s very capable of doing it himself. He can’t get one past me and it drives him crazy. It drives us both totally insane. Lets not even discuss how he ALWAYS had to be the red Power Ranger…

Of course the advantages completely outweigh every struggle he brings. Like skipping all the lines at Disney World, WHO WOULDN'T LOVE THAT?! All kidding aside, I am a better person every time he surprises us with memories that we have forgotten. I am a better person when we recite and sing every word of Grease together. Hearing his voice 1,000 miles away will never be enough, I can't stand living so far away. I am better for knowing him. I am honored to call him my brother. 

the journey to jojo

{for those who may not know the story}

I remember standing in my kitchen, shortly after my separation, with a 2 year old little boy and a daughter on the way, realizing that my life had not worked out as I had planned. Divorce was never on my agenda, and I certainly never imagined I would go through one while pregnant.

However, God made it clear that He had made me to be a mommy, and that had not changed. I knew in that moment that He was leading me to adoption, but I had no idea what the journey would look like or that it would lead me to sweet Jojo.

After a long season of waiting, I decided in November of 2012 that I was ready to start the adoption process. I finally had the support of my family and so I jumped in with both feet!

I made an announcement on my blog that I not only planned to adopt, but that God was leading me to adopt a child with Down syndrome. I think all adoptive families struggle with people in their lives who just don’t “get it”, but as a single mom, I think I got a double dose. People said things like:

“Are you crazy?” (I got this one a lot)

“What is this going to do to the kids you already have?”

“How are you going to find time to deal with a child with special needs?”

“How is this going to effect your chances to find a husband” (yep….someone said that)

“How are you going to afford it?”

The bottom line for me was to simply give God my “YES” and learn to trust HIM to handle the rest.

My original plan was to pursue a 3 or 4 year old child with Down syndrome from China. I made this decision based on the fact that not only are children with special needs often overlooked, but most families want to adopt babies, leaving many kids who are older than toddler age without families. I was open to any country, but the one thing I was firm on was that I did NOT want a newborn.

God had different plans for me. Through a series of events, He showed me that His plan was for me to pursue foster care. While in the midst of the training, I heard about an organization called the National Down Syndrome Adoption Network. They are not an adoption agency because they simply connect birth parents with a pre or post-natal diagnosis of Down syndrome with possible adoptive families. I decided to register just in case a child in Alabama ever needed a home but I would have NEVER imagined anything would come of it! Who would EVER choose a single mom out of the HUNDREDS of "whole" families in the network?

VERY soon after I finished foster parent training, I got a call from the National Down Syndrome Adoption Network informing me that a birth mom in Texas had chosen ME to parent her soon to be NEWBORN baby boy! God certainly has a sense of humor.

I had less than 3 months to switch gears from Foster Care to adoption and, looking back on it now, that period of time is sort of a blur! I had to get my home study done fast, not to mention piles and piles of paperwork that had to be filled out.

I was blessed to be able to have some contact via email with the birth mother during that time with but it was very sporadic. This was a very fearful time for me because there were so many “what if’s”. 

What if the birth mother changes her mind?

What if the baby has major health issues when he is born? 

There were so many questions, and very few had answers.

I hadn't heard from the birth mom in over a month, and needless to say I was slightly stressed with all of the uncertainties. But about noon on June 19th the call finally came! I heard her voice for the very first time when she explained to me that her doctor decided that the baby wasn't growing well and labor needed to be induced the next day! It was baby time, and so Aidan, Ella Mae, my mom and I hopped on a plane to Texas at 4:30 that same afternoon!

In the midst of packing and booking flights, I called the hospital in Texas where she would deliver simply to let the staff on the Labor & Delivery floor know that we were coming and that we were adopting the soon to be born baby. I have to be honest, I sort of expected it would all turn out like a Lifetime movie where they would give us a room next door to the birth mom, the baby would be born, then be whisked off to our room where we would have a beautiful time of bonding as a new family. That was not the case. I was informed (and rightly so) that I had zero rights aside from what the birth mom wanted. She was delivering the baby and the mom and baby were their priority for the duration of her stay as far as the hospital staff was concerned.

We arrived in Texas late on Wednesday night and I went to the hospital bright and early Thursday morning. I went up to the Labor & Delivery floor, signed in, and went back to greet the nurses, let them know I was there, and available IF the birth mom wanted to see me when she woke up.
I went back to the small waiting room and furiously crocheted away on Jojo's not yet finished blanket while I waited. Not too long after, the OB doctor came out to the waiting room to talk to me. I assumed she had bad news of some sort, or that she was coming to tell me that the birth mom wasn't ready to see me, or that I couldn't be there at all. Much to my surprise, she was simply coming to introduce herself to me, and give me an update on how the baby was doing. I was absolutely floored by her kindness. We talked for a little while and then she said the birth mom was awake and ready to see me when I was ready.

I took a few deep breaths and made my way down the hall where I was greeted by Nicole. She introduced herself to me and said with a smile "I will be your Labor and Delivery nurse". She will likely never know how much those words meant to me in that moment. All of a sudden I was overwhelmed with gratitude, a sense of belonging, and a sense of empty handedness. How could I walk in to that room, and meet face to face with the woman who was about to spend hours laboring to bring my baby in to this world empty handed? I nervously hugged Nicole, told her I loved her for being so awesome, and said I would run to the store and be right back.

You know how dads act when their wives are about to go through immense pain and hard work to bring their children into this world, and they can do NOTHING to help? I know how that feels now. I went to the store and bought flowers for the birth mom, Nicole, and the doctor! If they would have had packs of blue bubble gum cigars I would have bought those too and handed them out to strangers.

I arrived back at the hospital, flowers in hand, ready to meet my birth mom. Or at least as ready as I would ever be. I walked in to the room, set down the flowers, and went straight to my job of making sure she was as comfortable as possible. We were immediately at ease with each other.
 
She was in a good bit of discomfort (obviously), so we talked through the pain. I got her more ice chips, requested some pain meds, adjusted her pillows and our relationship was off and running. It soon became clear to me that I was the only one that would be there that day for her. To hold her hair back when she got sick. To make sure she was a comfortable as possible. To do the things that family is supposed to do for you when you deliver a baby. So, we became family.

Around 7pm it was finally GO TIME. The birth mom made it clear that she wanted me to stay in the room with her while she delivered Jojo, and I was honored. I was able to pray with her right before the staff flooded into the room for the delivery. We took deep breaths, pushed, and counted to 10 and did it again and again until sweet Josiah made his way into the world!

The moment he was born, I literally fell into my sweet birth mother and we hugged and we both cried. The feeling of gratitude to her, gratefulness to God for a safe delivery, and awe that I was standing right where God wanted me was overwhelming.

June 20, 2013 7:22pm 5lbs 4oz 18.25 inches

Raising three children on my own (whether one has special needs or not) is not easy, but I have learned that easier is not always better! I am blessed to have the support of my parents, my church and many friends who are walking alongside me on this journey.

My hope is that my story will give another family the confidence they need to take that first step and pursue a child through foster care or adoption. So many children are still waiting for their forever families both in the US and all over the world! If God can provide the funds and move the mountains for me, He can do it for you too…..He just needs your “yes”!

Thanks for letting me share,