Monday, January 18, 2016

Wednesday Is My New Monday

Already 3 weeks into the the new year and I'm still working on my New Year's post. Pretty typical for a procrasticator like myself but it just goes to show that time doesn't wait for anybody. The New Year brings hope for many people but I still like Mondays for the same reason. Mondays just scream "new beginnings" and "I'll start on Monday" has become one of my many mantras. Every Monday I wake up ready to tackle my world with great enthusiasm, new aspirations, old aspirations renewed, and restored hope!  Mondays and the New Year are like a fresh jar of cookie butter both waiting for people like me to dig in! And every New Year and Monday I am hopeful that "this" time I will accomplish whatever it is that I want to. Clean eating, no sugar, no fast food, more exercise (who am I kidding you have to exercise even a little to do more), more water intake, less shouting, more organization, less social media, leave my phone plugged in while the kids are home and awake, keep up with the laundry, play with my kids, spend more time together enjoying the great outdoors, read, read scriptures daily, study Sunday school lessons before Sunday comes, daily morning and night prayers, daily morning and night family prayers where were actually kneel and pray from the heart, daily couples prayer, weekly FHE (Family Home Evening), 100% visiting teaching, wake up early and by that I mean wake up before my kids do (don't get me wrong, I love that my boys are responsible and can get themselves up, but I really should be up to greet them), shower first thing, prepare kids lunches every day, prepare breakfast for all every day, make a meal plan and prepare healthy dinners every day and have it ready by 5:30 so we can all eat together before we go separate ways for activities and sports, more temple attendance (again it's not more when it's none at all), make Saturday a special day that we use to get ready for Sunday, like clipping nails, preparing "the" bag, and ironing clothes so we're not scrambling on Sunday, get to church on time even though I don't have my husband home to help us get out the door, keep the house tidy by following a "cleaning schedule", wash the car often, keep the car tidy, vaccum and wipe the interior down monthly, sell/list all of the stuff and handbags I have to sell on Ebay/KSL, stop buying more stuff and handbags that I hope to sell on Ebay/KSL, stop buying clothes for my children (they have enough), stop buying clothes for myself especially when it's not even the right size (wishful size 6 thinking), buy things that we need not things that we want, declutter, take parenting classes to help me be the mom who I want to be, spend quality time with those people who truly care about me, stop saying "we should get together" and just commit to a date, stop chasing people who have no time or interest in my life (sounds harsh but at some point you have to accept that some friendships will just never be), have families and couples over for dinner, schedule more one on one dates with the kids and continue having date night every weekend as a couple, plan monthly dinners with my 1989 forever friends, plan monthly dinners with my UT21 sistas, attend my RS enrichment meetings and invite a friend or neighbor, do acts of service for our neighbors and ward members, write thank you's and notes when inspired and actually mail them, send out birthday cards to every member of our family, make flash cards and teach Liam and Sara how to read, cut out felt stories (I've only owned them since Cole was a baby, 14 years ago), refinish the corner shelf in our TV room, organize family photos and create videos so we can enjoy them, delete pictures especially when there are 20 of the same pose (if I wouldn't post it or print it, delete it), blog more as it is my only source of journaling besides Instagram and Facebook, order chat books and blog books to bind our memories, write the children's books I've always wanted to write, record an album for my children, get family pictures printed and framed to create the family wall again (it's only been 2 years since we painted), stick with a nightly routine so we can have time for stories and chit chat instead of tears and harsh words and a tone that we always regret, stop wishing for bedtime and wishing the days away, count to 10 or step away when confronted with frustrating moments, or just flat our keep my cool, compliment my husband more, reach for my husband more, go to bed at a decent hour, stop shopping at the dreaded W@!!m@r+ because it gives me great anxiety EVERY single time I step foot in it, stop shopping at my beloved store +@rg3+ because I always walk away with things I don't need (just because it's on sale doesn't mean I'm saving money if I don't need it), and the list goes on and on.

So yes it's true that Mondays and the New Year brings great enthusiasm, new aspirations, and restored  hope, but with a list this long there is no way I can walk or even sprint away from my week and 2016 feeling accomplished. Sure I may be able to dig into this fresh jar of cookie butter, but I am sure to get stuck! And ain't nobody got time for that! Although I have a lot of lofty aspirations, many of them valid and worthy, I need to be kind and realistic to myself. I can be aware of the changes I need to make and strive for 100% participation, but I need to understand that no one is keeping an inventory but me. And if there are others taking inventory of my life then ain't nobody got time for them! I just want to be happy and if happiness comes from me eating no sugar or spending more time with my family, then I shall eat no sugar and spend more time with my family. Making lists, creating vision boards, setting goals are important, I get it. Sometimes even creating the list itself makes me feel accomplished. But a list this long only contradicts my intention of making the list. It's supposed to give me purpose and hope but instead it makes me feel overwhelmed and hopeless. Yes there are things that are a given, things that I should be doing anyway but if I don't follow a cleaning schedule is it really going to be a problem? Or if I do lose my cool does it mean that I am any less of a mother? No. It just means that I simply can't do it all. It's human nature to want what we don't have or feel the need to obtain things that we "think" we need but at some point for our own sanity it has to be enough! So for now I will focus on the things that I am doing and not on the things that I should be doing. I will wish for more days and fill them with satisfaction rather than disappointment because I am enough. I will go to bed each night knowing that I gave it my all! If I can strive to be a better version of me today than I was yesterday then it should be enough. And even then if I am worse today than I was yesterday then there's always tomorrow or Wednesday. That's it, I'll start on Wednesday because Wednesday is my new Monday!!

My name is Jodi and I am enough! 

Monday, November 30, 2015

My Quiet Heart

"My heart will be quiet now" is a simple yet beautiful phrase. They are the words written by someone who has loved and lost. But words that also describe the peace they felt when the love they lost was found. These are the words written by Sara's biological mother when she first learned that her daughter was rescued. This was her reply to a letter I wrote letting her know we had adopted Sara and that she is loved.

I had learned in our first meeting at the orphanage that Sara's birth mom had suffered depression after she chose to walk away from the hospital, leaving Sara behind. I cannot even imagine her pain and that is why at that very moment I knew I needed to find her. I knew her heart ached but I felt that I could help ease her pain if I could let her know Sara was safe. I had hoped that this knowledge would give her peace so she could move forward and find happiness again. I wasn't aware of the circumstances other than she chose to not bring her baby home because she was born with Down syndrome. But the details or circumstances didn't matter. What mattered was that this woman needed to know that her daughter was chosen, cherished, and loved.

In December of 2012, just a 2 months after Sara came home, I sent this message to a man who I believed was Sara's biological father. (I had searched for her mother but was unsure if I had found the right person, but was positively sure that this man was her father.)

Hello, I have decided to send you this message in hopes that you will receive it with comfort. Please understand that I only decided to write it because as a mother, I would want the same. We live in America and just recently adopted a baby girl from Kiev, Ukraine. I believe that you are this baby girl’s biological father. She was born on November 28, 2011. She was born with Down syndrome. If this is correct and you are indeed her biological father, I just wanted to let you know that your daughter was chosen to be part of our family. She is very loved and cherished and is doing well. We have four other children who simply love and adore her. I am not sure how this message will be received, but hopefully it will give you peace of mind. Like I said, as a mother, I would like to know that everything turned out the way it was meant to be. I do not expect you to respond but I am happy to answer questions you may have. I hope I have not offended you in any way and if so, I apologize. My intention was not to cause you grief but to let you know that your daughter now has a chance to blossom and bloom! Take care!

For days, then months I'd check to see if he had "seen" or read the message but he never did. So almost a year later I decided to send the woman who I believed was Sara's biological mother a similar message. I didn't want to frighten a complete stranger especially with the news of a child, but if she was the one she had to know. 4 days later I got a reply. She confirmed that she and her husband were indeed the biological parents of "the girl". She thanked me for being understanding and was glad that "she" had a family. She said "I am sure that you will give her what unfortunately here we won't be able to give. The decision to give her up was very hard but in our country we are not able to raise this child." Then she wrote "My heart will be quiet now." What beautiful words to hear especially knowing that this was my purpose in reaching out to her, to quiet her heart.

Finding each other has been a blessing for the both of us. We have kept in touch as we share news, stories, and photos. The first time I asked if she would like to see photos she said "Thank you that you are giving the opportunity to participate in her life. I am happy to see the photos, I have long wanted to ask you but I was afraid that you'd be against it." I am happy to share Sara's milestones and life's happenings as it brings me great joy. Sara is pure joy and her biological mother deserves to see her happy. She often will say "Thank you for the minutes of happiness which you give me."

I still don't have all the details of her birth or the circumstances behind their decision. I will never be angry at their decision because I feel it all happened as it was meant to. It may be hard for many to even comprehend how they could have left her if they loved her, but they did, and they do. Unless we've been there we cannot judge. I am just grateful that Sara's parents gave her life. I am grateful that we have the opportunity to give her a life. I am grateful that she blesses our lives and gives us another reason to live. It's our very own circle of life.

3 years ago I left a piece of my heart in Ukraine. Since then I have realized that I left it so Sara's mom could use it piece hers back together. Although I am sure her heart isn't completely healed, at least she knows that the love she lost has been found. At least I can provide her with "minutes of happiness". She often says"Sara is always in my heart, every minute." And "Part of my heart is always near her." This mother's heart will never be the same but at least it can be quiet for now. Shortly after we met Sara I wrote this which describes my heart. It too will never be the same.
My heart breaks, my heart heals. 
My heart loves, my heart feels. 
With every child it grows a little more because that is what my heart is for.

"I never cease to marvel at you and cannot stop saying thank you for all that you do for Sara and thus for me. For me it is very important."

It is important for me to do what I can for the mother who gave Sara life. And I will ever cease to marvel at His glorious plan. He is no doubt aware of all of His children! He loves each and every one of us and with that knowledge my heart will be quiet now too.


Friday, November 27, 2015

Love Doesn't Count Chromosomes

5 years ago today our family was changed forever. A 27 day old day baby boy was being discharged from the hospital and we were the family who was chosen to bring him home. When we received the phone call only a few days earlier, notifying us of his needs, we were also given a long list of his medical concerns and issues. Not knowing what many of these issues even meant we still said yes knowing that all he needed was love and a home and we could provide both. With no intention of adopting (although I had a sneaky suspicion he might be the "one") we chose to be his family for a few weeks, a few months or whatever was meant to be. We knew that we could love this little boy and help him as he started his journey of life.

On November 27, 2010 we arrived at the hospital with a borrowed car seat, a worn, handmade, patchwork blanket, a dinosaur sleeper and a beanie. A couple of hours later we left the hospital with a new baby strapped in the borrowed car seat, wrapped in the worn blanket, and wearing the sleeper and beanie. We were scared proud parents for the fourth time and couldn't wait to introduce him to our other 3. The moment we walked in the door of our home with our tiny 5 lb. baby everyone was beaming with excitement. Kate immediately became our "Kate Nightingale" and the boys were so excited to meet their little brother. (Beck kept commenting how cute he was.) My brother Jason, my sister in law Jane, Josie and Chase were also there to greet us as they were the ones holding the fort down until we got home. Then later my parents came to meet our newest addition. There was a lot of love that filled our home that night as we all held, fed, and adored our new baby. It was a privilege to have this little boy in our home and there was a sense of gratification knowing that we were making a difference in this tiny, medically fragile, baby boy's life.

Fast forward to Sept. 2011 when I had to stand in front of a judge and explain the care that we had given this boy so far in the 10 months we had him. I had to keep track of every appointment and mileage for each appointment so it wasn't hard to report what I had recorded in my handy dandy notebook. Including his early intervention appointments, he had been to over 100 appointments in 10 months. Between MRI's,  X-rays, sweat chloride tests, blood draws, cardiology, endocrinology, urology, optometry appointments, and every thing in between, we were busy! Many would say that my hands were full, but I would reply "That's what my hands are for." I was happy to be the one who fought for and stood by our little warrior.

Since the beginning this baby endured a lot. For the first 27 days of his life he fought until he was strong enough to breathe on his own and he overcame addiction. He was also born with many different anomalies and many times his pediatrician and specialists would say he probably has a syndrome that we just don't know about. Now fast forward to March 2012. After meeting with a geneticist it was determined that he should have chromosome testing to figure out what "syndrome" he might have. By now he received most of his nutrition via a feeding tube because he lost interest in eating. So because of this, his slow growth patterns, developmental delays, and all of the other things that this little boy had, a chromosome test was a sure way to find out what was going on. We were excited to finally get answers. On April 27th we finalized the adoption of our little man. Liam became an official member of the Lutkin  family. Which also meant that he was now on our insurance plan. But unfortunately our insurance denied the chromosome test stating that it was not medically necessary.

Although we were disappointed that the testing was denied we were hopeful that one day we would know exactly what to except and have a proper diagnosis. So life continued and so did the appointments and surgeries. Almost 2 1/2 years later in the summer/fall of 2014 we met with the geneticist again hoping that our insurance would approve the testing this time around. And even though a proper diagnosis wasn't going to change the care that he was receiving, we just wanted to be prepared. We wanted to know why our little man had so many struggles and what his future looked like. There had to be a reason and not just coincidence that he has so many anomalies and health issues. There had to be a "syndrome" that linked it all together. Even the geneticist was certain that there was enough to support that it was a medical necessity and was willing to appeal the decision if it was denied. So we waited, but once again it was denied. Feeling confident that our doctor would fight for us we didn't worry and in the early months of 2015, our appeal was granted and soon we would know if our fun size Liam had a chromosome abnormality. It was a simple test but it still took months for us to get the results. I figured it would take time but after a while I was getting antsy. Then I was disappointed to hear that the results had been available for a while but someone forgot to follow up with me. They were quick to squeeze us in knowing they had made a mistake. At last we were finally going to meet with the doctor to get answers. Alleluia!!

On June 16th, 2015 we arrived at the hospital anxious, excited and relieved that we were finally at this point. We approached the counter to check in and I could tell that the receptionist was a bit confused. Minutes later after the receptionist had stepped away, he returned to the counter to let us know there had been a mistake. The doctor who we were meeting was out of the country. They had managed to call and reschedule all of his appointments except ours. Go figure! I was so disappointed, again. Even though it was ONLY 3 years since we had started this process, it felt like we had waited our whole lives to meet with this doctor who finally had the results. I was not OK to reschedule and requested that somebody else tell us the results. I didn't care if the receptionist read us the results. I just knew that we weren't leaving until we had answers. Early on in the process a certain syndrome was mentioned as a possibility. I just needed to know that he did or didn't have that one or if there was something else. Honestly I was hoping for the something else because the "possibility" frightened me. But again it didn't matter as long as I knew what to expect of Liam's future.

After many apologies and more waiting we were finally taken back to a room and met with one of the doctors assistants. She was able to tell us that Liam did indeed have a chromosome abnormality. He has 16p13.11 microdeletion syndrome. In layman's terms, part of Liam's 16th chromosome is missing. It is such a rare deletion that it doesn't even have a proper name. It is named after the location of the missing piece. There are not many studies or information on this deletion but what has been discovered makes perfect sense and explains Liam's stuff. (Feeding difficulties, short stature, small head, tiny facial features, tiny ears and ear canals, his googlie eyes pre-surgery, hypospadias, hypotonia, torticollis, developmental delays, speech and language delays, VSD, behavioral issues, etc.) Pretty much everything that he has dealt with can be linked to this deletion. Not all children or people who have this deletion have all of the anomalies listed, some just have a few. But every single thing listed has been linked to this syndrome and Liam because he is one of a kind, has them all. Seizures is very common with this deletion but for now Liam is clear from any seizure activity. And schizophrenia has also been linked but we will cross that bridge if we need to. (Schizophrenia doesn't usually manifest until the age of early twenties.) Autistic traits or (ASD) autistic spectrum disorder are also linked to this deletion and although Liam doesn't have autism, he does have characteristics that are part of the spectrum like anxiety, OCD, sensory and attention issues.

I walked away from that appointment feeling relieved and grateful. But once I got in my car, I cried like a 27 day old baby. My tears should have been happy tears, but they weren't. Don't get me wrong, I was happy because we could finally see the light at the end of the tunnel but I was sad because sometimes that light seemed dim. It was reassuring to know that his issues weren't just random and made up but I was scared because although we knew, there were still many unknowns. For a moment I kind of wished we hadn't discovered his syndrome because then it would mean that others wouldn't know either. I even asked if it was something we should tell our friends and his educators and have it included in his IEP (Individual Education Plan) or keep it under wraps so people wouldn't treat him differently. You see, I almost felt like if we or other people didn't know then maybe he would be just fine. I thought that with time maybe his issues and struggles would just go away. But at the same time I don't want him to fail before he has a chance to succeed. If his teachers, peers and acquaintances are aware of his needs then together we can create a plan so he can achieve success from the get go. I guess the light just seems dim at times because unlike Sara who has Down syndrome, Liam doesn't look different. Well besides him being so teeny tiny you can't tell that he has been diagnosed with a chromosome deletion. With Sara, it is apparent that she has Ds because she looks the part. She has distinct physical characteristics that are part of her chromosome addition. So if she is having a bad day or acts out or is having a hard time learning, people will be more tolerant and accepting (I hope) and assume it's just because she has Ds. But if Liam acts out or is having a hard time focussing and staying on task, or if he doesn't play well with others because he doesn't know how to play with others, then people may look at him as the "weird" kid who just doesn't have any friends. Or the "gross" kid who likes to put tree bark in his mouth because he needs the sensory input. Because Liam doesn't look different, I fear that others may not be as tolerant with him as they are to Sara. So because of this fear I decided that I do want people to know that he has a deletion of the 16th chromosome so that they will love and accept him for his strengths and weaknesses just as we do. I don't want to keep it under wraps because I want people to know that he is a brilliant little boy who just needs more space to grow. So consider this your PSA (Public Service Announcement). Liam has a deletion of the 16th chromosome. This deletion doesn't define who he is but helps us understand the "Why?" to many of our questions.

Liam has endured so much. (In fact this past week he had his 10th surgery.) And even though there are still many unknowns what we do know will help us prepare for those hard times. We know that Liam is a fighter and will face this challenge with the bravery and courage that he has always possessed. We know the he will succeed because he has already proven that he has the strength to carry on. We know that he we will flourish because of who he is. He is a beautiful, sweet, loving, polite and gentle natured boy. We know that these strengths will outshine his weaknesses and the people in his corner will continue to cheer him on. I feel honored and thank God every day that he entrusted me to be his mom, his cheerleader. I had no idea what to expect when we brought Liam home 5 years ago. I had no idea how long he would stay. But I trusted that God had a plan for him and prayed that I was part of that plan. Thank goodness it was meant to be because I can't imagine my life without Liam! He was the "one" who was missing from our family and I am so happy that we found him! I laugh because once we discovered that Liam was missing part of a chromosome we realized that he and Sara really do complete each other because she has an extra. She makes up for what he lacks and together they make a whole! They are best friends and I am so grateful they have each other. One thing I have learned in having two children with chromosome abnormalities is that love doesn't count chromosomes.



Wednesday, October 1, 2014

Down syndrome ROCKS!

It's that time of year again! October is Down syndrome awareness month! I love someone who has Down syndrome! In fact I love many who have Down syndrome. This video was created by the UDSF (Utah Down Syndrome Foundation) and you will see many of the faces I personally know and love with Ds. Happy October! Happy Down syndrome awareness month! Enjoy this HAPPY video and have a HAPPY day!! By the way, Down syndrome rocks!!!





Tuesday, June 17, 2014

Love Is All You Need

There are many days when I question my parenting skills. Wondering if what I am teaching my children is sinking in. My biggest concern is are my children learning the most important lesson of compassion and love, and especially for each other? Then the Lord has His way of answering me and I am comforted by these glimmers of hope. A few of these tender mercies happened even this past week. They're small but big enough to remind me that I am doing something (even if it's just a smidgen) right. The first stories happened between Beck and Kate. I had asked Beck to do me a favor. I kindly asked, "Beck will you do me a favor and help me with something?" I gave no explanation as to what I needed him to do and I was hoping that he would just say yes, but he actually said no. So I asked Kate the same question and she willingly said yes. After she had picked up the bowls and lids that Sara had thrown on the floor because the child lock was not on the cabinet, I praised her and offered her a piece of gum. (Gum is a huge incentive in our home.) When Beck heard that she got rewarded for her willingness to help, he got upset and told me that had he known gum was involved he would have said yes. I told him that we should do things because we want to help, not because there is a reward. He stormed off crying stating that it wasn't fair. Kate was obviously pleased and couldn't wait until I gave her the gum. While I was handing it to her she said with a smile, "Can I actually have 2 pieces?" I was happy to give her 2 and soon after she walked into the room where Beck was sitting, still crying, and gave him her 2nd piece of gum. Then a couple of days later I looked out the window to check on the kids and I see Beck helping Kate tie the sash to her dress that had become untied.




The next story involved Cole and Beck. Back in February Cole got tickets for his birthday to see OneRepublic in concert. We had purchased 4 lawn seat tickets so told Cole that he could invite anyone he wanted to. He had a few friends in mind but hadn't made any decisions. The concert was fast approaching and I had asked Cole on several occasions if he had decided who he was going to take. Finally with only a few days left I asked him again and to my surprise he said "Beck". As you can imagine Beck was thrilled and on Saturday, Mark and I and Cole and Beck went to see OneRepublic in concert along with American Authors and The Script. It was a great concert, great night, great fun!! ( I kept asking Beck if he was enjoying his first concert and he kept reminding me that this wasn't his first, WWE Raw was. In fact he said he liked watching wrestling more than the concert.) (Cole reminded me that this was his third concert. The Wiggles was his first and then Bruno Mars.)





The last stories involve Liam and Sara. Ever since we brought Sara home, Liam has had typical sibling rivalry issues with her. He didn't watch my belly grow or have time to prepare for a new baby. And he was too young to understand that we were adopting. All he knew was one day he was the baby one day he wasn't. Some little girl just showed up and rocked his world. I am constantly telling him "Just let her be!" "Just leave her alone!" He seriously cannot handle when anyone takes notice of Sara or holds her. If she is crying because of him, he is right there pretending to cry to and asking me to "Hold you." He gets jealous of her and is always stealing her thunder. Now with that said, I have witnessed moments of him loving her so I know he does, and this past week he showed me again. Sara was trying really hard to get on the trampoline using the stool below her, but kept falling because she had the stool too close. I waited to see if she would figure it out and move it further away. In the meantime Liam, who was already jumping, came to her aide and tried to pull her onto the tramp. He got off to help her with the stool but by then, she had already figured it out. But at least he made the effort. Then the other night Liam brought me an ice cream bar so I could unwrap it for him. Of course after seeing he had one Sara wanted one too. I had just cleaned her and her chair up from dinner and did not want another sticky chocolate mess to clean up so I told her no. Liam didn't like to see Sara upset so he went to the freezer and got one for her. He handed it to me and said "Sara want ice cream." How could I resist, so they both enjoyed their ice cream bars together. And then just tonight, they were both sitting on one of our recliners watching the iPad. Liam was actually letting her watch it which is rare, he usually turns it away, and then all of the sudden he puts his arm around her neck and gives her a kiss and she kisses him back. (Open mouth of course, but we wouldn't expect anything less from Sara.)






So you see these small but mighty mercies showed me that my kids do love each other and they do care. Kate was able to cheer her brother up by sharing a piece of gum that she had earned. Beck stopped rollerblading for a moment to help Kate with her dress. Cole chose his little brother to go with him to the concert instead of a friend. Liam saw Sara struggling and helped her on the trampoline, he was empathetic and wanted her to enjoy an ice cream bar too, then sealed his love with a kiss. 

We may not be perfect but we have perfect moments of love!! And just like the wind, these perfect moments carry me through each season of my life. These perfect moments let me know that my children are going to be alright. My children are loved and they do love one another and love is all you need!

Friday, March 21, 2014

3/21, Three Twenty One, March 21st



Today is 3/21, World Down syndrome Day. 3/21 represents the triple copy of the 21st chromosome that occurs with Ds. We always knew there was something extra special about Sara when we first saw her picture. Now we know why!! She is extraordinary and is rockin' her extra chromosome. Our lives rock having her in it! We are members of an elite club that brings so much joy and love into our lives!

One of the campaigns that supports World Down syndrome Day is "Rock Your Socks!" To show your support you can wear crazy socks today, tomorrow or even the next day and when someone asks you about your socks you reply, "Someone I know or love has Down syndrome." All of my kids wore crazy socks to school today! My teenager even gave a shout out to his fiends last night via Instagram, asking them to wear crazy socks and I have already had one mom tell me that her son wore them! It makes me so happy to know that we have the support of our friends and neighbors! It was so cute because Kate, although she wanted to support the idea, she was nervous to wear crazy socks because she has a hard time saying "syndrome". She says "Down sisom". She practiced many times before she left this morning and was pretty confident that she could pronounce it correctly if people asked.

Pretty darn cute, 3 chromosomes made out socks! The socks represent that even though they are different, they serve the same purpose.


Kate and Beck sporting their crazy socks and Ds Buddy Walk shirts. Cole had already left for school but was sporting bright pink ones with sparkly snowflakes.

I love how my kids love Sara! Just yesterday Kate said, "I love Sara so much. She is my best sister!" She and Beck still say, "I forget Sara has Down syndrome sometimes." It's because they see her as a lovely little girl who is just part of their gang! She fits in and is no different than them. I love that Cole, anytime there is a reason to support Ds is posting things for his friends to see. Just the other day when it was "Spread the Word to End the Word" Cole posted the cutest pic of Sara, asking his friends to stop using the words "retard" or "retarded". He had several friends who made the pledge to stop. We are pretty blessed and lucky to have Sara in our lives! She is teaching us and others so much, especially how to love and accept. 

This afternoon my friend Kecia and I are going into Beck, Bree, and Mia's 1st grade class to give a small presentation on Ds. Bree is Kecia's biological daughter born with Ds. I refer to her as the gardener in Sara's garden. Throughout our adoption process I compared Sara to a flower who is ready to blossom and bloom. Mia is Kecia's daughter who was also adopted from Ukraine. And it was during their journey to get her that I knew it was something we could, should and would do. So Mia is the one who planted the seed. Sara is the blooming flower and Bree is the master gardener who cares for them all. Anyway, we're going to show a video, talk a little bit about Ds and explain to the children that Bree, Mia, and Sara are "Just Like You". And then leave them with a treat (Hi-Chew) so they will remember to "chews" to love and accept everyone for who they are. Please take a moment to watch this video too! It will be worth 14 minutes of your time, I promise!




This last picture is a collage of many of the beautiful traits and qualities that I LOVE about Sara. Many of these traits are unique to people with Ds. It's part of the Ds package and what a beautiful package it is!




The first is her little hands. People usually have 3 creases in their palm. Most people with Ds have a simian crease, which is a single line that runs across the palm of the hand. Although Sara does have two separate creases, they come together to make one crease and the third crease is non existent. (But did you know that people without Ds can also have a simian crease? In fact Mark does!) 

I LOVE Sara's piggies!! She has a big gap called a "sandal gap" between her big and second toe. It's just a big space between her toes and occurs in approximately 45% of those with Ds. We love and call them her monkey toes/feet and it is very fitting because she climbs and plays like a little monkey! 

I adore Sara's flat bridge between her nose, her low set, little ears with a tiny fold and her silly tongue that sometimes protrudes! All very common with Ds.

I love that Sara is always dancing as if no one is watching! She can wiggle and move, twerk and groove and can sometimes even do the worm! She hears music and can't help herself! It doesn't matter who is watching and she is never embarrassed to shake it! Little did the Pointer Sisters know that they wrote the song "I'm So Excited" just for Sara. "I'm so excited and I just can't hide it. I'm about to lose control and I think I like it!" 

Sara is super flexible. She falls asleep leaning forward, bent in half. She can touch her toes from standing up without bending her knees. She can put her foot in her mouth and it's almost 98% guaranteed that she will eat with her foot resting on her tray. She is Miss Stretch for sure!

Sara loves without end! She loves to give cuddles! She'll back right into your lap and snuggle. And she gives the best kisses ever! We always get a little extra (wet, sloppy and open mouth). Must be the extra chromosome!

Hey eyes, oh her eyes, how they sparkle and shine! She has blushfield spots which are unique to those with Ds. They are white spots or speckles on the Iris of the eye. They make her baby blues have a marble/starry affect. Her eyes are also almond shape meaning that the outer corner of her eyes turn up instead of down. And she has an extra fold of skin on the inner corner of her eyes. All of these traits make her peepers simply stunning! 

When Sara is resting and taking a break she has a unique way to sit. She sits criss cross applesauce with her head titled up. I used to think that it was because she couldn't see but since her eye surgery, her vision is perfect! It's just a Saraism and I love it! 

The middle picture is my absolute favorite and if defines exactly who Sara is! Sara is happy and full of life! She doesn't care when she has crazy, bed head or a messy face! She doesn't care about what she's wearing or how she acts. She is true and genuine and has a zest for life.  (Yes she does cry too, it's not true that people with Ds are always happy.) But she lives each day knowing that she is a light that was once hidden and can now shine! Her smile brightens our days! Her giggle is contagious! Her spirit radiates love! Everything about her is near perfection! Her mission on this earth is to love and be loved and I'm pretty sure she is right on track! 

3/21, World Down syndrome Day is a day to raise awareness about Ds and gives us an opportunity to teach acceptance and love. Please understand that people with Ds are more alike than they are different. Sara is just like you with an extra pinch of sugar! And believe me, she is pretty sweet!!