The Blue Elephant in the Room

I vividly remember one of the first times I saw a child on a leash. It was at West Park Mall and I judged those parents hard. I was all “Kids are Humans, Not Pets!”. Most likely I said more than once that I would “never” put my kid on a leash. Clearly I was not yet a parent of a two-year-old boy that had finally mastered the arts of both walking and completely ignoring the words “no” and “stop”.

It only took one evening consisting of a trip to Target where he refused to sit in the cart and my poor Dad had to chase him all over the store followed by dinner at Culver’s where he refused to stay in the high chair and walked around begging food from strangers for me to start trying to figure out how to not take him anywhere ever again. But when I ran into a fellow mom from my hometown who had her young son safely strapped into a backpack harness with a leash, I knew I had found the answer to my delimma.

So lo and behold a few weeks later Santa brought Moses a super cute blue elephant backpack with a nice leash attached that had gotten good reviews on Amazon. Last week I finally got to try it out.

Because of the flat feet and low muscle tone that came with having Down syndrome, Moses gets to wear orthotics to help stabilize his feet and make sure that he learns to walk properly. No big deal, right. Actually, it’s not UNTIL trying to find shoes that will fit. I’ll put trying to find shoes in a toddler size 6 or 6.5 right up there with going to the dentist or gynecologist. Necessary but not a whole lot of fun. (I will say that there are some really cool shoes for kids with braces in a size 10 or above. Hopefully he’ll have graduated to inserts by then, but if not, then at least I have hope that it won’t be so hard to find shoes for him.)

One of the tricks I learned from the last set of braces was to get shoes in extra-wide and take the insoles out. Another thing I learned is that shoes with a velcro strap make putting the shoes on a lot easier and quicker as opposed to shoes that tie. And since Moses has proved to be quite apt at sliding his foot right out of both the shoes and braces, easy and quick are must-have features. I have also learned that the velcro strap on most toddler extra-wide shoes are not long enough to accommodate chubby toddler feet encased in braces even after taking the insole out. Fun facts, huh?!

After searching online and coming up short, I decided to just take him to our local Shoe Carnival because I was told it carried extra-wide shoes that should work. Josie was at a basketball game with Tyson, so I also saw it as the perfect opportunity to use the leash. I was so optimistic that it was going to go well that I even thought we might go to Target, too! So when we got to the shoe store, I was practically whistling as I strapped him into his super cute blue elephant backpack and carried him from the van to the store. Once inside, a friendly store associate asked if I needed help finding anything, and I told her I was looking for extra-wide toddler shoes. She said would show me what they had, so I put Moses down, held on tightly to the leash, and off we went.

It started off well as we followed the associate, Moses on his leash, me holding on to it. When we got to the section with his size and she started showing me what they had, Moses seemed content to sit down and pull shoes and boxes off the shelf. Now, I know that this doesn’t necessarily sound like a good thing, but he was staying in one place and I 100% planned to clean up his mess so it was absolutely a good thing. I totally felt like I was winning.

That good thing lasted about one whole minute, which was how long it took for Moses to lose interest in the shoes and want to walk around. As the associate was showing me the shoes that came in wide (not extra-wide), Moses walked as far as his leash would let him. And then he stopped. And he was not happy.

That’s when it got fun.

There I was, trying to pay attention to what the sales associate was telling me and showing me while also holding on to the leash that Moses was pulling against with all his might. At this point, I got the feeling that the associate wasn’t quite sure what to think about the situation going on in front of her. Kinda like she was maybe thinking, “Is this okay? Does that little boy have Down syndrome? Can she put him on a leash like that?” And my mental answer to all of that was, “Yes. Yes. And yes.”

As I was trying to explain that I didn’t quite know what size he needed because of the braces (which I had of course forgotten to bring with me), the associate was looking at me like I was an idiot and Moses was really starting to get mad. He started yelling and tried so hard to keep going forward that he ended up falling on his little butt. I couldn’t help but to laugh at him and then proceeded to ask the associate to give me two of the shoes in both a 6 and a 6.5. She gave me a really confused look like she was wondering if I had ever actually bought shoes before, so I said, “I’ll just take them home, try them on him with his braces, and then bring back the ones that don’t fit.” She then helpfully informed me that I could in fact do just that.

She started walking towards the registers and I gave Moses’ leash a little tug and gave a cheery “Let’s go!” His response was to yell at me and try once more to go the opposite way. So I picked him up, carried him to the register where he immediately wanted to be put down. Leash firmly in hand, I put him down and turned my attention to the associate who was helpfully telling me again that I could return any of the shoes that did not fit as long as they had not been worn and I had my receipt because, you know, I’ve never bought shoes before.

After Moses had examined the shoestring display behind us, he was ready to explore the rest of the store. When he felt that dreaded tug of resistance after taking about 6 steps, he surrendered to the leash. As in he flat out laid face down in the middle of the floor and just gave up. You might imagine the look of confusion/concern on the poor sales associate’s face when I just laughed at him and said, “Life is hard, isn’t it, bud?” When I swiped my credit card to pay for the shoes that were undoubtedly all going to be returned (because they were wides, not extra-wides), part of me wondered if the information from it was going to used to report me to Child Protective Services.

I got my bag and receipt, put Moses on his feet, and let him lead the way to the door. Before picking him up to go back out to the van, I stopped to take a picture of him on his leash to send to my friends.

Here’s the thing, I could’ve walked out of there feeling frustrated and discouraged at the lack of understanding that wide and extra-wide are not the same or at the feeling that I was being judged for having a child on a leash – a child with Down syndrome at that. But what good would that do me? Or Moses? None at all.

So instead I just laughed as we drove right past Target to go home. I laughed at that poor sales associate’s reaction to the whole thing. I laughed at Moses’ reaction to his leash. I laughed at my own reaction to it all.

Life hands us all kinds of ups and downs, and there are some that we can and should be frustrated or discouraged or sad or mad about. But there are so many that we can just shake our heads and laugh at.

I’m thankful for the laugh I got out of that highly unsuccessful trip to the shoe store and the laughs I’ve gotten out of telling others about it. And I hope that maybe that most helpful sales associate saw that a two-year-old child with Down syndrome reacts pretty much just like any two-year-old child does when he doesn’t get his way. I hope that one day she has a two-year-old boy and thinks of us when she thinks of buying a leash for him. And I hope she learns that wide shoes are not the same as extra-wide.

Sugar:Spice

“Sugar and spice and everything nice, that’s what little girls are made of.” 

What this particular nursery rhyme fails to mention is that the ratio of sugar to spice is not necessarily even. In Josie’s case, the amount of spice seems to be greater than the sugar, and not in a pleasing to the palate kind of way.

A few weeks ago, after multiple meltdowns and power struggles with my darling 4-year-old dictator wannabe daughter, I called my best friend. I told her about the series of trials Josie and I had been through because of her strong dislike of not getting her way and her current style of expressing it through crying and screaming and stomping. 

I told her that I thought I was mentally and emotionally prepared to hear “I don’t love you”, “You’re not a good mom”, and/or “I hate you” come out of her mouth, because she’s been informing me that I’m not nice for some time now. (My personal favorite is when she tells me, “I’m so mad to you right now.”) When she says those things, I take it as a compliment that I’m doing a good job in being a mom. But when she actually said/screamed “I don’t love you” in a fit of rage (I wouldn’t let her eat an entire ginormous cupcake because it was getting too close to bedtime…I know, I’m horrible), it cut right through the ol’ mom heart.

After listening to me unload about my daughter’s behavior, my best friend told me that while it’s hard right now, this strong-willed, stubborn, argumentative behavior is going to lead her to be a confident and assertive woman in the end. Hearing this wasn’t new to me because we’ve talked about countless times before with her own oldest daughter as well as with Josie. 

But this time it really didn’t help me to feel better. This is what I text my best friend the next morning:

“…I want her to be kind. I want kindness and compassion and respect to be the traits that are ingrained in her. It’s not to say I want her to be timid and a doormat and submissive…I want her to be confident and assertive but know how to be those things with kindness, compassion, and respect. And I’m seeing that the struggle to guide her to that path is going to be harder than I thought.”

In her wisdom, she reminded me that this whole parenting thing is a marathon, not a sprint, and I’ll get glimmers that I’m succeeding every now and then along the way.

The thing is, Josie really is kind and sweet and compassionate. She truly is. It’s just that she typically shows that side of her to others – Moses, friends, cousins, strangers. I usually get the other side, and that’s hard on me. In fact, it gets downright exhausting. 

Yesterday I was having a hard time after a long week (okay, weeks) and started crying. As I sat on the bed crying, she came over and rubbed my arm and said, “It’s okay, Mom.” When I started crying even harder because I felt so bad that my 4-year-old was having to console me, she left the room and came back carrying one of her favorite blankets. She gently put it around my shoulders and said, “There. That’ll help you feel better.” Then she found a book and some pictures of her to help me feel better, too.

That’s my daughter. She tests my patience, doesn’t listen, and defies me on a regular basis. And when I need it the most, she gives me the gift of a glimmer of her kindness and compassion directed at me. Maybe her ratio of sugar to spice is pretty even after all.

Oh, and remember that cupcake? When she tried it the next day, she didn’t even like it. 

Way Better Than Okay

Imagine walking into a room full of mothers of young children with Down syndrome. Imagine what it’s like to listen to these women share stories of their babies and toddlers with Down syndrome. Do you imagine a room that is quiet and somber? Do you picture them sadly commiserating with one another about the burden of raising a child with Down syndrome? Trying to one-up each other about the daily trials and tribulations they face? Or perhaps they’re consoling one another and wiping away their tears together?

Go ahead and imagine that scene.

Now imagine the complete opposite. Imagine a room full of mothers that are smiling and laughing and sharing in one another’s joys of having a child with Down syndrome. Imagine a mother of a 2-year-old offering congratulations and support to a mother of a 2-month-old. Imagine a room full of mothers exuding happiness and pride and confidence.

That’s the room I got to spend a couple of precious hours in on Saturday. I got to meet new mothers and see a couple of the friendly faces I’ve met over the past 2 years since I joined the Moms Of Children with Down Syndrome Club. I got to watch videos that highlight the beauty that comes from a person living with an extra chromosome. I got to listen to to the testimonies of other parents who have been in this club much longer than I have and feel excited and hopeful about the future that awaits Moses and our family.

At the beginning of the luncheon, a video was shown that centered around two families – one with an older son with Down syndrome, the other with a 3-year-old boy with Down syndrome. It was a wonderful, inspiring video to watch, but the end is what hit me the hardest. The father of the older boy was saying that “if he were to tell a new father who has a child with Down syndrome one thing…” At that point, he got choked up and couldn’t continue talking. His wife said, “You would tell them that it’s going to be okay.” The man shook his head and finally said, “No, I would tell them that it’s going to be way better than okay. It’s going to be amazing.” Cue the tears!!!! I don’t even have 2 years under my belt, but this resonated so much with me because it’s just so true. This journey with Moses has brought way more smiles, laughs, and joy than I could have ever imagined.

Next, we got to hear from two mothers who have older children. One has a son who is 17, and the other has a daughter that is 21 or 22. Both had very similar messages of how important it is for us to remember that our children are going to live up to our expectations. If we set low expectations and limitations on what they should and can do, then that’s what they’re most likely going to accomplish. I think it’s easy for any parent to think that their children isn’t ready for this thing or the other, or that there are certain dreams and aspirations that are just out of reach. It’s scary to even think about watching our children fail or get hurt, and it’s even worse to actually watch it happen. But failing and even falling down every once in a while is what lead to the growth that we ultimately want for our children. That includes children with Down syndrome. It might take longer and success may look different for Moses and other children with an extra chromosome, but it’s not up to me to define what success is for him. That’s up to him, and it’s my job to be there to help and encourage him along the way.

As I was about to leave, I saw the two mothers that spoke talking to another woman. I walked over and thanked them for sharing their stories and insights. One of them wrapped me in a big hug and said, “Welcome to the club!” I laughed and told her that I was almost a 2-year member but thanked her all the same. That led to a conversation with the woman they had been talking to who really is a brand-new member to our club. She has a 2-month-old and said she almost didn’t come. I don’t know if my reaction surprised her, but I said to her, “Oooh!!! You really are a brand new member to our club! Welcome and congratulations!!! You are in for more blessings than you could’ve imagined.” We then had a great conversation (in my opinion) about her family which includes two other daughters that she wants to do right by. I shared what had worked for me with Josie, congratulated her again, and wished her the very best.

I walked out of there really, truly believing in some of the phrases I’ve heard over the past 2 years. I absolutely am one of the lucky few parents chosen to have a child with Down syndrome. I absolutely did hit the lottery when God gave me a child that got an extra chromosome. My life is absolutely going to be better with Moses in it than it could have ever been without him.

For the rest of the day and on the drive back home, I replayed in my mind the videos I had seen, the stories I had heard, and the conversations I had had. In addition to what I’ve already mentioned, I also kept going back to what two other mothers in attendance had shared. One talked about how after the birth of her baby, her OB/GYN stayed with her for 10-15 minutes and had told her that she had never gotten to be part of such a special birth. The other told of a day she went shopping with a friend who carried around the mom’s daughter  through one of the stores. Her friend commented that the people at that store were just so friendly. Then it dawned on her that it wasn’t so much her that they were being friendly to, it was the special child she was carrying. The mom said that her friend told her that it was as if people were just drawn to the little girl.

When I put all of these things together, I have to ask myself, “When is finding out that a baby has Down syndrome going to be something to celebrate? When will doctors finally give the results of genetic testing to an expecting mother and say, ‘Congratulations! Your baby has an extra copy of the 21st chromosome. There are some things that we need to keep a close eye on during your pregnancy and possibly be ready to address when he or she is born, but for right now, just enjoy the news that you hit the genetic lottery!’ When will parents be able to share the news that their child has Down syndrome with a smile on their face and pride in their voice?” Because seriously, having a child with Down syndrome is life-changing in all the best ways. You get to experience a life that is full of love and joy and celebration. Like the dad in the video said, it’s way better than okay…it’s AMAZING!!!

 

Your Attention, Please

sweetjosie.jpg[Note: If you haven’t read the book Wonder by R.J. Palacio or seen the movie, I strongly urge you to fix that.]

In the book and movie Wonder, Auggie’s sister Via feels lost in the shuffle of his world. Seeing her struggle with loving her brother and wanting to support him but at the same time feeling angry, hurt, and resentful of the her anger and hurt of most of everyone’s attention being on him and his needs. Yes, Auggie has a medical condition that has made things different and harder for him since the moment he was born. Yes, Auggie is embarking on a very new, challenging adventure in going to school. But that doesn’t mean that his sister is immune to the struggles that everyday life brings. She still wants and needs attention from her parents and friends.

When I was watching the movie a few months ago and it got to the part where Via and her mom hug after her performance in the school play, I lost it. As a mom, I know that one child is not intentionally given less attention than another. But it happens.

When I was pregnant with Moses, I remember coming across a blog written by a mother who had two children, but the blog was only about one of them. Perhaps it’s due to my own middle-child syndrome (it’s a real thing, just ask me), but I am very sensitive to children being left out. Do I think that mother who writes that blog loves her other child any less than the one that the blog is about? No. As a mom of two children and being one of three children in my own family, I know good and well that a mother, or father, does not love any child more than another. A parent may love each of her children differently, but the depth of love is the same for each child.

So when I saw that blog that focused only on the child with Down syndrome, it really struck a nerve with me. It also got me thinking about how I would balance having not just two children, but one that has typical needs and one that has different, special needs. How would I make sure that Josie didn’t get lost in the shuffle of this new world we were about to enter? 

As with many other things in life, it’s easier to place expectations and blame on others. That’s what I have been doing for almost 19 months now – expecting others to help me find that balance by asking about Josie and commenting on what an amazing, special little girl she is. Thankfully, I can honestly say that she really does get as much attention from others as Moses does. My family and friends especially do an amazing job of loving on her as much as they do Moses. Even so, there have been times I’ve found myself getting upset when I feel like she’s getting less attention from others. For example, when I share a picture or story of her on Instagram or Facebook and it doesn’t get as many likes or comments as one of Moses (I’m seriously rolling my eyes at myself as I type this, but at the same time, this is the reality of the world of social media), I get upset because, in my humble motherly opinion, she deserves just as much love from the social media world as him (because she does.)

But then the other night, it finally hit me that it’s not at all about the attention she gets from others. No, it’s all about the attention she gets from me.

In our daily life, it’s really not much of a struggle to give Josie enough attention because, quite frankly, she has a big personality that demands attention. Sometimes very loudly, sometimes very inappropriately. One night, she looked at me in a very disapproving way and told me I needed to “drop that attitude” after I told her to eat her supper. She can make us all laugh with her singing, dancing, stories, and sass.

It’s more of my mental and emotional attention that I fear she’s getting short-changed in, much like Via did in Wonder. For me, one of the things I’ve learned about myself is that it is easy to get caught up in that world of Down syndrome because, well, it’s different. I think about Moses and how to navigate his unique world a lot. There are a ton of unknowns and uncertainties. With Josie, there are definitely unknowns and uncertainties, but they have been and will likely continue to be fairly “typical” and, quite frankly, easier to deal with. I didn’t really have to teach her how to crawl or pull herself up to stand. I didn’t have to wonder when she would start talking because it seems like she figured it out on her own one day and hasn’t stopped since. I don’t do extra reading on how to survive a threenager or prep myself for the roller coaster a 4-year-old will likely bring (although I probably should). With her, there is a lot of “typical” trial and error, in part because she’s my firstborn and I have no clue what I’m doing, but I don’t constantly second-guess myself if I’m doing everything I can to help her reach her fullest potential. I don’t worry (too much) that my errors will prevent her from enjoying many achievements and accomplishments in life. I know that girl of mine will be successful despite me. I just pray that she either forgets my mistakes or is able to find a good counselor to help her work through how I screwed her up because I gave more attention to her little brother than to her.

Since Moses was born, he has received more of my attention whether it be because of additional doctors visits, scheduling weekly therapies, health issues and having surgery, or simply because he’s super cute. With Moses, there there is more reading and learning because I feel like there is less room for trial and error. I regularly second-guess myself about if I’m doing all I can to help him reach his fullest potential. The last thing I ever want is for him to be more at a disadvantage that he may already be at because he does have that extra chromosome that causes physical and intellectual differences and challenges. There is the mental and emotional struggle to find the balance between recognizing he is different because of Down syndrome and not letting it define him.

The conclusion I’ve come to is that I don’t want to use Down syndrome as an excuse for Josie getting less of my attention, and that’s what it feels like I’ve been doing. The last thing I ever want is for her to think that she’s less important, less special, less unique than her brother. Because she’s just as important, just as special, and just as unique as he is. In the end, I know that my children need different things from me because they are their own different, unique human beings. I just pray that I can navigate both of their worlds successfully and give them both the attention and love they need and deserve.