Helping All Kids Have Loving Homes
season.
Home. Family. So many of us are lucky to have these in our lives. But the sad reality is that there are many children in foster care who have never experienced the joy of a safe, loving and secure home. This holiday season, SAFY of Kentucky is working to raise awareness about the need for foster and adoptive parents in Louisville and throughout our state.
In Louisville, there are 1,232 children in foster care, and of those, around 30 percent have a goal of adoption. Over half of these youth are over the age of 12, and most are part of a sibling group. Though younger children are often adopted relatively quickly, adoption rates drastically decrease for older youth. Nationally, only 5 percent of all children adopted in 2017 were 15-18 years old.
Children enter foster care through no fault of their own, but as unintended victims of the opioid epidemic, parental incarceration, mental illness and more. Many times, children in foster care are able to return to their birth families, and SAFY works to support this transition. When that is not an option, SAFY helps youth find forever families through adoption.
Perhaps you're wondering why raising awareness about fostering and adoption is important to me. Many of you know that Ricky and I have 4 children. I've written very openly before about our journey through secondary infertility and miscarriage. But what you may not know is that after my second miscarriage in 2012, we considered adoption.
As parents of a child with a rare congenital birth defect, I have become painfully aware that babies with special medical needs are often given up at birth. These babies are put into foster care and usually spend years in the system awaiting someone to make them a part of their family. We connected with a few adoption agencies and began the process of researching our options. After inquiring about the adoption process, we also reached out to my husbands employer to make sure that adding another child with complex medical needs would be covered by our insurance.
I spent hours pouring over the photos of these abandoned children - some who were as old as 10 and rapidly approaching aging out of the system. I sobbed for each one that was not chosen and rejoiced for those that found their forever homes. We prayed about it and before we made our decision, I became pregnant. We welcomed baby boy #3 and just a little more than a year later, #4. Needless to say our adoption journey was put on hold indefinitely.
That's not to say that we do not think about it from time to time. My heart continues to ache for all the children who wait for their forever home. I still click the links and read the stories of the kids who seem to have been forgotten and pray all the time for loving families to scoop them up and make them theirs.
Youth in foster care need what all kids deserve – a loving, safe and permanent family who will be there not just for the holidays, but for all life’s milestones. If you have ever considered fostering and/or adoption, I urge you to take that first step. Get involved! I have never heard any families say it wasn't worth it.
In the Middle of Motherhood
The other day, driving down the road in my minivan on the way to the carpool line for my kids elementary school, I scoffed at the lyrics to a pop song on the radio. I pulled to a red light, and quickly grabbed my car tweezers (the ones hidden in that little coin compartment that nobody actually uses for coins)(do they?) and attempted to pluck the hair on my chin that my youngest affectionately calls my "little friend" before abruptly changing the station to something more tolerable. I mean, the beat was catchy, I'll give her that, but there is no way I could ever listen to that trash with my children in the car. Wait, does she really get away with saying that on the radio? I better turn it back on just to check. I mean, my kids aren't in the car yet so who cares? I'm an adult. I can listen to whatever I want to. And...yep, she really does get away with saying that on the radio.
I'm exhausted - going straight from my part-time office job to assume my position in the carpool line. Which, I might add, I have timed perfectly so that I am not all the way at the back. Ain't nobody got time for that. I dig through the pile of paperwork on the passenger seat from my kids backpack that I emptied yesterday (with the intent to address during my time sitting in the carpool line) to search for the 100 calorie bag of almonds and banana I keep on hand for healthy snacking. I didn't find that, but I did find an open bag of half-eaten Cool Ranch Doritos leftover from my son's lunchbox yesterday (was it yesterday? hmmm, oh well, it'll do).
I glance in the back and realize I clearly haven't laid eyes back there in quite some time unless it was to give my arguing kids "the look" through the rear view mirror.
With 4 minutes until dismissal I silently curse myself for being so efficient to have a front-row spot. I have got to find an empty TJMaxx bag up in here to fill with all of last week's car-snacks and junk mail that have accumulated. I mean, I cannot have the principal open the van door to see my vehicle in this state. Not one but two empty DQ cups with various forms of congealed dairy, the coloring page Nolan made me save so he could "finish at home", the stinky soccer cleats, the dirty socks, is that a Tootsie Roll smashed in the floor mat? Dear God, please say it is.
Hopping out of my van I feel slightly exposed being that I'm in plain site of everyone in front of and behind me in carpool. I smile a "look at me, I'm utilizing my time wisely, I'm cleaning my van" look - then quickly realize that everyone is buried in their phone. (Duh). I mean let's be honest I would so much rather be pinning fall decor ideas on Pinterest as well but my fear of the school calling CPS when the car door opens wins out.
Voila - a tidy(ish) car. I Purell my hands and throw it in drive just as the shiny new Infiniti in front me pulls forward. I bet her car is clean, I mutter to myself. The boys jump in the car and I attempt to figure out a way to keep them occupied during the next carpool line for middle school. Shoot I forgot snacks. "It's okay mommy, I'll just have the rest of my Doritos from lunch that I saved", my youngest says. Oops.
35 minutes drags on - we've gone through 3 different movies trying to find one that doesn't glitch from all the scratches - and finally, the bell rings and the pre-pubescent children filter out. They're holding sports bags and instrument cases and cell phones. A few even have books. Gasp! I can't help but notice the length of most of the girls shorts? I mean geez, is that even comfortable? Kids these days.
As we drive home I awkwardly attempt to ask about their day. Careful to be interested but not prying, hoping I'll get more than "fine" or "good" in response. Sometimes I do, sometimes I don't. You never know what it's going to be at any given moment with the older ones.
I leave the radio off in case they actually want to chat (and to avoid hearing that song again) but instead drift off into thought. What I need to do when we get home. What I didn't get done. What's on the agenda for tomorrow. Oh shoot we're out of milk. I guess that means we can't have cereal for dinner (again) tonight. Unless I stop at the store. And who wants to stop at the store with 4 kids in tow? Pizza it is.
Ugh, how did I get here? When I envisioned motherhood I thought it would be magical. Snuggling freshly bathed kids in feety pajamas, home-cooked meals each night to ensure they were eating healthy day in and day out. Designated homework time and family game nights afterwards before I tuck them all in bed with a gentle kiss. Instead I often feel like I can barely get my own shit together let alone be the kind of mom, wife and friend I always wanted to be. This season is so so hard.
In an attempt to understand exactly why I feel so rattled nearly every day, I came to a very important realization. I am straddling two majorly different stages of life. I became a mom 12.5 years ago and seeing as my youngest is 5.5, I have 12.5 years until they are all officially adults.
I am literally in the middle of motherhood.
Maybe this explains the swirl of anxiety that churns in my stomach and my mind on the daily. I am wiping boogers with one hand while simultaneously discussing coming-of-age issues with my pre-teen. I am folding tiny underwear in one stack and having to re-wash t-shirts from another stack when I get a whiff of the underarms (that stank is strong, y'all). The constant shift in how I must parent - a toddler and a teen (almost) can be downright maddening. The tug of war on my heartstrings only adds to the complexity of it all. I watch with awe as my oldest becomes more and more mature, navigating some really heavy topics with composure and heart, and yet as proud as I am to watch him grow, I take one look at my youngest in his character pajamas and pray to God to let him stay little. With my younger 2 I can say I'm most definitely over the snot, but not the snuggles. I'm loving the witty banter I can carry-on with my older ones but not the rapid fire talking back and eye rolls.
I struggle. I think it's fair to say that most moms do. I struggle with feeling adequate. I'm overwhelmed. Anxious. Exhausted. I try to remember to give myself grace. To talk to God. To pray. In the heavier moments I have leaned on a therapist, tried medication, allowed myself to rest.
The truth is, every stage of motherhood is challenging. But finding the joy in each part along the way has always been easy. There is no feeling that will match the minute I locked eyes with my first born and became a mom. At the simple mention of that moment I can still feel it so deep in my core that it is sometimes hard to imagine what it will feel like when my kids are grown and I no longer need to mother in the way I do now.
For now, I'll try to soak up the good that comes with being smack dab in the middle of motherhood - and rather than being anxious about it, I will allow the sentiment of what no longer is to coexist with the excitement of what is to come.
Mommy Makeover Part 3: Post Op and Beyond
Be Sure to Read the Journey from the Start!
It has been 10 months since my surgery and I'm happy to report that I am fully recovered aside from a bit of abdominal muscle tightness. Now that it's all behind me I get asked all the time if I'd recommend having a tummy tuck or breast lift to someone else. I am not going to sugar coat it...it was one of the toughest things I've EVER done from start to finish. And I've birthed 4 babies...just saying. BUT, with that said, I can say without a sliver of doubt that I am so happy I went through with it. Here are just a few of those reasons:
- Body Confidence -- I want to preface this by saying that I am all about loving your body the way it is. I have a child born with physical differences so wanting to change my body while simultaneously telling Aiden (and all my kiddos) that he is perfect the way God made him...you better believe I struggled with feeling like a hypocrite. However I will also always advocate for and support my children doing things that could have a positive impact on their self esteem and confidence should that be something they struggle with. For example, Aiden has an area where the skin grafts on his surgically separated toes have fused back together between his big toe and the one next to it. It prevents him from wearing flip-flops - something most kids don't think twice about being able to do. If he comes to me one day and says he wants to elect to have surgery to address that I would 100% support him.
Having babies destroyed my body. Not just on the outside, but on the inside too. I suffered from repeated umbilical hernias, a severe abdominal muscle separation (that was called "impressive" by more than one surgeon I consulted with!) and the typical loss of elasticity and "perkiness" of breasts that fed 4 babies. Add in there surface things like stretch marks so deep and plenty they looked like an iridescent road map across my midsection and nipples that grew as dark and big as pepperonis and yeah, to say my body was not my most favorite thing would be an understatement.
I mentioned this in Part 1 of this Mommy Makeover journey, but I'll say it again. I really tried to make peace with my body. I did. I prayed about it. I worked out. I changed my diet. I took care of myself. I read all the beautiful quotes and articles from women who embrace their post-baby bodies, who fully accepted the scars left behind after pregnancy as a sacred remembrance of the amazing ability for a woman's body to carry life. And yet, I struggled. Every. Damn. Day. The decision to have surgery was not one made hastily. Nor was it one made out of vanity. I did not choose to do it for anyone else. I couldn't make peace with my body - even though I so desperately wanted to - so instead I learned to make peace with my decision to have this done. For me.
I worried about the results not satisfying that desire to feel confident in my own skin. Going through this whole difficult process brought about an entirely new attitude toward my body that I didn't expect though. That confidence I was looking for? It didn't come as a result of having a tummy tuck or breast lift. I still have dimply thighs, I could stand to lose a few pounds and I hate working out just as much as I did before. The tummy tuck didn't erase every stretch mark from my stomach and even added new scars. And yet I wear a swimsuit and don't think twice about it. I undress in front of my husband without rushing to pull on a robe. I walk around in my room without clothes on - something I NEVER did before, even alone. My confidence comes from being proud of taking such a gigantic leap for myself. Do I still have moments where I think "I'm still not [skinny, toned, pretty] enough?" Sure, I think every woman does. But my confidence wins most of the time. And I call that a huge victory.
- The War with Clothing -- This goes hand in hand with body confidence because not only was I unhappy naked, I was unhappy clothed! I could never find pants that fit me well. I would always have to go up a size so that they would fit in the waist where my "mommy flap" was. They would either be too baggy in the butt or too long or too high waisted. And on top, I NEVER wore a single layer. After 2 umbilical hernia repairs I had what could be compared to a bagel for a belly button. If I attempted to wear a single top you could literally see that bagel through the fabric. Instead, even in sweltering heat, I would wear a cami under every shirt. As an alternative I would purposely look for flowy tops in only certain fabrics so as you can imagine that narrowed down the selection and styles of shirts I could wear. It sucked.
And can we talk for a second about how much money I spent on the many varieties of slimming undergarments? I had an entire basket in my closet dedicated to tank tops, high waisted underwear, butt toning leggings and more ridiculousness that promised to suck in and smooth every lump and bump I was trying to hide. Trying to wiggle and worm my way in to (or out of) any of those in front of my husband was definitely something I avoided at all costs. 😉 I'm happy to say I have not touched that basket since surgery.
- The Physical Impact and the Argument for Medical Necessity -- While a tummy tuck and breast lift are almost always considered cosmetic and elective procedures, most women who have been pregnant who choose to have a tummy tuck are usually wanting to address a physical problem called diastasis recti. I talk more about that in Part 1 and Part 2, but basically the abdominal wall weakens with the pressure of growing a baby causing the muscles on either side to literally separate. Although it sounds painful it usually isn't, but it does complicate things. Without a strong core, one can have constant back pain and poor posture which can cause a host of other consequences as a result. Because those muscles are spread apart, the tissue surrounding the belly button underneath is prone to becoming herniated (and even more susceptible if you have had an umbilical hernia already).
You might think this all makes a pretty good case for having a small portion of this surgery covered by insurance. Especially since recurrent hernias would mean multiple costly surgeries to repair them anyway. Unfortunately that argument is pretty hard to impress upon the mighty insurance companies. If you are considering having a mommy makeover, it definitely wouldn't hurt to look at your coverage and see if there isn't some way to work it out.
Finally, I'm excited to share some "Before and After" pics as well as a close up of the tummy tuck scar. I've been waiting to do this so I could see how the scars end up healing and I think after 10 months it looks about as good as it will look. I got some amazing scar cream from my plastic surgeon, Dr. Mizuguchi, but I think how a scar will ultimately look has many factors -- genetics, skin elasticity, post-op care and probably the most important is...excellent surgical technique and lots of experience.
If you are considering a Mommy Makeover and would like to chat, feel free to message me on Instagram (@moreskeesplease). I have a lot more information in my highlights there including lots of Q&A from throughout the entire process.
Mommy Makeover Part 2: Surgery Day and Recovery
Ricky took the day off work to bring me to the hospital and my mom held down the fort at home making sure the kids got to and from where they needed to be. I arrived on time and everything went smooth. First, Dr. Mizuguchi came into the pre-op room to make his surgical markings - he literally drew all over my chest and abdomen with a permanent marker while standing up. This helps determine where to make incisions so that things are proportionate and in the right area which can be difficult to do while laying down.
They gave me a small dose of medicine to help me begin to relax before wheeling me to the OR. I remember getting situated on the table and them putting the mask on. Then, lights out.
When I woke up I do not recall being in a lot of pain. While in the OR, they put a compression garment on to help reduce swelling, along with an ace bandage type thing wrapped around my chest. They also put the sports bra on that I brought with me the day of surgery and a lovely pair of white compression stockings. I am not quite sure how long I was in recovery before I was sent home as I was in and out of sleep. I think I had to drink a certain amount of fluids before they would discharge us. We had already picked up my prescriptions beforehand so we could go straight home. I remember that they had just started repaving one of the main roads we take to get home which made for a pretty uncomfortable ride back!
Once home, I went straight to my recliner in our bedroom where I dozed in and out of sleep for several hours. I don't remember much from the rest of that afternoon/evening, although I didn't really "sleep" well due to a combination of having to stay on top of pain medications, being in a chair rather than a bed and having to pee more often as the anesthesia wore off.
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| Post-Surgery Necessities |
Day 2 was bad. No sugar coating here. I had to go to the surgeon's office that morning for my first post-op appointment and I think I may have cried the whole way from my recliner to the appointment. My lower back hurt like hell from being hunched over when walking. The pain medicine took the edge off but I was still extremely uncomfortable. I remember thinking "WHAT DID I DO???"
I was terrified to have the nurse remove the steristrips from my incisions. It hurt to move and I wanted to throw up every time I had to stand, so while I wanted to look in the mirror I didn't have enough energy. Instead, I had Ricky take a few pictures so I could see it from every angle. I remember thinking I looked like Frankenstein but I was excited at the same time -- a flat stomach! lifted breasts!
Days 3 - 5 were rough. Ricky was preparing to leave for a work trip, my mom (who had been there since surgery day) was also getting ready to head home and my cousin Angie flew in from Chicago to take over. I don't think she knew what she was in for, bless her heart. I was attempting to ween off the pain medicine as I was going to have to be more awake and aware to help her figure out the kids busy schedules. Everything continued to hurt, and there were lots of tears, but she did a kick-ass job. The true test of a relationship is when you can trust someone enough to strip you naked and get you into the shower for the first time in a week and then afterwards get you back into a compression garment with about a bazillion hook-and-eye closures all while I cried like a baby. I am certain she went straight downstairs and made herself a cocktail as soon as I got settled back in my chair.
By my 2-week post-op appointment I was finally starting to feel human again. I had some of my sutures removed and was standing a bit more upright. Things were healing beautifully. I continued to wear my compression garment around the clock as instructed and also wore a white stomach binder several hours a day to help hold things in and reduce swelling.
A few things about the compression...whenever I took it off to shower I would get extremely nauseous and even lightheaded almost to the point where I felt like I was going to black out. I had one pretty scary episode where I actually did black out. I had just stepped into the shower when my vision started to blur then went totally black despite being totally conscious. That sent me into a full on panic attack and I could hardly breathe. Ricky was thisclose to calling 911. The whole episode lasted probably 2 minutes but it felt like forever. We immediately called my surgeons office and they explained that the combination of removing the garment, standing upright too long and being in the hot shower water with too little ventilation was likely what caused me to feel that way. It was extremely scary. This is why I STRONGLY recommend using a shower bench or seat for at least the first month and to also make sure the water is warm (not hot) and you shower with the curtain or door open a bit to allow extra ventilation.
By the end of the second week, my cousin had to head back to Chicago and Ricky was back to work in the office everyday after his business trip. I was on my own. I had completely stopped the pain medicine so I could begin to drive the kids to school and to their activities. I had to make sure to get a LOT of rest during the day so I didn't get too worn out.
By week 3 I would say I felt about 75%. For several more weeks I needed to allow myself lots of extra time to get simple tasks done around the house and still required numerous breaks/naps in order to function. It took 8-10 weeks for me to really feel 100% back to normal.
I did not have any major complications during surgery or recovery and for that I am so so grateful. That was one thing I worried about the most. We have lots of surgery experience with all that my son Aiden has been through and infection during recovery was always one of the major risks we were aware of. I am confident that selecting an experienced surgeon who is VERY careful in his technique to prevent infection and promote healthy healing is of the UTMOST importance when having any kind of procedure. Not only that, but someone who is responsive afterwards and will answer your questions to ensure you feel confident during the entire recovery process should also be high on your list.
I am currently 9-months post-op and I can confidently say that I am so happy I went through with this. My results have without a doubt exceeded my expectations. I can't wait to share another update with more pictures of how things currently look very soon!
*If you are in the Louisville, KY area (or beyond!) and are interested, the surgeon I chose was Dr. Nana Mizuguchi. You can read more about his practice, Mizuguchi Plastic Surgery, via his website: https://nanamd.com/. Follow him on Instagram @goldscalpel to see more about the services he provides. I highly recommend him and his entire team!
5 Simple Ways to Reduce Time Spent Looking at Your Phone
Raise your hand if you are guilty of spending entirely too much time on your smartphone...
With technology putting everything at our finger tips - from news to Solitaire, grocery shopping to checking the weather - it makes our smart phone usage almost impossible to avoid. We mindlessly scroll social media and Pinterest making mental lists of things we are going to start doing - eat better, become more organized, save money - and then have the hardest time actually doing anything.
I set my phone down to throw a load of laundry in and from across the room hear the ding of a new text message. I stop what I'm doing, respond to the text (because not responding to texts is a huge pet peeve of mine) and then get sucked in to the black hole of Instagram, Instagram stories and Facebook just to keep the little red notifications off my screen. And then, that laundry? Well it is still sitting there, unwashed, and I begin to feel frazzled about how much I have to do and its a big ugly spin cycle of my very own making.
If you can relate, then like me, you have also probably deleted social media apps from your phone but not before announcing "I'm taking a social media break" across all platforms (insert eyeroll here). I'm eyerolling not only for the annoying, cliche declaration but also because the social media fast rarely lasts longer than a hot minute. It's just SO hard!
I wouldn't take it so far as to call it an addiction, but for many it teeters close to the edge. So how can we address it? I've tried many things to limit my own time on my phone. Here are a few simple ways that have significantly helped keep my screen time in check:
- Turn off notifications -- Those small red dots on every app seem to scream "Look at me! Pay attention! Check this out!" It drives me crazy to have them there and even if I don't necessarily pay attention to the content it is flagging, it still takes time to clear them. Turning them off has definitely impacted my phone usage. On iPhones, go to Settings then Notifications and toggle "Allow Notifications" to the off position. If there are certain apps that you simply need to receive notifications from (like email for instance), you can manage the settings by each individual app as well.
- Move social media apps into a folder or off your home screen -- It seems kind of silly, but by simply grouping Facebook, Instagram and Pinterest into a folder on the 2nd page of my phone, it makes the accessibility a little less convenient. Kind of goes with the out of sight out of mind theory. If they aren't staring at you from the home screen each time you pick up your phone then perhaps you won't be so inclined to open the apps.
- Set screen time limits -- Apple recently introduced it's own monitoring capabilities on iPhones. Under Settings, Screen Time, you can see just how much you are on your phone. It breaks it down into categories and you can also see it by app. Just checking in here daily helps put things into perspective, but if you need to take it a step further you can even set limits for yourself. "Downtime" allows you to set a specific time frame for not using your phone or you can set limits for specific apps. Bonus: this can be done for each iPhone/iPad user connected through Family Sharing which makes setting limits for kids super easy! If you don't have an iPhone, there are many apps that will monitor screen time and allow you to set limits as well.
- Be intentional with your time -- Try making a schedule for yourself every day. Build specific tech/phone time into your schedule. For instance, set a goal that you will allow yourself a leisurely social media scroll while drinking your morning coffee but then not again until later in the day. If the evening hours are tougher for you then commit to doing something like a workout, a bath or reading a new book for at least an hour.
- Leave your phone at home -- When all else fails, just leave your phone where you can't use it. I can't tell you how many times I have left home to run errands only to realize I accidentally forgot my phone. After that initial panic wears off ("how will I know the best way to Target without Waze?", "what if someone important calls me?", "I'll have to actually use my debit card instead of my Apple Pay?!?!") I remember there once was a time these tiny computers didn't exist and we made it just fine. I bet you will even enjoy being without it after a while.
Technology is a way of life these days. I use my phone for more than just browsing social media -- important things like being accessible if the kids are sick at school, answering emails and paying bills on the go. I do not think it is realistic to think adults (and even kids at this point) should not be using smartphones, but when overusing them becomes an unhealthy habit, we need to make sure we are capable of addressing that habit just as we would anything else.
Anyone brave enough to check your iPhone for you current usage time and share in the comments? No judgement here I promise!
When It Comes to Friends, Here is What My Son with Physical Differences Needs
When kids are little, and learning to navigate the big world full of all kinds of people, they depend on us to guide them. To show them that things like our skin color, our size, our disabilities, are not things we use to determine if we can play with a person at the park or speak to at the store. We do this by exposing them to all kinds of people and modeling behavior that does not put a barrier between us and those who are different.
As kids get older and begin to develop their own likes, dislikes, and personalities - when they can exercise an ability to choose with whom they connect and want to be around - we hope that we have done our job so that they are naturally drawn to people based on their character and not their physicality. That their friend group is diverse and interesting. But sometimes, at no fault of their own, they simply aren’t ever exposed to individuals who are much different from them. The desire to reach out beyond the small group of friends they have from soccer or their neighborhood crew slows down. And while it may not be intentional, they begin to let go of friends who aren’t into the same things or part of the same crowd...or those who are different.
What does this mean for a child with special needs? Unfortunately it means that friendships for our kids often fizzle out in upper elementary and early middle school. Kids who once cast a much wider net while building friendships, one that may have included the kid with autism or a hearing aid or a birth defect, now feel pressure to “fit in” rather than stand out. So befriending those that do (stand out) does not come easy.
I get it. I remember being there. I also remember my parents always telling me to be kind to everyone no matter what. I sat with the kid on the school bus who was being made fun of for his speech impediment and told those kids to buzz off. I helped the quiet girl who dropped her books in the rain. I didn’t always do the right thing, but those times I didn’t stick with me to this day. There was a girl in middle school who used a walker. I am not sure exactly why but from what I could tell it seemed she had limited use of her lower limbs. One day in chorus she had a small accident. She sat behind me and I vividly remember her motioning for the teacher so she could tell her what happened. She started to cry and soon others began to notice the wet spot on her pants and chair. Kids laughed and shouted and pointed and although I didn’t, I also didn’t help or try to get the others to stop. Sure, I knew to be kind and how NOT to be unkind, but what that girl really needed was a friend.
Now, with children of my own I worry once again about the upcoming middle school years, particularly for Aiden, my 5th grader who has a rare craniofacial condition. If you don’t know about Apert syndrome (and you likely won’t if you don’t know us personally), it includes marked physical differences in his face, hands and feet. He’s had more than a dozen medically necessary surgeries to improve breathing, address vision and hearing issues and more major ones that have changed his appearance in a drastic way.
Friendships don’t always come easy for Aiden. When he was younger, kids were usually scared of his appearance initially and it wasn’t until someone forced the interaction that he would be included. My husband and I have always had friends who encourage their kids to get to know Aiden and treat him like any other kid and we are forever grateful for those relationships. Those have taken the sting out many times over the years.
Once Aiden got older and began attending school, he needed to navigate it on his own. In the early years it only took a visit from mom to the classroom and an opportunity to ask questions for kids to no longer think of Aiden as different. Later on, though, there was a distinct shift in the friendship department. The kids who were kind at school were establishing friendships beyond the classroom and for the most part, they didn’t include Aiden. There were the occasional party invites and play dates initiated by a kind mom wanting to encourage her child to be inclusive. But those often became painfully awkward like one instance where the kid complained “I didn’t want to be here but my mom made me” when Aiden had him over to hang out.
Are kids kind to Aiden? Most of the time, yes! And I’m very appreciative for the time spent by caring parents reminding their kids to be kind to the kids who are “different.” Do I want more than surface friendships for my son? Absolutely.
Kids with differences do not need to be included for the sake of being included. If you think you are doing the “right thing” by inviting my child to a party when your child does not actually want him there, you’re not. Your intentions, while good, can make things worse. He can tell when he’s not wanted somewhere or when his invite was an afterthought. He knows.
What he needs is genuine friendships with kids who truly see beyond his differences. He needs parents who encourage their kids to do just that. He needs just a friend or two - not even a whole group - who want him to hang out after school playing video games or go to the movies on the weekend. He needs kids who accept him as he is - as we all are - fearfully and wonderfully made. He needs kids who enjoy being with him for his silly personality and ability to name (and do) every Fortnite dance.
My child with physical differences does not need pity. He does not need friends who are forced to invite him to social functions by well-meaning parents. I cannot always tell a genuine friendship at first and thus doing so is even more difficult for him. But I promise I would rather him have no friends at all than fake ones. The thought of either breaks my heart in two, but it is a reality I think about more and more. Each night I pray my sweet boy will be lucky enough to make a few genuine and lasting friendships. He deserves that connection. After all, isn’t that what we all want for our children?
So yes, I encourage parents to continue the conversations on kindness. Keep discussing differences and acceptance and inclusion. But also take it a step further. Remind them that kids with differences want the same things they do. Ask them to truly make an effort to get to know others who may be a bit different. They might find those kids have more to offer than they realize. As my favorite book Wonder says, “it’s not enough to be friendly, you have to be a friend.”
Disney's Disability Access Services Pass: A Review
We had been to Disney World when Ethan and Aiden were little - 3 and 4 I believe - and this would be Hudson and Nolan's first time, so it was sure to be an exciting trip for everyone. Our plan was to stay in Sand Key for several days, then drive to Disney World for a day trip and back to their condo 2 hours away for a couple days before making the drive back to Kentucky. With only 1 day in the park and having a few park hopper passes we knew we needed help to make the most of our time at Disney which is why we were so thankful for Susan's help! She took care of everything from attaching our ticket information to our Magic Bands to scheduling our Fast Passes in advance. It was great!
A few months in advance, I contacted Disney to learn more about their Disability Access Services Pass. Aiden has pretty severe ADHD and that coupled with the unique structure of his surgically separated toes makes waiting in lines almost unbearable for him (and for anyone having to wait with him). I was not sure if having Apert syndrome and ADHD would qualify him for the DAS pass, but after reading the guidelines provided on Disney's site, I felt comfortable seeking this assistance to make our trip more enjoyable. Besides, Aiden is stared at enough as it is, so the thought of subjecting him to long lines of people constantly gawking for anywhere from 30 minutes to several hours helped justify the need as well.
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| On the Monorail heading in to Magic Kingdom! |
After a quick conversation and introducing Aiden to the Guest Relations Personnel, they added the DAS designation to each of our Magic Bands. This allowed us to access and make changes to our DAS and Fast Pass selections on the app on my phone, which automatically loaded to our Magic Bands for scanning at each ride.
She explained that just like a Fast Pass, you would have to visit the attraction you wanted to ride and receive a return time. However, the DAS could be used in conjunction with a Fast Pass meaning we could get both a DAS return time AND a Fast Pass return time for the same OR different rides concurrently. For example, we were able to schedule a Fast Pass return time of 8:30 for one ride, and a DAS return time of 9:00 for the same ride if we knew we would want to ride something more than once. One extra feature of the DAS pass is that you are able to return and ride once at the time assigned or anytime thereafter for the rest of the day, whereas with a Fast Pass you must ride between the designated return time frame given (8-9am, for instance) or entrance is forfeited. Like the Fast Pass, you are still only allowed to schedule the next one once the current admittance is used, but if you plan well, you can look at wait times and park location of attractions ahead of time and decide pretty quickly which one you'd like to try to snag next. Finally, the person with the DAS pass needs to be the one securing the DAS return time and must ride the ride.
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| We made it! |
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| Astro Orbiter |
I told the boys we needed to head to Space Mountain to make our time slot and didn't see a low curb surrounding the area in front of the castle due to the amount of people stopped taking in the show. My ankle rolled, I heard a 'POP' and down I went. Ugh. We had only been in the park for a little over an hour at that point. The boys were so worried about me and I knew they were afraid this would put a huge damper on our only day at Disney. A cast member quickly came to my side and asked if I was okay and if I wanted him to call an ambulance. I already had hundreds of people staring at me since I was facing the direction of everyone watching the show so I said "no thank you!" to the ambulance. An EMS guy asked me some questions and even though I knew it was injured pretty bad - either a bad sprain or possibly broken - I was NOT going to ruin our Disney adventure. They wrapped my ankle with ice and an ace bandage, got me some Ibuprofen a wheel chair and off we went! We could still make it to the Fast Pass time for Splash Mountain! I of course wasn't going to ride, but no sense in the boys not making it on!
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| Back to the spot where I broke my ankle :( Stupid curb! |
Six hours later...an x-ray confirmed...broken fibula at the ankle. :( It was getting late but we were able to make it back to Magic Kingdom a few minutes before the firework display started. Ricky and the boys met back up with us and although the rides were still open for a few more hours, we decided we should probably get on the road back to Sand Key. My foot was throbbing and I was so over being pushed around in a wheel chair in the crowds of people (which was no easy task for whoever had to do the pushing either).
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| This was before the swelling was even at its worst! |
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| Even leaving earlier than expected, everyone was worn out! |
If you would like to reach out to Susan Patel for help planning your Disney experience, you can email her at susan.patel@offtoneverland.com. Susan is a friend of mine - our kids go to the same school - so if you do, tell her Taryn @ More Skees Please sent you!
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