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Keegan Joy

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One of the first questions we got when we began announcing our fourth pregnancy was whether we desired a boy or a girl. Just as with our three, it never mattered. When my stepfather asked, I began to respond with my old fallback, "It doesn't matter as long as he or she is healthy." Then I remembered our boy, how worrisome and fretful his pregnancy was, how erratic his health is, and my realization since having him that even healthy makes no difference. So I stopped myself mid statement and responded "It doesn't matter, God will equip us to care for whomever He needs us to."

I didn't know that a mere two weeks later, I would be done caring for our child. 

It's difficult in so many ways. It feels abstract because of the lack of physical proof and evidence that we had our child with us. Two pregnancy tests are all we have to indicate that he or she was here. But I know that he or she was real, the baby's impact on my body was evident before I even missed my cycle. He or she altered me, causing me to feel woozy for hours each day and gave me increased exhaustion. But the outside world doesn't know that, even Matt, who was as ecstatic and excited as I was, knew our child as a concept rather than a physical being. Because of this, I find grief difficult. Mothers that have lost pregnancies of their own can surely relate, but many others understand that we are sad without comprehending the sense of emptiness that follows the physical presence of that child being removed. I knew he or she was within me, just as sure as if I had held that baby in my arms. 

Grief has been challenging as I celebrate others, rejoicing for their pregnancies and new children. I don't covet their children, just as I have never coveted the expansion of families around us for the past 27 months of our trying to expand ours. It is harder now though. Again, not because I covet their child or want their child, but because I miss mine so much. I think about how I would be moving into elastic waist clothing, would be saving up for teeny diapers, and would be dreadfully (and blissfully) nauseous for large portions of the day. As soon as we saw our positive tests, I began to think about the best moments of new life- the first movements especially when you aren't sure if they count or not, the large belly that becomes a clear sign to the outside world that you are growing life, and labor and delivery which peaks with the child leaving your womb and you feel the weight of him or her in your arms for the first time. I fell asleep imagining how he or she would feel in my arms. 

When it became fairly evident that we would not be holding our child in our arms here, I prayed so many things. I began to plead with God, asking Him to protect our child because I wanted him or her to feel love. In that moment of despair, I felt what I can only describe as still. It wasn't peace or comfort because I very much fretted and cried over what I knew was happening, but God stilled my heart and gave me understanding over my plea. He assured me that my prayer for my child to feel loved was a guarantee  that He could make and one that was more assured than with my other children. My child was delivered from my womb directly to His side, to His presence, and would always know His love alone. This dear one, who was so desired, would never know the fear, pain, or anguish of this world. Selfishly, I wanted (and still want) this baby to know how much we loved, desired, and cared for him or her. But God's love is enough. 

We move, not on, but forward and carry his or her memory with us. The grief comes and go and changes depending on the day and the cause. An offhand statement from one person may cut differently than a similar offhand statement from someone else. Matt was left bewildered with a sobbing wife yesterday as I just proclaimed how much I missed him or her. I treasure my three, and praise God for each of my days with my four. 

We named our baby Locke. It had been our girl list since we were expecting Keegan and, seeing as it can be a boy name as well, felt it appropriate for this cherished one. Locke means a stronghold, I gather resolve from the knowledge of Locke's presence in the stronghold of our God and the knowledge that we will meet Locke there one day. In 2 Samuel it is written "The Lord is my rock, my fortress, and my deliverer; my God is my rock, in whom I take refuge, my shield and the horn of my salvation. He is my stronghold, my refuge and my savior- " 

We lean into God as our stronghold, our rock, and the provider of our salvation. Our time with Locke was brief, but he or she will not be forgotten by our family. 

Changing Society

There is a campaign out there to encourage more companies to include kids with special needs in their advertising. I'm not going to link their name because on one hand, I appreciate what they are doing. 

I get it. I do. I want inclusion for my son and other kids with special needs in all aspects of life. I completely agree with toy companies including kids of all needs playing in their advertisements because that is one way of showing adaptability of products. I encourage movies and tv shows that appropriately include kids and adults with special needs because everyone needs representation and to identify with film, it's one way to understand ourselves and everyone likes entertainment!

On the other hand, I'm not sure how I feel about this specific project. At the end of the day, these are advertisers who are trying to make money, and their choice will be the most beautiful and least shocking of all kids with special needs. These kids will be made up, dressed up, frosted and filtered, and altered as the objective of selling more product is the goal of all campaigns. And I'm ok with that, sort of...

At the end of the day, I could care less if anyone else thinks my kid(s) are beautiful or handsome or cute. Do I dress my kids in certain outfits or clothes in order to look cute or look nice? Of course. Do I lament when in an outfit doesn't elicit "likes" and "comments" from others? Absolutely not. Their clothes may often be conventional, but I have to like them and, now that the girls have a very strong voice, they have to like them too. My questions to the girls when they put together some wild outfit are- Do you like it? Are you comfortable? Is everything covered? That is what matters. There are times I say more about what they wear, for special occasions or nice events, but even then, it is about looking near and put together. Their looks are at the bottom of the list of what I want feedback from others on. 

That is why this campaign bothers me so deeply. Rather than knowing my kids are placed in a product ad that is inherently superficial, in all cases, not just inclusion based cases, I want to know what people's perceptions are beyond that. I want people to question whether my kids try hard, use the intelligence they have, are kind, and love others. I want people to report back on how MacKenzie shared about her love of science, how Keegan shared with a friend, or how Johnny learned a new word from a friend. I want a stranger to comment on how interactive Johnny is rather than how he is a "special sweet angel". I want my friends to provide opportunities for inclusion at play dates (I have great inclusive friends by the way), for inclusion at schools to be the norm when appropriate, and for accommodations to be made to help all people who need a little extra assistance. I want a campaign that is focused on changing our schools so the needs of all kids, from the highest functioning to the lowest can get an education tailored to their level. I want my Facebook feed filled with demands for resources for classroom teachers, administrative staff, and educators and therapists that are helping kids learn livable skills. I want a hashtag that urges people to change their hearts, to be kind, understanding, and encouraging to kids and adults with special needs, rather than just being ok with how they look on the outside. I spend time telling my girls that beauty is subjective, that everyone has aspects to their physical body that is beauty, but that real worth comes from inside of them, so how can I promote a campaign that is about little more than a picture in a magazine or on a billboard? My son and my daughters are worth so much more than a photoshopped smile, regardless of their needs. This campaign speaks about changing advertising, but I see it as molding and changing the most "typical" looking kids into the societal norms that are already standard. 

And really, there is nothing wrong with that. That is what modeling and advertising is, but I caution anyone who thinks they are changing anything because a kid with special needs is included in one season's print ads because of social media pressure. 

First Day

On Monday, Mac started school. It was a day she, and her parents, looked forward to for weeks. She carefully picked out her backpack, lunchbox, first day of school outfit, and requested a family trip to IHOP to commemorate her next step. I could be sad, I could cry, I could voice my frustration that "it all just happened too fast". I could. But I honestly didn't feel that way. I began to feel a little like everything is happening too fast, but our journey with her isn't over, it's just different now. I was too excited to see her move on to school to be sad. And my heart spilled over with pride to see her excitement and confidence. 

As she approached the curb from the car line, she hesitated once. She turned back to the car, momentarily forgetting what her next step was. I knew she would be fine walking into the school and finding her classroom, we had toured and gone over what she should do several times. This was new however, and her looking back, was a normal sign of needed support. I didn't hesitate however, Matt and I have her a big smile from the car and out of my passenger seat I waved her on, silently urging her toward the door. She smiled back, turned, and walked in to the building. 

The reason I don't feel sad or wistful is because this is what I have been preparing her for over the past years. We have known for some time, that we would begin with mainstream schooling for our kids. As we raised her, we worked on the skills she would need to be successful in this setting. We worked to create scenarios where she could test responsibility and independence under our guidance. As appropriate and when safe, we allow, and encourage, her to push the boundaries of her limitations, to see what she is capable of. All of this was to create a confident little girl who walked into the school building by herself AND to  prepare her for obstacles she will face in her world as it grows beyond the confines of campuses in our neighborhood. 

The other day, when spending time with friends of mine, we mentioned the scene in Finding Nemo when the baby turtle, Squirt, gets lost in the current. As Marlin freaks out, the older turtle holds him back, voicing a desire to give the little guy a chance to figure it out. It's one of my favorite scenes in any Disney movie. A friend turned to me and said that the scene was "me", that the scene I mentioned described my parenting. It was an honor to hear because that is what Matt and I both try to do. To never place our kids in danger, but to allow them to grow when and explore when the situation allows. There are times we need to hold their hands and times when they can run ahead of us. There are times when we rescue them off the top of the playground and times when we push them off the diving board. There are times we guide them through friendships and relationships and times they need to figure it out themselves. Finding that balance for our family has been crucial in how we parent.

So Monday was our biggest test yet. She has her own days, her own memories, and large amounts of her own time now. We will be there to support, guide, and teach her along the way, we simply have more help from this point on with teachers, counsellors, and new friends. She WILL stumble along the way, but that's part of the process. We are so proud of her and look forward, expectantly, to hearing everything she wants to share. With a smile and a wave, we send her on her way!

School Next Year

Mac has always been an accelerated learner. We have always proudly boasted new things she has learned or skills she has acquired. We have also always struggled with a plan for her education. We do not have the income for private school at this time and after careful reflection, feel that mainstream public school is our best option. That being said, in preschool and looking forward to elementary school, I was worried about her being challenged enough. She learns quickly, she learns vast amounts of knowledge, and she just plain "gets it". Two years ago we found a preschool program that would allow her to attend the 4/5 year old class instead of the 3 year old. This past year we placed her in a different preschool program, in a 4/5 class in order to learn how to function in a larger group and in a group that would transition well into the school district. Part of the way through the year, she received one on one attention from her high school buddy teacher in addition to working on other assignments with her peers. Throughout her life we have worked on learning with her, sometimes formally with lessons and workbooks, and sometimes informally. She soaks it all up. 

It became evident, a year ago, that she may be too prepared for Kindergarten this upcoming year. After some assessments on our part and advice from several educators we know, we decided to push her further with at home teaching, focusing on reading, writing, and math skills. We looked at the standards for Kinder in our state, had her reading at every opportunity, and nourished her young mind. Simultaneously, we began the process of asking the school district and others in the community about ways a child could accelerate past Kindergarten. Many people wrote us off, told us it wasn't possible, and gave us multitudes of reasons why it was a bad idea. Many of these reasons stung seeing as I was accelerated through school and feel blessed by that decision on the part of my parents and educators. We plugged through, knowing what was best for our girl. We never cared, and still don't, what grade she goes into. We just want what is best for her and wanted to know we tried. Through hours of searching, we discovered the CBE (credit by exam) that our district participates in, even if they do not recommend it for their students. While one would think that knowing about the exam made our journey easier, it proved to remain just as difficult. Countless emails were sent back and forth between myself and the school counselor to find out details, dates, and any information about the format of the test. I never had any intention of teaching Mac how to take the test, but I also didn't want her to go in "blind" to a situation she had never been in before. All the while we prepped her by teaching what she needed to know regardless of what level she would end up in.

We also discussed what "skipping" meant for her and our family. We prayed for a clear path for her and reassured her that the test was merely one measure of her brilliance. Over and over we stated how much we wanted her to do her best, no matter what results ended up presenting themselves. She walked into the test hesitant and walked out confident. She filtered out little details to Matt and I throughout the day, telling us about problems she worked and stories she read. I, unable to let it go, asked numerous questions about different topics on the test, grilling her for information, hoping it would prove insightful for how she did. It was fruitless and I eventually backed off, reassured, once again, that it did not matter. The test was one measure and she would do great in whichever grade she was placed in. 

The results came in on Thursday. To exit Kindergarten, a student must achieve 80% on math and 80% on English/reading. Mac achieved a 90% on both parts, a clear sign that she is ready to move on. We are proud of our girl, mainly because of how hard she worked. Even though learning is easy for her, she still enjoys it and focuses on doing things correctly. We also feel proud of our diligence, of pushing through the beaurocracy and negativity to find the right path for our girl. We made the system work for our family, it's a lesson that may need repeating dozens of times over, especially as we near Johnny's time entering the district this fall. 

While I am proud, my mommy heart is a little wistful. With the opening of that letter, a year flew by. A year that, more than likely, she will not be with us, under our direct care. It is a full year of classroom celebrations, lunches at the school, reading to her class, projects, field trips, class pets, and memories that are no longer accessible to us. There will be no first day of kindergarten picture and no "friends since Kindergarten" to be found. It is a quick jump in our little one's journey. For me, that is how I knew this was the right decision. It would be so easy to keep her in kinder, to have an easy year with her, to enjoy all the time and memories. While kinder would have its own challenges, it would be a smooth transition with easy lessons and less emotional strain. The jump to first means being behind, socially, emotionally, and, in some cases, mentally. But the jump is what she needs. It will be a struggle, at different times and in different ways, for her entire pre college academic career. There will be things she is left out of because of her age. There will be things she has to wait on because of her age. There will be times where more is expected of her because of her presumed age. But it is all worth it. Her mind is worth the challenges. And who better to guide her through the far fewer challenges towards the much more frequent benefits than myself. Because I know all of this and because my heart is breaking a little at that lost year, I know we have done the right thing for our girl. 

And if there were any doubts in our mind, I can just reference her reaction when we told her-
Me: "How do you think you did on your test?"
Mac: "Awesome."
Me: "Yep. You are right. You did great and you are going to move up to first grade!"
Mac: with huge smile on her face and voice dripping with the know it all attitude she got from her mom "Well, yeah. Of course!"

Beach Days!

We spent two mornings at the beach on our vacation. Both on the way to Orlando and on the way back, we stopped in Destin overnight and for a couple hours playing in the sand and in the water. We like the convenience of our hotel, the same one we stayed at two years ago, because of it's close proximity to the water. We only have to walk 100 feet or so to get to the white powdery sand which is helpful for adults and kids!

The girls love the beach and would have gladly spent days running up and down the beach, in and out of the water, and rolling around in the dry sand and the wet sand along the surf. They loved chasing birds and looking for other animals and Mac really liked finding seashells to bring home. Some of them have even been colored!

Johnny loved the water and beach too, enough that he tried to consume it on several occasions. It was slightly disturbing to hear the crunch and crackle of sand between his teeth, knowing there was no way to get it all out until we went back up to our hotel room. He would have gladly scootched into the ocean, never to be seen again, much like Keegan was when she was little. He tried desperately to keep up with the girls, scootching, crawling, and even some standing along the beach to explore along with them. He loved the water and was hardly phased when a wave would knock him over.


The beach provided us with some great family time, but it also provided the opportunity for the kids to get out some energy in the middle of our long road trip. We are glad we took the time, instead of pushing straight through each leg of the trip. It also meant that we could stop at Shake's for frozen custard and we discovered a great, Freebird's or Chipotle style place outside of Destin, called Burritos del Sol. Their food was crazy good, really fresh with delicious sauces and toppings (I got a baja style shrimp quesadilla with pineapple salsa). We highly recommend both places for a great treat if you are in the area.

Special Needs at Disney

We did a little research about Disney's accommodations for kids with special needs to prepare for our trip. We are glad that are needs are limited with Johnny, but there were a few concessions we needed. These are what we were offered and what we used, other families may need more or less depending on their situation. 

First, we absolutely needed the ability to use his stroller as a wheelchair. We would not have been able to do Disney without it. Being able to take him into shows, through certain lines, and, in general, our comfort, depended on using the stroller as much as possible. We did not use it the entire time, we held him quite a bit, but as a 2.5 year old boy who is wiggly but cannot walk or even stand to provide us with some relief, we needed the assistance provided by our stroller. We were issued a red tag to use for the duration of our trip and did have to show it quite a bit as people ushered us to stroller parking instead of to the line or ramps we were searching for. Additionally, we did get some dirty looks and comments from people who didn't understand why we could use our stroller and they couldn't use theirs. This didn't faze us. They don't know our circumstances so I ignored them. 

Not only was the stroller useful for general ease of navigating the park and lines, it was imperative for Johnny to take a nap so we could spend all of our time at the parks. Our double stroller is amazing and is only slightly longer than a standard single stroller and not any wider. His seat easily reclined back and has a large shade so he could snooze for an hour or two all three days we were at the Disney parks. Even if we hadn't been allowed to use the stroller as a wheelchair, we still would have brought it for this reason alone. It was nice to have a space for the girls to climb in and out of too, with the additional seat, and Keegan slept at Magic Kingdom as well!

Having this wheelchair tag also provided an additional benefit we needed and that was aisle seats for shows in case Johnny was overstimulated or overwhelmed by anything we saw. He doesn't have huge issues with it, but we've noticed large crowds and loud noises set him off easily. Additionally, we learned on the trip that 3-d, even without the glasses, freaks him out. Each time we saw a 3-d show he clamored to be in my lap and buried his head into me to avoid seeing it. Sometimes that meant we sat in the back and sometimes that meant front row seats, neither mattered to us (although front row was great for The Lion King and the Frozen Sing along), but having the ability to easily grab him and leave if I needed to was important. We never had to, but we were close a few times. 

    (Back of the theater for Indiana Jones
      and Fantasmic)

     (Front for Frozen Sing Along)

We also had access to an old style fast pass. This option allowed us to check into any ride Johnny was able to come with us on, have a "wait" time written down for our family, and we could return to the faster line at that point. We could only have one ride waiting at a time. Mainly, this was so we could park the stroller outside the ride and quickly get on and off. Honestly, because of how young he is, we only used it three times. All the other kid rides were easy to wait in line for. I can see how this would be beneficial to have if we return when he is older. While we work hard to show all of our kids appropriate behavior and work on it with each of them, I can see where the chance to ride a ride with a space to wait outside could be beneficial for Johnny. 

Another accommodation we needed but is given to anyone was the chance to bring in outside food, a soft cooler, and an ice pack for Johnny's medicine. It's nice that this corporation still allows outside food, especially with Johnny being a somewhat selective eater. I was able to pack food that I knew he would eat and we obviously needed two doses of his medicine chilled for the entire day. It was also nice to have snacks and a small meal for all of us, so huge kudos to Disney for helping us stay in our budget!

Lastly, I cannot say enough for the general attitude and positivity I saw at Disney towards all people, but especially those with special needs. Time and time again, all three of my kids were given love and had kindness shown to them at the parks, but extra steps were taken for kids and adults with special needs. Each character spent more time with Johnny and others with obvious special needs. Several princesses were so gentle and warm towards our sweet boy. Both Cinderella and Merida took several extra minutes with him, even after several minutes with the girls, to love on him and talk to him. Cast members were patient and welcoming to people needing extra assistance. And the overall attitude of everyone was one of inclusion. At the Lion King show, there is a parade for kids selected from the audience and one cast member selected and pushed a child in a wheelchair through the parade, helping he sing and clap along to the music, all the while dancing and keeping up with everyone else. 

     (Kisses from Cinderella)

The best moment for us occured, not to our own family, but one directly in front of us. As we waited in line to see the talking Mickey, I noticed a family with an older (late teens) boy with special needs. While his diagnosis may not have been clear, his love for Disney was, evident in his bright Mickey hoodie, t-shirt, and Captain Jack Sparrow/Mickey ears. When it was his turn, the delight that came over him, was a wonderful thing to watch. But even more so, was the response and diligence that Mickey and his helpers took to make this boy's experience special. He asked the boy several questions and then noticed his pirate ears. They the took turns saying "argh" like pirates and posed for several pictures like that. The pleasure on the parents' faces and the happiness on the boy's face was an opportunity I felt blessed to observe. I think that is what makes Disney so special, not that it works to give everyone a perfect day, but that it trains each person that works there to take small moments and turns them into unique experiences. How many people can say they love Mickey and Captain Jack Sparrow so Mickey took the time to pose and talk like a pirate for them? The hug that boy shared with Mickey was almost better to watch than my own kids' hugs with him. It encompassed all the reasons I knew we would be fine to take Johnny along with us. It also made my appreciation for Disney grow because I know this wasn't an isolated incident or something contrived. It was genuine and something that they are diligent at doing, at making magic for everyone. 

Road Trip with Kids

We drove the 15+ hours to Orlando with our three kids last week. I, like in most things I do, researched ways to keep kids of all ages entertained and over prepared for most scenarios. I was glad to have way more than I needed than not having enough. I have a few tips here which worked for our family, ages 5,4, and 2.5. 

First- tons of snacks that are easy to clean. We had chewy bars, goldfish, veggie straws, baby carrots, raisins, trail mix, water bottles, and the occasional juice pouches for the kids. We also had some candy bracelets, gummy bears, and fruit snacks for the girls as little treats. We brought our own snacks to help stretch those miles near meal times and to help work more savings into our budget. Because we didn't have to buy a snack at every restroom stop, we were able to treat the girls to beneigts in New Orleans, frozen custard in Destin, and finally bought them a gas station treat on the last leg of our roadtrip back. Having these snacks on hand (with a bowl to put Johnny's in), really helped Johnny too as he would get restless when he needed to nap. Each day, if we have him his water and a little snack, he would munch on a few, then fall asleep, content that his needs were met. 

Bring lots of new activities that you don't care about making it through the trip. We bought new color books, foam stickers, pop beads, and other assorted activities from the dollar store and other dollar bins at stores. We bought various magnetic dolls for cheap and got a handful of new books from the library (my girls are very good with books so I wasn't worried about these being ruined). We also found two new seek and find books at Half Price Books, which the girls love. I also had a few Color Wonder packs stocked up from Easter and Christmas gifts that I loved, the girls could use markers and I didn't have to worry about the ink getting anywhere. Both girls used a clipboard for writing and coloring on. All of these things were in a large tote bag with a backup tote bag in the back of the car to trade out if they got bored. They didn't! They also were allowed to bring a small shoebox with a few figurines or small toys. Those, paired with two new My Little Ponies from one of their Happy Meals, made for some great interactive play between the two big girls. They played with their toys in the boxes and across the seats and used colors and stickers to decorate their boxes too. 

Johnny needed different entertainment. He had two Melissa and Doug interactive boards, one with latches and one with little doors for him to open. This was an activity approved by his OT as well, to keep his litte hands strengthening and moving as we drove. We also had a handful of musical toys for him to play with and several of his favorite books. We are fortunate that Johnny loves books and will flip through them for large spans of time. For the trip, we packed all board books and rotated through them. 

One thing that worked for us was to tidy every time we stopped. All toys and books went back in the tote bags, a quick collection of trash was gathered, and anything that needed to be wiped or emptied was done when we ran into the restroom. It didn't keep our car clean, but it did keep things from becoming overwhelming. Additionally, when we got to Orlando, where we stayed for a week, we removed almost everything from the car. Even though the kids didn't have any time to play with their things while we were in Orlando, it was nice to have the car feel clean and to not have to fight with the toys as we drove to all of our destinations. 

Because we would be driving late, we had the kids' Jammies ready to go in the car each of our driving days. Whenever we stopped for dinner, we would make the kids use the restroom, change Johnny's diaper, and switch all three kids over to night clothes. That way they could be more comfortable and the transition to bed was easier when we arrived at each destination. Further, because we stopped overnight in Destin on both legs of the trip, we had a small suitcase that had what each of us needed for just one night. It was much easier to bring one suitcase in instead of three. 

Lastly, yes, we used the DVD player in the car and the iPads for the kids, but not nearly as much as we thought. We made it all the way to New Orleans on the first day with zero technology. By that point we had dinner and didn't mind the kids watching a movie to wind down as they fell asleep. The only day they used technology heavily was the last day, driving back from Destin to Houston. Even then, we made them take breaks from it and they happily played with all of their other items. 

Lastly, if you have a child in diapers, especially one with explosive diaper episodes, be ready. We knew this was a potential problem and had plastic bags, extra clothes, baby wipes, and diapers, ready. What we were glad we also had by chance was Clorox wipes for the seat and buckles (it didn't fix the mess, but made it tolerable until we got to our hotel a couple hours later) and beach towels to lay said child down in the parking lot on. There was no other way we could have addressed all the mess. I wish we had a dry towel to put in the seat as well, but we adapted as best we could! He really needed hose since he had reached into it and spread it all over his body, but after we wipie-d him as best we could, took him into the restroom to wash his arms and face with soapy water as best we could. 

Any other tips? Any questions? Feel free to let me know!