All She Can

I think most parents joke and tease with their kids about how much they are loved. Just this morning, Keegan told me she loved me and, like so many times before, I asked her how much. She threw her arms out as wide as she could and said, "This much!" I jokingly asked her little three year old self, "Is that all? That's not very much!" She took it in her usual good natured stride, scrunched up her nose, grinned and said, "Yep!" As the conversation moved on though, I thought more about what I said. 

By units of measure, her arms don't stretch that far. She is tall for her age (87th percentile as of Wednesday), but that's still not very tall by human standards making her arm span not very big. Even an adult, with their arms spread wide, can't show how much a parent would hope to be loved by their child. 

But I then reflected to myself on how that was as far as she could reach and that's how much she loved me. As wide as her arms would move apart, as far as she could stretch them, that's how much she loved me. She loved me, in a unit of measure, as much as she possibly could. When you think about it that way, it means so much more. She was telling me she loved me and physically showing me, that for her, it was as much as she could. And that's incredible. 

Thank you Keegan for loving me as much as you possibly can. I love you that much too!

(Photo restaged)

Keegan at 3

Keegan,

Today you are 3! Three years ago I was either sitting comfortable in a hospital bed waiting to see what the coming hours would bring or walking the halls, much faster than many laboring moms, seeing if we could get some good contractions going. I was so excited to meet you and now, having known you for the past three years, I was right to be excited. You are fascinating and amazing and you fill our lives and hearts with joy every day. 

Your happiness is contagious. Your crinkled up smile with big brown eyes that disappear into your scrunched up face make us laugh. Your giggles range from courtesy laughs to make others happy to genuine belly laughs that are infectious and make us all smile. You love to laugh at jokes and animals the most, but will also get huge kicks out of silly faces from those that you love. You study books intently, memorizing your favorite parts and answering questions throughout. Disney princess books are your favorite, but you will happily read anything. You love to listen to music and will dance and sing on car rides, at home (with or without accompaniment), and in the store. Just like your sister, your skill for picking up tunes and music is amazing and within a few times of hearing a song you will begin to sing along. You love to play with barbies and dolls, carefully caring for the chosen doll or animal of the day as you rotate through which one has your favor that day. You also love to color and draw and will happily sit at our dining room table and color pictures for friends and family. 

You have been fun at meals as you participate more in choosing your favorite foods and talk and interact with us more as the meal goes on. You love pasta and Mac and cheese, but also love rice, peanut butter and jelly sandwiches, raisins, yogurt, all fruit, but especially oranges, oatmeal, and candy! The candy has been fun to watch you with because it's all the rolled over candy from Halloween to Christmas and now valentines day. You only get one piece a day if you eat a good dinner  and it's fun to see which one you pick on a daily basis. Pink is usually the winning decider. 

Speaking of pink, we need to expand your wardrobe to include more of it. You insist on wearing pink most days and will throw a fit if we try to have you wear anything other than a nightgown at night. You love to wear your pink cowgirl boots, but also love the pink hello kitty converse, and pink princess tennis shoes. You see the pattern here right? For several school days you picked out a pink Mexican dress to wear with jeggings and your boots. It was an interesting combo, but you certainly pulled it off! Your hair is also long enough to do more stuff with so we have been putting in a "queen Elsa"  braid most days. You are great about getting your glasses and putting them on, you wear them 95% of waking time if not more. 

You love to play with Lylah and Luke, your very best friends, but you will happily tromp along with anyone. You and Mac play together a lot and do a great job loving on Johnny too. Still, just like we said for the past three years, you are either going 100 mph or you are crashed out. You will either be going and moving and wiggling or snuggled up and about to fall asleep. You love snuggles and will wedge yourself as close to a loved one as you can. 

Keegan you are amazing. You love so fiercely and deeply and have such passion for people and for the things that are important to you. Sometimes it means that you get mad and frustrated, but mostly it is fuel for making others happy and content. I love that you are such a personality and so full of life. It's been so fun to watch you grow and to see you change and, in some ways, stay the same. Your birthday card said it perfectly- "You're an amazing girl! Everyone loves your bright spirit and smile, how you do your own thing with spectacular style! You've got a great shot at your dreams coming true- just keep being joyful, original you!"

Happy Birthday Keegan Joy! Mommy and Daddy love you soooooo much!

Love,

Mommy and Daddy

Sigh

Last week I was feeling pretty overwhelmed. My list of wants to do around the house is getting longer, my list of fun and lessons I want to do with the girls is getting longer, my list of therapy activities to do with Johnny is getting longer (and longer and longer), and my time is feeling shorter. Without wanting to lose sight of the little things that are so important, time for snuggles, coloring, home cooked meals, errand trips together, time with friends, I wasn't sure how I was going to get it all together. And this isn't just last week, the lists (full of hopes and dreams of my ideal world) go on forever. I guess it only goes to graduation day for each kid. But from this view point, it seems like forever. 

I struggle because I want to do it all. And I like pressure. And I like lists a lot. But I was beginning to tiptoe my breaking point and I don't want to go there. I was there just over a year ago, the weight of post partum hormones (not depression, just the fluctuation of hormones), little sleep, trying to figure out Johnny's feeding issues, and too many doctor appointments for too many months crashing all around me at once. And as I saw the same feelings inching into my mind and the weight working it's way back onto my shoulders, I looked for relief. 

I said "No" and "We can't this time" to things I would have easily said "yes" to before. 

I focused more intently on engaging my kids in small moments throughout the day, capitalizing on dozens of small play and learning sessions in the midst of a crazy schedule. 

I opened an email that was like an answer to prayer, offering a fantastic deal on adding an extra day of school for the girls and took them up on it. 

I refrained from calling or texting friends to catch lunch or breakfast in my 1-2 he windows I had open and used that for time with my kids, to get stuff done, or like the 15 minutes I had today, to eat lunch quietly in my car. 

I looked at "my" finances, the money I pull in from the 3 (yes 3) odd jobs I do to wiggle funds for someone to come help clean the house. I don't know if this will be regularly or occasionally, but I'm happy that we have some extra money for an absolute luxury that I need right now. 

And I'm going away. For me AND for a friend. My dear friend Crystal is having a baby very soon and I aim to be there around the time he or she is born. I am very excited for the privilege I have to see her and to go on a trip by myself!

Maybe these aren't the right steps for someone else, but these are absolutely the right steps for us. I could feel guilty about the extra day at school for the girls, but I don't. They love school and they learn a lot there. And like I told a friend today, right now, someone else can meet the girl's needs, I am the only one who can meet Johnny's needs. And he needs more time. Maybe spending the money on someone to help with the house isn't super fiscally responsible, but we have thought about it for a long while and this is what we want to do right now. I work hard for my money and I would rather hang out with some kiddos at church a few hours each week than clean my house. It's a trade off for me and I feel I'm getting the way better end of the deal! 

As I work to find this balance (that I think all people struggle to find in their own way), I am committed to not becoming a monk. Matt and I say over and over how important relationships and connections with other people are to our lives. I just may have to plan out play dates, lunches, and dinners over the next two months instead of cramming it all into one or two weeks! Good thing I like my calendar as much as I love lists. 

Besides, it's the relationships that strengthen us. Our reliance on God (who forgives us for all of the times we fall short, so we should forgive ourselves too). A hubby who makes you fondue for valentines and takes care of the kids all day when you are sick (not because of the fondue). A friend who has you over for margaritas and makes you laugh until you almost pee. A surprise party for a friend who reached 40! Giggles from a sweet boy who smiles when he sees you. Sharing favorite movies with a lanky girl who still curls up in your lap. Marveling over an almost 3 year old who you can't convince to choose something besides spaghetti and meatballs for her birthday breakfast. A ministry that is growing with dear friends. The possible chance to meet a new life in Salt Lake. And many, many more, texts, emails, phone calls, visits, passing hellos, quick hugs, promises to get together. When we lack the ability to think past the next day or hour, we take big gulps of the good times and the experiences we share with one another to nourish ourselves when we need it. It feels like I have heaps of reserves of good things to fuel me and with a little tweaking, we will be good to go!

God Blesses Us

I'm not going to lie. I was pretty down about my post last week with Johnny needing help physically and showing more lags in his physical development. As much as I understand it, my heart still hurts for him. I'm a mother who wants the best for her child. I feel I have been patient and I feel that we work, it's hard to see a lack of progress. It can be discouraging in spite of all the wonderful and amazing things we see with Johnny in our lives. 

As I felt down on myself, we had speech on Monday. And it was a great day. Not only was Johnny engaging and very verbal (which gives them a better idea of where he is at and what his needs are), but he actively participated in a game. A full on game. Granted it was peek-a-boo, but it was no ordinary form of peek-a-boo. We all (therapists, girls, and myself) sat in a circle around him and have him a towel. After playing a few rounds with him, we modeled him giving the towel to someone else and then pulling it off their heads. Not only did he catch on but he caught on quickly. He would pick and choose who he wanted to play next and would hand them the towel. He made deliberate choices and gave us the tools to play the game. Then he laughed and giggled as we played along. I know it may seem simple to anyone else, but this is huge. Not only is he handing stuff to us (which we have been working on), but he is making choices and participating. It's wonderful and our Speech Therapist was almost as pleased as this proud mommy. 

Then today, with our developmental therapist, Johnny shined again by working really hard to put the toys correctly together to make them work AND he cleaned up the toys when we were done. He needs to work on fine motor skills, sure, but the fact that he caught on to the pattern of the toy and where the item was supposed to be placed within a few minutes is amazing. I am so pleased. 

I don't know what all of this means, but I do know that right now, he is learning and I need to foster that. Whether his cognitive abilities are shining through or he is merely in the midst of a cognitive growth spurt doesn't really matter. All that matters is that we keep working together and we celebrate those small victories, especially the ones that we have been plugging towards for weeks. I feel like I've been holding my breath for a month or more to see if any of these skills would take and now I have let it go. 

Of course new breaths remain to be taken! Onto the next batch of skills! And that darn standing and walking one too!

Stress

Johnny is going to be evaluated for physical therapy in the coming weeks. I have such mixed emotions about this. On one hand I am grateful for the extra attention my boy is getting. He has needs, his needs are getting met. I have had a perfect experience with ECI so far and this is another example of it. I mentioned it to our OT, she said she was already thinking of submitting a request, and that's all it took. There was no fighting, no justifying, no begging, no pleading which is great. At minimum this would be two extra times that experts are coming in to work with us meeting our goals. 

That's two extra meetings. I'm starting to get a little overwhelmed (does that mean I'm just whelmed? Wait, I'm not in France, never mind) by all the extra. He is such an easy kid, except all the extra stuff. Now, most of the extra stuff is really manageable and is simply a more deliberate version of what moms and dads do with their kids all the time. But there is a lot of it when you are talking about OT, ST, SST, and now PT. Throw in two older siblings, managing wearing glasses, making sure snuggles and love is high on the agenda, and life (which I am so good at filling), and I start to stress. Plus, it weighs on you. The thoughts of "Keep working. He will get it.  Just move forward. Do what you can." only takes you so far. And panic sets in really easily even though you know that nap on the couch with your son is just as important as the 90-90 sitting that needs work. 

It also means he is starting to lag. While that is expected, it's still hard to see. I'm so proud of his social and verbal development, but he is behind physically. And as much as my head says we would face that eventually, my heart still aches at the reality. He will catch up, I know that, but I'm ready for some progress now. In reality, it makes sense. He was (and sometimes is) so sleepy that it was (and is) hard to work with him. For the first few months of therapy, he would literally fall asleep in sessions. How do you work on tummy time with a kid who would fall asleep in any position? It meant lost months of progress and because it has to be a progression of skills and building, we are seeing effects now. 

In the end, I'll work out my schedule, push him further, cheer for his victories, and be grateful for the extra help, but for now, I remain torn. It's fuel though, fuel to push and to continue, and he is so worth it. 

Two Recipes

This past weekend, our small group got together to watch the Super Bowl and spend some time together as the "larger" group. We have had to split up into guys and girls because we are simply too prolific and keep having too many kids. There was little opportunity for Bible Study or accountability because we were always running around tending to the kids. So now we alternate Sundays for our split time. Occasionally, like Sunday, we all get together for something more fun.

I made two pinterest recipes to try out and I was fairly pleased with both of them.

The first were these brownies. They were definitely fudgey, but they were pulled out of the oven slightly before suggested time to keep them that way. They were very intensely chocolate and needed either a little less cocoa powder or some sort of salty aspect to balance them out. I also think that I would replace the chocolate chips for chocolate chunks next time. Would I make these again? Maybe. My sister in law who loves chocolate in all of it's intense glory would love these. But she probably wouldn't replace the chocolate chips for chunks, she would add both...


The second was S'Mores treats, which are similar to Rice Krispie Treats, but with Golden Grahams instead of Rice Krispies and the addition of chocolate chips. I used mini chocolate chips for this recipe. I thought these were good, they definitely tasted like a S'More and would be great for an outdoor activity or BBQ where you wanted a S'More, but didn't want the mess. That being said, I would rather have a Rice Krispie Treat. Especially this one...

I was excited to try two things off of Pinterest. There should be little "ribbons" you get for trying something you have Pinned. I would proudly bare these for the try!

New

There are many things I have learned on my journey through parenthood and being only a relatively short time in, I expect to learn a lot more. And as much as being mom to two beautiful and brilliant girls has taught me, being mommy to our sweet Johnny boy has taught me so much more. 

For years I looked at parents of kids with special needs with pity. I felt pain for them, I felt regret for them, and, regrettably, I felt shame for them. I misunderstood so much of what it means to be a parent of a child with special needs. Unbeknownst to me, the fierce love strain of a mother runs deeper than the shame. I never understood the smiles, the laughs, the ordinary-ness of life that I saw around me in families of people with special needs. I thought it was a facade and all I, mistakenly, understood was the weight of carrying around that act of happiness when surely they were experiencing nothing but crushing sadness at all times. 

This side of things is better. You understand so much more the smiles and the giggles and the carrying on with everyday life. Partially because life carries on with or without us and you become accustomed to your new normal. But partially because of all the love you feel in spite of the special need. I love Johnny more than I could have ever imagined loving anyone. And he has opened my heart in such a way that, by extension, I love his daddy, his sisters, our family, and our friends all the more too. And I think it is ridiculously hard to explain to others everything that entails. There is so much we do that is hard. Johnny himself is the easiest child as far as day to day needs and personality. He, stereotypically, just goes with the flow. But as I have chronicled on here numerous times, having a kid with special needs means a lot of extra, and we aren't just talking chromosomes. Not only is it hard to keep track of all the specialists, all the appointments, and all the therapy sessions, but it's hard to work with Johnny. He tires easily, he sleeps a lot, and his stubborn streak is emerging with every passing day. With the girls and him and all the things I want to do, need to do, and feel compelled to do, I miss opportunities. There are times he doesn't get near as much work in as he needs, the girls too. And I totally forgive myself for it. But it weighs on my heart and my shoulders. THAT is what weighs on me. The quintessential mom burden of "am I doing enough". And with every worry, that deep rumble of love rises in my heart and says "you sure do love your son". 

The milestones aren't being met. We work at them, but it isn't the big deal I thought it would be. We try, regroup, and try again, sometimes pushing, sometimes allowing for laziness, and sometimes collapsing into snuggles and kisses because that's just as important as crawling across the floor in a perfect four point crawl. Instead of being neurotic and obsessed with timelines and which month it should happen in, we are calm and focused on the tasks at hand. And when a milestone is met, it's so much sweeter than anticipated. The burden that I thought milestones would be is light, what weighs on me are the things I have to cast aside, will he be happy, will he be good, and will he be loved? And when I worry about those things too much, God stills my heart all the while that rumble returns, reminding me that, for now, our family and friend's love for Johnny is enough. 

I never feel shame at what Johnny is or isn't. I am so proud to be his mommy. And even for our friends and family that love us and love him, I think it's hard for them to understand exactly how that feels. It's a different love and a different pride that is unique to being parent to a kid with special needs. I still don't know for what purpose we were chosen as his parents, but, unpredictably years ago, I am so happy and honored that it was and is our role. I bare no facade of happiness in being mom to a kid with special needs and I assure you that this is no act. The smiles, the laughs, and the wonderfully amazing ordinary-ness of life is as genuine and natural as it seems.