Long days, with what feels like even longer nights…but so worth it. One day he won’t constantly cry and whimper for the things he needs, or scream and cry all evening, because no one is understanding what he is trying to communicate. One day he won’t be constantly frustrated and even often angry and hard to console, because he will have the words, even just one or two, to communicate what he needs. One day, our short evenings together will be filled with his precious little voice, and not his tears of frustration. It will come. I don’t know when. Maybe soon, maybe not, but when it does it will be a good day…I love every exhausting, heart-breaking, or wonderful, beautiful moment with him. But I want that day to come for him soon, when we can communicate with him. Imagine trying with all your might to communicate and even the “words” you know don’t come out right. All of the kids around you, many younger than you, have 50-100 or even more words and phrases, and your mouth/brain just can’t do it, but you’re trying so hard and it feels like no one is listening or hearing you. It isn’t that they can’t understand your “baby talk”, it’s that your mouth literally doesn’t form the words, and your voice doesn’t say what you want it to say. You can tell me, “he will get it” , “it will come” ,
“he’s okay…quit worrying”, “lots of kids talk late”, but I wonder, have you lived weeks at a time watching your child become increasingly frustrated to the point of fits because he forgot how to motion or make a sound that correlates to “bite” or “drink” at 2 and a half years old? Have you picked up your child from daycare after a 10 hour work day for almost 8 weeks straight now, and he literally cries and fusses the rest of the evening, because you just aren’t understanding what he is trying to “tell” you? I do know that many of you have. And while I am so thankful for his health, and this seems so trivial, I would be lying if I said, “it’s no big deal.” I would be doing my child a disservice if I did any less than exhaust myself to the point of tears everyday trying to help him build language and communication skills that he can use to ease his frustration.
I share this because I know that I am not alone. This baby is a beautiful blessing and I am so thankful, but his struggle is real and it isn’t just going to get better, and it will most likely never be over for this sweet boy. Yes, he will be “fine”, and he WILL learn to talk, but my heart doesn’t break for me as his mother who loves him so, so dearly that I am proud of any and every sound and effort he makes, my heart breaks, because the world won’t love him the way I do and see the positive side. My heart breaks because the progress is so small for so long and then, he makes big gains, but loses large pieces of what he already knew, and he is frustrated even more by that. My heart breaks because to you, he is a sweet, adorable little boy who is just a little behind, but through my eyes, he is MY sweet, adorable, little boy who’s daily struggles I live with him. One of the two greatest gifts I have ever received, and I know what his statistical future holds. I know that there are certain things that are and certain things that don’t have to be, but I also know that I am this baby’s first line of defense against this syndrome, these delays, these struggles, this world…and while I sadly feel like I have abandoned my dedication to anything I held dear before he was born…my career, my interests, my own health, my own emotions…I still feel like I am failing him. I don’t give him enough. He needs more. He does. That isn’t a question. He needs more mommy. And this…this is my true heartache. I love him dearly, but I fail him daily. Just like I love HIM, our Father in Heaven, so, so much, but I fail daily to be what He wants me to be on a regular basis. He gives me so many more chances than I I feel like I deserve! I am truly so thankful.

Sometimes, joy and pain are a simultaneous emotion, and the roller coaster never really stops, and you know you would rather ride the ride with all of the ups and downs and twists and turns, than ever get off anyway, but the effects of it are still apparent. There are thrills and screams around every turn, and it feels like I am literally holding on for dear life most days. And when we do hit a plateau, it’s only long enough to catch our breath for a moment, before the ride is reeling again, thrusting us into more uncertainty and chaos than before. I’m certainly not unhappy. I’m not complaining. I’m not searching for sympathy by any means. Many of you have it much worse than I do. I’m really not searching for anything but understanding, and I’m really even okay without that. When you realize that the things that used to be my focus, or were things I was driven to do/care about, are now at the bottom of my list, to the point that they don’t even matter, it isn’t that I don’t think they are important or worthwhile, it’s just that I am finding that in my life, they have a very insignificant value compared to the daily task of raising my children and dealing with the things you don’t see. We all feel that way as parents, but it is a big step for this mom, this OCD perfectionist, this totally type A personality, to admit that I don’t always do the best I can at everything, actually most, of what I do anymore. Plain and simple. But I always give everything that I possibly have in me to give. Sometimes…often these days…there isn’t much left outside of my home for anything else. Learning that there is a difference between doing “your best” and giving what you feasibly and realistically can ….it’s a lesson I wish it hadn’t taken me 35 years to learn. I am so grateful that God continuously extends me grace, and allowed me to be the mother of 2 amazing kids. It’s my favorite job in the world, and the one that deserves the REAL best of me the most, because I’m the only one they’ve got!