Vince Lombardi said “It’s not whether you get knocked down. It’s whether you get up again.” When we got our first assessment of Jackson a few weeks ago it knocked me down. Reading my son was at a 6 month development age was tough. I just wanted to stay down. But no matter how much it hurts, I always have to get back up, for Jackson. So I prepared myself for the rest of the assessments that were coming. All of Jackson’s therapists did an assessment to measure where he is developmentally. These assessments will help us determine what services he needs in the public school system when he is transitioned in a couple of months. Essentially they give us a starting point to develop goals for Jackson at school. The highest he scored was 9 months from his speech and occupational therapists. Luckily we got those assessments after I had gotten back up. Otherwise I may have been knocked down for a long time. Listen, I know Jackson isn’t where he should be. I’m not ignorant or living in some fantasy world. I know he is very delayed. It’s reading about his delays and inabilities that hurt my heart. To me Jackson is a beautiful, funny, active, ornery, laid back, happy, routine liking little boy who has selective listening. To be told otherwise is offensive to me! How dare someone say something negative about my child! It’s like when you believe you have the most perfect child in the world and you go to a teacher/parent conference and find out your angel is really a terror. You don’t want to believe it, but you have to face it. Facing reality isn’t always easy. At the end of the day though, Jackson is simply Jackson. My son. He may be nearly 3 years old but only a 6 - 9 month old developmentally. I am just thankful he is developing. He’s my baby and I love him with all of my heart no matter what. And no matter what, I always will.
Nice blog. I don't know anything about the medical issues but I think Jackson is just fine. Yes, he is developmentally delayed and probably won't be catching up. We all have our issues. Jackson will grow up to be a great guy and make his Motina proud.
ReplyDeleteStacey, your writing is so genuine and thought provoking. Every couple days I check and hope you ahe written something new. Every time I finish reading a blog I want to cheer for you and often I also ache for you. If someone is enduring a very difficult situation, I sometimes want to say they are very courageous. But I also know that the survival instinct in a good human being will drive a person to simply do what they need to do to 'survive' and ultimately thrive. A person is not behaving this way to be deliberately courageous per se. Well, whatever the term is--courage, or something else--you are doing it all with so much fine human character. And I like Jeff's comment, Jackson is just fine. What a beautiful boy. In the pictures in your blog, he radiates joy and scerenity in a way most children do not (although from the sounds of it, he has "occasional" moments that are far from scerene!) Keep on keepin'on, Stacey! You are to be admired for being such a great mom.
ReplyDeleteHI Stacey, i'm a member of the yahoo PMG group. My daughter Jenna was diagnosed at 7 weeks old. She's now 5 months. I've been following your blog for a few months now. It's simply wonderful. I've felt i can relate to some of the things you talk about. Thank you. Before leaving the hospital on our last stay our epilepsy nurse said to me - imagine your on a train and you're starting out on a mogical mystery tour - that's your life now. Both you and her inspired me to start my own blog jennaandmummy.blogspot.com, This week I told my friends about it (i was a little nervous of what they'd think). They've been really supportive. Likewise if you ever need somenone to chat with please message me. Take care. Kind regards Katy Swinhoe (& Jenna)x
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