Brenna had her Early Intervention annual evaluation this week. We get all of our therapy services – occupational, physical, developmental and feeding – through the state’s Early Intervention (ages 0-3) program, so we have just one more year before being transferred to the school district.
It’s a funny thing to be told over and over again about what your child can’t do. The meeting as a whole was very positive, and we love our therapists. They are constantly encouraged by her progress, and her progress overall, though delayed, is really on an upward trajectory as she develops new skills each week.
But this meeting was, as it was called, an evaluation. Which means our therapists had to follow a specific system for evaluating her abilities and inabilities. Which means that practically the whole meeting consisted of “delay…delay…delay.”
I have to say now that I am hardened to her “inabilities.” Previously I would find so much delay frustrating and alarming, I have stopped comparing. (or at least greatly reduced my comparison practices.) I don’t mind what she can’t do yet, because I am so proud of what she can do, and what we have worked so hard to achieve.
Tell me she is delayed, and I’ll tell you how far she’s come.
There is a 24-month questionnaire I’m supposed to fill out (or if you’re my caseworker reading this, I’ve already filled it out 🙂 ) I’m sure many of the answers will be “no.”
Does your child greet people with hello? No, but she waves like crazy to anyone in her path, and it lights up their day.
Do you and your child enjoy mealtime together? No, not usually, but when she licks off the pizza sauce from my entire piece of pizza like she did last night, I want to get on my knees and thank God that she is actually starting to eat.
However, the last question of the survey is: what do you enjoy most about your child?
It reminded me of a question I answered recently for a medical student about a project they were doing on Harlequin Ichthyosis: “What is the best thing about HI?”
I’ve never really thought about it like that. What is the best thing, what do I enjoy, about my daughter, because of and despite her skin condition?
I love our bond. Most of the time, Brenna isn’t completely content until she’s around me or in my arms. While that can be exhausting and frustrating, that is also the kind of connection that comes from so much time together. That comes from me being her protector, her advocate, her caregiver. And that’s special.
I love her joy. She is “on guard” – very cautious and discerning – a lot of the time, but the absolutely best time is when she lets go of her fears and rolls around on the floor laughing like a lunatic as I tickle her belly. Oh that laugh. And that toothy smile, her eyes full of sparkle. It needs to be bottled up and shipped out to the world.
I love seeing the world from a new perspective. I love finding happiness and contentment in the little things. I love having a stronger relationship with God now. I love being grateful for all that I have, and being truly happy for others for what they have. I love encouraging both of my children to do their best and to be whoever they want to be and that I am proud of them, and knowing that I truly mean it. And I really love when Brenna sees herself and signs “beautiful,” and I can tell her without any doubt in my mind that yes, she is so beautiful.
This post hits home for me. My son has fought his entire life just to keep breathing. He has two progressive conditions of the heart and lungs…both of which are often lethal. Both of his have also been very aggressive. However he fights through the countless surgeries and procedures and is the happiest little boy when he is feeling good. The amount of time that he has spent in the hospital and the energy that was used up just keeping his heart beating has put him way behind too. It was really hard at first concerning the milestones he was missing…my best friend had a baby two days after I had my son…plus I worked with her Mom so it was extremely hard hearing everything she was accomplishing and my son still couldn’t hold his head up. But now…I don’t compare them. I mean it’s hard not to think about what he should be doing sometimes, but I love that I celebrate the fact that he actually just pushed his own arm through his shirt instead of me doing all the work. My favorite line of this post is the quote you have on Facebook. If you don’t mind, I may use it in one of my posts for my son…giving you the credit of course.
You are an inspiration to me.
Carrie
This post hits home for me. My son has fought his entire life just to keep breathing. He has two progressive conditions of the heart and lungs…both of which are often lethal. Both of his have also been very aggressive. However he fights through the countless surgeries and procedures and is the happiest little boy when he is feeling good. The amount of time that he has spent in the hospital and the energy that was used up just keeping his heart beating has put him way behind too. It was really hard at first concerning the milestones he was missing…my best friend had a baby two days after I had my son…plus I worked with her Mom so it was extremely hard hearing everything she was accomplishing and my son still couldn’t hold his head up. But now…I don’t compare them. I mean it’s hard not to think about what he should be doing sometimes, but I love that I celebrate the fact that he actually just pushed his own arm through his shirt instead of me doing all the work. My favorite line of this post is the quote you have on Facebook. If you don’t mind, I may use it in one of my posts for my son…giving you the credit of course.
You are an inspiration to me.
Carrie
Yes, Brenna is absolutely beautiful! I so enjoy your posts about your family!
Yes, Brenna is absolutely beautiful! I so enjoy your posts about your family!
I so love this post! I too have a delayed little one and I too look at how far she has come. I have no family around me so when I go to visit and they see my daughter and she can’t do what her cousin can do ( they are 3 weeks apart) I just say well I’m so happy with how far she has come. My little Emma is my 5th child so sometimes I can’t help but compare her to the others but than I stop and tell myself “now you know she’s on Emma time and she will eventually do it when she is ready to do it, and she will do it like she has been doing it this whole time”. Thank you for sharing your blog and posts with the rest of us. Thank you for sharing your family with us and Thank you for sharing your BEAUTIFUL Brenna with us.
I so love this post! I too have a delayed little one and I too look at how far she has come. I have no family around me so when I go to visit and they see my daughter and she can’t do what her cousin can do ( they are 3 weeks apart) I just say well I’m so happy with how far she has come. My little Emma is my 5th child so sometimes I can’t help but compare her to the others but than I stop and tell myself “now you know she’s on Emma time and she will eventually do it when she is ready to do it, and she will do it like she has been doing it this whole time”. Thank you for sharing your blog and posts with the rest of us. Thank you for sharing your family with us and Thank you for sharing your BEAUTIFUL Brenna with us.