First a short explanation of EI (Early Intervention) - EI is an array of services for children from birth to age two or three (depending on your local program). In our case this is a community program designed to maximize the developmental potential of children while providing support to the family.
Addison and Blake both automatically qualify based on their history of Chronic Lung Disease (preemie lungs), Low Birth Weight and IVH (Intraventricular Hemorrhage) and will stay enrolled in the program until age three based on these things (in the state of Maryland). They were enrolled in the program upon their discharge from the NICU and an evaluation was done to determine their developmental level and what services they would receive, they are then re-evaluated at marked intervals to see if how they are improving and if any changes should be made to the services they are receiving.
Addison currently gets PT (Physcial Therapy) - twice a month, OT (Occupational Therapy/Feeding) 1-2 times a week and Special Instruction (think pre-school skills)- once a month, and recently had her annual review. It did not go as well as I anticipated.
She is currently 18 months old (actual age) with an adjusted age of 15 months. She is measuring mostly measuring in the 11-12 month range developmentally. In one area she did have some scattered scores in the 18 month range (Cognitive Skills), language she has emerging skills in the 14-16 month range and her Social Emotional Skills measure on target for her adjusted age of 15 months.
For some reason (
denial) as her mom I felt like she was doing better then this. I mean the truth is, she is doing GREAT. She has made HUGE progress and CONTINUES to move forward. The hard part is that she isn't really closing the gap between her "actual" and "adjusted" age, and is lagging even further behind. It was also painful to hear that she most likely will face a learning disability and likely will not be able to keep up with her peers as well. All that being said, with appropriate resources and hard work, she will eventually "get" it... she is just going to have to work at it more. (What else is new, right? It's been this way since day one.)
I guess the thing is though, I just don't want to hear that my child is going to struggle. Nor do I want to SEE my child struggle. She is so bound and determined to do things and she doesn't give up when she doesn't get it. She just keeps going and gives it another shot. But to think of the things she may come up against in the future and know the pain she is likely to feel when she struggles to keep up, hurts. Every parent only wants what is best and wants to see their child succeed. I know she will succeed and I know she will work hard at it.
Fact of the matter though is that Addison has already defied the odds. She is my baby that wasn't supposed to live. The baby that should be showing signs of Cerebral Palsy and isn't. She is the baby who we weren't sure would learn to eat, she's eating. The baby who who we thought would never learn to suck from a bottle or straw, and she now proudly carries her own straw sippy cup. The baby who struggled to make sounds and words, and she has now has an emerging vocabulary. The baby who we wondered if she would ever walk, she is > - < this close! She is doing it "on her own time" not our time, and ya know what... I am ok with that.
Does that mean that I don't/haven't/or won't grieve for the delays or the heartache of hearing what "could be"? Nope. In fact I needed time to grieve for this as silly as that may sound. It's hard to describe. It's almost like this loss of innocence maybe? Like knowing she will struggle with certain things. And I have to admit, sometimes I feel like I have failed her, like part of this is my fault. I know in my heart that I have done it all, and done more then some EVER would. And I have done it will pride, and will continue to do it with pride. I am proud of every single, teeny tiny/huge, accomplishment she makes. Every.single.day. that I get with her makes me even more proud of her fight.
Addison, please know that your father and I will give our all to give you every thing you need to succeed. We will work together as a team to help you reach your goals and Blake will be there to help too. We've all got your back. Continue to be fearless and know that you will get there. Where ever there may be. And when you are ready to do it on your own and spread your wings, we'll be there too and will let you fly. But know we will always be a phone call, email, text, or Skype message away to do whatever we can. I have no doubt that you will one day be a highly successful lady. No doubt in my mind. I pray I am half as awesome as you baby girl. <3
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I leave you with this... It says it all. Her - the first time she finished a whole container of baby food.
And Proverbs could not be more true. |
