Each year so far, her birthdays have been very different for me. The first year, I was a blubbering emotional mess, reflecting on the fearful weeks after her birth and leading up to her heart surgery. Last year, I felt excited, hopeful and happy. Happy that I no longer felt so raw, happy that the over-riding experience had grown to be so much more than my initial fear.
And this year it's a little of both. I don't know... I know Cora is only turning 3, but in the world of special needs, the third birthday marks a turning point. The child ages out of the school district's Early Intervention or Birth to Three program, and begins either an IEP (Individualized Education Plan) or in some states, like ours, continues with an IFSP (Individualized Family Service Plan). The major difference is that services most often transition to a preschool setting.
In our case, for various reasons Cora won't be starting preschool until the fall, so she'll be continuing to get services at home. It might not seem like much of a difference in her case, but the biggest change is that she will be getting a whole new team of teachers and therapists.
Today was Cora's last visit with her Early Intervention teacher, Cami. She's had a handful of other specialists in the last 3 years; a couple different Occupational Therapists, a Physical Therapist and a Speech Therapist. But Cami has been her constant, her teacher, and her friend.
Cami first came to help us when Cora was probably about a month old, just a week or two out of the NICU. Little Beanie was tiny and seemed so fragile, hooked up to an apnea monitor, using an NG tube, and not doing much except snuggling, sleeping, and struggling to eat.
I was so scared. I had this beautiful girl that I had fought to get home from the hospital, but my life consisted of constant unsuccessful attempts at feeding her, endless hours of pumping and milk processing, and lugging her to doctor's visits several times a week. And fear. So much fear. Knowing that I'd be looking for her heart failure to worsen scared the crap out of me. The cardiologist and neonatologists all talked about it like it was no big deal. But how was I to know when her worsening symptoms got too bad? How was I to know anything, really?
And how the heck was I going to get through the months leading up to the biggest fear of all: her open heart surgery?
I was desperate to do everything I could do to help Cora. I wanted to keep her from getting too far behind before her surgery. I wanted to be the best mom/therapist I could be, to do it all, to learn it all, and to give Cora everything I could. It doesn't take long to get burnt out on that pretty fast.
But Cami was there through it all. Initially she offered support and a listening ear, and some suggestions here and there to supplement the many specialists constantly barraging us with instructions. At first I felt like the suggestions couldn't possibly be enough; that I needed to be able to do MORE, that there just had to be more.
And gradually, there was more. As Cora grew, recovered from heart surgery, and her strength and abilities increased, we had more to work on, more ideas, more activities that seemed like "therapy." And that was all well and good. But it wasn't long until I realized that Cami was offering us something much more important than therapy: her constant support. She gifted us with her willingness to listen and yes, to offer suggestions, but most of all, she continued to tell us that what we were doing was enough.
There is so much pressure to be a super parent. When you feel that your child's needs are great, that desperation to do so much more is awfully strong. I certainly have felt that way at times in Cora's life. But there comes a time when to salvage yourself you have to realize that you are enough. And I am glad that I had someone to help me learn that early on.
I can't thank Cami enough for all that she's given us these last 3 years. For always being positive, for always listening to me, and for always believing in my girl. There are many people who are trained to work with children, and many of those people are highly skilled. But to find a person who is not only skilled but that also truly cares about your child is a blessing, indeed.
So today, as we said goodbye to Cami and she left our house for the last time, it has been a sad day for me. I've had to wipe away tears more than once. I know that it won't be goodbye forever. I know we'll keep in touch and probably see one another at community events, but it won't be the same.
When Cora was a baby the idea of 3 years passing by seemed impossible. Just getting through the day-to-day seemed like an insurmountable endeavor. But it has happened. She'll be 3 in just a few days. And she is moving on and growing up. But my, it does hurt a little.
|We will miss you, Cami!|