I sit in my living room, which is now full of strangers, thinking that this has to be some nightmare that I will wake up from. I see Haley on the steps playing quietly by herself. Tears fill my eyes. Is this her life now? Will she have to sit on the sidelines while strangers come in our house and examine this baby?
I observe as they do test after test on my newborn. They move her arms and legs which instantly flop down. They make loud noises to see if she responds. They ask to watch her nurse to see if they can determine why she won’t latch. I was up all night with her trying desperately to get her to breastfeed. I am severely sleep deprived, and if I am honest, I am still in a state of shock. I cannot do this. Everyone keeps telling me that I can, but I am not sure I believe them. I feel utterly alone.
The therapists and coordinator leave after a couple hours with their recommendations for which therapies we need to begin. How can a newborn need therapy? Thank God, my cousin is here. She works in this field, and is familiar with the emotions I am experiencing. She tells me that this will become our new normal and that it won’t always feel this overwhelming. I still want to run out the door and never look back.
Fast forward to now. Those strangers I was talking about…. Well, they certainly are not strangers now. They have become a crucial part of our family. Our coordinator has been there for me since the day Sienna was born. She has provided resources, insight, and support at every turn. She has been a vital piece of our puzzle. She took the time to find the right therapists for Sienna. Not everyone was a great fit, and she assisted me patiently until I found the team that worked best for our family. And, oh what a team we have.
Imagine if someone visited your home on a weekly basis for over two years, with the intentions of helping your child. I don’t know if it is the therapists we have or the time they have spent in our home, but they are so important to our journey. They have been a support system for me. Sienna’s nutritionist was pretty much my therapist during that first year of Sienna’s life. I called and texted her so many times, and every time she responded immediately with a resource. I could not even tell you the amount of times she’s seen me cry. Then there’s our physical therapist. Every time she arrives at our home, Sienna’s face lights up with joy. This woman is one of her best friends.
Yesterday, our coordinator and physical therapist performed an evaluation on Sienna. It doesn’t seem so foreign anymore. In fact, my cousin was right….it has become our new normal. I expected this to just be another evaluation until our coordinator pulled out the Transition Handbook and started talking to me about Sienna transitioning out of Early Intervention and into the world of IEPs. An IEP is an Individualized Education Plan.
When Sienna turns 3, her EI services will be cut off. This is how it works. It is something that has terrified me for a long time. There will be a whole new set of challenges for us. I will have to fight for inclusion. I will have to fight for services. I will need to prepare a binder and insist that my child is seen as valuable. I will have to do all of this without the support team I have had in place since Sienna rocked my world.
When our coordinator mentioned it, a pang of fear hit me immediately. Again, eyes watering and tears flowing, but for completely different reasons. I cried at the idea of them being in my house examining my newborn baby and now I am crying at the idea of them leaving us. The irony is not lost on me. Until you have sat in my shoes, you have no idea how this feels.
I know I will tackle this new challenge and I will continue to advocate for my girl. I will learn all I need to in order to ensure her success, but I am still allowed to be sad and scared. Transitions aren’t just hard for kids.
“If you are successful, it is because somewhere, sometime, someone gave you a life or an idea that started you in the right direction. Remember also that you are indebted to life until you help some less fortunate person, just as you were helped.” -Melinda Gates
Oh I feel you!