A letter to my son on his 4th birthday

My love, I can’t believe today you turn four! Sometimes it seems like we have lived two lifetimes in just these four years. So many lessons learned, so many fights fought, so many tears shed, and twice as many laughs had.

There is no doubt becoming a parent changes you. There is no question becoming the parent of a child with s a disability changes everything. I am not the person I used to be before you came into our lives. And although at times I’m still trying to figure out who that is, I know I am a much better person because of you. You are amazing, and you are perfect, and we would choose you a million times over again my son!

Thank you for so much joy, and so much love and for all of these life lessons:

I’ve learned that mother’s intuition is the real deal. Always listen to it.

I’ve learned that not all children learn the same way. Some need to be taught to sit, to attend, to play, even to communicate.

I’ve learned that some kids are on their own timeline. And that some milestones never come for some.

I’ve learned that even if you need all the help, that help is not always freely given.

I’ve learned that sometimes you have to fight for everything. Fight for appointments, for services, for insurance coverage, for school placements, even for your given right to be in this world with everyone else.

I’ve learned that the world is not as kind as it should be to those who need it most.

I’ve learned that we are strong beyond what we believe, and that we can overcome even the things we fear the most.

I’ve learned that there is reason to celebrate each day in the smallest of things.

I’ve learned that the mightiest fighters, are often the smallest ones.

I’ve learned the true meaning of acceptance, patience, empathy and compassion.

I’ve learned that no one, no one, can set limits on you or your achievements.

I’ve learned that love can truly conquer all.

And that love needs no words.

Today I honor you and our beautiful journey together, my angel. Happy birthday! Love you to the moon!

Our winding road back to preschool.

My son, two years ago you were about to make your official preschool debut. You were almost 22 months. I was so happy to have finally gotten you into your sister’s school. I had been begging for a spot since you were 15 months. I felt you badly needed to be in that environment with other children, I guess I already had a hunch.

This was going to be so great! You would be with your sister all day, she could walk you to your room, watch over you on the playground, and help you on your school journey. It was a happy time, but also a challenging one. You had just started speech and occupational therapy a few months before. I was struggling. It was becoming clearer and clearer that we were dealing with more than just delays.

The school year started and things were going well for you. You were quiet and calm back then. Yes, you were learning at a different pace than the other children and you required more support and redirection, but you were sweet and easy (you still are!). Things were not so well with me then. I worried so much asking daily about your progress. Were you playing with toys? With the other kids? Were you participating in all the activities? Sitting at circle time? Were you saying any words? Pointing?

And then a few months in, we had the diagnosis. Two weeks after your second birthday. A diagnosis I knew was coming six months before. And then our plans to have you in school with your sister began to change. We took you out for two months to do an intensive therapy program. After you came back, you were taken in and out for therapy in the mornings and afternoons were set aside for more therapy. We did everything we could to keep you in that setting, but you weren’t ready for it then.

After that year, it became more difficult to find the right educational setting for you. And although it wasn’t our first choice, we stuck to just therapies. But we had a goal to get you back into school. And after many ups and downs, we were able to get placement in a great inclusion program and a wonderful school. And here we are, a couple of weeks from going back to pre-k. If this works for you, you will have some stability in your schedule for the next two years. Stability. Something we haven’t really had since your diagnosis.

What we have learned since your diagnosis is that a lot of this is trial and error, and we won’t know what is going to work for you until we try. But I am so scared my love. I worry if this is the right place for you to thrive. I wonder if you are ready for this. I worry whether they will be able to give you the right support? I wonder if you will like it. I worry that if you have a bad day, or someone is mean to you, you will not be able to tell us. I wonder if you will be safe and happy. I worry about so much.

But we are also so very excited for you. We are excited about the possibilities. We are excited to see what you are able to do when you are allowed to flourish without so much structure. We are excited for progress, and new friendships, and school activities and so much more. We are hopeful. This is a new beginning for us after a winding road. But if we find that you are not quite ready to be there yet, then we’ll go back to the drawing board and make another plan. But regardless of how this turns out, please know how much we love you and how incredibly proud we are of you and all the hard work you have done just to get back here.

Why I Chose to Write

Photo by rovenimages.com on Pexels.com

I have been thinking of writing about our journey since before Lucas’ diagnosis. There are so many emotions that go into parenting a child that is not developing typically. Looking back at the beginning, when I first started to worry about Lucas, what I mostly felt was fear. I obsessed about everything he did or didn’t do, and would try to talk to those around me about it. But no one really saw what I saw at that point, and it was a very lonely place. I wanted to write for myself mostly to process my feelings and my emotions. Writing things out is cathartic and I needed an outlet for these thoughts and worries that were consuming me, eating me up alive.

Then, as we began to come to terms with the diagnosis, I wanted to write openly for anyone willing to listen. So I decided to start this blog to tell our story. A story that is different and yet so similar to many others. I wanted those who know me to hear it from me, in my own words. Because I am not the same person I was before my son’s diagnosis. I am forever changed by this experience.

I hope that other parents going through something similar with their children can relate to my writing and connect by sharing in the joys and challenges of raising a child with a disability. And for those that will never understand what we are going through, but want to learn more about it, I hope that by opening up our lives we can raise awareness and greater acceptance for our children.

But now, I mostly want to write for him. For my son Lucas. Because he is the center of my universe and I want the world to know how hard he works, how proud we are of him, and how loved, and beautiful and special he is.