.perpetual mourning.

A few years ago another special needs mom posted an article about the grief that parents experience when they have a special needs child. 

They call it perpetual mourning. Perpetual because its not something you work through and process and move on from. Its constant, ongoing, never ending.

And honestly, I couldn't think of a better way to describe it. 

Each milestone missed, each set back or plateau, each new piece of equipment, and everything else that glares at you in the face every single day to remind you that your child has special needs and the expectations, dreams and hopes you had for your child are radically different now.

Laying on the floor playing with this toys because therapy and walking wore him out!

For the most part I am able to recognize when I am grieving and to take the time to cry, talk, write, and process those thoughts. I do best if I can really let my guard down and let it out. It allows me to work through those moments and then get back to advocating, working with, and loving my children.

But the grief and the sadness of the difficulties and trials the boys face never end. And they look up at me while they are struggling to do even the simplest things and ask for mommy to help. For mommy to make it all better. For mommy to carry them or help put a puzzle together, etc.

The best daddy in the world sitting on the bench with Parker watching his cousin play t-ball since Parker can't walk to play on his own.

But I can't always do everything for them. And I want to be able to fix their frustrations and their challenges and I can't. All I can do is encourage them, teach them, help guide them, and try and make things possible for them.

And there is nothing harder to do as a mom than to sit by and watch them struggle knowing I can't fix it. 

I feel so helpless.

When Parker was first diagnosed with Joubert Syndrome in 2011, I was referred to the foundation's website as a resource to learn what Joubert is all about and what could be expected of the future. Because the future was and is the scariest part in all of this.

Walking back from the pool after swimming. 

 I remember reading that most kids with JS didn't walk until they were 4 or 5 and some never walk at all.

I think this part hit me harder than everything else I read. 4 or 5 years old?!

And here we are 2 weeks away from Parker's 4th birthday and he is still not walking independently. Sure he uses his walker to get around in short distances and he has absolutely made tremendous progress in all areas over the last 4 years, but still the reality is that he isn't walking and it is still going to be awhile before that comes true.

And this is when the perpetual mourning surfaces it's ugly head yet again. 

The reality that Parker is stuck inside his little body and is so limited by what his low muscle tone will allow him to do. That I still have to carry him around everywhere, that he yearns and strives to do the things other kids his age do and he can't, that I have to carry a double stroller, single stroller, and a walker in my car just to get everyday tasks done.

He spends hours upon hours in therapy, works harder than any other kid I know, and will try and try again despite fatigue and lack of success. And it doesn't seem fair. It doesn't seem right.

Horse therapy. Hoping this brings some new successes for Parker.

I get discouraged and sad and feel like I will never see my baby boy walking around in a fully functioning body. And it honestly breaks my heart into a million pieces and leaves me with literal heart ache.

But luckily this grief doesn't completely consume me everyday, and I am able to function in the way that the boys need from me. Because I am their able body. I am their hands and feet since they cannot do it on their own.

With only a few more months before baby girl joins us, I am beginning to get anxious of what that is going to look like. How I am going to function with 3 children- 2 with special needs and possibly another? What is this going to look like to do daily tasks since I am only one person and will have 3 people dependent on me for their every need?

The reality of how I have to grocery shop. Hard to fit groceries in the cart with two little boys as well :)

I get overwhelmed, I get scared, and I grieve that reality of what to expect. 

But the grief is healthy and a part of the process. Because without it, I wouldn't be able to advocate the way I do. I wouldn't know what to fight for regarding their care. I wouldn't be able to love them the way that I do. And I wouldn't be able to recognize the abundant blessings that they bring to my life. 

Because no matter the amount of mourning and grief life with special needs brings, the blessings are so much greater and my life is so much more abundant and meaningful as a result of being their mom. 

They say the days are long, but the years are short. And each trial brings it's difficulties but the growth that comes after makes looking back that much greater and brings renewed hope that we will eventually get there and there is light at the end of the tunnel.