I was recently chatting with a friend about the beginning. The beginning of our journey.
The unknown, the search for answers, then the diagnosis. The crazy list of appointments that felt like they would never ever end. The tears in the shower. The fears. And the support.
The overwhelming support of family members, old friends, new friends, and even strangers.
For us, the support was so powerful and far more than we could have imagined. We had people checking in on us, bringing us dinner, and showing up in countless ways.
And then life happened.
Life gets busy and crazy. Years go by.
Life goes on, but our struggles haven’t ended. Our need for support doesn’t end. The appointments, the fears of the unknown, the worries, the tears in the shower...those don’t end.
What does happen though is that we (as parents) get so good at carrying the load.
We get stronger and somehow carry more than we ever imagined.
We get so good at showcasing the great days, highlighting the “wins,” and sharing all of the triumphs.
We get good at saying things like he’s stable. He’s healthy right now. He’s so happy.
And we don’t say things like I haven’t slept a full night in 6 years. I’m terrified of losing him.
We are struggling with anxiety and behavior. I’m struggling. Bathtime is getting difficult..carrying him is getting harder and harder....and so much more.
Because it’s been over 6 years.
And we should have a handle on things, right?
But let me tell you that we don’t always have a handle on things.
Some days it feels like I am thrust back right to the beginning.
We are still parenting that severely developmentally delayed, medically fragile child from the beginning.
We are still trying to navigate the world of unknowns and fears.
There are moments that the load is too heavy to carry alone.
There are days when the idea of forever is an enormous thought to think.
There are days I feel forgotten and alone.
The only thing that has changed for us is his age and our ability to carry the load.
You may be in the same situation.
And whether you are one year into the journey or 10, I want you to know that you aren’t forgotten.
I see you. I know that the struggles haven’t ended.
I know that your fears are still nagging you in the back of your mind.
And I know that even though you have gotten so good at carrying the load it’s still incredibly heavy.
I also know that sharing the load and acknowledging the struggles you face takes nothing away from the immeasurable love you have for your child.
It’s hard. Some days are harder than others.
And although you may feel forgotten along the journey, know that you aren’t, know that there are other moms like me carrying the load.
And on your hardest days, I’ll gladly add to my load if you promise to do the same for me.