You stand on the edge of an ocean of uncertainty. The hot sun of anxiety and fear beating down on you. The cold water is refreshing but a shock to your system. As you look out at the water you can’t be sure if the next wave coming in will wash over you like a breath of fresh air, a welcomed relief from the heat or will it knock you down? Will it pull you under and break you? Or just toss you around and spit you back out as a stronger more confident and knowledgeable swimmer? Will it wash up the shore to consume your child? Or will it be just enough to alert help and send reinforcements?
Of course, the type of diagnosis you are seeking will play a roll in the size and intensity of the wave. But no matter what is happening with your child, the unknown of the wave is there. My son has taught me what a strong swimmer I am. I’m a fighter. An advocate. We have had scary diagnoses placed on the table as possibilities. We have seen many doctors and specialists. I’ve held him through countless blood draws, x-rays and testing. So many unknowns remain for our little man and there is sure to be more testing in his future.
I remember the day he received his FPIES (food protein-induced enterocolitis syndrome) diagnosis. I will never forget the details right down to what I was wearing. At first, it was refreshing. Thank God I wasn’t crazy! His bizarre symptoms had an explanation! We finally have a label. I could research and plan. Then the wave pulled me under. Sucked into the pits of Google researching and researching; driving myself crazy to try to make myself the new FPIES expert. Finally, I was spat out. My head broke the surface and I gasped for air. One step led to another and then onto another, and soon I was able to find specialists for his rare disease. The pieces came together. I was able to better formulate a plan for moving forward and take peace in the fact that the scarier diagnoses had been ruled out for the time being.
Not everything goes according to plan. Unfortunately, this process is a cycle. My own demons of anxiety and postpartum depression ally themselves with normal mom fear and create a terrifying all-consuming monster. Each time a new diagnosis is brought up as a potential culprit I have to fight not to be consumed by the undercurrent. I do my best to swim parallel to the shore….toeing the fine line of being prepared for anything and paranoid of everything. I’m sure you know how researching medical conditions can be online, try mixing in some medical anomalies and it can feel like being sucked into the undertow.
Sound familiar momma? Just know this: it will be OKAY.
YOU know your child best.
YOU will always be their best advocate.
ALWAYS trust your gut.
Document everything and don’t stop until you have answers. Feeling crazy? Wondering if you are good enough? I can tell you, if you are worried about being good enough and capable enough to manage your child’s care, then you are already doing an amazing job.
Keep your head above that water. Take care of yourself even when it feels like there is no time left in the day. But most of all, enjoy your child. Whatever their diagnosis is, don’t let it consume them. Don’t let it become their identity. It may be a large part of their life but it is not WHO they are. This is harder than it seems when you are constantly documenting, scheduling and traveling to specialists. But momma…
Notice their unique personality.
Notice their talents, strengths, fears and what makes them let out those irresistible belly laughs.
Notice THEM.
When the world wants that diagnosis to put them in a box and define them, fight to make the world see them for who they are as the incredible tiny human you know them to be.
YOU are their advocate.
YOU are their life jacket, warrior, peace, strength and joy all rolled into one rock-star mom.
You can’t support them if you don’t support you.
Ask for help.
VENT.
Find your tribe, your village, your people and lean on them. Online support groups can be absolutely incredible!
VENT.
VENT some more.
You will get through this wave. There may be more coming but they won’t pull you under. You’ve got this!
To follow our little man’s story check out his Facebook page https://www.facebook.com/Living-La-Vida-Lucca-2369903016563479/
