Dear You,
So
your baby was just diagnosed with laryngomalacia. Can you pronounce it?
Don’t worry, I couldn’t either. In fact, it took me three months to
learn the correct pronunciation and spelling.
In time you will be able to spell it backwards. You will know more about this defect than
you ever thought possible. You will become someone we like to call a LM
Supermom. You will wear this title will honor. It will be a source of
strength in the darkest of moments...a reminder that you CAN and WILL
get through this.
Having
a baby with LM, TM , BM may be one of the hardest journeys you will
ever have to walk. And that’s okay. Do not be angry at this journey, it
is here to teach you. Let it teach you. If you allow, it will
provide you with a whole new view on life. A more simple, wholehearted ,
grateful for every breath kind of view.
Journeys have no end...do not spend your journey full of anger...instead, spend your
time focusing on the walk. Soak in the sunlight wherever possible, remain
graceful when your heart is full of worry and always be kind... your
journey is hard, that we know but someones journey may be even harder.
Friends
will leave and friends will come. Friends will leave because it is
their time to leave, not because their intent is to hurt you. Take a
deep breath and let them go as beautifully as you let them in. New
friends will arrive with hearts wide open. They will know how important a
hug and a hot, home cooked meal is. Hug them back, tightly. Be thankful
for the future with them.
Your
partner, he is scared. In fact, he is very scared. That anger he is
showing? That is him letting you know all those emotions you are
feeling, he is feeling them too. It kills him to see you hurt like
this... and there are no words to describe the pain HE feels seeing his
baby struggle like this. Let him know how you feel and what you need. He
doesn’t know what to do. He never thought he would have a baby with an
airway defect. You both can survive this but if he chooses to
disconnect and walk away, let him. Holding onto a relationship when its
time for it to end will only fill you of anger, bitterness and
resentment. Your baby needs ALL of you right now. You will be okay. You
will recover.
You
will grieve. Grief comes in all shapes and sizes...and it always seems
to hit you when you standing in line at the food store. Allow yourself
to grieve for the healthy baby you were not given. This is a normal process
... do not let anyone tell you different.
Listen
to your instinct. You know your baby better than any monitor or medical
test. Let your voice be heard and if a doctor speaks over you--find a
new doctor. Get to the best hospital.
Bills can be paid later, your child needs to breathe now.
Walk this journey with grace. There are going to be some high, high
mountains to climb and the rain will pour... choose to let the good
strengthen you while letting the bad empower you. Every step you take on
this journey will leave footprints your Pint-Sized Powerhouse will
follow. Show your child there is always a reason to have a Hope...anger
doesn’t make life changing decisions and the good always follows the bad.
You are an LM Supermom for a reason... stay strong and breathe easy.
Written by: CWL Founder & President Stephanie Hueston.
To learn more about Stephanie go here.