If You Could Have Given Yourself a Piece of Advice at the Beginning of Your Journey, What Would It Have Been?

We have all learned so much along the way, and I don’t know about you but there are so many things I wish I could go back in time and say to myself after the diagnosis. Some of us are veterans in some ways and have it figured out for the most part, but there are many of us that are just beginning the journey of having a medically fragile child. We believe that we are better together, stronger together. What do you wish you could’ve said to yourself at the beginning?

“Even though you feel like your life is ending, it’s just beginning. You will see and learn so much about yourself, your kid, your family. Take the time and grieve the diagnosis, then once you hit rock bottom, pick yourself up and love your kiddo for who they are. Because they are so amazing and will become your purpose.” @beaus.journey

“Trust that still small voice right from the get go.” @africange

“Grieve. Those feelings don’t go away until you stare them down.” @kjtoporek

“Today isn't tomorrow, tomorrow isn't next week and next week isn't next month. Have faith in yourself and your baby, it'll get better.” @ptite_dame

“Trust your gut, and try to keep emotion out of it when working with health care professionals. You are all working toward a common goal, and anyone that doesn't fit in with the team, or isn't doing a good job needs to be replaced. It's not personal.” @mellie13

“Don’t be so scared. God gave you this child because he knew you could handle the challenge. Don’t worry about what other people ‘see’ and live your life. Cherish even the bad times - they make you stronger. I also would tell myself before the trach ... don’t be scared of it. It isn’t as bad and scary as the world makes it out to be. I would have opted for the trach 3 months earlier if I wouldn’t have let my ego get in the way. My lil’ girl was trached for 5 years and some days I miss it.” @ninaruegg

“I wish I wouldn't have resisted the idea of Oakley needing a trach for so long. I wish we would have done it sooner, rather than watch him struggle for longer while hoping he wouldn't need it. It was the BEST thing for his quality of life and I'm so happy we came around to the idea even I and got him HOME. It's hard work but so much better than the alternatives.” @nicolefayeharris

“People are only scared of things they dont understand. Sometimes you will feel isolated from the outside world, but it's up to you to get out and be a voice for your child. Help those to understand that people come in all different shapes, sizes, colors and sometimes people come with extra hardware they weren't born with and that's ok! Always use any time in public as a teachable moment, if people have questions dont be scared to answer them... a child recently asked me ‘why does he have that around his neck?’ Referring to my son's trach ‘it's a necklace to help him breathe’ I told her ... she smiled and understood made me very happy.” @kissmybass69

“Breathe!!! Take it one step at a time and expect some bumps along the way. In due time you will figure it, it isn’t going to happen overnight...and do NOT be afraid to ask for help.” @mikalsommerdorf

“Trust your mom gut. It's always right. And that something insanely beautiful will come from this.” @lilyslist2018


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