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You’re sitting in front of Google and you’re typing, “My child has been diagnosed with…”  You find yourself too afraid to click on the search results for fear of what lies behind that link. Welcome to the club of exceptional mothers who get the honor of raising children with special needs. My Child has been diagnosed with many different medical conditions.  Check out our story over on the About Page.

I found myself in the exact situation a little over 3 years ago. Asking myself “Why?  I can’t do this, I wasn’t cut out for this kind of life.  My daughter doesn’t deserve this.  If I’m being punished for something, take it out on me, give me the disabilities.  This beautiful little human does not deserve this.”  Confused, angry and depressed, I felt crushed..

In the Beginning

Riley resting up during a two-week hospital stay.

Your mind is going a mile a minute and you simply don’t know what to do. I get it, I really do.  The first step on your new journey is to stop and listen.  Listen to the doctor’s, take notes, bring family members you trust with you to visits.  If you’re anything like me, you can only take so much information before your brain just starts to block it out.

This is when you start to panic.  Want to know a little secret?  It’s OK to panic.  Give yourself that moment to feel it.  There is no training, no classes available for preparing yourself for a life you never expected.  There isn’t a handbook that gives you step by step instructions on how to handle what’s being tossed in your lap.

Moving Forward

If your first goal is to get through the shock of hearing you and your family’s life has just dramatically changed, then your next step is to get it together.

As a parent, you understand that this little human is relying on you.  That statement isn’t to give you any more pressure.  It’s a reminder that you are going through some serious overload, but so is your child.  You are now their strength, their advocate.  You have to get it together, not just for your sanity, but for theirs.

Easier said than done, right?  It took me a solid two years to start feeling comfortable with our journey.  By comfortable I mean that life isn’t all over the place with Riley.  She’s stable.  That sounds horrible, doesn’t it?  Riley has a lot going on, and for us, stable is an amazing place.  I’ll take stable over not knowing what’s coming next, which was the first two years of her life.

Finding Your Way

Riley happy at home with her elephant lovie.

Some secrets for your new journey?  It’s a marathon, not a sprint.  It may seem like sprints at times when you have to schedule doctor’s appointments and specialists, and therapy’s all while remember your other child(ren), working full-time, being a supportive wife, getting food on the table… and oh yeah, taking a shower from time to time.   I never said it would be easy.

The reality is, life is going to pretty much suck some days.  Other days, you’ll get to sit on the couch, catching up on a show or two with this beautiful little child in your arms and think, “it’s not so bad.”  Believe it or not, the more comfortable you get with the new norm, the easier it will get.

One of my favorite quotes I find myself repeating again and again… You never know how strong you are until strength is all you have.  You think you have nothing left to give, but you keep going anyway.  That’s a strength that many never realize.  Those of us who have experience with this strength know that you keep going for no other reason than you have to, and you will.

Keep Moving Forward

OK, now what?  What do you do?  Let’s start getting it together.

Start now by signing up for your free printable PDF.  When you sign-up to receive the download, you’re also signing up for my newsletter.  Feel free to unsubscribe at any time, or stick around for news and eventual product releases.

The PDF will include the following:

  • Getting Organize Checklist
  • Questions for Doctor Cheat Sheet
  • Medications List

Use these items as building blocks as you find your way.  I wish I had some basic building blocks when I first started walking this path, or at least someone to help me on my way. Keeping track of everything is no easy task.  Find ways to get yourself organized early on.

Write to Remember

One of my biggest pain points was trying to remember… well, anything.  I couldn’t remember questions I had thought of 2 minutes early for upcoming doctor’s or specialist visits.  We kept changing Riley’s medication so often at the beginning, it was hard to remember what dose she was at.  The medication changed so often, we still had a bottle or two at the previous dosage, our labels were usually out of date.

Though this check list seems a little basic, it’s important to keep things simple as well.  The pediatrician is there to guide and answer your questions.  Ask about specialists that you’re referred to so you’ll have an idea of what to expect.  Ask other parents for their opinion and keep notes.  I’m on a few support groups locally that constantly ask for opinions on doctor’s and specialists, listen to other parents.  Ask about office wait times, how other’s feel about the staff friendliness.  Consider the opinions of those who have walked in your shoes before, you may learn some great tips to help your along your journey.

You’ve Got This, Believe In Yourself

The biggest thing to remember is that you’ve got this.  No one will know this child better than you.  Trust your gut, speak your mind, ask every question, even if you think it’s ridiculous.  You’re stronger than you think, and you’ll learn it soon enough.  Drop me a line, reach out, this journey isn’t easy, but you aren’t alone.

I wish you the best of luck on this path you’ve found yourself on, and want you to know that I believe in you.  I’m also here to walk beside you.

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Sara is a mother of two, wife and full-time employee. She's also a parent of a child with special needs.