Category Archives: children

It’s not all sunshine and unicorn butts

I am usually an optimistic person. It drives my husband crazy that I always look for the silver lining. The truth is, life with Bridget isn’t always easy. Beyond doctor, therapy, school and paperwork there is also just life with a child who cannot express her frustrations.

Recently I was taken aback when I was told that I am doing parents a disservice because I am promoting that having a child with special needs is all sunshine and none of the darkness.  I asked if they read more than one of my blog posts, because I tend to vent quite a bit on our struggles.  Continue reading

I have two kids and two parenting styles

Today I am so very honored to be featured on SheKnows Media,  discussing how when you have your first child, they are barely out of the womb before someone will ask when they will have a sibling. I would always say never. I could not imagine sharing the love I had for this child — nor having the patience to deal with another one. For years, I was told I would love both children equally but differently. Five years later when — surprise! — that second child was born, I finally understood what “equal but different” love meant.

To read more, click here

Wanting normal

Although the pain fades, it never goes away.  I will never forget the fear I had, the moment I realized something was different with Bridget.  Having to take her to the ER on her fourth day of life and bargaining for her life.  I just wanted her to live.

Now “I just want her to be normal” Continue reading

TBT–Kaylee is determined to Pay It Forward

Today’s Throw Back Post is about my friend Kaylee. A girl who is an incredible hero. Once again she is participating in the Polar Plunge to support Comfort Zone. The camp that allowed her a safe place to grieve and to grow. Please consider to once again donating to her cause. No child should lose a parent, but if they do then they need places like Comfort Camps. Her plunge is coming soon, Feb 28, 2015. Given the current arctic winter we are having, I am hoping she doesn’t have blizzard conditions!

I am in awe of children. Children who want to make a difference in other’s lives. Whether it is a huge movement like Malala or providing comfort for another child. I would like to introduce you to a beautiful seventh-grader named Kaylee.

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TBT–CARE

Throw-back Thursday, today to not quite end Down Syndrome Awareness Month I am reposting a blog from October 31, 2013. It is beyond important to raise awareness for what Down Syndrome is and what it is not. This post explains why it is so important to any parent whose child has a special need.

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My Challenge: Robin

Today is pretty cool day for a Challenge. I have never met Robin, she isn’t a blogger and I wouldn’t know her if she hadn’t taken the time one day to reach out via e-mail and offer an avenue for me to explore with Boo. Beyond cool for me. When I asked her to write a Challenge for this series I had no idea what she would submit. Those of you with young children hold onto your Cheerios as Robin explains life after the kids grow up.

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My Challenge: Chris

Today’s challenge is from Christine Carter. Chris is the mom of two who began blogging not only to record her children’s lives but also to bring hope and encouragement to others. She writes on all topics but her foundation is in her faith. She makes you feel not alone in your whatever your challenge might be but gives you encouragement to handle it.

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Milestones met but not

Bridget lost her first tooth the other day. I don’t know when it happened. I didn’t even know she had a loose tooth. Had I not been brushing her teeth for bedtime the milestone would have gone unnoticed.

I put her to bed, like normal. No mention of the missing tooth or the tooth fairy.

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My Challenge: Echo

Today’s My Challenge is from Echo a mom blogger who writes about the joys and tears of home schooling two children, one with autism and one with a diva issue. 

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My biggest challenge and my greatest love…
When Kerri asked me if I would be willing to participate in this series, I was ecstatic. I think that opening up and sharing our struggles and challenges is a great way to help each other grow as parents.
My son. My handsome, smart, charming and stubborn son is on the Autism Spectrum. He has PDD-NOS (formerly diagnosed as Asperger’s Syndrome). He is extremely high functioning, but also has a lot of sensory processing and social interaction issues.
My daughter. My gorgeous, intelligent, dramatic and independent daughter is NT (Neuro-Typical). She has hit all of her milestones and continues to grow and progress.
My biggest challenge is also my greatest love, raising my two children. Raising a child on the spectrum is hard for anyone, add in sibling rivalry and it can be complete chaos. I have to navigate so many issues, that at times, I feel like I am nothing but a referee.
Try dealing with the emotions of an over dramatic 8 year old when he realizes that his 3 year old sister is faster than him. Try dealing with his frustration when his 3 year old sister starts riding her bike and he cannot.
Imagine trying to get your strong-willed 3 year old to stop touching her brother a certain way. Imagine trying to break up a fight between a 3 year old and an 8 year old because the 3 year old took her MegaBlocks back.
Feel the heartache when you watch one child achieve something that the other could not. Feel the confusion because you don’t want to treat them differently, but you have to because of age. Feel the frustration when your 8 year old constantly yells at your 3 year old and your 3 year old constantly pushes your 8 year old’s buttons.
My children are my greatest love and I would not change either of them. However, trying to raise them together, equally is truly my greatest challenge.


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When Echo sent me her post she wondered if it was “right” for the series. After reading it I replied it was freaking awesome. I think all of us with multiple children have the challenge of raising them the same but different. Add in a disability and YIKES it can sometimes (most times) seem overwhelming. 

Thank you, Echo for sharing your challenge today. You can read more about Echo at Mad Mommy where she shares everything from the 100 lb challenge to home schooling. 


What's your challenge is a series that was inspired by a program I created at Abby's school. I am amazed at how honest and hopeful the challenges have been. Thank you to all who have contributed. To submit your challenge, please e-mail me at firebailey@gmail.com


Being okay doesn’t mean being satisfied

A few months ago I wrote a post titled Paging Dr. House. One of the most fantastic benefits of blogging is when a reader might not comment but instead send you a lifeline. To protect her privacy, “T” wrote to me shortly after that post and encouraged me not to give up. Not to despair. But more than a pat on the shoulder “T” gave me the  name of a doctor who might be willing to review Boo’s history. She may have found our Dr. House.


So last week we took a little 20 hour road trip hoping to find an answer to what is Boo.
We were worried, to be honest. David was nervous of walking into a Justina Pelletier issue. I was excited, we might have an answer. A little nervous that we were making a huge monetary investment in a hoax. Then I got excited again. Until the day we left and I realized that answer might be that Boo has only five years left of life. I wasn’t quite ready for that news. I sent a panicked text to Tia who replied: BREATHE.

Thankfully our fears never came true. Instead we were given a new hope: finding an answer. We might not, the doctor was very honest with us. However just looking at Boo she said she was confident that not only did Boo have a syndrome but that the answer was out there. Not five years from now, but as near as six months. 

For the first time in too long a Doctor got it. A Doctor looked at Boo from her beautiful hair, to her teeth, to her fingers and toes. A Doctor didn’t talk with just me, but looked at Boo and spent time (almost 2 hours) with her. She noticed that Boo grinds her teeth, that her hands/feet are slightly webbed, that she is the best hugger and has bowed legs. She took out her medical books, laid them on the desk and said, “I’ve seen this characteristic before….” and “wait let me think about this…”

She was also honest and said we might not find the answer today but that it was important to never stop searching. She understood the why of it all. That to get Boo the best life possible we cannot be in the dark. We need to be aware of what she has so we give her the best chance at living her life that is this beautiful miracle. 

This Doctor was clear: While Boo’s tremendous advances may have “ruled her out” for certain syndromes that might not be true. Without her therapies and schooling she would not be where she is today. Her advances might be in spite of a syndrome rather than because of one. She was also honest: She might not find the answer but that didn’t mean the answer isn’t out there somewhere. 

She solidified for us that we have to continue to be warrior parents. That the hole in her heart may be “trivial” but it is important, that her temperature issues might be manageable but they are important, that Boo has dysmorphic features and they are important. In her terms, Boo has “structural issues” and these are due to a genetic syndrome and not by chance. That we need the answers because one day these “trivial” issues might prove to be catastrophic. That it is our job as parents to continue to be the thorn in the medical establishment’s side. She understood on an intimate level that this is our child, the most important child in the universe. 

Boo will have to undergo more laboratory testing. The tests take about six months to result. The six months will be worth the wait, even if the answer is we don’t know. At least we found someone who won’t stop looking with us. We will know we have exhausted every option, for now. 

Maybe, just maybe I will have to change the name of this blog from Undiagnosed but Okay to something more appropriate.

Won’t that be a cool problem to have?

Thank you, “T”. You know who you are. Thank you for reaching out and “stalking” until you found me on Facebook to offer us a lifeline. When I was in despair and worried you were willing to take time out of your life to offer me hope. I won’t forget it and hope to pay it forward someday.