The Hailey Herald

The Hailey Herald

Tuesday, July 17, 2012

What Have You Learned?

I seem to get the most traffic on posts that directly deal with Down syndrome or special needs.  I'm happy about this because maybe I will open the eyes of one person or make one parent feel better about the feelings they are going through after a diagnosis.  Besides that...our life is rather boring and dare I say "normal". 

As a new parent, you learn more than you realize you didn't know (did anyone follow that?).  Who knew that some diapers work better for one child over another brand...who knew that not all babies will use the same bottle...who knew that not all children don't actually learn things in the order "the" books tell you, who knew you don't really need all the "gear" that Babies R Us recommends you put on your registry?  I'll be honest, Hailey is #3...I'm quite seasoned...or so I thought!  I wasn't sure there was much else that I didn't know.  My boys are totally different...I thought I "knew it all"!  Ha!  Boy, was I wrong!  Not only did I get a girl, but she has her extra chromosome that changed a few things along the way.

I have learned several things just because Hailey is #3...
  • We are now longer one child per adult...we practice juggling frequently!
  • 3 children can make larger messes than you can imagine!
  • It does take a LOT longer to get out the door
  • Quick trips take at least 3 times longer than before!
  • Your heart does expand with each child!
I have learned the obvious because of extra medical concerns...
  • More about Down syndrome and developmental delays
  • Medical terminology with her heart, eyes, ears, etc.
  • How to wade through insurance paperwork and medical billing
  • How to keep my cool when dealing with insurance companies and medical billing (it's not the customer service employee's fault)
  • About early initiative programs to help my daughter during her early, soak-everything-up-like-a-sponge years
  • About therapy...physical therapy, occupational therapy and speech to help Hailey strengthen her areas of weakness and fine tune her strengths
The lessons I've learned because Hailey has a disability....
  • The pride I feel when that little girl accomplishes a task that she has worked sooo hard on is indescribable and immeasurable.
  •  We celebrate everything now...the little things...
  • I don't take as many things for granted (this is probably due to her heart surgery)...we aren't guaranteed tomorrow
  • There is a wonderful group of mothers that I have met online that have become a wonderful resource and a fabulous support system...I would have never met them had it not been for Hailey!  
  • Hailey will learn to talk...she will learn to walk...she will learn to tie her shoes...she will just do it in her own time! 
  • I am stronger than I ever realized, but not half as strong as my 16 month old daughter!
  • I have learned that Hailey having Down syndrome is NOT the worst thing that could happen to my child or my family.  My daughter is PERFECT!
I'm positive there are a ton more, but the pounding downstairs (new flooring being installed) is interrupting my train of thought!

Last week, I asked some moms online (trust me, they have been a fabulous resource through our journey so far with DS!) what they have learned the most.  Here are what other moms shared with me....

"I have learned that my parenting style does not always match my sons needs so I have learned to let go of some of my ways so that I can become the mom that needs me to be."

"I have learned not to sweat the small stuff, and still enjoy the little things!"

"I have learned that if one thing doesn't work try another one and so on and so on.  You can ALWAYS make a change!   Definitely not saying the R word anymore." ~ Chris

"I have learned that having a child with delays doesn't mean my child necessarily is always delayed.  I am in close contact with about 40 women from my birth board here on BBC.  In posting some brags about Ian recently, I've discovered that he's been able to do some things ahead of his "typical" peers.  He's drinking from a straw, climbing, and taking his shirt off (odd milestones, I know!)  Some of his peers aren't even doing this yet.  Just goes to show that our kids can and do learn things on their own schedule!" ~ Angie

I learned that the measure by which society most often defines success isn't always the best measure.  I doubt my daughter will have a high powered political job or earn a PhD.  But I also learned that those things matter much, much less than her reaching her full potential, becoming a woman of character, loving others, and making her own contribution to society.  I've learned that "special needs parenting" isn't always so different than parenting.  I'm learning to take the long view and celebrate little victories along the way.

Because Ellie was in the NICU for three weeks, she started off teaching me patience, and I can tell she will continue to teach her mama patience for many years to come!" ~ Megan

"Having a child with special needs has taught me that all children are really just children and all people are really just people. 

It has taught me to have passion for those who need a voice.

It has taught me that people with special needs are very strong people as they work so much harder to achieve the things they achieve.

It has taught me that the value of a person is not how 'smart' they are, but how much drive and passion they have to achieve their dreams.

It has taught me that just because people with Ds are delayed in some ways, it doesn't mean that they aren't ahead in other areas.  I was told last week that Phoebe is a great chewer - much better than most typical kids, in fact." ~ Chris

"I have learned to put a lot more trust in my mommy's instincts." ~ Laura
"It's helping me come to terms with my vanity (not just appearances, but in the way people perceive me in lots of ways)."
"I have learned when the day is not going liked you planned, stop everything and dance, or go for ice cream. Lifts my spirits and my daughters too! I have also learned it is Ok to ask for help and support." ~ Shannon
"I've learned that a baby does not always have to do things "on time" to be doing well!" ~ Jackie
"I've learned too much to put it simply - because it's not just disability; that's easy for me. It's DOWN SYNDROME; that was the one thing I was more scared of than anything. So in essence, it was facing my greatest fear.
Maybe the one thing that I learned that really hit me was that my kid is my kid. The extra chromosome doesn't change very much. If anything?" ~Meriah   
"I have learned to face things head on. I talk openly to any one about Down Syndrome. If anything - I have learned to laugh out load till the tears roll down my face - good tears this time. I use to be so guarded , Aiden has take all of that out my life. I have learned that everything will happen in its time - that patience is a virtue and that love is the most amazing thing in the world. When I think about my little boy- my heart just bursts with pride and love. When I got the DS - I thought I would never be here - right now my co workers are passing my phone around and going ga ga  over my gorgeous quirky kid. I have learned to just be."
"I've learned that a baby with Down Syndrome is the biggest blessing that God could send to a family.  Everyone should be as lucky as we are."
"I've learned that I am much stronger of a person than I ever gave myself credit for. That unexpected miracles are sometimes exactly what you need. I've learned that I have some amazing friends and that there truly are some very caring people out there in the world...(yes, people like all of you) and that no matter the challege, we can do this. 

I've learned that there is nothing better than the birth of a child that you didn't plan for and that I took for granted the 3 pregnancies I had prior to Nicholas being born.

I've learned that DS was a blessing diagnosis and that I am one of the few lucky moms to get to experience having a child that contains more of me than his father.... lol (his extra chromosome is from me) and that Nicholas is a very lucky young man because he was gifted to us by God and some babies are gifted to people who become scared and choose to end their pregnancies.
Most of all, I have learned that ALL life is precious and that where there is love we can conquer."

"I've learned I'm ok with what Tyler will and will not be. I do not need to spend hours a day tryig to make him something he is not. He is my son and the only thing I need him to be is happy." ~ Karessa

 On a lighter note, I am privileged to spend every day with this cuteness...I'll happily share...but ultimately...she's mine!

 Thank you to all the moms on BabyCenter that shared their thoughts!


  1. Love that sweet hailey. And this post was great. Agree and relate with so much of it

  2. Really great compilation, Michelle!

  3. I love this post! I think I've learned that Ben is a boy with Down syndrome and not a Down syndrome boy. His Ds doesn't change his heart/soul and who he was meant to be!

    1. My biggest hurdle was seeing her past her diagnosis...she has so many traits that are exactly like family members...stubborn, funny, persistent, etc.