31 for 21: If I Knew Then What I Know Now

Wow...this is a tough one.  I don't know where to start.  I wouldn't have thought our life was over.  I wouldn't have short-changed my daughter and condemn her to the life of my preconceived notions.  I wouldn't have cried every day for those first 17 days.  I wouldn't have thought it was all my fault.  I wouldn't have thought that I let my family down because I failed.  I wouldn't have felt like I owed my sons an apology.  I wouldn't have felt sorry for myself.

If I could go back to the day Hailey was born, here's what I would want myself to know......

Don't go far from the hospital.  You will have this baby today.  Beware though, you are not getting a c-section.  This little girl wants to be in the world and she is waiting for no one.  It's okay though.  You will recover quicker because your little girl needs you.  The doctor is going to tell you that your daughter's lungs are under developed and later she will struggle eating.  The doctor will also tell you that your daughter has an extra 21 chromosome...Down syndrome.  It sounds scary and you have never had much experience with Down syndrome, but that's okay!  You can be sad that it wasn't the path you had expected (it's okay to cry), but it doesn't mean the world is over.  God isn't punishing you...she is a blessing.  It just means things will be a little different.  Your daughter will take a little longer to learn things.  Her muscles are a little weaker so she has to exercise more to achieve her goals.  You will have the help of therapists to work on these milestones.  They will teach you how to help her and it is actually more playing than working.  You will take her to a few extra doctor appointments.  These don't mean she is sick.  They are preventative...they will help you keep her healthy.  You don't need to feel sorry for your sons.  Hailey is their sister.  They will love her just the way she is.  They will love the network of people you will meet and have fun at the activities you attend because of Down syndrome.  They will treat her like all big brothers treat their little sisters.  She will annoy them and take their toys.  Those boys will be her best therapists because she will always try to keep up with them.  The laughter of those three children will make your heart feel like it will explode with happiness.

Beware of this little girl you are bringing into the world.  She has an extra sparkle and extra something that makes people stop.  They aren't staring at her because of her features that announce she has Down syndrome.  They stop because her personality draws them in.  Her dimples, grin, and wave welcome people and say  "come talk to me".  She will start with the nurses in the NICU.  They will argue over who will be assigned to her.  Her family will be captivated as well as all your friends.  Her smile will be enough to put everyone in a good mood.  The staff on the cardiac floor will talk about her and you will have people stop you saying, "I have to see the beautiful little girl with the dimples.  I need some sunshine in my day".  When she gets a little older, her sparkle has even more meaning.  It is the glimmer of her mischievousness. 

Hailey will open up a world you have never noticed.  You will view people in a different light.  You will finally realize that everyone has a story.  Just like books, you can't judge them by what you see on the outside.  You will have more compassion for others and see people with disabilities clearer.  They don't want your pity.  You will "meet" people from all over the country.  They have been there and they are walking a similar path.  They will give you invaluable advice and suggestions.

You also need to warned...this girl will be stubborn.  If she doesn't want to participate in therapy, she won't.  If she isn't ready to crawl, she won't.  If she doesn't like the food you have given her, she will throw it on the floor.  She might even be a little more stubborn than her older brother.  That stubbornness will come in handy though.  She won't give up.  She will work harder than any person you have ever met in your entire life.  Hailey will be strong.  She will amaze you and leave you speechless.  She will infuriate you.

Learn right now...don't underestimate this girl.  Throw every thought you ever had about Down syndrome out the window.  You will hear developmental disabilities and think she won't be smart.  Oh, don't fall into that trap.  She will figure out things that you can't imagine.  She will watch everyone and miss nothing.  She will show you that she is smart and she will con you if don't pay attention.  An example of how smart she is, she will learn sign language quicker than you.  To avoid being embarassed at speech therapy, learn the words as she learns them or she will start signing to your speech therapist and you will be clueless!

You will start this journey asking God "why"as if it is a bad thing.  You will realize quickly that you should be telling God "thank you".  Your life will change for the better.  Hailey will fit in your family so perfectly that you won't remember life before her."


I never imaged this would be our little girl in 20 short months.

 

Signing "mommy"

Great pointing (as she has a conversation with her favorite person...her reflection!)

How could you not love this face?

Yelling at her dad and brothers

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