Advice to New Moms

This seems to be a common question "What advice would you to a new mom of a child with Down syndrome?"  It's so hard.  It is impossible to narrow it down to one sentence...to one thing. 

There are so many things that come to mind so I'm going to type as they pop up...it may seemed jumbled and are in no particular order.

As far as the diagnosis, I have no experience with a prenatal diagnosis.  We received ours a few hours after Hailey's birth.  We were very fortunate in that we had a fantastic neonatologist (it almost made up for the horrid OB that delivered Hailey).  I frequently repeat the advice he gave us.  "Take all of this one step at a time.  Take each hurdle as it comes and don't worry about the next one until it comes.  He/she is your child first.  Feed him/her, change them and love them.  Everything else will work itself out."  It is actually good advice for any new parent. 

Be prepared to be bombarded with information.  Information from everyone...early intervention, local Down syndrome association, statistics and facts about other conditions that children with Down syndrome can get or may have.  Take a deep breathe and just focus on what you can handle at the time.  Some people are research fanatics.  They feel that knowledge is power and they need all the information they can get their hands on.  Some people need to take it a day at a time.  I personally read a book that listed every possible disease, illness or condition that Hailey could have have in conjunction with Down syndrome.  I cried for days.  I then took the book to the recycle bin and dumped it.  I could not even pass it along to another family.  No one gives parents with typical children a book that lists everything that "could" go wrong with their child. 

Enjoy your baby!  Snuggle with your child and take in all the new baby smells.  There is no snuggle like one from a baby with Ds...or a toddler with Ds :-) 

Your child will be greeted with mixed emotions.  Some people will apologize when they find out your child has Down syndrome.  Don't worry about it.  Tell them you are not sorry and move on.  Some of it comes from lack of information and some people truly do not know how to respond.  Some people will cry crocodile tears and smile.  They probably have a connection to Down syndrome...a sibling, a cousin, a friends relative, etc.  They see the beauty.  Some will say congratulations and smile as they go on their way.  Some will not respond at all.  Don't worry about them either.

Take care of yourself.  You will throw yourself into caring for your child (as you would with any child), but take a few minutes to yourself.  A nap, get a manicure, go for a run or walk, read a magazine...whatever makes you happy will help you stay sane and be a better parent!

The last big advice I have to give, I just gave to a friend of mine last week who has a little girl who is 16 months old (who is one of the cutest little girls I have ever seen!).  She told me that she did not know who to listen to.  Sometimes there is conflicting information.  One specialist recommends this and another one recommends that.  Some therapists push for weekly or even twice a week therapy and some will tell you that once every two weeks is adequate.  My advice is this....you are the parent.  You know your child better than anyone else does.  You know what your child can handle and what is too much.  Follow your gut instincts.  Generally, they are right.  Also remember that your child is part of a family unit.  If therapy 5 days a week doesn't fit with the rest of the family or it causes issues with your other child or it exhausts you, then don't do it.  Each person has a role in your family and you have to do what works for your family as a whole.  While my middle child thinks he needs to play select soccer, select baseball, that he should try out for football and play basketball....he simply can't.  He is one of three children and we can't devote the financial resources or the time for him to do that.   It isn't fair to his brother, his sister or his parents!

The best thing I can tell a new parent of a child with Ds is...congratulations!  It isn't the journey we all would choose, but I love my tour guide and you will be crazy in love with yours, too!!!

Hailey was not happy at the eye doctor last week.

But thankfully, she never stays mad for very long!

The Disability is Not the Hardest Part

This week as I made 100 phone calls trying to figure out where I could take Hailey for glasses through our insurance and who actually carried the two brands (Miraflex and Specs4Us/Erin's World) that I wanted to try for her face shape and uniqueness (lack of a nasal bridge and low set ears).  We have supplemental insurance for Hailey to help cover what our private insurance doesn't cover, but that was useless because there was no location that took our insurance, the supplemental insurance and had the glasses we needed.  Sigh....

So Thursday I packed Hailey a lunch to eat in the car, she is always starving after school.  We headed from her school to the eye center to pick out glasses...praying that she would behave since we were missing nap time. We spend about 15 minutes trying on glasses and taking pics (I didn't want to choose them on my own so I had to text a few :-)  I got them narrowed down to one size and we sit down to complete the paperwork and measurements.  That's when the lady looked at me and said, "I'm sorry, we don't take your insurance".  Bigger sigh....  I mention that I verified with our insurance company a few days ago and again this morning before leaving.  She just shook her head and said sorry.  I told her I would be right back.  Hailey and I headed to the car so I could call the insurance company.  Before I called them, I cried.  I think it was just the straw that broke the camels back.  I was tired...I'm worried about the battle that her glasses will be...and I had spent so much time researching where to get her glasses.  We spend 20 minutes in the car.  Hailey playing with her "doggie" and me talking and waiting on hold with the insurance company.  They finally get it resolved and we go in to finish the order.  We pick them up next week.  I'm sure that will be another blog post in itself..."Places we have found Hailey's glasses" or the "Strange ways she's using her glasses". 

Through the process this week, I came to a realization...most of the times, it is not Hailey's disability that causes anguish or pain...it's the processes and red tape that we have to work through.  It happens early on.  Fighting with insurance companies for therapies that will improve her quality of life or tests that should be considered preventative medicine.  It's the mound of paperwork that you fill out for everything.  I haven't had the issue at school yet, but I know that some parents deal with a ton of issues there as well.  It's the "oh, we can't proceed because you didn't submit form x, y and z".  It's tiring...it's emotionally draining.  I truly believe that is the hardest part of Hailey having a disability.  It is trying to do what is best for my daughter to make her life better and the roadblocks that we encounter.

In true Hailey fashion, we were at the end of her order and she says something to me.  I have no clue what it was, it was super fast and super high pitched.  I looked at her and asked what language she was speaking.  She started giggling and cackling and covering her mouth.  She repeated the exact same phrase three or four more times just so I could give her a funny look.  Every time, she followed it with that giggle that makes people stop what they are doing, look at her and laugh.  That infectious giggle that I love so much.  Just like that, all is right in the world again!

Here are a few looks we checked out while we were at the doctor's office....

She refused to go into the office without her "doggie".

I promised if she would good she would get a cookie.

The clerk at Kroger thought she was super cute and gave her 2 cookies!

This is what happens when you go to school, eat lunch in the car, are super good picking out glasses and at the grocery store and you miss naptime.....

Sunday Selfies

Hailey has always loved her own reflection.  When she was younger, the joke was her reflection was her best friend!  Now, she loves taking selfies.  She loves pushing the "button".

Silent Fears

I will never forget that first night in the hospital.  We were both trying to sleep.  Both still reeling over the fact that our daughter "probably" had Down syndrome.  I never told him, but I thought I let him down.  I was afraid I disappointed him because I thought it was my fault that Hailey had Down syndrome.  Every time I see them together those fears vanish.  Neither of them look disappointment or hurt, do they?

21 Things About Hailey (31 for 21)

My brain is on hiatus today so I looked through some older blog posts.  I ran across this one and was surprised to see that a lot of these were still the same today...a year later.  With the exception of her fave foods...she  really seems obsessed with "boccoli" and "geen beans" right now.

21 things about Hailey to honor that she has 3 copies of the 21st chromosome.

1.  She was born on her grandfather's birthday.  His name is Don.  She was supposed to be Hailey Michelle, but because they share the same birthday, they share the same name...Hailey Dawn.

2.  Hailey's eyes are both two colors:  blue with hazel spots.

3.  Hailey was a girlie girl from day 1.  She rolled over for necklace, crawled and walked for bracelets.  No joke!!  Her therapist stopped wearing jewelry after the first few months because Hailey would only focus on the bling and not what she "should" be doing.

4.  Hailey is a hoarder.  She can't have just one Little People, one book, one flashcard, or one musical instrument.  She has to carry as many as her arms can hold.

5.  Hailey has already learned to work people.  If mom tells her no, she goes straight to dad.  If Brayden won't give her part of his snack, she will wiggle up to Ian and put her arm around him.  When I say it is bedtime, she runs straight to dad and says "hug".  She snuggles into him and doesn't let go. 

6.  Hailey loves music.  She will dance in the store, in the car, in the tub, in the grocery cart and throughout the house.  Music speaks to her.  It is like the music takes over her.

7.  I truly believe people invite me to lunch, to see her over me :-)

8.  Hailey is quite independent.  She will refuse to eat pizza if you cut it up for her.  She will ask for the boys' pizza and eat the entire slice.

9.  Hailey could look at books, play with puzzles, and play with her babies for hours.  She talks to her books and points to words she knows (she will sign or say them).  She will rock her baby, cover them with blankets, feed them, and put them to bed.

10.  Hailey wakes up every morning smiling from ear to ear.

11.  Hailey hates to be restrained.  At the doctor's office, for blood work, for us to give her medicine, etc.  Many times, it does take more than one person (and yes, she is only 3). - She has gotten TONS better than this at the doctor's office.  We think it has something to do with Doc McStuffins!

12.  Hailey wants anything that her brothers have.  They are the world to her.  She laughs the hardest at her brothers.

13.  Hailey is sneaky.  If you are looking for something, she has probably hidden it.  She likes the trash can and house plants (she likes the toilet, but we keep the bathroom door shut)

14.  Hailey loves to help.  She likes to unload the dishwasher, help with laundry, vacuum, and this week started dusting.

15.  Hailey's favorite foods (not counting junk food...she's a junkie): bananas, avocados, and black beans.

16.  Hailey likes big dogs, but small dogs freak her out!

17.  Hailey's heart should never need surgery for her defect again. 

18.  Hailey loves people and loves for people to acknowledge her.  She walks into the Y, and will stand in front of the door until someone sees her and says hi.  She walks into the child watch room and stays at the door until one of the girls say her name.  Almost as if she has to make an "entrance".

19.  Hailey's smiles, laughter and enthusiasm is incredibly contagious and makes everyone around her stop to see what is causing so much joy. 

20.  Hailey likes to climb.  She climbs on the back of the couch, on top of the table, on the counter, on beds.  If she can't get there on her own, she knows to use a chair, stool, toy...whatever the girl can find!

21.  Hailey likes to do things she knows she shouldn't do, then yell "mom, mom, mom", until I acknowledge her.  Then I get the most mischievous grin I have ever seen.  Occasionally, I will hear "nah, nah, nah, nah".

Who is Hailey?

I like to do this post every year because like all children she changes every year.  If I had to take a snapshot of Hailey at this very moment, this is Hailey at 3 1/2 years old....

She loves to play with her dolls, flashcards, the iPad (she has mastered the art of moving apps....it's driving us all batty!).  She loves jewelry, purses and new shoes.  I feel sorry for school today because she was sporting new sneakers when she left this morning.  She kept putting her foot up by her head to show everyone.  Her favorite characters at the moment...still Doc McStuffins and crew, Anna and Elsa from Frozen, Mickey Mouse and his gang, and Sophia the First.  She loves her brothers and asks about them all day.  If we are discussing an event that we are doing later, she always asks "E" and "Bray" to make sure they aren't going to be left out. 

She loves to play on the playground at school, at the park....anyone she sees.  Her favorite is the slide by far.  She likes the concept of the swings but then gets annoyed with it.  She loves being outside so we have to make sure all the doors are locked and have child-proof (for a little while anyway) covers on them. She loves amusement park rides.  She yells "ride" every time we drive near Kings Island.

Even the dolls have to slide.

She asks to go to bed at night and to take a nap during the day.  She will either crawl on your lap and say sleep or she will climb on a pillow and tell you "night".  That normally won't work because Hailey gets quite distracted by everything else going on.  We take her upstairs, tell her to sleep with Doc and Abby (this fabulous weighted doll she has that smells like lavender), cover her with her weighted blanket and shut the door.  She does still fall asleep in random places in the house.

This is her baby Abby.

Hailey loves to stack cups.  We have to rotate what cabinet we hide the kids' cups in because she is always stealing them to play with.

Hailey is a fantastic eater.  Sometimes maybe too fantastic.  She loves all food...especially if someone else is eating it.  I would say her faves right now are soup, yogurt, chocolate, oranges and green beans.  She will eat almost anything if she has a "dip".  Every new healthy recipe I try I swear she won't eat, but she surprises me and loves it.  She is the best weight loss program there is because you never get a full meal sitting beside Hailey.  The only thing that I can think of that Hailey won't eat is asparagus. 

At one time, that was my ice cream.  She claimed it and yelled "mine".

Some time the dog even has to join her for her meals.

Hailey loves to sing and dance.  She loves "Let It Go" from Frozen and Happy Birthday.  She dances in the car, in the grocery cart, in the stroller, etc....anywhere and everywhere that she hears music, the girl is going to move.

Hailey is moody and has an attitude.  Some days she will only speak to two groups...dogs and babies.  Everyone else is out of luck.  She won't speak, wave or smile to anyone else.  Then other times, everyone is her best friend and she is all smiles.  However, she throws very few tantrums.  She does get upset sometimes when we don't understand what she is saying, but she doesn't throw the typical tantrums that the boys did at this age.

Hailey's size is close to typical with the rest of the nation's 3 year olds.  However in the Down syndrome community, the girl is an amazon!  She looks like a brute but that's okay, they love her anyway.

Hailey is mischievous and likes to get into things.  Her brother's toys and video games...my purse, the junk drawer and the refrigerator...dad's wallet...  She rats herself every time because she cackles and giggles as she does it.  She loves getting someone's attention...good or bad :-)

Of course, after we made a trip to Disney last year.  Hailey has now decided that she likes all costumed characters and wants to say Hi to all of them.  The Panther is her new favorite.  It the the school mascot.  She points the panther out on all apparel and papers now.

I'm sure there is lots more that I'm missing.  She's quite the character and keeps us on our toes!