Bringing new life & love to your old pieces.

Our Story of Adoption & Down Syndrome {Continues}

I am so thankful for the emails and comments that I received

after sharing a little of our story.

I can’t tell you the joy this look back brings me…

Finding the photos and reliving the memories is so much fun!!

Our first few weeks/months were spent adjusting

to the whole idea of a baby in the house!! 

Amazing how you forget how much pregnancy

prepares you for the baby to come.

She was “home” and we all had waited so long…

but it was all so worth it. 

And much like labor- you forget all the pain that led you there!!

She was instantly doing thing that we didn’t expect.

From all the reading we had done,

 she wasn’t following any of the “norms” for down syndrome.

In the picture above she was just 2 weeks old

and was already tracking object above her.

So alert and so excited!!

This picture was taken at 3 weeks. 

Her neck muscles were so strong. 

It wasn’t an involuntary thing she was

consistently holding her head up. 

our little angel had the biggest and brightest eyes.

Full of curiosity and wonder.

I’ll be honest it was hard the first couple of months

to truly see anything so different about her.

She slept {not a whole bunch!!}, she ate a ton, and she loved kisses!!

We were at a different doctor almost every week

her first 2 months. She got a clean and clear bill

of health from the Cardio which was huge.

She did fail her hearing with both the regular

post hearing test and the ABR.

And in November after completing all of the post-placement reports

we stood amongst friends, social workers, and an awesome judge

and the finalization was complete.  She was just 6 weeks old.

But a lot of changes were happening behind scenes.

Dalton had just lost his grandfather, his dad had another stroke,

the company he worked for was going thru major changes and reorganizing.

And the opportunity opened for us to move to TX.

Closer to family but leaving a huge support system.

So at 2 months old we moved. 

And the blessings for her were completely unknown. 

 Before ever leaving WA, I contacted the

Down Syndrome Guild of Dallas who sent me a huge binder of information.

The state of TX had sooo many wonderful resources that were not avail in Wa.

Immediately upon arrival, I set up for ECI {Early Childhood Intervention} to

come out and do a full evaluation on Mia.  We started at 3 months & continued

with therapy in both Physical and Occupational with them until Mia was 13 months. 

Mia’s health was continuing to do well.  She was always congested and snotty. 

But that was one of the normal things to her diagnosis.

 At just 5 months old we had our first hospital visit.

Not being a new mom I knew something wasn’t right when we were sent home

with breathing treatments and steroids for her “normal” congestion…

She turned blue and we were in an ambulance on our way to the hospital

before I could even call my husband.  It was so scary.

She had RSV and Pneumonia.

She was such a good patient. 

 But it took 10 long days to get her numbers

where they needed to be.  And we became the

proud owners of an at home

nose sucker upper… Poor girl didn’t know mommy

had that in her arsenal!!

I lived and breathed all things therapy for Mia. 

A little girl had every toy that could possibly increase

a different milestone.  Things I took for granted with the other kids,

I couldn’t with Mia.  I read 3 books everyday to make sure I was on top of things.

Early Communication Skills for Children with Down Syndrome: A Guide for Parents and Professionals (Topics in Down Syndrome)

Gross Motors Skills in Children with Down Syndrome: A Guide for Parents and Professionals (Topics in Down Syndrome)

Fine Motor Skills for Children With Down Syndrome: A Guide for Parents And Professionals (Topics in Down Syndrome)

Mia was sitting at 7 months.  A goal she completely broke!!

We were constantly in battle over these goals. 

What the “standard deviation” was didn’t define to me

what Mia was going to do!! She was always amazing us with what she wanted to do!!

She would sit and shimmy shimmy to all her music and just laugh.

And then there was this…

Pulling to stand at 8 months.

Yes not the standard progression… as she wasn’t crawling yet.

We were constantly told not to let her pull up as she wasn’t ready….

Ummm she looks pretty ready!!

And it wasn’t just me pushing her and saying my child isn’t going

to follow your little chart.  Although by that time I sure felt like that!!

I met a wonderful lady and she told me there was another option…

Private therapy.  Our insurance was like a golden ticket as we didn’t pay any copays…

So after her goal setting evaluation where I was laughed at

 because at 9 months I said in her next 6 months I wanted her to be trying to walk…

{Standard deviation for Down Syndrome was 23 months}

A little aggressive?? Maybe but why tell her she can’t do something?

Every mother I had met prior to Mia’s arrival told me to

Expect and Demand great things!! They are more than capable!!

It may all come slower but it’s in there!!

Look at that smile!!  She is a happy girl.  I take no offense when someone tells me

“they are the happiest people”.  I do believe that she has her unhappy moments

like any other child.  I don’t believe you are insulting her intelligence to think

or stereotype her as a happy person.  She loves like no other!! She is completely

a pure heart.  She’s smarter than you can ever imagine because her words are stuck inside!!

But trust me happy or not she’s more than a diagnosis!!

This is long so I’ll leave you here until next week!!

If you are a mommy who just found out that you have a marker or a chance

that your baby will be born with down syndrome… You email me from the button above.

I’ll answer any question you have!! This isn’t a death sentence!!

It’s not easy, there are a lot appointments, a lot of therapies-

But it is the BIGGEST JOY your heart will ever know!!

~ Lori

Comments

  1. Oh. My. Goodness. She is *ridiculously* cute!!!

  2. This is so, SO beautiful and completely touches my heart in all kinds of ways I can’t even tell you. It makes me so excited to adopt someday. What a blessing to Mia to have parents who set her free of limitations! She is SUCH a beautiful girl, and I’m so excited about the way you’re going to minister to so many people by sharing your story. GAH. You made me get all mushy. 🙂

    • Oh Kelly, you are making me tear reading your reply… stop!! I am so excited to share how completely awesome this little girl is!! Her future is so bright and so full of things I am sure our minds can’t even imagine!! Thanks for taking the time to get mushy and I look forward to sharing more with you as the weeks unfold!! ~ Lori

  3. Oh my gosh your little Mia is just beautiful. I love her smile! Good for you for having great expectations for her. As an adoptive parent, I have to remind myself that my children are much more than the “could be’s” (Could be autistic, could be ADD…the list goes on). Thank you so much for sharing your story. I look forward to hearing more about little Mia!

    • Thank you Kristin!! The “could be’s” are wrapped in typical packages that don’t show up until later many times!! I want people to know what down syndrome is and looks like and what it definitely isn’t!! Thank you for taking the time to comment and I look forward to sharing more about this amazing little princess with you!! ~ Lori

  4. Ken Gross says:

    Inspriring does not adequately describe your journey and your attitude! Best wishes going forward.

    Ken…I am a friend of Tiffany McKinzie’s

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