Wednesday, October 15, 2014

Teeth -day 15

Tonight Aubrey lost her 3rd tooth. And this is her excitement level....tears. Her first tooth was lost over Christmas vacation, in the car, somewhere between Wisconsin and Minnesota.  (She swallowed it, we think) Her second tooth, she lost while in the hospital last March.  Zero interest in that tooth. 

For most kids, losing teeth is a right of passage. "I'm one of the big kids!"  Aub is different. She doesn't care. She doesn't understand. And in some ways it is traumatic I guess. She kept signing for me to call the dentist. 

It can be a challenge to understand her thought process and console her. Some days are like that with our girl. 

So we dried the tears and I pretended to call the dentist and told her they were closed and sleeping. She seemed to understand and I assured her I would call tomorrow. 

Some days are like this....

Tuesday, October 14, 2014

Worry and Help - Day 14

Matthew 6:34 "Therefore do not worry about tomorrow, for tomorrow will worry about itself.  Each day has enough trouble of its own".  

It would be very easy to become overwhelmed with raising Aubrey.  And to be honest, sometimes it does become overwhelming.  But when it does, we stop and pray.  We pray for strength to get through the days.   We pray for wisdom to make the best choices for her life.  We pray for peace.  We pray for understanding.  We pray for help.  And we trust God to get us through it.

I learned right away, that I can't do this on my own.  Life is gonna be busier and more challenging and taxing with Aubrey.  But I don't think she is the only kid in the world that does that to parents and I don't think that Down syndrome is the only diagnosis that makes things challenging.  In fact, I think there are more challenging children out there....boys in general for example:)

I'm admitting that it is hard.  And it has taken me years to admit that out loud.  I always strived to show that life with a child who has Down syndrome is great and easy and she is such a blessing.  She is all those things most of the time, but it is challenging and taxing and hard too.  There is a balance that can be hard to find, but we do our best.  Sometimes that means we take the easy route and skip things.  Because at that moment, that is what is best.  Sometimes pushing her isn't what is best.  And sometimes, I just don't have the energy to put into doing the work.

It takes a village and sometimes a city to make it all happen.   Sometimes there are days that are hard....sometimes weeks.....and sometimes months that are hard.

One of the hardest things that I have learned to ask for help. We live in a world/society that puts the pressure on mothers to be SUPER MOMS!  We have to do it all.  Be it all.  ALL.  THE.  TIME.  I wanted to be that mom.  I strived to be that mom.  Pretended to the outside world that I was that mom.

Asking for help....even from my husband....felt like I was failing at my job.  Asking for help, meant that I had to admit to the outside world that I wasn't a super mom and I couldn't do it all.  Admitting it to myself was easy, but admitting it to the world is hard.

Here's the thing, God didn't put us on this earth alone.  He created partners for us.  And I got the best!  And he created friendships.  I got the best of those too!  He created families and church families and neighbors.  He did that because we weren't meant to be alone....We weren't meant to live life alone.  We are meant to lean on each other and help each other and befriend each other and help each other.
This journey has changed me.  I could never do it all on my own, but now I can readily admit that and actually ask for help when I need it.  NOT asking for help, does not benefit me or my family and we get burned out very quickly.  

I hope that it has made me a better friend as well.  When I can, I try to practice random acts of kindness.  I try to drop a meal off for a friend just because they could use it or stop by with coffee or insist on helping, because I know that asking is hard. 

I have learned to worry less about what the world things and more about what my husband and kids think and feel.  It doesn't matter to them if I do it all.  It just matters that I do what I can with love.
My encouragement to you is this:
First pray.  I always heard the saying, God won't give you more than you can bear.  But when Aubrey was born, a friend reminded me that God IS going to give me more than I can bear, so that I will lean on Him and trust in Him and call on Him for help.  And He is going to carry me, when I just can't do it any more.  My faith is what makes this journey a success.  My faith is what gets me through, because my God is so great and good.  There is nothing He can't do and provide for us.  My Aubrey's life is planned out by Him and His plan is better than any plan I could come up with.

Do not find shame in asking for help.  I don't think it gets any easier, but when you are able to actually have a conversation with a doctor without 5 kids in the doctors office with you, it will be worth it.  

We all have struggles and challenges.  Mine might just be more visible to you, as I chase my two little ones down at the grocery store or volleyball game.  But we all have something we are dealing with.  So take the time, to help someone out.  Bring them dinner or coffee or muffins to make the morning smoother.  Reach out to someone that you haven't in a long time and just let them talk.  Just be a friend.

Monday, October 13, 2014

Worry and change of plans

I just finished a long post....but my computer is refusing to publish, so I'm blogging on my phone...which is not fun or easy. But I didn't want to go another day without posting.  
So here is a few pictures of our everyday joy!  Aubrey loves to cook/bake and her sisters are so patient and encouraging when she asks to help. 
She isn't always easy to work with. And it's her way or the highway most of the time. 
So glad these girls have each other!

Thursday, October 9, 2014

Physical Therapy - Day 9

Carrying her own library books and checking them out herself
 For Aubrey's entire life, we have pushed her to be her best.  And to do what typical kids do or what came next in her development.  It has made her a better version of herself.  She is driven and determined and I love that about her....most of the time.....except when "all by myself" turns into a very time consuming event....and I'm in hurry:)  She is very independent and usually willing to try doing it herself first or with minimal assistance.
Climbing on the playground at school
Aubrey hasn't had Physical Therapy (PT) for two years.  It wasn't provided her at the school and it just didn't fit into our schedule to do it outside of school.  We have surrounded her with a very active lifestyle and there isn't much that this girl won't try to do.

Riding her modified bike - I don't know about you, but I ALWAYS ride my bike in my swimsuit:)
 Yesterday she had a PT evaluation done.  We are blessed with people in her life that always focus on what she CAN do and her strengths FIRST and then let us know what can be worked on and improved upon.
Balance walking on the bleachers 
 Her PT let us know that she is very strong for someone with her diagnosis and age!  She does very well in most areas of daily activity.  There are certainly things that we are going to work on with her, but her PT is actually very pleased with her abilities at this point:)  Refreshing to hear.
Making toast HERSELF
To give others an idea:  She is functioning at a 3 year old level PHYSICALLY according to the evaluation done.  It is important to keep in mind that sometimes she can do things that typical 6 year olds can and sometimes, she can't keep up with her 3 year old sister, but on average, that is where she is at physically.

They are going to work on her core strength which will assist her in all areas of life, but specifically they will help her run faster and stabilize herself in her chairs at school and when eating at the table and increase her ability to keep up with the kids in Kindergarten;)  We are excited to be back in PT and working with the awesome Jen!

Wednesday, October 8, 2014

Wordless Wednesday (What we do while waiting at all those doctor appointments) - Day 8

Crayon roll - never leave home without it
Working on squares by connecting dots
I spot 3 letters!
H is for Miss Hall (Sorry Miss Senne....I'm sure she wanted to write S for Senne, but it was too hard)

These A's were supposed to be triangles

Tuesday, October 7, 2014

Slow and Steady - Day 7

She isn't at the same level as her peers.  She isn't at the same level as her little sister.  She isn't at the same level as anyone....She's at her own level and she OWNS that.  And she is proud of that and she celebrates that.  My prayer is that she always understands that and celebrates who she is and what she can accomplish.

 I knew when she was born, that she was going to be delayed and she would never keep up with the kids her age.  When Emelia was born, I knew that one day her little sister would pass her up, in all areas of life.  What I didn't know, is how that would feel...until this year.
Emelia is faster in the gross motor areas.  She can ride a bike faster and run faster and is swimming faster and jumping better and dancing more.
 Emelia is better at fine motor skills.  She cuts with more ease and is writing most of her letters without frustration.  She can copy her name off her desk.
They are essentially the same height and weight and wear a lot of the same clothes and they are both potty training.....still.....(we have good days and bad, but that's a post for another day!)
Aubrey CAN cut lines and some circles.  She CAN write the first two letters of her name (Au) WITHOUT looking!  She can write H and M.  She can READ!
It is hard to see Emelia do things that Aubrey has not yet mastered, and with such ease, but I have to remember that ALL of Emelia's accomplishments are just as amazing and praiseworthy as Aubrey's are, no matter the order they happen in.  And no one cheers louder for Emelia's successes than Aubrey!

The day I'm waiting for, is the day that Aubrey realizes that she is not keeping up....
That day, my heart will break for her.  And I will love her and hug her and remind her of how much harder she works to achieve stuff than others and I will remind her of all her successes and accomplishments and I will remind her that all people are different and unique and that if we were all the same, and did all the same stuff, the world would be boring....the same things I remind my other girls, when they are feeling down or left out or not good at something.
 Because, when I step back at the end of the day, my girls are all going to go through emotionally rough patches and Aubrey is no different.  When I step back at the end of the day, she's just like her other sisters in so many MORE ways than she is different.  Sure, her experiences and feelings will look different, but she will still feel the same challenges and heart aches that all kids do.
 It's going to be hard.
No doubt about that, but the good news is that I'm practicing on her 3 older sisters, so by the time a boy breaks her heart.....I'll be ready for that conversation!

Sunday, October 5, 2014

Day 5 - Words

This has been a post that has been on my mind for a long time.  Writing things that might offend people or hurt their feelings is not something that is easy to do….but it is important to write about them because when people say them to US or about our AUBREY, they are offensive and hurtful.  And so often it is done without thinking.  I know I have said things that are hurtful, and now…..I try to do better and think about what I’m about to say before I do.  And I hope that people call me out when I do.

Babies are born all around me, all the time.  I love to hear about pregnancies and genders and births.  There is nothing so sweet as a new soulJ  I’ve done it 5x and there is just nothing else like it here on earth.

This is my little bundle of Aubrey that was born full term at 4lbs 13oz.  She had an AV Canal heart defect and Down syndrome…..and we loved her. 
I hear people say so often, “We don’t care if it’s a boy or a girl, just so long as it’s healthy.”  I’m fairly certain that I said that phrase for almost 4 full pregnancies too, but now I know.  But here’s the thing:  you don’t really mean that.  Sure, you don’t care, boy or girl.  But I’m fairly certain, that healthy or unhealthy, you will love that little one, no matter what.  Right? 

We didn’t love Aubrey any less because she was another girl or because she wasn’t born healthy.  We probably loved her more than our other newborns, who were born healthy, because she needed that extra love to grow and live, while she waited for heart surgery.

My point is, you don’t care about the gender…..and leave it at that.  What you mean to say is, “We don’t care if it is a boy or girl.  We just can’t wait to meet OUR baby.”  Right?  And there is nothing wrong with PRAYING for a healthy baby, but I'm pretty sure, you'll love that little soul, no matter what.  I prayed that Emelia (my 5th baby) would be healthy, because no one wants their newborn to struggle for health, but I was prepared to do it all over again.

I’ve never corrected anyone that I hear say this.  Maybe I should.  I know people say it without thinking or because they haven’t experienced what we have or know someone who has.  But it still makes my heart ache a little when I hear it.  And I think of the friends who are so desperately WAITING to be mothers and haven’t been blessed….because they don’t care boy or girl, healthy or unhealthy.  They just want a baby to call their own.

So next time you find yourself BLESSED with a new life, just take a minute to think about all the love that you will pour into that new life, boy or girl, healthy or unhealthy and be sensitive to your audience.  You just never know....