God is. Archives

Chasing the sun. And the moon.

I wasn’t all that interested in the eclipse, to be honest. I was born with a defective awe gene and most things that make others stand beside themselves in wonder won’t even get me on my feet.  I felt this way all these months leading up to our planned eclipse trip to Moncks Corner, SC.  I was excited to see my family but it was my children and husband who were all about the eclipse.

But that all changed in the span of about 3 minutes this afternoon.

My mom came over to my sister’s house. She had bought cookies and called them different names like moon cookies and sun cakes. She had done an eclipse project last night with all the kids to prepare them for what to expect and then today before the eclipse she did a viewing tutorial with them teaching them how to use their glasses and keep their eyes safe. She handed out the spectacles and the kids ran around with them like it was the apocalypse and then we collected them back up because that wasn’t the greatest idea we have ever had.

We still had more than an hour before the eclipse so my brother said I should have his car.

The people in the background, Aunt Naomi, Mom, and my sister, all thought I should have his car too and, as you can see, they are very happy about it but alas, we were all mistaken because Matt said I should drive his car, not have it so there was a little disappointment.

Anyway, no matter how hard Rabbit tried to keep it from happening, I got to drive this gorgeous blue Tesla and it was a most remarkable experience and, people, I really, really feel like there could be an X in my future. Just look how good this S and I look together.

When we got back it had become so cloudy and stormy and Matt and Joe were freaking out like Chicken Little because the eclipse was coming, THE ECLIPSE WAS COMING, and we wouldn’t be able to see it while it was pouring rain. I felt a twinge of disappointment for Joe because he was so excited but what can you do?

Well, apparently you can drive all over Moncks Corner looking for blue sky like storm chasers (or what’s the opposite of storm chasers?) and it was one of the most entertaining experiences.  All 24 of us jumped in our vehicles and set off in a caravan chasing the sun. My brother and Joe were leading the way in the Tesla and they were hilariously intense about the whole thing, calling everybody in the group with updates and suggestions about where to turn and what direction to go and we only have 11 minutes will we even make it in time and I think I see blue sky over that way!

And we did make it, thanks to the efforts of my brother and my son, who both really, really, really, really, really wanted to see the moon blot out the sun for 3 minutes.

So we got out of our cars on the side of the road and put on our glasses and I hovered over my younger children so much, certain that everybody was going to go blind, that I accidentally looked at the eclipse without my glasses. It was brief and apparently not long enough to cause me to lose my vision but I spent the rest of today waiting for my sight to suddenly vanish.

My mom passed out eclipse gum because she knows how to make things extra fun for the kids and we all watched as the moon swallowed up the sun until the only evidence that it was daytime was the orange ring of fire that poured out from around the moon.

I got my eclipse selfie, even though it really did not do the event any justice because I am no good at these things but I was there and I saw totality.

And, guess what guys. It was amazing. Seriously amazing. What I thought would be a cool, but somewhat boring event turned out to be one of the neatest things I’ve ever seen.

The entire day was perfect. Driving the Tesla, chasing the sun, seeing the total eclipse with my family – minus Kait and Vince and Nina who all had to work 🙁 …

And then Matt had Joe jump into the driver seat and let him drive the Tesla for a bit before he took off for home.

It was a very good day.

Digg This
Reddit This
Stumble Now!
Buzz This
Vote on DZone
Share on Facebook
Bookmark this on Delicious
Kick It on DotNetKicks.com
Shout it
Share on LinkedIn
Bookmark this on Technorati
Post on Twitter
Google Buzz (aka. Google Reader)

I have a lot of words today.

I’ve put together 21 things I’ve learned and observations about being the mother of child with Down syndrome. I’ve only been doing this for a year so far so I’m sure I still have tons to learn and I’m interested in seeing how my views change and grow in future years. But as of right now, this is where I am.

wp-1491084824692.jpg

  1. Having a child with Down syndrome is so easy.
  2. Having a child with Down syndrome is so hard.
  3. How I reconcile numbers 1 and 2, I don’t know. But they are both true.
  4. In the beginning, I felt broken and lived most of my days in denial to avoid dealing with it. Other moms who had been where I was said that it would eventually be okay. That I would be okay.  They made me angry because I didn’t believe it would be that way for me.  I thought that I would be the eternally broken mother that would never be able to accept what was and that I would fail Lanie because of that.
  5. They were right though. Everything is okay. Really okay.
  6. But I’m still afraid I am going to fail her.
  7. I’ve learned that a baby with Down syndrome is just a baby.laniebunny She eats and poops and has opinions about things. She giggles and plays with toys and rambles on about nonsense in her baby babble talk. She loves her daddy and her siblings and vanilla icing. She grows and meets milestones and is always learning new things. She cries when she doesn’t get her way. She dances when she’s happy.
  8. I have learned that many mothers of children with Down syndrome can be sensitive and snarky about what you ask and how you ask it and what order the words are in and people first language, people! It’s too hard for me to remember all the rules and I have a child with Down syndrome! I get why people are hesitant and uncomfortable to ask about our kids.
  9. I am really okay with people asking me questions about Lanie’s Down syndrome.
  10. Lanie has to work hard at so many things and everything has to be therapy.  I knew this but didn’t           understand it. Most babies learn things in a natural pattern with no need for much encouragement but with Lanie, we have to make her work for it, reach further, try harder. Simple things like getting a toy that’s a few inches out of her reach take every bit of effort she has and she often fails. It makes me sad to know this will be her whole life.
  11. But unconditional love, forgiveness, generosity, joyfulness and optimism are things likely to come naturally to her thanks to that extra chromosome. If only these attributes were valued more in our society.
  12. Parents of children with Down syndrome (me!) are unbelievably proud of their kids. lanieclapsmarch31We want to talk about them and show them off and celebrate every little thing they do because they are amazing and you won’t understand this unless you have a child with Down syndrome. You’ll just have to trust me. Amazing.
  13. Lanie has numerous therapists.  Most of them live right here in our house and are under the age of 18. maggiehugslanie It’s really cool the way my other kids love her and play with her and work with her. They are so encouraging.
  14. Knowing what I know now, there is nothing I could go back and tell myself that would make any difference in how I felt and handled the news that Lanie was likely to be born with Down syndrome.  I had to feel what I felt to learn what I’ve learned to grow as much as I’ve grown to get where I am now.
  15. Having a baby with Down syndrome slows everything down. It’s such a blessing to get to enjoy each stage of babyhood just a little bit longer than I did with my typical babies.
  16. But, also, I get discouraged by this more than I’d like to admit.
  17. I want to buy all the therapy things. Anything that Lanie’s therapists have in their rooms I want to buy for her.  It’s not realistic but it doesn’t stop me from trying.
  18. People are sometimes uncomfortable around me now. I know they don’t mean anything by it, and it isn’t terribly visible, but I can feel it in all its heaviness none-the-less.
  19. Having a child with Down syndrome can be very lonely.
  20. God has spent many years preparing me for this. Even though it took a long time for me to accept that Lanie had Down syndrome, looking back I can see that before she was even a thought, God was already teaching me many things to prepare me for her. 
  21. And it’s a better place since she’s come along.

And if you have run across this page because you are just starting this journey and are searching for help, this is the best I can offer you:
Be patient with yourself. It takes time to get through the shock. It is an emotional rollercoaster and, for me, it didn’t matter how positive anybody was about Lanie’s diagnosis, I just had to let myself feel those emotions as they came. After a while, they didn’t come as frequently and joy has now replaced any sadness, for the most part. You may not be ready to hear this yet so just put this in your pocket for when the roller coaster slows down: Someday soon it will be okay. You will be okay.

Digg This
Reddit This
Stumble Now!
Buzz This
Vote on DZone
Share on Facebook
Bookmark this on Delicious
Kick It on DotNetKicks.com
Shout it
Share on LinkedIn
Bookmark this on Technorati
Post on Twitter
Google Buzz (aka. Google Reader)

Our number 2. Joe.

When he was little, maybe 5, Joe wanted more than anything to be a superhero.  He switched between Superman and Spiderman and when he started to jump off things to see if he could fly or swing from a web, I decided it was time for a conversation. When I told him he couldn’t actually become a superhero, it was just pretend, he broke down in tears and told me that he thought he already was one.  Realizing that I had just broken his heart with that news made me unbelievably sad but he quickly moved on to believing he was actually Link and everything I said to him suddenly made sense.

(picture of Joe dressed as link to be added as soon as I locate it because it is awesome.)

Joe is 18 now and while he has not given up on his dreams of being a superhero, he has certainly reevaluated what that dream will look like in the real world and is working on a criminal psychology degree so he can help put the bad guys away and save the streets of Pensacola from madness and mayhem.

12

He also has this huge heart and a compassion that most people don’t get to see.  I wish I could predict the next time he was going to sit on the side of the street with a homeless man so I could get a picture without him knowing. He brings them food, breaks bread with them, and gets their stories. He sees their needs, individually, and does what he can to provide.

And he loves his siblings.

31705980720_d5b5d8fa06_o (1)

He’s a very serious person but that doesn’t stop him from playing with the littles just about every day. He asks them questions and gets silly with them.

IMG_20160727_160420671

He encourages them.

IMG_1213

And cares deeply for them.

DSC_0252 (1)

He invests time with the older siblings because relationships are important to him.

IMG_3971

They are important to him.

IMG_4009 (1)

Joe takes advice very seriously and while he doesn’t always agree with his father and me, he considers what we say and holds our opinions in the highest regard. He meets with our pastor on a regular basis to ask questions and gain a better understanding of The Word. He wants to do life right and is constantly working to create good habits, meet goals, and learn more.

31271447533_6668d34d86_o

I am so proud of the son he is and the man he is becoming.

DSC_0302

And I cannot wait to see what his future has in store for him.

31949664321_82d752c0ec_o

Digg This
Reddit This
Stumble Now!
Buzz This
Vote on DZone
Share on Facebook
Bookmark this on Delicious
Kick It on DotNetKicks.com
Shout it
Share on LinkedIn
Bookmark this on Technorati
Post on Twitter
Google Buzz (aka. Google Reader)

It’s odd to me that even though it is super easy to lure Kait is over here (food) I never can seem to get her in a picture with the younger three girls.

DSC_0720

I’ve also realized that I take way more pictures of Lanie than I do anybody else.  I think that is partly because she’s the baby and we’ve always had more pictures of the babies than the older kids, and partly because of her rough start and me not wanting to take any moment for granted.

And any pictures I do take of the older kids quite often involve them holding Lanie.

DSC_0252 (1)

Because I love how they love her.

DSC_0373

And I want to keep these moments forever.

DSC_0632

Because they are so, so good.

DSC_0374

If only I could stop and really live in every moment.

DSC_0570

DSC_0491

Somebody get me a pause button. Quick.

Digg This
Reddit This
Stumble Now!
Buzz This
Vote on DZone
Share on Facebook
Bookmark this on Delicious
Kick It on DotNetKicks.com
Shout it
Share on LinkedIn
Bookmark this on Technorati
Post on Twitter
Google Buzz (aka. Google Reader)

My dad had this mug made for me 22 years ago when my oldest child was just a baby.

DSC_0831

It’s lasted through many military moves and 100’s of cups of coffee and many kids drinking hot cocoa. The picture on the mug of Kait at less than a day old has faded but that child has grown and flourished and is now well into adulthood and I couldn’t be more proud to call her my daughter.

At 22 she’s managed to wrangle herself a training job at NFCU, teaching employees how to do mortgages and helping them keep up with the ever change laws and regulations.  She has her own place and a dog and a cat and a guy who is over here all the time because he is very serious about her.

16708169_408327879504469_6109836414607075319_n

She loves her family and even though she doesn’t live here with us anymore she manages to visit us numerous times each week and spends every Sunday hanging out with us even when there is no football game to watch and that is really saying something.

31240215314_b401eeb2fe_o (1)

I’ve always said that Kait and I have our differences but the further into adulthood she gets, the more we talk openly with each other, the more I realize that we are quite similar and our differences aren’t really all that big or numerous.

31240009774_380d53fd28_o

She is delightful and funny and has such a child-like silliness that keeps us all smiling.

31706057710_632eda85cd_o

And she knows how to have fun and helps us to not take ourselves so seriously all the time.

31270786793_82e666edd7_o

Just being around her makes me spew coffee out of my nose.

32064230075_04dde904f0_o

And being her mom has made me a better person.

31240623514_9623736d81_o

I could go on and on about this girl but Lanie is getting hungry so I’ve got to abruptly stop writing and get this blog post up because if I don’t publish it right away I’ll forget about it and it will get lost.

Digg This
Reddit This
Stumble Now!
Buzz This
Vote on DZone
Share on Facebook
Bookmark this on Delicious
Kick It on DotNetKicks.com
Shout it
Share on LinkedIn
Bookmark this on Technorati
Post on Twitter
Google Buzz (aka. Google Reader)

Perfect Chaos.

I think my perfect sleep hours would be 9:30 pm to 5:00 am. I’d sleep undisturbed and wake feeling completely rested and ready for a new day.
I would get up while the house was still quiet and actually drink an entire cup of coffee without having to reheat it 4 times and write a complete blog post and update my bullet journal.
I imagine I’d have thoughts. Real, uninterrupted thoughts. The kind of thoughts that adults have when they’re adulting. Thoughts about the meaning of life and foreign heads of state and who on earth invented algebra because I’d like to have a talk with them.

At around 7:30 my kids would one-by-one begin to make their way out of their rooms. We’d talk about dreams while we eat bacon for breakfast and then get our day started.

Reality, however, has 10-month-old Lanie falling asleep after midnight and waking up between 8 or 9 so when I get up for the day chaos has already set in.

Maggie is wearing her tights as pants and her shirt is on inside out and backwards and she is trying to get the last bit of oatmeal powder out of a used oatmeal packet she found in the trash can. Then I step in a half-wiped up orange juice spill while trying to clean a glob of something off the front of the dishwasher because my teenage sons started a ninja fight while making some breakfast. And while attempting to get the morning sorted out I misplace my fresh cup of delicious hot coffee which totally defeats the purpose of brewing it in the first place and who on earth thought it was a good idea to put a pull up in the washing machine?

And I feel like I’m taking crazy pills!

But then.
The boys argue over who gets to hold Lanie first and she is all smiles with them fawning all over her and my heart melts at how much they love her. Lucy reminds me again how much she missed me all night while she was sleeping and Maggie says the blessing and she thanks God that Joe (her oldest brother) gets to come visit so often (he lives here) and somebody finds my coffee in the microwave because I had forgotten that I had reheated it just as Joe walks in from his early morning shift at the coffee shop with a white chocolate mocha all for me.

And we all laugh.

And I’m reminded that in the chaos, life is so good. So worth all of the sticky and smelly and accidentally washed pull ups.

Once my kids put an entire package of bacon in the pantry instead of the fridge and we didn’t find it for days and had to throw the whole thing out and I think if we could make it through that, we can make it through anything.

Digg This
Reddit This
Stumble Now!
Buzz This
Vote on DZone
Share on Facebook
Bookmark this on Delicious
Kick It on DotNetKicks.com
Shout it
Share on LinkedIn
Bookmark this on Technorati
Post on Twitter
Google Buzz (aka. Google Reader)

adoptionawarenessGrowing up I clearly recall my home being a safe place, my safe place. If there is anything of more value to a child than a feeling of safety and security in a loving home, I don’t know what it is. I look back on my childhood and feel overwhelmingly thankful that my parents gave us a sheltered childhood.  We were nourished and taught good and right things and never lacked for anything and when the teenager that lived two houses down was irresponsibly sighting his rifle before going hunting the next day and I was sure his intention was to kill me…
I instinctively knew where to run for safety.

In the 27 hours of classes we were required to take to become approved to adopt through foster care here in Florida, I learned that every child in the foster care system has been through a traumatic experience that has cost them any hope of feeling that kind of safety. The vast majority of them have been either forcibly removed from their homes or given up voluntarily by one or both parents.  It leaves them feeling vulnerable and alone. The ultimate betrayal – turned away by the people who were supposed to instinctively long to protect them.

I have learned what kind of abuses take place and what effect that can have on a child. I learned that it is usually bad. Really bad.

I have learned that we, individually and as a society, have gotten far too comfortable with their cries.
Deafening. Silent. Raw. Hidden. Heartbroken.

I have learned that I can’t do that anymore.
And I have learned that sometimes all you can do is pray.

I have learned that there is a lot of fear in adopting a broken child and a lot of thought and consideration has to go into it before a challenge like that should be taken on.
And I have learned that no matter how much thought and consideration you give it there is no way to prepare yourself.

I have learned that the system that has been put in place to facilitate the best possible outcome for both adopter and adoptee is broken. I’ve learned that quite often, out of an understandable desperation to find children a home, the people in charge, the experts, will break the most essential of those rules and set everybody up for failure. Because there aren’t enough foster homes. Because the kids are close to being too old to place. Because they might have a disability that is just beginning to show and it’s RIGHTNOW or possibly never.

And that’s when failure happens.  And everybody is to blame but nobody is at fault because the real failure is not doing anything at all and nobody involved can be accused of that.

I have learned that it is hopeless.

And I have learned that there is hope.


 

Digg This
Reddit This
Stumble Now!
Buzz This
Vote on DZone
Share on Facebook
Bookmark this on Delicious
Kick It on DotNetKicks.com
Shout it
Share on LinkedIn
Bookmark this on Technorati
Post on Twitter
Google Buzz (aka. Google Reader)

31 for 21 Day 19. Sometimes rough.

Things were hard for me for a while.  I didn’t even realize how hard until I was able to look back on the last year with the clarity of hindsight. And while I’m not happy with my then attitude and how I felt about things 10 months ago, I am glad that my now attitude reflects so much growth and a new understanding about life.  Things are different now. Things are good.

But I still find myself having rough days and there are always appointments to make and therapies to try and wild thoughts of what could still go wrong because one little extra chromosome can wreak so much havoc.

Therapy appointments, and weigh-ins, and blood work, and why is she sweating, and NOBODY MOVE SHE JUST LOST A CONTACT, and what the heck is T3 and TSH, and getting her to take those disgusting vitamins, and holy hound dogs petechia = leukemia does my baby have cancer?

And her eyes.  I can get so sad about her eyes.

Sometimes I feel so down about Lanie’s aphakia and I’m sad that I even know what that word means.  I feel sad that she has to wear contacts or glasses to have any kind of useful vision and, while I don’t know what either of those things feel like, I can imagine it to be uncomfortable at times, especially for a baby who can’t adjust her glasses or let me know when her contacts need cleaning.  She can’t tell me when her contacts are dry or itchy, or if her glasses are hurting her head, or if she just needs a break for a little while.

wp-1476910170597.jpg

I feel sad that she has to wear contacts or glasses all the time. All. The. Time.
And that this will go on indefinitely and she may be a teenager before she can get her implants.

I feel bad that I can’t know for sure what her vision is like.  Are the contacts blurry? Could we be doing more to help her see?

wp-1476909944826.jpg

Lanie’s ophthalmologist sometimes needs to do extensive eye exams that make her sad.

And that makes me sad.

I have to remind myself often, as Dr. Mickler firmly told me on the morning of her first surgery when she was just 7 weeks old and I was asking a million questions that he had already answered at her appointment, that the alternative to this would be complete blindness.

And what sometimes feels so frustrating is actually a miracle. Something to be thankful for.

wp-1476910399771.jpg

And that, clearly, she is not blind now.

wp-1476920541509.jpg

She sees us and she smiles.

wp-1476914409668.jpg

And that is really good stuff.

Digg This
Reddit This
Stumble Now!
Buzz This
Vote on DZone
Share on Facebook
Bookmark this on Delicious
Kick It on DotNetKicks.com
Shout it
Share on LinkedIn
Bookmark this on Technorati
Post on Twitter
Google Buzz (aka. Google Reader)

Happy Independence Day, ‘Muricans! 

oldflagI don’t think many people, especially our younger generation, really appreciate what it means to be a citizen of the United States.  I was born in Rhode Island. Do you realize what kind of blessing that is?  What kind of gift it is to be born into the best country in the entire world? A country people risk everything, including their lives trying to get into?

Yes. The United States has its issues.  It’s a giant relationship and we have a lot of work to do but when you think about it, all of the best relationships in our lives require work and patience and care.

It’s July 4th, people.  Let our celebration of freedom mean something. Tell your kids what our independence means for them. Make a vow to teach them to love this country; their country. The only way to heal our nation is for the next generation to care enough to protect it.
People died for America. For us.  Take it seriously.

But, also, laugh.
And light a sparkler or something.

Digg This
Reddit This
Stumble Now!
Buzz This
Vote on DZone
Share on Facebook
Bookmark this on Delicious
Kick It on DotNetKicks.com
Shout it
Share on LinkedIn
Bookmark this on Technorati
Post on Twitter
Google Buzz (aka. Google Reader)

My 3 month old wears contacts.

I don’t have many pictures of Lanie, and I only have one of myself with her and it really isn’t a good picture at all and it was taken with a smart phone in the hospital right before Lanie’s first surgery so everything was just weird.  I am unbelievably sad about this and really disappointed that I’ve missed recording so much of these first 3 months, but Kait’s camera is broken and I’m just not the photographic genius I always wanted to be.  I do take pictures, but they always turn out fair to awful.  I’m just saying this to let you know that I’m desperate so even though these pictures aren’t the best, I tried.

Lanie got her contacts last Monday and her brain is slowly learning to take all those new images and turn them into something.  I can see the daily progression in her eye control, her neck strength, and her attempts to communicate with us.  I’ve also noticed that she is beginning to associate sounds with the thing or person making those sounds.

wp-1466179301415.jpg

It is truly astonishing how necessary vision is to a child’s development. Her ophthalmologist told us that she was essentially blind before her cataracts were removed, with zero vision in her left eye and only some light and maybe some color vision in her right eye.  Nothing useful.  Then, after her surgeries, he said she could see but without focusing power everything was just a blur of shapes and colors.  So this past week everything has been brand new for her and I really love all the smiling she does now.

wp-1466390465369.jpg

It’s really crazy that my 3 month old wears contacts.  Seriously, people that learn this cannot wrap their minds around it.  It really is a gift though because her glasses, which are still being made because it takes at least two weeks to create the lenses she needs, are THISTHICK and I think it would be disappointing to not be able to see her eyes very well as they light up when she learns new things.

Her contacts are pretty thick too, but they don’t detract from her eyes at all.  If you look closely you may be able to see the contacts in this picture.

img_20160618_130026171-picsay.jpg

She really does have the prettiest eyes.

Other than her eyes her health appears to be very good.  I still nurse her often but I also pump about 12 oz a day and add whole powdered goats milk to it to boost the fat and calories she’s taking in and she is finally gaining weight the way she’s supposed to. It is still a lot of work to make sure she is eating enough each day but it has definitely been worth it to see her get a little meat on her bones.  I’m hoping in a month or so I’ll be able to start weening her off the bottles and just nurse her normally.

FYI if you are ever find yourself needing to boost your baby’s caloric intake – I added formula to her milk in the beginning because that’s what her pediatrician recommended.  That turned out to be hard on her tummy and I started looking for alternative ways to boost her calories.  I came up with the idea of adding powdered goat’s milk after reading that many moms who cannot breastfeed are using goat’s milk as a base to make a better formula because it is easily digestible.  I chose powder because I wanted to boost the vitamin rich breast milk she already ate, not add more liquid.  I decided to add one scoop of it (I think it works out to be two tablespoons) to each 4 oz bottle of breast milk.  It took her a few days to get used to it but she does very well on it now.

She’s rolling over all the time now. She started rolling over from front to back at about 2 weeks, and has been rolling over from back to front from about 2 months.  She even rolls over when she’s swaddled.  It scared me to see her face down without her arms free to help her lift herself up so I’m not swaddling her anymore.

She’s doing so much better than we had hoped for and at her appointment today Dr. Mickler said he doesn’t need to look at her eyes until September. He’ll test for glaucoma then so please pray she’s one of the few who does not have that problem.

I can’t think of anymore updates to give so that’ll be it for now.

Digg This
Reddit This
Stumble Now!
Buzz This
Vote on DZone
Share on Facebook
Bookmark this on Delicious
Kick It on DotNetKicks.com
Shout it
Share on LinkedIn
Bookmark this on Technorati
Post on Twitter
Google Buzz (aka. Google Reader)
 Page 1 of 4  1  2  3  4 »