Welcome to my blog!

A blog about our busy family with two amazing kids, one of whom happens to have Down syndrome!

Sunday, September 30, 2012

31 for 21

I'm going to try really hard to do the 31 for 21 blog challenge this year!

It's posting every day for the month of October (31 days) for Down syndrome awareness (21 chromosomes). October is Down syndrome awareness month! I never thought I'd be so happy to celebrate October but I really am.

So, get ready! I might not make it every day but I'm certainly going to try.



Friday, September 28, 2012

September 26th

We just passed a very important anniversary. September 26th.

September 26th 2011 we woke up, got ready and headed off to the doctor to find out if our baby was a boy or a girl. I just knew it was a girl, Greg was convinced it was a boy.

I was right, baby was a girl! We knew her name would be Lauren since before she was born. We didn't expect to find out that she had Down syndrome. The tech was very quiet and then brought it the MFM (maternal fetal medicine aka high risk) doctor. As soon as he came in I started crying. He said, "The ultrasound findings show a few markers that make us concerned. We see a thickened nuchal fold,a shortened nasal bone, shortened long bones, a bright spot on the heart and a hole in the heart."

I immediately said, "You think our baby has Down syndrome." The complete shock I felt is indescribable. It felt like an out of body experience. When I think back to that day I still feel like I watched it happen rather than actually being a part of the conversation. It is the weirdest thing, I wish I had words for it.

I had recently graduated from nursing school and we learned about Down syndrome in school. I actually had an adorable patient with Down syndrome. Funny thing? I was pregnant with Lauren at that point and didn't know it yet. Feel free to think I'm crazy but I think God was preparing my heart.

The doctor said we would have the option of having an amniocentesis (obtaining a sample of amniotic fluid with a large needle and testing it for chromosomal anomalies) but that we would meet with a genetic counselor first. We could get FISH (don't know what that actually stands for, but it means rapid results) results in 48 hours and a full report in 10 days.

Then he said that with those results we could "make our decision". Wow. I understand presenting the option, I do. Studies have shown that the vast majority of women in that same situation would make the decision to terminate.

Greg and I looked at each other and then I very calmly replied "Termination is not an option for us and I don't want it brought up again." It wasn't.

I used Carrie's office to call my twin sister at work. A decision like having a huge needle go through my belly was not a decision I could make without her. As soon as she answered, she knew something was wrong. I was crying. I said, "Amanda, they think our baby has Down syndrome and they want to do an amnio. What am I supposed to do?" I couldn't have made it through those moments without her. Greg is my husband, my rock. But Amanda is literally the other half of me. We're identical twins. She told me that she loved Lauren more than anything in the world and she would support our decision to find out for sure and she would also support us if we decided to wait it out.

We called our parents on the way home. I felt so defeated that Greg had to literally support me when we walked to the car. It was one of the very few times I have seen my husband cry. I know he was trying to stay strong for me.

They said we certainly didn't have to have the amnio. Our chances of having a baby with Down syndrome once all of the ultrasound findings were applied was "Upwards of 80%". We were pretty confident that she would have it. But we needed to know for sure. So I had the procedure. We found out 2 days later for sure. But September 26th is the day I knew in my heart.

I wish I could go back to that day and hug myself. I wish I could've seen into the future and known how much our lives would change for the better. While I totally understand that all the feelings of grief, worry, despair, sadness and confusion are totally normal and even necessary, I still can't believe I was sad about Lauren.

My Lauren. I felt like I was grieving the Lauren I wasn't having and had to love a completely different baby.

I thought Ryan would resent her:
 
 
I worried that I wouldn't be able to connect with her:
 
 
 
Embarrassingly, I worried that she wouldn't be pretty:
 
 
Or happy:
 
 
Or be able to play with toys:
 
 
I was afraid she wouldn't have a sense of humor:
 
 
I worried that Greg wouldn't bond with her:
 






 
I worried that she wouldn't be fashionable:

As you can see, I was worried for nothing. I was afraid of the unknown. I am so glad that I've had a year to look back and realize what a gift we've been given. I love my kids more than anything on this plant and I wouldn't change a single thing about either one of them.

Happy September everybody.

Monday, September 24, 2012

Our family pictures!














 
We are so so happy with how they turned out!

I have such an attractive family!

Another sneak peek of my three favorite people!
And one more of the cutest couple around...


See? Abbie is the BEST! If you live local and need pictures done you know who to call. www.a-lloyd-photography.com

Sunday, September 23, 2012

Sad musings and a family photo!

I am in a funk lately and I don't like it.  I think part of it is because I'm so freaking tired from work, therapy, doctor's appointments, preschool and life.  Greg and I haven't had any time together with just the two of us lately so we haven't really been able to just talk and hang out. Even after the kids are in bed he has homework and/or I'm tired and go to bed. Or I'm working since I start at 7pm. Greg is working full time and taking 2 classes which means he's gone 3 evenings a week. We are both just so over worked.

Have I mentioned that what seems like all of my friends are pregnant? I am super excited for them all. I love babies! But I have to admit it makes me a little bit sad. Actually a lot sad. I won't get to feel the amazing feeling of a baby moving around in the womb again. I won't get to nurture and grow new life. And I'm sad. My pregnancy with Lauren was extremely stressful, obviously. I didn't feel a lot of joy, I was grieving, I was extremely worried and I was barely hanging on some days. I don't mean to make it seem like the only reason I want to experience pregnancy again is to get a do-over, though I suspect that's part of my problem. The plain truth is that I want another baby. Not tomorrow, not even next year and probably not even the year after that. Some day.

But Greg feels done. As in never ever wants to have a third baby. Some days I even agree with him. He hasn't sprung this on me, his mind hasn't recently changed, I haven't been misled. He's always only wanted to have two kids. And we are extremely blessed to have two perfect children. I've always wanted three. He wins because financially he's right. Two makes a lot more sense than three. And I think it's really important that having a child is a mutual decision. But I still get to  be sad. It's just hitting me more lately as Lauren gets bigger and grows out of her tiny little dresses and tiny little onesies and tiny little pants. I don't feel ready to pack those things away knowing I won't get them back out to use for my very own new baby.

Ugh, enough of that. I'm getting teary eyed writing it. Here's for the excting stuff!

We had family pictures taken today!!! Abbie did Lauren's newborn pictures so I knew our family pictures would turn out amazing. Abbie is a wonderful photographer and we are a good looking family- what could go wrong? Famous last words.... Ryan hates getting his picture taken! Today was no exception, LOL! Here's a sneak peek and I'll definitely post more when they're all done! Take a look at Abbie's website here: http://a-lloyd-photography.com/ She is so talented!!

Friday, September 21, 2012

MOPS, fall and future doctor's appointments

Well hello there! We are enjoying this beautiful Michigan fall weather here. I wish it could stay like this all year round. It's been in the 60's and sunny. My favorite! I was baby-free this morning as both kids had a sleepover with Greg's parents. My morning was quite relaxing! I called my sister (who lives 8 houses down) and we went for a walk through our beautiful neighborhood. She carried her sweet baby and I drank coffee. She says that my mom and I are the only people who drink coffee while going for a walk. Great minds think alike!

MOPS finally started back up this week! It was a long summer without it. MOPS is Mothers Of PreSchoolers. It is the best ever. We have around 100 women in our church's MOPS group this year! We meet every other week. There is a place to check in the kids so the moms can relax, chat and hear about God. Lauren gets to join me this year because the pediatrician doesn't want her in the nursery through RSV season. She is a wild animal now and was grabbing at everything, pulling my hair, giving kisses and of course being adorable. And distracting. Luckily my amazing mother in law works at the church and came and got her for a little bit! Ryan absolutely refuses to leave church after MOPS until we've seen her. He marches himself back to her office and of course knows right where she keeps the candy :) He wanted to stay with her all day and then spend the night so he was quite sad that we had to go home for a nap first. Adorable!

At MOPS someone mentioned that they were surprised to learn that Lauren had Down syndrome because she didn't "look like it". That wording doesn't offend me at all but the idea does surprise me! I think it's very obvious. Is it just because I know? I'm not sure. It kind of caught me off guard, we don't get the "Really?! Are you sure?!" comments as much now as when Lauren was a newborn. We get a lot more stares in public now and I can see the questions in peoples' eyes. I would always rather people ask although I realize it would probably offend a parent of a typical child to be asked.

That's something I've been thinking about lately. To us it's been much more obvious lately that she has Down syndrome. I thought it might bother me a little more than it does. It does a little bit to be completely honest. Every once in a while I'll look at her and wonder if that's all other people see. Can they see past Down syndrome and just see Lauren? I get a little sad about it sometimes. She is so much more than her chromosome count. I forget that she's small for her age until somebody acts surprised that she's 7 months old. She is doing so well for her that I forget to compare her to typical kids. Definitely not a bad thing!

She is doing so well with the things that her Early On teacher is teaching us about helping her sit up and helping improve her muscle tone. She will be getting Hip Helpers soon! They are like little spandex bike shorts sewn together in the middle. They'll help her hips to not froggy out so much. We're working on sitting up with minimal support. She can actually fit in her high chair now since we have it filled with foam.

She sees her helmet  doctor next week. Hopefully they can do something to make it not as big, it makes her head red where it rubs. We only make her wear the helmet at night for this reason. We could've gone back to have them adjust it and add more padding but it's only been 6 weeks. Her head does look a lot rounder already. It helps that she's become a tummy sleeper and she rarely lays or plays on her back. Honestly, we don't have time to make another trip to Ann Arbor when we have to go back anyways. Between preschool for Ryan, home visits for Lauren and doctor's appointments for Lauren- then adding in work for both Greg and myself....life is so busy here!

 It looks like (fingers crossed) that we don't have to go back after that appointment until her audiology appointment (for her hearing) on the 26th!! She'll see an ophthamologist for an eye evaluation at some point but we need a referral and approval from insurance first. I don't at all mind if Lauren needs glasses. I'm blind as a bat without mine! But I would love if we could hold off on them until after we're completely finished with her helmet therapy. I like to travel light and if I have to remember a bunch of stuff there is a 100% chance I will forget something. The same goes for hearing aides. I don't mind if she needs them but I would love if we can wait until after we're done with the helmet. And I hope that her ear canals are big enough. I've had one doctor say her ear canals are typical sized and one say they are very tiny! It seems to me that her hearing is perfectly fine for now. My mom said she noticed with me at a younger age than Lauren is now. I had moderate hearing loss as a kid. Luckily for me ear tubes helped a ton and I sat in the front at school. In hindsight I wish I would've had hearing aides even though I would've been embarrassed at the time. It would've been better to know what the heck was going on! Now my hearing is fine unless I'm sick and I'm really good at reading lips.

We're having family pictures done on Sunday!! I am SO excited!! Our photographer is extremely talented- she did Lauren's newborn shoot. I can't wait. I dreamed about getting pictures done of the four of us while Lauren was in the hospital. I worried we'd never get the chance to do this. And fall is my absolute favorite time of year!

Doesn't she look ready for a photo shoot??

Wednesday, September 12, 2012

Lauren's first home visit

Early intervention services through the school district (called Early On in our state) started yesterday for Lauren!!

At first I was concerned (and still am to be honest) because our program doesn't have separate PT/OT but a general teacher trained in both areas. I've heard that often times this brings a wide but shallow knowledge base.

This does not seem to be the case with Lauren's teacher!! Lisa is awesome and Lauren loves her. She is already helping us out a ton. She asked how feeding was going and I said it's hard to put Lauren in the high chair. She's so small that the top of the tray comes up to her eyebrows! She can't see what's up there, much less reach for anything. So we've been feeding her in her bouncy chair when she gets solids.

Lisa is going to bring foam next week so that Lauren will fit in her high chair!!! I've been kind of sad that Lauren couldn't sit in her high chair like most babies. I didn't really realize that accomodations could be made. I was thinking of how to get a smaller high chair!

Lisa also asked what I was most concerned with. Lauren is doing great with rolling, pivoting while on her belly, reaching for toys, babbling, and has even started scooting her self forward on her belly and getting her knees under her. But I feel like she won't learn to sit up until she's 10 years old at this rate! She's just not interested, she'd rather move around.

She showed us how to sit Lauren against the couch and put the Boppy pillow in front of her for support. Here's a picture:
 
Look at her! She's sitting there holding a toy! She even has a hand on her knee to steady herself. I never would've even thought to do this to help Lauren sit up. I asked about the Bumbo seat but apparently it encourages rounding of the pelvis and slouching instead of upright sitting.
 
I'm so excited for next Tuesday!! Lisa will come every Tuesday during the school year. Isn't that amazing? And it's through the school district, so we don't pay for it. I just feel like this is amazing. I never even knew a program like this existed until we had Lauren.
 
I am so excited about what we can learn in our Tuesday sessions. There's baby group as well on Tuesday mornings but siblings can't attend. I'm not getting a sitter every Tuesday morning. Playing with her big brother is group-like enough for right now!


Monday, September 10, 2012

Could we fit more into one day?

Today was a very full and very exciting day!

I'll go in order of how our day went:

Lauren had her 6 month checkup today (at almost 7 months, haha). Drumroll please....

She weighs 14lbs 5oz and is 25.39 inches long! That puts her in the 25th percentile for both height and weight on the typical growth chart. What?! She has been growing like a weed! She has gained 8lbs since birth.

It was so nice going in and knowing it was going to be a great appointment. Right away the pediatrician said, "How about that cardiology report! Great job Lauren!" Lauren's doing wonderfully with her milestones other than sitting independently and self feeding, which is no surprise to us. Basically, she's super baby!

I asked about checking her into the nursery at church on Sundays and during MOPS and the doctor said no :( I kind of knew she would say that. Our #1 goal is to keep Lauren out of the hospital this winter which means trying to limit germs. Lauren is getting a little tough to control at church even though we sit in overflow. Our church has TV's in the hallway so we can still listen to service even if we have to take a little stroll. Luckily at MOPS there are lots of people that want to hold her! I texted my friend and table leader, Jayme, that Lauren would be making a regular appearance at our table and it might get distracting. She texted back "This better be a joke! Lauren can sit at our table until she's 25!" I love Jayme!

THEN....
The moment I've been waiting for....
RYAN STARTED PRESCHOOL!!!

I was a little sad because I don't want my baby bird to fly out of the nest just yet, but I know it will be fun for him. Especially since it's once a week! He loved it!! He had a hard time paying attention, he's 2! But it was a great time. He even got to paint for the first time. Am I a terrible person that I've never let him paint before?! I thought he would hate it, he doesn't like getting his hands messy. But he actually made a handprint with red paint! I think both of our hands will be slightly pink until next week. I am so happy that parents got to stay for the first week. I will probably be a hot mess next week. I love him!!!

Starting off the day with a great breakfast:
 


Thrilled to find out that there are blocks at school:
 
I tried to get a picture of him wearing his Elmo backpack but it was a no go. I'm lucky I got the ones I did!!
 
And then I made an amazing fall dinner. I made stuffed peppers. I used a mish mash of recipes from pinterest and the interwebs. I used red peppers and the filling was lean ground turkey, onion, garlic, rice, salsa, cumin and chili powder. It was delicious. I discovered a secret of cutting the peppers in half and stuffing them that way. You can fit more stuffing in the peppers that way. I also save the tops and "stuffed" those like little pepper pizzas. This recipe will definitely become a fall staple at our table.

Then we went for a nice walk with Bubbles and Baby Jesus! Ryan tripped and fell and then didn't want to go for a walk so he and Greg went home to watch a little Doc McStuffins before bed. Have you seen this show? It's on Disney Junior. It's so cute! Ryan strictly informed me that I was not allowed to look at or touch his knees. He hates when I spray them with antiseptic after he falls! Luckily a few hugs and kisses and some quality cartoons turned his frown upside down! Lauren enjoyed snuggling with me while in the Ergo carrier during our walk. I was so afraid she'd forget that she liked the Ergo over the summer (it was way too hot to wear her at all this summer) but she loved it! She was super happy and was alternating between grabbing my face to make deep eye contact and looking around at the neighborhood.

Currently I'm writing this post while eating ice cream cake from Baskin Robbins. I'd call that a successful day!

Sunday, September 9, 2012

It is well with my soul

Church today was amazing. I truly feel like it was a service meant for me.

Pastor was asking about attitude vs ability. He asked people to shout out the characteristics of people they admired. People said integrity, honesty, patience, compassion, etc... Pastor wrote the on a huge tablet of paper for everyone to see.

Then he went down the line and asked if the characteristics were attitude or ability. Every single one was attitude.

He talked about "fake it 'till you make it" and how it really doesn't work. You can't fight something that is real with something that isn't.

Then he interviewed a woman who faced challenges that nobody should have to face. Her son had a terminal illness (a form of muscular dystrophy) and passed away at 26. It was heartbreaking to hear her talk about that sorrow. I knew her son and I know her daughter who has the same condition. Her daughter is seriously AMAZING and is a major advocate for people with physical disabilities. And she has a great personality! I've always really admired her because even as middle schoolers she is who she is and she owns it. I would love to be that comfortable in my own skin.

Hearing the pastor talk about how she continued to exude joy and faithfulness even through the darkest hour. She said she takes each day at a time. It really hit home for me. She is a joyful person. I don't know if it was a combination of knowing both of this woman's children or relating to the feelings of complete and utter despair I felt when Lauren was so sick. Probably both. But it really spoke to me.

It probably seems that I'm "faking it 'till I make it" sometimes with my attitude towards Down syndrome and how it affects and will affect Lauren's life. But the joy I feel in my heart is real. I worried that my joy would diminish once Lauren was born. During my pregnancy I mostly just concentrated on the fact that I was getting a daughter, glossing over the fact that we would have some hard times ahead of us. And I don't think ignoring our challenges and sorrows are the way to go. But I felt like I had so much joy in my hear that there wasn't much room for anything else. This is a controversial topic among the Down syndrome community, but Greg and I really and truly feel that Lauren was chosen for us. We were chosen for her. We feel honored to share the task of raising her and loving her. We honestly wouldn't change her at all.

Choosing joy for my life has been liberating in a way I can't explain. I have two amazing children. Both have different needs but I don't think either of them are more challenging. They are both pretty special. I am happy and feel a calm in my soul that words couldn't explain.

Hearing this amazing woman speak about struggle and sorrow while still feeling joy was absolutely amazing. It made me feel so incredibly blessed.  Knowing that she could experience what no parent should have to and still feel joy reminded me of all the things I have to be joyful about.
 I am very grateful that I was sitting with a good friend who hugged me as I cried. (Thanks Debi!!)

After the message there were beautiful instruments and singing. The song that was played was It Is Well With My Soul. Perfect song choice for that talk and perfect song for my heart.

When peace, like a river, attendeth my way,
when sorrows like sea billows roll;
whatever my lot, thou hast taught me to say,
It is well, it is well with my soul.


As I listened to the words wash over me I kissed Lauren's scar and thanked God for my circumstances. I reflected on how far we've come as a family and how much I've grown as a wife, a mother and a person. And I felt joy.

Who could ever look at this face and not feel joy?

Friday, September 7, 2012

New ink!

If you don't know me in real life, you probably don't know that I like tattoos. Even if you do know me in real life you might not know. I don't fit the tattoo stereotype at all!

I have a chinese symbol on my ankle meaning twin- my twin sister has it too. I have "grace" in romanian on my hip. I have Ryan's birthday in Roman numerals on my back. I have a peace dove on my wrist.

And today I got a feather on my back. There is a poem by Emily Dickinson called Hope that really speaks to me.

“Hope” is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all -

And sweetest - in the Gale - is heard -
And sore must be the storm -
That could abash the little Bird
That kept so many warm -

I’ve heard it in the chillest land -
And on the strangest Sea -
Yet - never - in Extremity,
It asked a crumb - of me.
 
So I got a feather in honor of my Lauren Hope.
 
 
I LOVE it! It hurt so bad, haha. But I love it. Do you have any tattoos?

Tuesday, September 4, 2012

Little glimpses

My mom, dad and mother in law are lucky. They are always telling me that they see people with Down syndrome everywhere now that we have Lauren. I'm jealous! I never do! I'm the kind of person who's never met a stranger (I get it from my mom) so I would love to introduce myself and make a friend. But it never happens.

Until Sunday! At church on Sunday we had just stepped off the elevator (it's a big church) and waiting to get on the elevator was a mother/daughter duo. The daughter part of the duo happened to be rocking an extra chromosome!

The mom noticed right away that Lauren has Down syndrome (another thing I always want to happen but rarely does-although I was grinning like a fool when I saw them so it might have been a dead giveaway) and said something along the lines of, "Aren't we lucky?" The daughter was kind of looking at me like I was a lunatic, which cracks me up! If I was out with my mom and someone looked that excited to see us I would give them the same look! Like I said, I've never met a stranger.

We had a short conversation of pleasantries and the mom told me to never ever let anybody tell me that Lauren can't do something. It was amazing! I so needed that. The daughter was awesome and was dressed like any typical 24 year old would dress. Aaaand acting the same way any typical 24 year old would act if accosted by a crazy lady at church.

I LOVE being able to catch a little glimpse into what Lauren's future might look like. I mostly loved that the mom and daughter were together. I really mourned the loss of a mother daughter relationship when we got Lauren's diagnosis. It's nice to have confirmation that I am not always right!

 
Oh and Lauren had a very important "first" today! Probably the most important of her whole life so far. She got to see Mean Girls for the very first time! With any luck it will be the first of many.

You go Glen Coco!

Saturday, September 1, 2012

Working on his fitness

I forgot to show you the cutest picture that exists in the history of pictures.

LOL! Sadly, he is the only person in the house who actually uses this to exercise. I use it to hang clothes on most of the time. Damn you, Greg, you were right! Ryan likes to sneak in my room with a smirk on his face and ask if he can use my "eckersize machine". Who could say no to that?!

Ryan has become a big boy so quickly I can hardly believe it! How in the world is he going to be 3 in December?! He isn't even a toddler anymore. He's a kid!

He has become the worlds most polite 2 year old. Everything is "Yes, thank you!" or "No, thank you!" He's 2. Guess which one he says most often? We'll tell him it's time for bed and he'll very politely say, "No, thank you!"

Yesterday he was playing in my parents' sink, one of this favorite things. He kept messing with something so I told him he either had to stop it or get down. His response: "Those aren't my choices!" LOL! Then I told him he had to stop throwing water on the floor or he wouldn't be able to wash dishes anymore. His response: "Those aren't my rules!"

Times like that I know I should discipline him. He actually listened pretty well after that, he just likes to have the last word. But remember, he was pretty delayed in speech. He didn't talk at all until after he turned 2. So hearing him think of things in his head and formulate a sentence thrills me! I'm so proud of him when he talks so well, even if it's something he probably shouldn't say.

He also gave one of his kitchen utensils a time out. Did I ever tell you that he loves time outs? He asks for "one more minute".

I had to run into Kroger really quick today to grab some avocados to make guacamole for a family dinner. Greg and Lauren waited in the car and Ryan wanted to come in with me. (YAY! I always ask him to come with me for stuff like that but he always wants to stay in the car with Greg.I have to bribe him with chocolate milk to get him to come to Starbucks with me.) I told him if he was a good boy he could pick out a little treat. I should've been more specific, I was thinking along the lines of a balloon. He picked out 12 mini cupcakes!

I'm in trouble. And I love every minute of it!

Anniversary

I realized today that we are rapidly approaching a day that will always stand out for me.

September 26th.

This is the day we found out that Lauren would be born with Down syndrome. I feel like that day was just yesterday and forever ago all in the same moment.

We're only six months in and already I wish I could go back and give myself some comfort. Some hope. A little bit of peace.

Don't be afraid, she's just a baby. You will love her. She will make your family feel whole. She will be absolutely perfect. Her smile will light up a room. Nobody will pity her, they will enjoy her. Life will be normal. Ryan will love her. She will love Ryan. She will be accepted. She will be loved. She will be welcomed. She will teach you more about strength than you ever thought possible. She will bring joy in every moment.

She will be enough.