Welcome to my blog!

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

Saturday, June 30, 2012

Why do I continue to grocery shop??

I think God is trying to tell me that Greg needs to start doing the grocery shopping ;)

Today at Kroger a woman stopped me in the middle of the parking lot and shouted, "How old?" I honestly didn't even know what she was talking about and probably said, "huh??" more times than is socially acceptable. Finally I realized she was talking about the adorable sleeping baby I happened to have in my grocery cart (I didn't steal one, it was Lauren). Once I finally found my brain our conversation went like this:

Me: Four months...
Her: Mumble, mumble, cough, shouting: Well, maybe in another year!

What. The. Heck!! It was the middle of the day, so I can't even blame my usual night time shopping. It has to be me. I attract weirdos. I promise I am passably normal!

Totally different subject:

Yesterday I was chatting with my wonderful mother in law about how awesome Lauren is (as she smiled and babbled at us) and had almost an epiphany of sorts.

How in the world did I ever feel even one drop of sadness over Lauren? She is my miracle, my undeserved reward, my greatest blessing. I feel like a different person than B.L. (before Lauren) simply in the fact that I had no idea my heart could hold so much love. I honestly have a hard time remembering the sadness I felt when we found out Lauren had Down syndrome. I know I was sad, I was devestated. But I can't even remember how that feels anymore. I remember the gut wrenching sobbing I did in my kitchen the moment I was alone. But the visceral feelings are gone.

I'm not quite there yet in regards to Lauren having open heart surgery. I hope one day I'll be able to let go of the pain, bitterness, anger and sadness. The fear. I hope one day I will forget the fear I felt on surgery day. The way the air felt so heavy that my bones might break. I really hope I forget. But for now I try to embrace it and use those memories when I need reminding what a precious gift parenthood is. None of us are guaranteed health- regardless of the number of chromosomes we may possess. That time was the most difficult in my life and I hope that distinction remains. I remember thinking of the saying "God won't give you more than you can handle" and wondering why the hell he was trusting me so much.

But you know what? Lauren will never know that pain. That's my burden to bear. She will never know the extent of my despair. I took great comfort in that during her hospitalization and I still do, to be honest. I can protect her from that. Ryan probably won't even remember the fact that I was at the hospital almost 24/7 for five weeks. He's only two and a half years old. His memories will be of his cute baby sister and the havoc all little sisters cause wreak in their big brothers lives. That is my silver lining. And if you've read my blog before you know I'm all about the silver lining.

And really, who could be sad at all when looking into these eyes?

Thursday, June 28, 2012

Creepy?

Today while grocery shopping a guy was staring at Lauren. I generally don't mind staring because I think people just like to look at cute babies! And a lot of people stare a little more at Lauren, I think because they're trying to decide if Lauren has Down syndrome. It doesn't offend me even a tiny bit, honest!

Buut.... this guy took it a little too far. He asked if I was a Christian, made the sign of the cross over Lauren, touched her foot and then kissed his hand.

Had it been a kind old man or woman (I love old people) I would've been very touched and thought it was nice. Had it been a nun it would've been in the top 5 best moments of my life. (I love nuns even more than I love old people, which is saying a lot). It was a guy in his 50's and I got a creepy vibe.

I just said, "Uh, thanks." and booked it for any other area in Meijer where this guy was not.

It was definitely a Down syndrome thing. Our first public comment! And it was weeeeiird. I feel kind of bad for being creeped out, maybe he was an angel or something. I don't know. And I'm thrilled it was a nice comment, but... I felt creepy crawly and probably should've had somebody walk me to my car.

Why do I continue to grocery shop at night? Nobody (except for me, obviously) has good intentions at Meijer after 9pm.

Wednesday, June 27, 2012

I love summer!!!

I am enjoying summer time this year big time. The last two summers I was in nursing school was so stressed out I could barely function. Seriously, ask my family. My stress level was sky high. I did well in school but I had to work for it. My program was from May 2010 to August 2011. No summer break. So this is really the first summer that I can just work and be a normal person in a while!

My sister (who is due with their first baby in July) took the day off work so she came over and we took the kids to lunch and then while they napped we got a tan in the back yard! How amazing is that?

Ryan has been talking nonstop lately and I love it. He says the goofiest stuff sometimes and I don't even know where he hears it! Yesterday he said ,"Where's Greg?" when he wanted his dad. Really?? And then he gave me a hug and said, "I missed you Jackie!". He does it because he knows its funny, I didn't realize 2.5 year olds could have such a well developed sense of humor. He loves making us laugh!

And Lauren has so many cute summer outfits that I have been known to change her clothes multiple times throughout the day. She's on outfit #2 right now and it's barely 4:30, there's still time!

Lauren has her first early intervention play group/group therapy next week on Tuesday (just in time for me to get home from a 12 hour midnight shift, pick her up and get to play group. Sleep is for the weak.) I'm really excited to meet other families but I'm a little nervous that I'll be the youngest mom and feel out of place. It doesn't help that even though I'm 26 I look about 20. Not that I'm complaining about that! Also we made the appointment for Lauren to get evaluated for a helmet, it's not until the end of July so we have some time.

Happy summer everybody!!!

Sunday, June 24, 2012

Gifts

Today at church the pastor spoke about how we need to trust God in trying times and know that he will either sustain us or deliver us in times of sorrow, fear, or uncertainty. And that we should thank him in times of joy and excitement. He spoke about how God will either sustain us or deliver us through challenging times. When things are good we thank God for what we have. But when we're struggling our instinct is to wonder where He is and why he has forsaken us.

All I could think of was Lauren's hospitalization and how utterly terrifying it was to hand her over for surgery. There were times I thought we would never get through it and I worried every single day that I would never get to hold Lauren again.

I recently answered a question a blog about what is the best gift your child has given you. It really made me think a lot about my family and how terrifying, joyful and enriching it is to be a mother.

Ryan gave me the best gift of all, I think. Ryan gave me the gift of motherhood. He made me grow up, learn to truly put somebody else first and most of all how to love unconditionally. When I look at Ryan and think about how absolutely perfect he is my heart almost aches. Moms (and dads), I'm sure you know the feeling I'm talking about. The feeling where the love you have for your child is so strong it's almost tangible. Without Ryan I wouldn't have that. His birthday is such an awesome day for me because even one day before we had him I had no idea how much our lives would change and how much my heart would grow. Now that he's getting older and really showing us his personality I can't help but be in awe of the fact that Greg and I made him. He is such a miracle!

Lauren has given me the gifts of faith, community and overwhelming hope. When I was pregnant with Lauren we were so worried about what our futures would hold. I was terrified that life would never be the same and that we would never adjust to being not only a new family of four but a family with a child with special needs. When we found out about Lauren having Down syndrome and needing open heart surgery I was crushed. I worried about her heart every single day of my pregnancy and the increased risk of stillbirth was constantly on my mind. I knew in my heart that I had to have faith that God would both sustain us and deliver us or I'd never make it. So I closed my eyes, plugged my nose and jumped into a lake of faith without even checking how deep the water was. There were certainly times where I felt like I was barely keeping my head above water and I might drown at any moment but either I held onto God or He held on to me or maybe a little bit of both.

I am so incredibly thankful for every single nurse, doctor and social worker who made sure that not only Lauren, but we as a family were cared for during her hospitalization. I can't even explain how greatful we are for all of the meals that were brought to our home and to the hospital by people who knew we needed help and we needed to feel surrounded by people who cared about us. Our families who watched Ryan so I could stay at the hospital almost 24/7 and then brought Ryan to visit us every day. My MOPS table made an awesome care package for us, people sent outfits, toys for Ryan, flowers for Lauren's hospital room and Visa giftcards. Do you now that every single Sunday at church somebody tells us that they read my blog and have been praying for us. Do you know how that feels? It's truly indescribable. I know that no matter what the future brings we are not alone. Our community rallied around us and made sure we were taken care of. I hope we can repay that favor someday.

And now life is...normal. To be honest, it feels a little like the calm before the storm and I just know something crazy will happen soon. There are days I still feel like I'm barely keeping my head above water, I think that's pretty common for families with small kids, right? I can't be alone! Somedays I feel a million times older than my 26 years. But our family is strong enough to get through anything life throws at us and I try to be thankful every single day for the blessings we have.





Wednesday, June 20, 2012

Early On

Lauren's evaluation for Early On (Michigan's early intervention program) was today! I was extremely nervous but it went great.

I was picturing people frowning at us and sadly shaking their heads while telling me that my daughter couldn't do anything. Luckily that is SO not what happened!

It was basically four women who fell totally in love with Lauren and played with her for a little bit! They pretty much played with her, held her and asked me questions and scored based on the things she did and the answers I gave. She scored anywhere from unscorable to 4 months. She is obviously fairly delayed. But again, because of her diagnosis of Down syndrome we weren't at all surprised.

Some of the "tests" were seeing if she'd follow a flashlight with her eyes, seeing if she'd look at a piece of red yard that was dropped, if she'd look towards a bell ringing behind her (receptive language test), and seeing what she can/can't do yet physically.

We actually had a little chat before we left the house and I instructed Lauren not to show off too much. The lower she scored would mean more services she would receive. I was hoping she would qualify for a lot to be honest! We'll take all the help we can get :)

Lauren qualified for therapy twice a week!! One day will be a home visit and the other day we will take her to the local special education school for her therapy visit. This starts in September, life is about to get crazy! It seems like a lot right now so hopefully the adjustment is easy and it becomes part of our regular routine.

The coordinator for our school district seems AWESOME! She asked if it was okay to give my contact info to a family in our town who has a four month old baby boy with Down syndrome. Uh, heck yes! Hopefully we'll make a connection there. How awesome would that be for Lauren to make her first friend with Down syndrome already?! Another woman is going to come to our house next week to help me fill out the paperwork for starting therapy in the fall. If we get the paperwork done now then we can start as soon as the school year starts instead of waiting on paperwork.

And an added bonus...A stranger noticed for the very first time (well, at least vocalized it) that Lauren has Down syndrome!! I was so pumped! It was the school secretary and she said, "Oh, your daughter is beautiful! My son is 29 and he's our oldest, he actually went here for elementary school!" It was at the special needs elementary school, where the Early On and Head Start is coordinated. I mean, I know she works with kids with special needs and is probably better at recognizing babies with Down syndrome, but still. So exciting! I don't know why it makes me so happy that someone noticed, but it does.

Most importantly...LAUREN GOT HER EARS PIERCED!!!!! She only cried for a minute and I love it!! Its hard to get a great picture because her chubby cheeks kind of eclipse her ears in photos, but here's a picture.


Monday, June 18, 2012

Learning to fly...among other things

Lauren's 4 month well visit with her pediatrician was today! It's so crazy and awesome that we're on a typical schedule for pediatrician visits. We don't go back until September 10th!

Lauren had to get 3 shots today. The only shots she'd had before were the Vitamin K vaccine they give in the hospital at birth and a Synagis injection to protect her from RSV right before she was admitted to the hospital. They wanted us to wait 6 weeks after surgery for any vaccines. Anyway, she did SO GOOD with her shots!! She cried for about 2.5 seconds and then fell asleep. I think she was tired because instead of letting me go back to sleep taking a morning nap she stayed up and chatted from 6am until noon! She was supposed to get an oral vaccine too but apparently we missed the window and she's too old to get it. I don't think its a huge deal.

Great news: We got the okay to get Lauren's ears pierced!!! So far it looks like the big day will be this Wednesday! I'll post pictures after (as if you ever doubted it). I'm SO excited!!!

She's definitely developmentally delayed if you look at the typical milestone charts. Not a surprise! The pediatrician seemed to tiptoe around saying it, I'm not totally sure why. I think maybe she was trying to be nice? It was very sweet of her but I'm not really sad about it at all. I thought I would be, but I'm not. I'm just happy that she's so healthy!! The pediatrician recommended definitely starting Early Intervention- which is great because Lauren's evaluation is actually this Wednesday! I'm so excited! I can't wait to get things moving and start working towards some goals. We're planning on private therapy as well.

(For those not familiar with private therapy or Early Intervention.... We or our insurance company (fingers crossed) will pay for therapy for Lauren with private therapy. EI is funded through the state and they will come to our house for different therapies to help Lauren work towards self-feeding, eating from a spoon, making noises, speech, rolling, crawling, walking, and learning to fly.... Wait, you didn't know that kids with Down syndrome can fly?! )


Not so awesome news: Lauren will probably need a helmet to fix her flat head. Not the biggest deal ever, obviously. Our son had a helmet from 6-12 months old. He lived. He bashed us in the face numerous times. It was pretty cute, our orthotics office has really cute patterns to choose from. Ryan's was the American flag! They have lots of cute girly patterns for Lauren to pick from. I'm totally letting her pick out her own ;)  Her head is flat on one side. It's positional- from laying on the same spot on her head. When we move it the way we want her to look she just moves it back. The pediatrician says she would say it's mild to moderate plagiocephaly (flat head) but since Lauren isn't anywhere near sitting up or crawling it will most likely continue to get worse or stay the same so she thinks a helmet will be a good idea. The specialist will evaluate her and make an official recommendation. The window period to achieve desired results is fairly small so I'm glad we got the referral! Insurance should cover it fully, especially with Lauren's secondary coverage. We go in a couple of weeks.

I'm not sure why the helmet thing is bugging me- we've been there, done that! But it is. I feel like she's got enough going on without adding a helmet into the mix. We really liked the orthotics team last time so hopefully we get to see the same doctor!

Overall it was a great visit and in the pediatrician's words Lauren is "doing awesome"! She said Lauren is like a totally different baby than before surgery! Now all that's left is teaching her to fly :)


This is how she sleeps! Super cute, but her head is mighty flat on that side. Isn't she such a sweet sleeper??

Friday, June 15, 2012

Just some pictures :)

I just want to brag a little on my beautiful girl and post a couple of pretty pictures! We found out a year ago yesterday that we were pregnant with her. Who knew what an amazing difference she would make in our lives, and she's only four months old!!

And one of Ryan feeding a goat :)

I know I've said this before, but if someone had dared to tell me how normal our lives would be at just under 3 months post-op I wouldn't have believed it! 

Thursday, June 14, 2012

Health Insurance

So when we first found out about Lauren's "designer genes" we assumed that her medical care would be super expensive and that we'd barely be able to struggle to make it financially. We envisioned (among other things that have already proved to be false) a life of being totally destitute and having no money for the basics, much less extras. I actually think this is a pretty common misconception for families just finding out about a child's diagnosis of Down syndrome.

I am happy to report that it's not true! Lauren and Ryan are currently covered under my health insurance and she has something called Childrens' Special Healthcare Services as a secondary. She also has Medicaid as a secondary insurance for now, but I'm fairly sure that will be dropped now that I'm working. Our caseworker wasn't sure. We've had a lot of family and friends ask us how it works out with the health insurance stuff for Lauren's care. Lauren and Ryan were both on straight Medicaid through the state of Michigan because of our income vs family size. Lauren's secondary insurances now are strictly because she has special needs. We pay into it but the fees are waived for families who qualify financially.

This will help to cover any co-pays, deductibles and out of pocket costs for Lauren's medical care. YAY! We are lucky to have great health insurance, even though the premium is kind of high. It covers a lot of stuff, but not really all that often. Our private insurance covers hearing exams and hearing aides every 3 years. So far Lauren is passing all of her hearing tests but that might not always be the case. I'm not sure how often hearing aides need to be replaced, but considering the rapid pace at which kids grow I would assume more often than every 3 years. Lauren's secondary insurances will cover those. If she should need any assistive devices ie: braces to help her learn to walk or hearing aides, we should be covered. It looks like our private insurance will cover leg/ankle braces, but we aren't sure how often.

Some states offer a Medicaid Waiver, sometimes called a Katie Beckett Waiver. This allows people with certain health concerns to have Medicaid regardless of income. Some states allow Down syndrome alone to qualify a person for the waiver. Michigan isn't one of them. Katie Beckett's story is pretty awesome and her mom was a wonderful advocate! Look up her story if you have time!
Lauren having Medicaid is something I've struggled with. I'm not sure I can articulate why. I think part of it is because the reason the termination rate is so high for babies with Down syndrome is that they are percieved to be a "drain on society". Greg and I DO NOT agree with that statement. I want to be able to provide for her medical care. Maybe it's plain old pride. I'm not sure. I know I felt like we were looked down on by some people when I took either kid to the doctor. "Oh, you have Medicaid?", said in a snooty tone really hurts, you know? And that had absolutely nothing to do with Down syndrome! I'm sure a lot of people recieving assistance have experienced this kind of discrimination, and it sucks. Stereotypes of people abusing the system have ruined it a little for the people for whom it was intended. (Did you hear about that lottery winner awhile back that was still receiving food stamps?!)

Lauren having special needs made it a whole new ballgame in a way. I don't at all feel that we're owed extra help from the government or anybody based on Lauren's diagnosis. I am so grateful for the extra help! But it certainly makes sense why it exists when you find out that the average cost for hearing aides for a child are between $1000 and $4000 per ear. I don't know about you, but I don't really know anyone that has that kind of money laying around.

I guess the bottom line is that while it feels really good to know that we are able to provide for both of our kids, the fact that we get some extra help for the super expensive stuff is amazing! When I found out that Lauren qualified for Childrens' Special Healthcare Services it honestly felt a little bit like the community as a whole was coming forward to help our kids with special needs meet their full potential. And I think Lauren has a lot of potential to reach :)





Wednesday, June 13, 2012

Four Months Young!



We just celebrated Lauren's 4 month birthday yesterday!!

Sometimes it does not seem possible that Lauren is already 4 months old. Didn't I just find out I was pregnant with her a couple of weeks ago? Time sure flies when you're having fun!

Other times it seems like I can't believe she's only 4 months old. Hasn't she been a part of me forever? It's hard to believe life existed before I became Lauren's mom.

Lauren has fit so many things into her 4 month existence. Heck, she fit a ton of stuff in before she was even born! It's so awesome to see my beautiful baby girl doing so well and seeming so happy. She is super smiley, love to play peek-a-boo and most importantly, loves to snuggle. She is my baby shower buddy-the #1 reason I was so excited to find out I was having a little girl!

In our darkest days in the hospital with her I was afraid to think of milestones like this. I was so afraid that I might not get to celebrate. Some might find it silly to celebrate month birthdays, but I am so thankful that we have the opportunity. We did with our son too!

So yesterday, as I sang "Happy Birthday" to my sweet little girl I teared up a little as I reflected on how thankful and blessed we are that Lauren has the chance of a full, happy life ahead of her.

Happy four months, Lauren! And here's to all the birthdays ahead of you!

My blue eyed silly girl!


Wednesday, June 6, 2012

Upcoming evaluation


I finally got the correct information and was able to schedule Lauren for evaulation for Early Intervention therapies. We'll hopefully be getting physical therapy, occupational therapy and speech therapy. I don't know how often we'll be getting them, but so far it looks like the fact that Lauren has Down syndrome will help her to qualify for everything available. The bad thing is that Michigan's budget sucks (like so many other states) so we probably won't be getting therapy as often as we'd like. We're planning to do private therapy as well and we're hoping our health insurance will cover at least part of it.

I have somewhat mixed feelings about all of this. I am so happy to get started with getting Lauren the tools she needs to be successful. But the fact that she needs extra stuff is hard sometimes.

It's never been a surprise that Lauren would have delays. We found out that she had Down syndrome when I was four and half months pregnant. It feels like we've always known. But knowing that our baby will have delays and having a stranger tell us that she is delayed are two totally different things. You know how you can be mad at your sibling and say whatever you want about them, but the minute anybody else agrees or says anything similiar you're ready to punch them in the face? It's kind of like that.

 How will I feel if they say she's significantly behind? Part of me hopes she doesn't show off for evaluation so that we qualify for everything and get it often enough. But we haven't yet had the experience of an outside party telling us she is developmentally delayed. Obviously her diagnosis speaks to that. But even our pediatricians and cardiologists have been so positive and have basically said that Lauren will do things in her own time. This is the first time I feel like her having Down syndrome matters at all, maybe because it's the first time we're seeing someone simply because of her genetic makeup. Every baby sees a pediatrician. We were in the hospital because of Lauren's heart, not her chromosomes (although I do realize that a very large percentage of babies with Down syndrome have heart defects). I recently had to check the "yes" box to a question asking if my child was disabled. That wasn't even hard for me, so why is this?

I am so thankful for the positivity and encouragement. But I'm scared because I know life isn't always that way. So far I've mostly kept my head in the sand, working with Lauren on baby skills to the best of my abilities and ignoring the milestone charts. But for her evaluation she's going to be judged based on the same charts I've been ignoring for the past almost four months.

Notice my wording? I feel like for the first time Lauren is going to be judged for having Down syndrome. These people are here to help her! We want them to tell us she qualifies for lots of services. So why the heck do I feel that way?

I feel nervous the way I feel before every cardiology appointment and every pediatrician appointment. Like I'm waiting for the other shoe to drop. Waiting for someone to tell me that I'm not doing enough or that Lauren should be doing x, y or z.

So yeah, my feelings are mixed. To put it lightly. Any moms with experience in this area- feel free to give me any advice, wisdom or thoughts on this! Am I crazy for feeling like this?

Sunday, June 3, 2012

Busy Busy!!

I worked my first 12 hour nursing shift today! Well, I mostly shadowed but I did get to do some cool stuff.

I missed Ryan and Lauren SO SO much. Way more than I thought I would. Why can't money just grow on trees??? I can't wait to switch to midnights. As much as I know it will be a big adjustment, I really hate being gone during the day. I'd rather be gone while they're asleep.

I do love my job. I went to school for what feels like a million years to get to where I am today. But I don't really feel all that ready to be away for Lauren for such long stretches. After all, she's only 3 months old! But it is what it is and it's what works for right now. She and Ryan were both really excited to see me when I got home, it made me super happy. Ryan even ate his whole dinner! If that doesn't show love, I don't know what does.

And of course, for my first shift, my car wouldn't start this morning. I am so thankful that not only is it Sunday but that we have two cars. I had to take Greg's car to work, stranding him and the kids at home. Luckily his mom came and took them all to church! Ryan loves going to church and was already asking this evening to "go back another day and play with my friends". I love that boy!

In other news, I bit the bullet this week and finally joined the iPhone craze. I love it. You know how I have practically zero picturs of Ryan becuase he is totally camera shy? Apparently he loves it if he can see himself!

Kisses from Ryan and I!