Blog Hop

This blog hop is a community project of Down syndrome Blogs and the T21 Alliance. The code is set up so that everyone can participate by adding their link to their post – and host if they want, by adding the code to their own post! So, just follow the instructions through the linky tool (above

One Truth
My life is so much better than I imagined it would be the day we received our prenatal diagnosis. I was scared and didn't understand what it meant to be carrying a baby inside my body that was affected by Trisomy 21. I'd never known anyone with Down syndrome and because of that I had the misfortune of not being educated on the topic, but also I was blessed to have an open mind... one free of stereotypes or visual images of who or what my child might be when he was born. When it came time for the delivery, we were excited to meet baby Luke and while we've had a lot to learn since he arrived last December, our life has been remarkably normal. When I say normal, I mean the day to day interactions with him are rewarding. I feel satisfied and fulfilled as his mother. I no longer feel cheated out of the typical child I thought I was expecting on that fateful day. When I see the love that his older brother has for him, the warmth that fills my heart is the most wonderful thing I've ever experienced. And that smile. When he smiles (which isn't every moment like the stereotype would indicate), he absolutely lights up. His smile is infectious. His smile is intoxicating. His smile is addicting. I yearn for his smile and find myself doing some pretty goofy things to encourage one. My ultimate truth - my life is good!

One Tip
Find a local support group. It can be a formal group that meets regularly - I was hooked up with one and felt an instant connection with the regulars who attend. Not all of their children have Down syndrome, but they all do have some sort of special need. The information I've gained about specialists and navigating insurance issues has been invaluable. Bigger than that however has been the emotional support I've received - there is nothing quite like having a face to face conversation when you're sharing something very personal and seeing others brought to tears by your story. On the flip side, feeling that way when you hear another's story helps you to feel like you're not alone on this journey. Additionally, I'm a member of a few secret groups on Facebook for mom's of children with Down syndrome born in 2012 and 2013 and that's been a great experience too, in a different way... I am reassured with Luke's progress because I see photos all the time of other babies his age doing the same stuff he's doing. It helps to level the playing field in my mind. I don't have to compare him to normal babies because I can compare him and his development to babies that are on the same course as him. We can talk about feeding issues, heart issues, physical therapies, etc. Things that my friends in real life will most certainly listen to me talk about, but really when it comes down to it, they have a hard time relating because they just haven't been there. Finally, I have been connected with a few other moms of children with Down syndrome whose children also have the same (or in some cases, more complex) heart defect that Luke has and miracuously, although we are all located in Ohio, we all chose Boston Childrens for open heart surgery and we all will have had the same surgeon (once ours is complete, that is) and the peace of mind they've brought me has been really special. One of the moms in particular lives within about 5 miles of my house and while she and I haven't met yet due to our busy schedules, we've actually spoken on the phone probably about a half dozen times. Support is key to learning, dealing and being set up to best help our children!

One Photo 

Matthew blowing out his 2nd birthday candle

Last night we had a birthday celebration for Matthew's 2nd birthday.  When we were done singing and it was time for him to blow out his candle, for some reason he decided instead of using his mouth, he'd use his nose instead!! It was hands down, the funniest thing I've seen in a long time!  If you need a moment to relish in the innocence that comes along with being a child, please watch!  In the meantime, I'll be submitting this to America's Funniest Home Videos!

Boston.... We're really going to Boston? Heart Update

Okay friends... I haven't posted about Luke's heart in a while.  Fortunately in our case, no news was good news... we've been enjoying the summer as much as possible and for the most part, Luke's heath lately has been exceptionally normal on the outside! Unfortunately, looks can be deceiving as we know the anatomy of his heart isn't quite right. 

Background
Although we've been happy in the Cleveland Clinic network, we thought we owed it to Luke to do some additional research and earlier this summer, we sought second and third cardiology opinions from Nationwide Children's Hospital and also Boston Children's Hospital.  We've also been blessed over the last few months to be introduced to a couple of families from our general geographic area who have children with heart issues more complicated than what we believe we're dealing with as far as Luke is concerned and they have all utilized Boston's surgery program and have had outstanding results.  Our insurance seems to be aligned with what we believe Luke's needs will be for surgery and with that peace of mind, we have decided to make the trip to Boston Children's Hospital to complete Luke's repair!  We will follow with our Cleveland Clinic cardiologist before and after we go to Boston and expect that she will be with us on this journey for the long haul... we've developed a good rapport with her and are confident in the level of care she has been providing for Luke.

Present Day
We are now waiting for the Surgical Office from Boston Children's to contact us to determine and schedule our official date for surgery and we are anticipating that it will be sometime in the late winter or early spring of 2014.  The best part about the surgery is that we found out last week that we are getting the surgeon we were hoping for!  We are aware of some children who are patients of his whose parents have given us excellent recommendations and it feels comforting to have some sort of connection... I am nervous, but am also looking forward to getting this behind us and moving on to the next chapter of what's to come in our lives, this will by far be the biggest, most intense thing I'll have ever gone through in my entire life and will be grateful when it's in the rear view mirror! 

I mentioned earlier that Luke's health indicators have been normal on the outside and that gives us a lot of comfort when it comes to caring for him day to day right now... he has good color (he never gives us any cyanotic episodes of turning blue or purple), he doesn't have any shortness of breath, he is eating well and continuing to grow, he doesn't really seem to ever be in distress (except for our issues with constipation, but his GI stuff is best kept for another conversation) and he generally appears to be happy.  Hopefully all that stays the same because if it were to start changing, we would likely be having surgery sooner. 

Please continue to pray for health for our sweet boy Luke!  I promise to update again when we have a date to work from!

Happy 2nd Birthday Matthew

Tomorrow will be Matthew's official 2nd birthday!  It's so hard to fathom that he's only been in our lives for 2 years... it feels like we've known him forever - and I mean that in a good way, actually in the best way possible!  We celebrated him yesterday with a small gathering of immediate family. 

The One Year Anniversary of our Prental Diagnosis

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. (Jeremiah 29:11)

Today is the one year anniversary of us learning that Luke would have a congenital heart defect and Down syndrome... it's so amazing how we've grown from two parents who were terrified for the future of our unborn son to a family complete in our love for one another!  When I reflect back on that day, I will never forget the way I felt... lost, hopeless, scared, defeated, etc., etc.  The only way I can justify those feelings as I look back really just centers around the fact that I was uneducated about Down syndrome, I underestimated the amount of support we'd receive from family, friends and how resources like our health insurance and the flexibility of our employers would help us manage.  I also underestimated myself.  I remember thinking to myself on the day we found out that all I'd be capable of after baby was born was laying in bed, curled up in the fetal position, sobbing about the state of my family.

Isn't it amazing how much a person can grow and stretch and how far they can come when faced with a challenge?  I look back on that person I was 365 days ago and I am so proud of how differently I feel about Down syndrome than I did just one year ago.  Yes, Luke does have a 47th chromosome in every cell of his body.  We know that his extra genetic material is affecting the way he is developing as we watch him slowly inch toward milestones that others his age have beat him at reaching (sometimes they have beat him not just by days, weeks or a month, but months - as in, more than one).  We know that his extra genetic material caused his heart to develop incorrectly in utero, leading to a congenital heart defect known as Transitional Atrioventricular Canal Defect.  Bigger than all of those things however, are the positives and big wins that he has brought into our lives. [At this point in my writing, tears are pouring down my face] I am so much stronger in my faith than I was a year ago and the guidance, comfort and peace that has brought me, is leading me down a path and towards a future of hope and delight.  I am truly excited about what tomorrow will bring!  As stated in Jeremiah 29:11 above, the Lord has plans to prosper MY LIFE!  Isn't that kind of love amazing!  Out of all the people of the earth, I am loved enough that an individual plan was created to give me a plan for hope and a future!?! And even bigger than that, there is a plan for all of us! The complexity of that is incomprehensible to me!  Completely amazing! 

As I watch the dynamic of our family develop, I love my husband more than I ever imagined possible!  He has taken the initiative to be an active and involved father and Matthew absolutely adores him!  Luke is too small to show much preference, but he is completely comfortable in his daddy's arms and his love is obvious as we experience him grin and coo and plant his sweet kisses on our cheeks. The love I feel for our independent Matthew is completely and totally consuming.  I yearn to hear him tell us "Love you Mommy, Love you baby (which is his word for Luke)" before bedtime each night.  I am excited to experience him learning new vocabulary and watch him trying new things - lately it's been the "spin jump", where he spins around twice and then adds a small jump at the end... usually never getting more than two inches off the ground!  He is so active and could run and play for hours! He is pure entertainment!  And of course, there is Luke.... he is the most patient little guy and is a source of constant inspiration when it comes to self confidence.  Earlier I spoke about how long it takes him to reach some of his milestones and the self confidence and persistence he shares is a true source of inspiration to me!  Admittedly, he doesn't know he's behind... but I like to think of it more along the lines of "he wouldn't care anyways". Regardless of where he's at on any kind of developmental chart, he always seems pleased with his progress!  He is full of smiles and a good attitude - one who is always willing to earn his success.  He endures hours of physical therapy each week and is slowly, but surely striving to reach goals!   

If I could go back and talk to me one year ago today, I would tell me that life was going to be good and I would say it with conviction!  I wish I could have reassured myself that the stress and worry would fade into a comfortable, and even enjoyable (imagine that!) life filled with love and excitement for what tomorrow would bring!  I would tell myself with the confidence that can only come from experience that I would feel full and even more than that, I would still feel normal!

It's amazing what can happen in just one year!

Matthew's First Broken Bone

Matthew broke his pinky finger on his right hand today...  We were husking, washing and preparing corn to freeze (we did 70 quarts by the way) today and Matthew accidentally fell while outside.  We were letting him run around pushing a kiddie wheel barrow full of the freshly husked corn and he must have caught the sole of his tennis shoe on the concrete because he went down head first and caught himself with his hands.  His pinky fingernail was ripped partially off and was bleeding, so we went into the ER expecting stitches for a ripped nail bed.  We were surprised to learn that while he did have a small laceration on his nail bed, the bigger issue was a broken finger.  He had the rest of his fingernail taken off and got a split for his finger and we were on our way home. 

Little guy on the way home... worn out from crying in the ER!

The place in the tip of his finger where it gets really narrow shows the break....

What's Up With Down?

An independent filmmaker who has a son with Down syndrome is seeking funding to create a documentary and the trailer she's put together is amazing!

http://www.indiegogo.com/projects/what-s-up-with-down

2013 Ohio State Fair Photo Dump

Today we visited the Ohio State Fair.  It was so fun to catch up with dairy friends we haven't seen in a while and for the first time in a long time, we actually left the barn and checked out the sights of the fair! Matthew was in love with the sights, sounds and the tastes too as we let him try many new foods, including deep fried snickers, cream puffs from Schmidt's, ice cream from the butter cow barn and old faves like french fries and ribeye sandwiches from the Cattlemen's booth.  He also was lucky enough to drink my iced tea and Dustin's Pepsi when we ran out of milk... I'm quite certain he had more sugar today than he's ever had in his entire life!

Rolling Back to Front

Finally!  Luke is now rolling back to front!  He's been doing front to back for a while now and it feels so awesome to have something new to be excited about! 

Yesterday, I put him down on the floor on his back and walked into the kitchen.  Dustin was home and so was Matthew, so when I came back into the living room a few minutes later and he was on his belly I wasn't too surprised.  I asked Dustin if he turned him over for tummy time and after he told he that he hadn't turned him, I just figured Matthew must have done it!  Matthew often wiggles his way into Luke's therapy sessions and he loves to "roll" Luke over by pushing or pulling him one way or the other - obviously not something I'd want him to do when I'm not sitting right there, but I figured it must have happened... Then today, I actually saw Luke roll on his own! Way to go Lukie!