These Little Feet

Beautiful aren't they? Admittedly, baby feet are one of my favorite little baby features. So scrumptious. And these two little feet are no exception. You would never know by looking at these little feet, that each cell contains an extra amount of chromosome material. Perhaps these little feet alone can prove that they are more alike, than different, from every other little set of little feet. And as a mother, I have beautiful dreams for these little feet.  I dream that these little feet will lead him, one step at a time, into his mommy and daddy's arms. I dream of the pitter-patter sound that these little feet will leave behind, as he runs to seek his big brothers and sisters in a game of hide and seek. I dream that these little feet will be twirling and whirling after his sisters graceful dancing feet.  I dream that these little feet will be making a big puddle of a mess as they stomp through pools of rain water.  I dream that these little feet will one day kick that ball into the net with waves of encouraging cheer rolling towards the field.  I dream that these little feet will lead him to his first steps on the school bus, only pausing for a second to turn and say goodbye.  I pray that these little feet will walk besides Jesus's feet, and that his little hand will be tightly clasped in the middle of His almighty hand, leaning on Him and trusting Him, and when needed, to allow those powerful hands to carry him.  These hopes and dreams and prayers are not only for these little feet, but for every pair of little feet that have come into our family.  Each one is a unique gift, that bring us to our knees in gratitude and love.  And we recognize that each pair of feet should be lead, encouraged, modeled, and loved.  Today I am thankful for our six pairs of little feet.

Balancing

Balance. It's a beautiful thing if you can find it accentuating your life at any given moment.  Balance in your marriage, balance in your free time, balance in your diet and activities, and even balance in your friendships...it's all ever so important to our sanity, in my opinion.  God for sure knew that we prioritize and appreciate a good balancing act. Three boys, three girls, three with blue eyes, and three with hazel eyes.  Incredible, right?  And he added a beautiful addition to our family in April, who accessorizes with that special extra chromosome number 21. He has provided more balance in our life, then we ever could have imagined. He has taught us even more so to slow down and appreciate all the little things.  He clearly tells us not to take all of life's milestones for granted, but to celebrate each and every accomplishment.  And boy do we!!  I think that he also teaches us not to take time itself for granted. And without finding that balance in your life, time seems to get by even a little more quickly.  We can easily fill our days with activities that are not truly benefiting ourselves... getting us to be a better version of ourselves that is...or society.  But why is it so difficult?!  I think we have more temptations nowadays, to rob us of  our valuable time.  So many of us are consumed with technology (As I sit on my phone and blog), and achieving perfection in so many aspects of our lives.  We are a consumer society, so we spend so much of our time purchasing stuff, organizing stuff, throwing away stuff, donating stuff, repurposing stuff. In so many ways, we have so many luxuries at our fingertips, that we don't work near as hard as our ancestors. I think of my grandparents on the farm, and how hard they worked to raise their families, and live self-sustaining lives.  They hand washed their clothes on the washboard, cooked everything from scratch, grew there own vegetables, etc..  We have all this great technology to do the work for us, but why do we feel so rushed, and have less time!?!  Some of my favorite memories with our family are on vacation, when we squeeze into a tiny hotel room, and just hang out. I love sitting on the beach with them, without any agenda, and just having that time to talk, laugh, and play. They are our most precious memories. Going into the new year, and working more towards a more comfortable balance, I'm going to work on having more of those "vacation moments" in our own home, even if it's scheduling unscheduled time.  I truly think that prioritizing our Heavenly Father  first, family second, and the rest to follow, will naturally materialize the balance we need and thirst for in our lives.  Have you found your balance?

All in the Family, with DS

I was at an elementary school function for my fourth-grader, volunteering to count laps as they made their "challenge run". Unfortunately having the little ones at home, I only make it into the school to volunteer a handful of times throughout the year. I do enjoy going, as it's fun to meet all of her classmates, as well as meet and visit with some of the other parents. While counting laps, another mom walked up and introduced herself, and mentioned that they had just moved here this summer. I was happy to hear she had a son in my daughters class, and she mentioned that she had another daughter as well.  Soon the race was finishing up, and parents were walking away, but she and I remained talking for a few minutes. Luke started to wake up in his little car seat, so I lifted him out and held him in my arms. She looked at him with warm eyes and a sweet smile, and shared with me that she has a beautiful seven-year-old daughter with DS.  Instant tears from both of us as we embraced, and she welcomed me into the family. 

 It is so profound how God connects us with exactly what we need and who we need on our journey of life. It is so amazing and powerful.  Immediately after we got his diagnosis in utero, I connected online with families from all over the country, who were blessed with one or more of these children and their families. It's like my eyes had been opened to a new world that I did not know existed.   And going to our first Buddy Walk this year was so incredible. It truly felt like a large family, and looking in the eyes of all these other parents, you instantly knew how blessed they are, and see the genuine joy on all of their faces.  They get it. They get it!  I did not get it, even a year ago. I did not have the understanding.  Sometimes I wonder if these children are sent on this earth with special missions, rather than special needs.  Similar to the mission of an angel sent down to earth. And families with these children know exactly what I am talking about. I've seen Luke change and move so many people on his path, in his short six months of life. I have seen him bring so many people to tears, in his short six months of life. He has opened people's hearts and minds in immeasurable ways.  I did in the early stages of his diagnosis grapple with whether he was intentionally created with that extra chromosome, or if it was a result of free will, and the fall of man. I concluded early on that it was a result of that. And then he was born.  I now do feel as though that is not the case with Luke and others born with dis "abilities".  I have felt God's hand so strongly on this journey. I feel as though these little ones are so intentionally here, as they were made.  And oh the beauty in that!  God, help us to learn from them.

The art of manipulation

I know what you're thinking ... probably not the title you want to hear coming from the mouth of someone who is diligently working towards being a better version of who God wants me to be!  But if you have children, from toddlers to teenagers, the act will creep into your vision field at one time or another.  Manipulation! It enters the battlefield wide-eyed around the age of two, and manifests itself as more knowledge comes on board.  Initially it's cute, as if we can almost physically see those little wheels turning in their heads, as they find ways to get their needs and wants met.  It then usually disappears towards the early elementary years, as they turn into people-pleasing angels, eager to show us how responsible and grown-up they are in their actions.  Then, maybe to see if we're paying attention or really know anything all about parenting, manipulation tactics resurface around seventh grade, on steroids. All of a sudden we're not as intelligent as our child species (ha ha), and we are challenged with the "M" word once again.  This is the olympics people!   And I will absolutely say that some kids are born with a higher level of it, then others. :-).  I find that it has to do with how spirited, or strong-willed they tend to be. The stronger the will of the child, the stronger the parent's will needs to be.   Particularly with one of my sons, sometimes I feel as though he and I should be in a court room. Both of us pointing out a number of valid points, evidence to support it, and a very convicted passionate plea why he should get something he wants, or should not get a certain punishment that we deem fit for the action.  Sometimes I actually want to give in, just because he gave me such a convicting case!  But as parents, as you all know, it is so important to stand our ground on the big things. We all learn from our mistakes, and definitely learn to pick our battles, but it does seem that children need solid roots, and solid boundaries. This can sometimes be challenged if we are more focused on a "friendship" with them.  An older and wiser parent once reminded me that we as parents are not their friends!  Friendship will come later, when they are young adults.  I think we can look at ourselves as the big oak tree in the front yard, with deep roots, making us very resistant to being blown over as the big storms blow through.  And we have to then ask, what do we want for our children?  Do we want them to be young pine trees, with shallow roots, that fall and crash the first time they're challenged with anything hard? Absolutely not.  We lead by example.  We live by example.  In their plea to get what they want, our children will resent us for standing our ground.  But eventually, it seems that most children do eventually come to their senses, and perhaps even throw a "thank you" back.  My last birthday card from my oldest daughter included a note, thanking me for handing down my values and faith (sniff sniff). Some of those battles were worth it at least.  Now I wouldn't be honest if I said I never cave in. Sometimes I will cave in because of pure cuteness.  I was driving our three-year-old home from a birthday party the other day, where she enjoyed ice cream and cake, with a side of candy.  Already revved up on sugar, she pleaded with me to allow her to have something sweet from her gift bag. Her: Can I have a lollipop mommy?  Me: No honey Her: Can I have a bag of fruit snacks?  Me: No honey. Her:  Well can I have the snow covered chocolate chips?  Me: no honey. Her: well why can't I have any sugar?!  Me: because you have had plenty of dessert at the party already!  Her: fine then! I'm just not going to have any candy then! (Thinking she was really getting back at me!!!).  You have to admit, pretty funny for cuteness sakes.:-).  And the manipulation saga continues. :-) Stand your ground mamas! And if you ever find me in a weak spot, remind me to do the same!  Support and surrounding yourselves with like-minded parents is one of the key to successes . . .along with MUCH prayer. 

On having a big family

Okay all of you sisters out there with big families, you know what I'm talking about when I say we get comments.  Comments from people of every generation, young and old, from every culture, and most likely from every language. I just am unaware of the non-English comments. :-).   The most common ones are, "you must have your hands full", bless your heart", "are you Catholic?", " I'm sure your older children are big helpers around the house", "Are you going to have more?" ( jaw hanging), and "Look mom, it's the Dougers!".  Most of the time, particularly if we are all out and about going out to eat, or going into a store, etc., we just get the stare.  Now I absolutely believe that people have good intentions with their comments, and I do not hold anything against them whatsoever. But I have to admit that it makes me very sad that we are in a place in history where having more than two children is out of the norm.  And it makes me sad that people assume that because we are Catholic, and have a big family, that it is simply because we do not use birth control, and just leave it all up to chance.  I do find myself getting a little defensive (At least feeling it, if not showing it), when explaining to people how we got here.  Explaining that there was a time when we were young, naïve, untrustworthy, and we had this preconceived idea that we had to plan out our entire lives. Joseph and I wanted two children, three at the most, a golden lab, and a house with the swing hanging from a big oak tree in the front yard.  I will admit that we just hung that swing up, but as for the rest of our plan, God worked on us.   When I meet young people that are just completely living in God's will, confidently, and with complete trust, I am amazed. Joseph and I had to grow into this.  We were led down a longer path, with many detours, some small mountains, peaks, and valleys. God put just the right people in our lives at just the right time.  And on this path, we learned to pray. And with praying, God worked on our hearts.  We have come to realize that there is nothing in this world as precious as a human life. As I have said before, where there is life, there is love. And God is love.  I have found myself ministering to young moms who are on the fence about having that third child, as I have met dozens of women who are in mourning of the fact that they permanently closed the door to have more children very early on. That could have very easily have been us. I remember Joseph being very nervous the first time I left him home alone with the two children, where as now I see a very confident father who would not hesitate in a second to grab all six kiddos and go for an outing. The changes I've seen in him as a father, and as a man of faith, completely move me and bring me to tears. And the changes I've witnessed in myself are plentiful enough to fill the pages of a book.  Often times we will be asked "and what do you do for yourself? You need to make you time!"   I can honestly say, that thought does not  cross my mind! Our joy right now is seeing our children succeed at life, and love on each other.  There is nothing like it to compare.  I remember when Joseph and I were young, we spent every weekend going out to dinner, working out two hours a day at the gym, seeing the latest movies, hanging at Barnes & Noble with our coffees. At the time, that felt like enough. But where we are right now, again, there is just no comparison.  I would never say that everyone should have a large family, but I would encourage each and every young family to keep that option open, and to constantly be praying about it.  I brought our three-year-old to a fitness play class yesterday, and ran into a young mom who I had ministered to just a year before. I remember her saying that they are done having children, after having two. I shared our story with her, just to give her a little bit of a different perspective. I cannot tell you how excited I was when I saw her yesterday, as she was so radiantly beautiful, and five months pregnant.  God is amazing!  With that said, today I am thankful for a beautiful family, but I know we never know what tomorrow brings. We never know how long any of us have on this earth. And we will never know the trials that are to come tomorrow. As parents, we pray, we love, and we do what we think is best as far as how we raise our children. We have not let fear affect our choices. As fear is not of God.  I can only promise all of you young mamas, that your love can be stretched, That your heart can be opened, and that you will never regret prayerfully considering growing your family. 

A Life Worth Living

I

I received a text the other day, informing me that there was a talk on NPR, specifically about down syndrome.  I raced to the radio, and was completely delighted by everything I heard.  It was informational, and so positive. I heard from professionals, siblings of individuals with DS, parents, and even from a young man who had the extra chromosome himself.  During the broadcast, people were tweeting in "there are more blessings than not", and were pleading with people to reconsider terminating their pregnancies.  The man conducting the interview mentioned that they have been having the same talk on this topic for the last few years, and that everyone interviewed has such positive things to say about this extra chromosome. The director of our local Down Syndrome Association group quickly chimed in that she has had more families who are prenatally diagnosed join the group, than ever before.  What an incredible correlation, that this community's large and loud campaign to advocate for life for individuals with DS, is proving soccessful!  As moved as I was to listen to this broadcast, I was equally saddened by the time the talk show was finished. The heaviness on my heart was in thinking about all of the little innocent babies who are being prenatally diagnosed with a condition, and without a loud advocacy group encouraging their life. I felt like crying out for all of those parents who will never hear that their baby's life is worth living, even if it's for a few hours, even if that child will never speak or walk.  Crying out for the parents that will not be told that their child will still have a purpose in this world.  If only we could meet those parents at the geneticists door, and assure them that they will love their baby. Assure them that regardless of the outcome, everything will be okay. It's amazing that our heavenly Father has not completely discarded us, with all of our blatant imperfections. He continues to love us, and gives us a chance at life.  Yet we come to a place where it is inter-woven in the fabric of our culture, that we can choose who is worthy of life, and who is not.  Today I am hopeful for more advocacy. I pray that every prenatally diagnosed condition gets a voice. A loud, confident, and bold voice that will stand up for LIFE. 

A lesson on gratitude

A dear friend and I were taking a walk this morning, when the subject of gratitude came up.  I loved hearing that she placed an equal level of importance on it with regards to teaching gratitude to children at a young age.  Reflecting on my life thus far, and what I am most thankful for, my dad is definitely high up there on the list.  Though I only had him on this earth for the first 10 years of my life, I have so many fond memories of him, and such a strong sense for who he was.  I remember his strong voice and boisterous personality. I can still close my eyes and hear him singing beside me in church. I remember his joyful smile and big daddy arms throwing me up in the air and hugging me.  I remember his playfulness, and can still see him barreling down that huge waterslide head first, arms in front of him,  at the young age of 60!  I'm grateful for all of these warm memories, but also for what he instilled in my brothers and I, gratitude itself.  Gratitude for anything given to us by others.  Gratitude for blessings from above. Gratitude for all the little things that are so oftentimes overlooked.  My father served his time in the Army Air Corps, in World War II, and lived through part of the great depression.  I remember him telling me about his favorite toy, which consisted of hooking paperclips together..... a choo-choo train.  Perhaps it was growing up with so little that influenced my dad to be so grateful.  And couldn't our culture now benefit from more gratitude today?  Just perhaps it would take some of the focus off of ourselves, and what we do not have.  Perhaps we could focus instead on how grateful we are for what we do have.  Rather than questioning our heavenly Father of why things have not gone our way, perhaps we could all be more grateful for His way.   Gratitude for His master plan and heavenly guidance, not to mention His eternal and everlasting presence.  Today I am grateful for life.  I'm grateful for my loving husband and six beautiful children. I am grateful for all of the friendships he has bestowed onto me.  I am grateful for good health, freedom, and food for our family. I am grateful for the 10 beautiful years that I had with my daddy. What are you grateful for today?

Less is more. Or is it?

     With most things in life, I've always taught our children that less is more.  As toddlers, when my girls would walk up to me adorned in several patterns and colors, three layers of tutus, topped with a bundle of sparkling necklaces, and a scarf to boot, I would smile and complement them on their beautiful choices. But when our oldest daughter got to middle school, it was time to teach her the truth. Less is more! Less eye make-up honey, and absolutely less electronic time, and don't forget less time with your friends and more time with your family please.  And the topper, less thinking about what other people think!  Yes. Less is more.  But like anything, I have learned that it depends on the subject when talking about less-isms. There are no generalizations in life. I think of Luke for instance. He's a perfect example of more is more. That extra chromosome number 21 has absolutely graced him in such a way that he enhances every life that he comes in contact with to date. I truly believe that.  Because with that extra chromosome, those around him bode extra perspective, extra acceptance, extra gratitude, extra joy, and extra Blessings.  An example, all of our children's first smiles brought complete joy to the room, without a doubt. When they grabbed their first toy, found their slobbery little mouth with their own hand, or tracked their mommy walking across the room with their eyes...all very exciting. With Luke, these "firsts" brought tears, as it meant yet another  developmental milestone was made. I'm guessing this is the case in families with any kind of disability within.  From the outside looking in, I would have assumed that those families were constantly struggling with the fact that their kids were not "typical".  I pictured quiet desperation and regrets.  Again, I was completely blind, and absolutely ignorant. In a society that prides itself in having children with top grades (4.0 is no longer the bar), who are all-star athletes, and artistically talented, It's hard to get recognition for other amazing attributes.  Children with disabilities themselves obviously have a long list of amazing gifts, including perseverance, positiveness, and pure affection. But what about what these kids are teaching us? It's like a multiplier affect!!  In God's beautifully orchestrated plan, these children were strategically placed in this world to create balance. To remind us that we ourselves are not perfect, and that our strength should come from our Father in heaven.  Only in His plan is there perfection. And with each human being He has created, there are gifts, or strengths.  Wouldn't a society benefit on emphasizing these, rather than focusing on one's shortcomings? In our children, we should be praising them for practicing compassion, empathy, kindness, and humility.  When our son joined "peer buddies" in middle school last year, he did not know what to expect when working with children with disabilities. He was quickly paired up with a nonverbal boy with autism.  Gabriel quickly learned that though nonverbal, this boy had such a charming personality. When Gabriel would walk down the hall and see this boy, he would always smile and wave at him.  The boy in return would run up to Gabe with a big smile, and wave right back. When the school year was over, and Gabriel and I were conversing about this, he mentioned that it brought sadness to him, for before working with these children, he unintentionally did not acknowledge them in the hallway.  And just one person waving at them, changed their entire demeanor.   The changes that I've seen in our children are astounding, since our family gained that extra chromosome. Today I am so grateful for more.

The Attic

As all the kids returned to school last week, I made my way down the to-do list, which included cleaning through the children's clothes in the attic.  What a task, considering we have every size up to 13, in both genders. Yikes!!  All was going well, as most sizes were contained to one Rubbermaid container, until I reached girls, size 12/13.  I soon found myself surrounded by three containers full! Completely baffled, I started rummaging through all of Anna's middle school clothes.  It was a perfect blend of Abercrombie and Fitch, American Eagle, and Gymboree. Yes, Gymboree.  Then it all came back to me. Those initial middle school years, when they are still our little girls, but they are trying, yearning, seething  to catapult out of that nest. When we are trying so hard as parents to keep them sheltered and innocent,and their naïve teenage minds think they can embrace all that the real world brings them, not knowing what that real world is actually like. Hence I remember being so thrilled in the fact that we could still get size 12 in Gymboree! My excitement was never matched by my daughter's reactions.  So there was a lot of compromising in sixth, seventh, and eighth grade. She never wore the Gymboree (though I obviously did not return anything, so I was holding onto hope) and I eventually let her wear Jeans and a couple of T-shirts from The "hip" stores.  Now in high school, I secretly smile every time I see my daughter going to my closet to borrow something. :-) And although I get after her for not always returning things, I am overjoyed in the fact that she has found on her own a conservative way of dressing and looking beautiful, and treasured. When she returned home from school on that attic clean out day, I looked at her in the eyes and apologized for trying to dress her in Gymboree at the ages of 12 and 13. She just threw a big smile back at me.   I think that she understood that I had good intentions.

To all Mommies with a prenatal DS diagnosis

As I stare into our baby boys' beautiful blue eyes this morning, that routine memory creeps into my thoughts, if only for a second.  Luke's presence brings me so much pure joy, from the moment I first laid eyes on him.  It's an unequivocal sense of pure love, as I felt for all of our children.  There is one difference with Luke however. That unwelcome memory that crept in my head this morning.  That memory that was laid down just 10 months ago, when I was made to believe that he was not lovable...he would not bring pure joy to us and the world.  Within five minutes of seeing all the markers on the ultrasound screen, I was asked if I wanted to continue with the pregnancy, or terminate.  My mind was flooded with thoughts. I actually let fear creep into my mind for a few minutes.  How are we going to do this? We have five other children!  Will he walk? Will he talk? Will he be accepted?   Then with one big exhale, I released that fear. I felt the presence of the Holy Spirit more profoundly than I ever have.  At that moment, God knew exactly who Luke was, and who he will grow into.  His purpose was set long before he was forming in my womb. And where there is life, there is love.  So why does that memory still give me chills today? It all ended happily, right? I think about all the other mommies that are given that choice in that time of fear and despair.  I think about how "special needs" is painted as something awful, and that will take away from our joyful happy lives. They will require more time, more effort, etc.  I think about how their diagnosis or label is painted as unlovable.  My wish is for every one of these mommies getting that diagnosis today, to know that they will love their babies unconditionally. And more blessings will come from their Baby's life, then they would have ever have thought possible.  They will be changed in a positive light, in love, in acceptance, in empathy, and they will grow.  They will grow in faith. They will grow in love. And isn't that our purpose in this life? To take that faith and love and share it with others?  I feel as though now that I was blind. Blind to the truth.  And where I was blind, I now can see.

The Pants

On Sunday morning, we were all getting ready for mass,  and Joseph lays his newly pressed pair of khakis on the edge of the bed.  He then gets in the shower. Meanwhile, Luke was laying in the middle of our bed, which quickly attracted Olivia, Joshua, and Eliana.  The king size bed, covered in a mountain of down blankets and pillows, topped off with a cute baby, was too much to resist!  They were rolling and doing  somersaults off the left side, then  the right side..... you can only imagine Joseph's face when he walked out of the bathroom in his boxers, anticipating that his nicely pressed pants were on the side of the bed still obediently waiting for him.  The kids had already moved on, and left a mound of wrinkled church pants on top of the bed. I cannot tell you how hard I was laughing. I think I actually had tears coming out of my eyes. It was just one of those moments.  And now that the kids are back in school today, you would think that I would be excited to have some order back in the house, and have time to make everything neat, organized, and clean again, but I miss them so much. :-(. My heart physically aches this time of year, when we are saying goodbye to summer, and goodbye to the freedom of having lazy days.  I long to look out the window and see them playing explorer together, with their binoculars and bug boxes, and little straw hats on their heads.  I already miss seeing my 12-year-old give soccer lessons to the younger ones in the front yard.  I miss seeing Anna contrive up a new smoothie recipe, while dancing around the kitchen with Olivia to her Frozen music.  Although there is much to mourn, I know there is much to celebrate. I know they are learning and growing, and experiencing new opportunities as we speak.  Sigh.....

Reflections

Joseph and I were taking a walk together last night (our typical date night), and just reflecting on the previous week. Both of us were agreeing that the entire surgery and healing process were not what we expected, with exception to the first 12 hours in the ICU.  That first night after surgery was quite frightening, seeing your little baby being kept alive with machines and medicine.  Yet it was not long before he started to wake up, and breathe over that breathing machine.  He started to fight! And ever since, each day of healing is what we were anticipating to be a weeks worth. And now, life continues. We feel as though we went unscathed, almost as if none of it happened. It's so peculiar. And what is remaining? For Luke, a beautiful zipper, which will be a little reminder to him to give thanks to God for every living day. And for us? A deeper level of trust.  In his book "Falling Upward",  Jose Escriva talks about our growth in our relationship with our Father, the sanctification process, and climbing the ladder to holiness.  He writes about how most people do not start climbing this ladder, until they are brought to their knees, through what we would normally view as undesirable circumstances.  These circumstances seem so undesirable at the time, but once you are in it, and get through it, you end up so enlightened....

Dancing Queen

We were awoken not by Luke and his cries of hunger early this morning, but rather by little footsteps entering our room.  Our sweet little three-year-old princess was eager to remind us that this was the day that her ballet class was to begin.  Every five minutes from that point, she asked me if it was time to put her ballet leotard on.  After two hours of this, her excitement was not waning!  She convinced her five-year-old brother to join her in waking up big brother, to ask him if he would like to tag along for her first class.  They were very cautious in  doing this of course, as teenage siblings can be on the grumpy side when woken up to early!  Two attempts, and not a word or even a flutter of an eyelid.   Just fifteen minutes before we leave for class, and Gabriel shoots down the stairs, asking me how much time he had to get ready. He insisted that he wanted to be there to walk his little sister into her first ballet class.   So these are the moments as parents when we stop whatever we are doing, and smile from the inside out.  When we witness an act of love between them, an act of selflessness, and feel the presence of the Holy Spirit working in our children's lives, it leaves us speechless.

Six Days Post Op

We had heard from several heart baby parents, that we would have a new baby after surgery.  New baby after surgery? What could they possibly mean?  He seemed so perfect just the way he was!  A little fatigued, but what baby isn't? Well, now we know. Before surgery, we always commented that he was by far our easiest baby. He was the definition of "chill".  If he was really upset, he would literately not cry, but say "waaa".  And then he would be worn out. He was our first child that did not need a pacifier for soothing. However, now that he has that nice balance of oxygenated and deoxygenated blood circulating around his beautiful little body, little guy has discovered that he has lungs. He can actually cry now!  And he can turn a particular shade of bright red that is reminiscent of a ripe tomato, if we are not meeting his particular need at that moment.  Wow! We had no idea that he was so opinionated!  And a pacifier is absolutely a must now. On the flipside, his  "conversations" with us have been much longer, with many more smiles in between.  And it's so nice to see him with a beautiful hue of pink within his skin now.  The new and improved Luke!  Every day, he seems to be getting stronger and more awake. And his zipper on his chest is healing up quickly.  Simply amazing.

Dear Mommy and Daddy

Dear mommy and daddy, thank you so much for choosing to bring me into this world, and into a home with my three beautiful sisters and two big brothers.  I love how Annaliese makes silly faces at me and sings me sweet little songs. I love how Gabriel sits in front of me and teaches me all about his favorite English Premier League club team, Chelsea FC. I love how Olivia scoops me up and cuddles with me, every free second she has.  I particularly enjoy holding onto her long blonde locks.  I love how Joshua lays beside me on the floor, and talks to me like I am five years old too. And I love my big sister Elliana, as she expressively shows me constant affection, usually within 3 inches of my face. I want to thank you for accepting me just the way God made me, extra DNA and all.  I love waking up every day to a family that cuddles with me, smiles at me, talks to me, and makes me feel so loved.  I'm so grateful that you were by my bedside when I came out of surgery, and for not losing faith that our Father would take care of everything.  I'm grateful for all the hundreds of people that were praying for me, day and night.  I cannot promise you that I will not go through my terrible twos as a saint, or skip over my three-nager year of attitude.  And I cannot promise you that I won't throw my dirty clothes on the floor, forget to take my plate to the sink, or ever use the word "no" to you!  But I can promise you that I will always be grateful for your love and support, for the faith you pass to me, and for the family that you surround me with.  And I can promise you that you will be thrilled to see me live out the purpose God has intended for me. 

With Love, Luke

Going Home

Thank you for all the prayers everyone! We are headed home.....

Mended Heart

The last of the remaining tubes were taken out last night, along with two of the remaining monitors.  His beautiful smile is surfacing again, and he's engaging in "conversations" with us.  He's surprising his doctors, and there's even talk of discharging him later today.  Wow!!!  I cannot tell you how many times I've heard medical professionals use the term "wimpy"  when referring to children with DS, in relation to how they heal and recover.  As of right now, not so much!  Lets continue to pray that little Luke continues to heal and become stronger.  Go Luke!!!

Hospital Fashion Sense

Sweet four month old Luke is proudly sporting his stripes in these cute leg warmers, providing warmth to his little legs, and easy access for diaper changes.  Mommy gives these two thumbs up!

This sweet soccer hat makes these baby blue eyes sparkle, while providing brotherly support for big brother, who's playing in the first tournament of the season today.  Go Gabe!  I love you bro! (Hat is compliments of Lisa Schloeder).

Good morning sunshine

I

So who needs sleep after OHS?  Not this little guy!  Only mommy did not get that memo, so I was completely surprised when he woke up every hour on the clock to be rocked in mommy's arms.  I'm not complaining though.:-). He is now completely off of supplemental oxygen, and has minimal drainage from his chest tube.  We are hoping that it will be removed today.  He's taking tylenol for pain.  He's on his way to recovery!  Praise be to God!

Good Appetite

So little man Luke is resuming gallantly to his three favorite sporting activities... smiling, looking cute (naturally with little effort), and eating.  He managed to slurp down 6 bottles during the night.  And I, his mommy, was completely overjoyed to be at his beckon call every time he woke up.  It is completely amazing how resilient these little people are!  Life resumes so quickly after open heart surgery.  

Today he will get his second chest tube removed, as well as his heart leads.  This will make it much easier to pick him up and cuddle.  Yeah!  He does have some residual congestion as a result of the breathing tube, and will continue to be on a low dose of oxygen, and LASIK to remove the extra fluid around his heart.  We were able to see his chest X-ray taken right before surgery, and his heart was taking up 2/3 of his chest cavity.  Like any muscle, if its working hard all the time, it will get bigger.  ❤  Seeing that xray made it even more real for us. Now that its fixed,  over time, it will resume to a more normal size.

Yesterday evening, the hospital chaplain stopped by for a visit.  He commented on how much he loves this hospital, as it is filled with so much love and healing.  I have to admit, when we came to Levines Children Hospital for the first time on Monday, I was thinking the opposite.  I couldn't get over seeing sick kids in wheel chairs and hospital beds, and wanted to see those children free from these walls, doing things that kids should be doing.  But the chaplain was right.  Isn't this life?  Curve balls can be thrown at us at any time.  Sometimes we can jump, sometimes we can move to the side and have a "close call", and sometimes they just hit us.  And instead of pleading "why me", these are the opportunities for us to use our faith.  To be reminded not to take things for granted. To be reminded that our Father does not abandon us.  To bring us together as brothers and sisters through L❤VE, through His presence. 

Dear Heavenly Father, today we are so grateful for Luke's life, for these amazing doctors and nurses, and for taking all of our fears and anxiety away during this process.  Thank you for helping us accept the unknowns, and filling us with your peace and love.  We will forever be grateful for this.  Amen.

Movin On Up

Luke was just moved up to the 8th floor, into the "progressive unit".  He spent only 24 hours in the ICU.....little tough guy!  The nurses all love him and call him feisty one-as he loves to pull his oxygen tubes out of his nose, and push any prying hands away.  He still has one chest tube in, as well as his heart leads.  We're still trying to wean him off of the O2.  Will keep you posted...

A successful night

His first night in the hospital was a steady and uneventful one.  No major surprises surfaced, and Joseph and I were actually able to get some sleep.  We had an incredible nurse that stayed with Luke the entire night, administering different medications which seemed like every 10 minutes, turning alarms off, moving tubes and wires around, etc. Talk about a high stress job!  Thank God for good competent nurses.   This morning they extubated him, and with that, he had some strider, which they medicated him for.  They are going to wean him off the Phenol today, and put him on a low dose of morfeine.  He should be able to resume eating today.  

Luke's Surgery Day

We knew this day would come, as of nine months ago. It was that very first ultrasound we had, when I quickly suspected that something was wrong, as the technician spent 45 grueling minutes taking images of his heart.  I knew that we could all handle an extra chromosome, which has proved to be an indicator of extra cuteness. :-) But open heart surgery?  And quickly, God answered. By blessing us with such a wonderful and Godly man named Dr. Hamill (pediatric cardiologist), and one of the top heart surgeons in the country, Dr. Peeler.  And he topped it off with hundreds of friends and family who vigilantly prayed on their knees for Luke, leading up to and on the day of his surgery. This day, my heart is overflowing with love and gratitude.  Luke is so blessed.  Yes, God did answer. And although I teared up this morning as I rocked him in my arms and sang "You are my sunshine ", I knew in my heart that God had this. God has an ultimate purpose for his life, as he does for all of us. We all felt at peace during the surgery.  Thank you Heavenly Father.