Macy's 1st day at DAYCARE!!

This afternoon I have to go into the office for a quick client meeting...one of my clients is a surgeon, so unfortunately my modified work schedule will not always work well with hers, I suppose I can make myself a bit more accommodating (sometimes) :-)

In any case, Joy was SOOO excited when I asked her if Macy could spend the afternoon with her and the daycare kiddos. It was really hard for me to leave her there, not that I don't trust Joy, I DO! I just can't quite wrap my arms around why it is so difficult to leave Macy with someone who is not family. I will get better...this is the first step! :-)

These are the little ones who are there today...Emmett (yes, that's a Telletubie costume! ha!) Cousin Anna and Sarah. Big Sister McKenzie is of course there too. All these guys will be very gentle and help Joy watch over her :-) I didn't get a shot of Baby Luke and Morgan cuz they were still eating lunch, but I know that Macy will LOVE watching them play too!

Mckenzie has been going to Joy's loving daycare since she was about 8 weeks old. As you can see, Macy is going to love it there as well!

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We will continue to keep Macy home for at least another month or so. She is just not ready to give up her one-on-one time with Grandpa Lee. But today will be a good trial run...

When that day comes that Macy starts going to Joy's full time, I'm not sure who will have the most difficult time...me, Macy or my Dad. Probably my Dad!

Fun with Friends

Thomas turned 2! McKenzie and Macy were pretty excited to have been invited to his Birthday Party this past Saturday :-)

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This morning me and the girls met up with some other Down Syndrome Super Mom's at Walnut Grove Park. It was a great morning, a little on the chilly side, but hey at least it was DRY!

As nice and comforting as it was for us mom's to connect and as fun as it was for Macy, Wesley, Vollen and Tessa to bond (or sit there and stare at each other from their baby carriers)...it was even more exciting for the big siblings to play! It was fun watching them run around and have a good time. Not a care in the world!

Jessie was playing that "Crack the egg on your head" game with the kids, they were LOVING it...I remember playing that when I was a kid. Now if only I can recall the words, I know McKenzie is going to ask me to do it to her later. Jessie, I may be calling you!

Faster...Faster!

Higher...Higher!

Macy and Wesley peeking at me....trying to stay warm :-)

Casie and sweet baby Tessa

Casie just shared the news that Vollen will have to have surgery to repair his heart soon. Our thoughts and prayers are with you guys...we know that baby V will get through this, he is so strong and brave!

Just look at the precious smile :-)

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Last Friday, Macy and I drove down to Lincoln to visit cousin Harrison again. He is doing so well and is such a cutie :-)

My Niece is graduating!!!

Oh my goodness, my mind is racing. I cannot get over the fact that my niece Erika had her last official day of High School yesterday. This is SOO crazy. My baby niece is graduating from High School!! Where has the time gone??

Now you must know, Erika is VERY special to me. Of course, all of my nieces and nephews are special to me...but I must say there is a very special place in my heart for her. She has touched my life in a profound way. I will share that in a little bit.......

Last Friday evening we had an impromptu gathering with Erika to view her senior video (of which her Dad made). It was 30 minutes of TEARS, all happy tears of course, as we watched Erika’s precious little young life flash before our eyes. Each and every photo and video clip brought back so many WONDERFUL memories. Not to mention the fact that the images were accompanied by the perfect song selection, great job Dan! This little angel came into our lives 17&1/2 years ago, brightened it up and brought pure joy and happiness to all who met her. She forever changed the course of where our family is going and what our family stands for.

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It seems like only yesterday (I was in 7th grade mind you) when we learned the news that my sister Keri was unexpectedly expecting a baby. It was the summer before her senior year in high school that her life would be derailed and changed forever. I truly believe that everything happens for a reason and while this specific news came as quite a shock to our family, you have to believe that we, as a family, were quick to accept that Keri was bringing a blessing into our lives. I still remember so vividly that night. This is how I (at that time a young, immature 12 year old) recalls that event. Keri had been experiencing severe back pain for quite some time. Finally, after no relief, my mom and dad took her in to get it checked out. It was late, well past midnight. Heather, Lisa and myself were growing concerned. Why was it taking so long for them to come home from what we thought was a simple visit to the doctor? We assumed they'd prescribe her some meds and she'd be home soon...much later, when they finally arrived home, we greeted them at the front door, us three girls sitting at the top of the stairs. Right then and there, in the middles of the night, we had an intense family pow-wow. My Dad, with a serious and endearing expression on his face immediately shared with us the news that Keri was having a baby. Whoa…did I hear this correctly? My sister, of whom everyone who knows her will agree, is a VERY good girl, she has a very nice boyfriend, she is VERY responsible, VERY smart, VERY athletic, she has EVERYTHING going for her. How is this possible? This sort of thing does not happen to girls like her. We were all in tears…At that very moment my dad (who most know is a man of few words and is not overly opinionated) shared with us as a family that Keri realistically has 3 options, but in this family, Keri has 2 options. I don’t think I need to spell them out for you. He said "We AS A FAMILY are going to stand behind her and support her with whichever decision SHE chooses to make. It is ultimately up to HER." I have never had more respect for anyone ever before in my whole life. Those words my dad managed to get out, holding back tears, spoke volumes to his and my mom’s core values. I firmly believe, at that very moment, a moment of darkness, confusion and a little bit of fear for the unknown, our family grew to be close. This is WHY we are as close as we are today. This is the first real challenge our family had faced. And from that moment on I truly believed that FAMILY is everything, with the support of family we can get through anything! We hugged, embraced and wept hard. I still do not and probably cannot really imagine what exactly was going on inside Keri’s heart that night. But I hope she knows that her baby sister still loved, respected and admired her very much. I had always looked up to her and hearing this news did not change anything! Bright and early that next morning we ventured out, as a family, to our Grandparent’s homes to share this news with them in person, as a family. I have deep respect with how this news was broken. It was presented with a “matter of fact” attitude. “Mom, Dad, our daughter Keri is having a baby”. I recall them, strategically, not using the phrase “pregnant”, because the term “pregnant” can come off as so clinical and insensitive. “Keri is having a baby” came off as much more personable, light hearted and endearing. I do believe I remember my Grandma and Grandpa Lee receiving the news very positively, while immediately providing words of comfort, support and productive encouragement. From what I remember, the news was a little more difficult for my Grandma and Grandpa Salisbury to take in. If you knew my G&G Salisbury, you would know that they are (or at least were) pretty strict, very Catholic and stuck in their ways. Growing up we were always careful as to not "dissapoint" them. I remember my Grandma asking in a judging tone “what are you going to do about it”? I remember my dad, responding promptly. We are not here to “ask” you for your acceptance or opinions, we are simply here to share with you this news and to let you know that we, as her parents are supporting her with whatever she needs". Period. Bottom line. That was that. I think that was difficult for my dad to do and say, but it NEEDED to be done. From that day on, we all went on with this new reality and embraced everything beautiful that came along with it.

Keri experienced several complications and was in and out of the hospital with life threatening issues for several months leading up to Erika's birth. Among other things, she had severe blood clots and even underwent blood & plasma transfusions after the delivery. I had mentioned previously that my G&G Salisbury were initially shocked, but once that wore off, they were 100% supportive. During all of these days spent in the hospital they were right there with Keri by her bedside. My Grandma was knitting and my Grandpa spent most of the time playing Tetris on the hand-held Nintendo Gameboy! :-)

The day Erika finally arrived is still a bit foggy to me, but I do recall being by my sisters side through it all. I also recall, vividly, having to leave the birthing room as her contractions increased. You see, due to her condition, she was not able to have an epidural, so as you can imagine, was in severe pain. There was loud screaming and a few not so nice words. I was and still kind of am scarred to tell you the truth. I decided to just go ahead and wait out in the lobby! Blessed be the Lord a beautiful baby girl was born perfect and healthy! September 28, 1992, weighing in at a little over 6pounds, she was the most adorable angel I had ever held in my arms, such tiny and perfect little features. She was truly a miracle. I was such a proud Aunt!!

Fast forward.

Is this NOT one of the cutest little girl's ever...I especially loved watching her at her little baseball games in that big oversized hat :-)

Keri went on to, of course, finish high school. She and her boyfriend, Erika’s biological father, had, for good reason, gone their separate ways. I am so proud of my big sister. Against several odds, she went on to graduate from the College of St. Mary (with two majors & high honors) while holding down a full-time job with US Bank. She still works for and is very loyal to US Bank to this day. They continued to live at home those first few years after Erika was born. Erika was like a baby sister to me. I loved having her around. I loved that she came and cheered me on at all my ball games, she was my biggest fan! All of my friends just adored her. What a joy she brought to our lives. She was like a sister to me. I have many memories of watching Barney with her and reading the Sunday Comics to her very frequently. We also liked to watch the Little Mermaid together. :-) She was one of my best friends! She not only touched the lives of our family, close friends and neighbors, but the entire community of Waterloo embraced this little girl.

A few years later, Erika’s mommy met a prince named Dan Mallory. Dan is an amazing man! He and Keri fell in love, he proposed (in true firefighter fashion), they wed and were sharing a beautiful life. He loved Erika as his own, that was APPARENT. The day he proclaimed to God, stood in front of the judge, signed the papers and officially adopted her was one of the most beautiful days I can recall.

What a celebration we had. Keri and Dan went on to welcome two more babies into the world…Colton and Anna.
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Fast Forward

My quick note to Erika: Erika, you are so beautiful inside and out. I could not be more proud to say that I am lucky enough to be your aunt. Before you were born, I strongly believe that you had a choice. God asked you, “what do you want and who do you want, it's up to you, take a pick.” I believe that you hand-picked your mommy. You chose wisely as she certainly IS one of the best. You are the BEST thing that has ever happened to her. You made her who she is today…and for that…I know she in eternally grateful!
Let me rephrase that…you are one of the BEST things that ever happened to all of us. You made US who we are today…and for that…WE are eternally grateful.
We all know that you are going to go on and do great things. You have all the potential in the world to do so! Your mom and dad have instilled the finest of qualities, morals and ethics upon you. Please allow us to continue to share in your wonderful “adult life” journey!!!

So to conclude, I look forward to watching you receive your diploma on that big stage with the rest of your fellow Burke High classmates next Wednesday. My heart will be warm with pride.

Love, Aunt Sherri

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I now leave you with a few sweet photos of my dear niece :-)

This photo was taken just before her Senior Prom a couple weeks ago.

Last Christmas! I do believe Erika is somewhat to blame for some of our family craziness :-) The leader of the Pack.

Erika swimming with McKenzie a couple summer's ago. She is so great to all of her little cousins! They adore her and are lucky & blessed to have her watching over and loving them :)

Today's playdate & 4 month well baby visit

We had a great time this past weekend, getting together with both sides of the family on Friday and Sunday (Mother's Day was wonderful). D.S. Mom's Coffee on Saturday, followed by a Dance recital, wedding and reception. It was SOOO great catching up with a bunch of college friends at the Hope Wedding. Sadly, I did not take any pics this weekend...yes, I had my camera with me, I was just too exhausted (maybe a bit lazy) to shoot any pics - we had the girls with us & did I mention it was a Catholic wedding? Yeah, my 2 year old likes to talk a little too much, so we were out on the front porch of St. Margaret Mary's Church for 1/2 of the ceremony. You can only ask too much out of a toddler afterall :-)
I am bummed, however. I would have liked to have gotten a pic of Justin (the groom) with all his Kappa Phi college buddies...there was a great turn out of them! oh well...life goes on...
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After a long weekend of fun...you'd think perhaps we may want to lay low on Monday, being it's my day off and all...NAH! Let's go play! :-)

This morning Macy begged & begged, she wanted to play with her new buddies, Wesley & Brady.

She was relentless. How could I say no??!?

This is my Little Miss Macy (4 months) with Wesley (8 months) & Brady (2 yrs)...are they not adorable?? These 3 all share the commonality of having a little something "extra".

Macy and the boys "chattin' it up. Having a little Pow Wow. :) I think Brady was telling them about how he is going to be a big brother soon...his new baby sister's name is going to be Ivy (spelling?) sooo cuuute!

HELLO! Brady is getting soo close to being able to walk, how exciting!! Good luck little man. I just love the videos your mommy & daddy posts of you scootin' around your house! :-) They'll be chasing you around in no time!

I know what you are wondering...does this Brady boy ever stop smiling? Ummm, Nope...he appears to be a non-stop smilin' machine! His folks are pretty funny character's too, so I'd say it certainly runs in the family :-) And he is so polite too...he has mastered many baby signs and "please" is a major part of all his phrases...what a doll...I'm pretty sure he's got his folks wrapped around his finger!

McKenzie sneaking into the photo I'm trying to take of Wesley...silly girl!

Yes, McKenzie, he IS just so precious you can't help but kiss him! And he's like a "Lays Potato Chip"...you can't have just one :-) She kissed his little head like 5 times.
Not quite sure what he was whispering to McKenzie, but oh man, it must have been FUNNY!

This is Jessie (Wesley's mom) - she sure was getting lots of smiles out of Macy!

McKenzie had a ball playing with Wesley's older sisters...Louise and Saydie (William was at pre-school :-( ). They got along SOO well...McKenzie is looking forward to many more playdates with them :-)

Whoa, that's a lot of play-do.
Not only did the kiddos have a great time...it is hard to put into words how NICE it is to connect with these new moms I have met through ODSPN. It is extremely comforting to learn and share our experiences, questions and concerns with each other. We are all on our own journey's full of many unknown's and it's just nice to know we are not "alone".

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oh yeah...Macy had her 4-month well baby check up this evening. It went very well! She is just doing SOO great, we continue to count our blessings each and every day. Thank you Lord!!! We do NOT take a single day for granted and are just sooo thankful for her health.

Today, Macy weighed in at 12lbs 2oz. (15th percentile on the D.S. growth chart). She's 23.75 inches in length (10th percentile on D.S. growth chart). Her head measures about 15 inches or so (50%). Even though she's still a teeny little thing, she continues to grow at a very good and steady pace...she is getting bigger and bigger each and every day.

Macy's visit to the Sleep Disorder Doc

WHAT IS THIS? you ask...

This is, I'd say is "straight A's"! Kind of a report card if you will...We were instructed to keep track of Macy's sleep patterns over the last 4 weeks or so. It is very interesting to see it all charted out...I'd say her trends are phenomenal. Check out all that pink & blue...those are her sleep times. And yes, those LONG stretches are thru the night :-) I really don't want to brag, but what can I say, our child is somewhat of a sleep prodigy...

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This past Friday Macy met with Dr. Wilson. A Sleep Disorder doctor at Children's Hospital. We wanted to have someone else give us their opinion as to why Macy makes such loud squeeky high-pitched noises when she is sleeping. While it does not seem to bother her all that much (thankfully), it is quite unsettling for Joe and I. We just can't help but worry!

In any case, here is what the Doc had to say:
She has multiple levels of upper airway obstruction associated with her Trisomy 21 (kiddos with Down Syndrome generally have narrowed and shortened airways as well as narrow nasal cavities). This contributes to Laryngomalacia, which is a soft larynx "voice box"...This intern causes her to have a Stridor (turbulent airflow in the upper airways)...hence...the LOUD squeeky noise.

The ENT doc she saw previously did a scope and basically explained that mucous buildup on her vocal cords is what causes this loud, high-pitched noise.

Okay, so now we have a pretty good idea as to why this is happening. It is comforting to know that, while it is important for us to obviously keep an eye on it, it is nothing for us to be overly concerned about at this time. pheww. We'll all be able to sleep a bit easier knowing this :-)
No more running into her room in the middle of night after a few loud noises...well we may still anyway, just out of habit :-)
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Speaking of "vocal chords"...check out Big Sister McKenzie's. One of her favorite things to do is get up on her stage (the fireplace) and serenade us. She is just so dang cute, I could eat her up!

Here is her dramatic performance of Humpty Dumpty...


ooop, I accidentally video taped this sideways. oh well! It's not about the video, it's about the audio anyways :-)



A creative rendition of Hey Diddle Diddle (she got most of the words right at least). Simon Cowell would be impressed by her "making it her own"

btw - She has quite the interesting accent here, not quite sure what origin??

Standing Outside the Fire - Daddy's view

Sherri has been itching for me to put down my thoughts into words for a while now. So here goes, from Daddy's perspective…

I consider myself a pretty conservative, quite guy. I’m not too outgoing or outspoken and don’t take too many risks. My life has mostly been “standing outside the fire”. The riskiest thing I had probably ever done was to ask out a blond haired, blue eyed, small town Pi Ep sorority girl. Things were going great, beautiful wife, daughter, home, and a great career. Living outside the fire was working out for the most part. Then there was a two minute period on 12/28/09 that threw me into the fire…

The day seemed to be going pretty smooth for the most part - Baby crys, cut the cord, sherri holds her, hugs & kisses, then the nurses take her to clean her up. I snap some pictures. Every thing seemed normal. Calm and cool. Then maybe I remember 1 or 2 extra bodies in the room, nurses I guessed. Warming up. At that point I felt I should go out and let the family in the waiting room know everyone was doing good and tell them the name, Macy Lee. When I returned to the room I knew something was up, as the doctor was at sherri’s bedside and Sherri seemed concerned. The heat picks up. I remember quickly getting around the doctor, to her side, and hearing her say they think Macy has Down Syndrome and they are calling another doctor to confirm. It was at that point I felt like I was standing inside the fire. In those few moments, it’s hard to express the thoughts and concerns that flew through my head…”please no...why…what did I do? She looks just fine.” The other doctor came in and Macy was brought to us. As she showed us some of the signs ( the single line on the hand, slanted eyes, lower ears), my heart sank. The emotions that I felt after this confirmation was sadness, disappointment, pain, confusion… Yet I vividly remember that these emotions did not last too long. I looked to Sherri, tears in her eyes, holding Macy and remember both of us saying in some form, that “We still love her”. I remember constantly telling myself, “She’s my daughter and I still love her. Nothing is going to change that.”

The sadness and disappointment quickly turned to love and compassion. One of the greatest moments was when they brought back Macy after she had been cleaned up and she began nursing with Sherri almost instantly. I was so glad for Sherri that there was no struggle in making that connection. Once again Sherri provided a glimmer of hope and happiness in a confusing time. The outpouring of love from friends and family was amazing, but not surprising as we know the caliber of people that you are. Before getting Macy home we experienced a transfer to Children’s, checking her heart, keeping her temps up, etc… This all was an emotional rollercoaster that was excruciatingly exhausting. Although I know Sherri was tired, she always looked amazing and stayed strong. In the end, we came home with a healthy baby girl who has Down Syndrome. At that point my emotions seemed to constantly switch from happiness to not sadness, but to concern for the unknown. Questions that I had no answer for. No one had answers for them. This was the hardest part for me, but its getting better. I’d say that I really only felt sadness, disappointment for only those first moments when we first found out about her diagnosis.

The hardest thing now is keeping my mind from racing to the future and worrying about the unknowns? I’d say that 90-95% of the time I feel pure happiness and joy with Macy, but it’s that 5-10% that when it hits, it sometimes rocks me to my core. On some of those trips from the hospital by myself to get things from home, I simply cried for most of the drive. Some weeks it’s just 1 day that I even think about Down Syndrome. And some days it’s 5 minutes out of every hour that I’m thinking about it. It’s in that 5-10%, that I realize we are not “standing outside the fire” anymore. All along the way I’ve felt that the “burning” is decreasing and mostly due in part to Macy’s amazing Mother. The happiness, joy, excitement, love and sheer optimism that Sherri shows inspires me. Whether it’s her latest photo shoot with the girls, a blog update, hearing her recaps of Super Mom’s coffee’s, or just watching her smile and enjoy the company of Macy, it amazes me at the amount of love that she has to share. I know she does have her “burning” times too, and I can only hope that I can be as much of an inspiration to her as she’s been to me.

I was recently reminded that one of, if not, my favorite song growing up, has a video that was actually produced as an anthem to special needs children and the obstacles that they will face in their life. I remembered this video growing up briefly, but had forgotten about it. Garth Brook’s Standing Outside the Fire video depicts a teenager with Down Syndrome who chooses to join the regular track team instead of the Special Olympics and documents the challenges he faces. God has an amazing way of providing strength in ways that you would never notice. I’ve loved this song my whole life and all along it has been preparing me for things yet to come. It’s amazing how many times I’ve felt myself standing outside the fire and been too scared to get burned. Yet now, this “Fire” that some would perceive as being in front of us, somehow doesn’t look like a fire to me, but just the warmth of the love we have felt and our life and the things we have yet to look forward to. Sherri & Macy have taught me so much, the first being to not be afraid to get burned. “Life is not tried, it is merely survived, If you're standing outside the fire.”

As I constantly think back to that night, the pain becomes more beautiful everytime I go there. That's right, BEAUTIFUL. If I could go through that evening again--even the rawest, most painful parts--I would, in a heartbeat. It truly changed me, allowed me to stand in the fire and, in the end, we get Macy. How cool. Thank you, Sherri. Macy is the luckiest girl in the world to have you as a Mommy. Happy Mother’s Day! I love you.

Daddy

Impromptu visits

Yesterday morning McKenzie, Macy and I were up bright and early, got the house cleaned up, dressed, out the door, in the car and headed for Mommy & Me. We pull up to the church parking lot only to find that no one was there! :-( Bummer! I was dissapointed...We were all dressed up with nowhere to go. The babes butts are clean & their bellies are full, I am surely not going to just go back home. Half the battle is just getting out of the house & in the car...Sooo, we decided to pay daddy an impromptu visit at his work. Kim had a great time parading Macy around the office and McKenzie had a blast running around and spinning on the twirlie office chairs. Oh my what fun! 20 minutes down, we still have the whole morning ahead of us...now what should we do??
hmmm...I know, let's call Casie and see what she, Sophie & Vollen are up to. Luckily they were just hanging out enjoying the beautiful day, so I said. Okay, we're comin' over, we'll see you in 10 minutes!

As you can see Macy was thrilled to see her buddy Vollen again!

He's checking her out. He notices that she has gotten SOO much bigger since the last time they played...whoa, what is your momma feeding you he wonders??

Sophie is so sweet and shares her bubbles with McKenzie...look at how excited Vollen is in the background. What a CUTIE!!

Eskimo Kisses :-)

bummer, I wish I would not have accidentally cut out Vollen's face in this shot...I can tell by his mouth that he probably has the sweetest little expression on his face...

Thanks Casie for letting us pop in on such short notice! The kiddos had a good time!

The girls say "cheers" over some fancy strawberry milk. McKenzie and Sophie share a few common bonds...first they were born at the same hospital only 3 days apart (they were checking in as we were checking out), they are both tall...and...they are both wonderful big sisters to very special siblings who happen to have that extra special chromosone. These girls are amazing and do not quite know yet the incredible journey that God has in store for them! He hand picked them to be Macy & Vollen's big sisters for a reason :-)

Discussing life..."It's rough being 2, everything will be much better once we are finally 3...Just a few more weeks and then we'll see!"