Miracle Maely

                   December 14, 2016

My sweet little boy,

You're a big brother! Can you believe it? Your little sister's name is Maely Grace Anderson and she was born this past Friday, on December 9th at 12:34 PM. Oh Mr. T, she was the prettiest baby girl I have ever seen! Your dad and I think she had at least as much hair, if not more, than you did at birth- and she was born 4 weeks earlier than you! It was feather soft, and so dark and thick. Her lips were absolutely perfect with the cutest cupid's arrow above her top lip, right under her adorable, little nose. And her cheeks! They were super squishy and oh so round- perfect for smooching. They looked just like yours when you were born :) She was everything and more we could have dreamed she'd be!

But Maely couldn't come home with us, Trevor. Your dad and I knew she wouldn't be able to, and we've been so sad about it for a long time. We've known since September that something was wrong with Maely. I had to see a special doctor who knows more about unhealthy babies when she was still in mommy's tummy (20 weeks along). The doctor only had bad news for me; after looking at Maely he explained a big list of things that were wrong with her. I asked the doctor what this meant for Maely's birth and the rest of her life; he looked at me and said that we'd be lucky if she was born alive, and if she was, she'd die very soon after birth. I went home and cried and cried. I knew you could tell something was wrong by the way you looked at me as I sobbed. My whole world was crashing down, as were my hopes and dreams for the relationship you were supposed to have with your little sister.

At another appointment about a month later, we learned that Maely's most serious problems were that she had a Congenital Diaphragmatic Hernia (her diaphragm didn't fully develop and left a space for her liver to float up into her chest cavity and pushed her heart out of place), a Septated Cystic Hygroma (a group of cysts in the back of the neck) and Unilateral Renal Agenesis (she only had a right kidney, and it wasn't formed correctly). Finding just one of those birth defects is pretty fatal, so her outlook was hopeless.

I kept praying and begging for a miracle. I didn't know if it was part of Heavenly Father's plan for our family for her to live; but I still hoped for the impossible. Then at an appointment the day before Thanksgiving, an ultrasound showed that Maely had little to no amniotic fluid left around her. This was because the one kidney she did have was done; it had overworked itself trying to do the work of two healthy, functioning kidneys. I know these medical terms will always be hard for you to understand, Trevor; I have a hard time understanding them myself. But this wasn't good news and meant that Maely was even more likely to die in mommy's tummy than before.

Your dad and I continued to try and enjoy every second we had as a family of 4. We did a lot of things while I was still pregnant with Maely that we would have wanted to do if she could have grown up with you. We never knew when her heart would beat for the last time, so we tried to cherish the time we had with her. We still prayed and hoped for a miracle- but a different one than before. This time we asked God to please, please, let Maely be born alive. We now understood and accepted the fact that it was not His will for her to stay on earth, but prayed that we could have 2 minutes with her. We also asked that she not feel any pain or suffering in the few minutes we hoped to have with her. It seemed too much to ask for, for her to be able to meet you, but that was our biggest hope. That was our new miracle.

And then 5 days ago, she came into the world. I had a c-section and prayed Maely's already fragile body would handle it well, that there would be a better chance of her making it for a minute or two. And guess what, Trev? Maely WAS alive! She even opened an eye when your dad held her right after she came out of my tummy. Your pediatrician was there to make sure she didn't show any sign of distress and to keep checking her heartbeat. Each time he listened she was still with us. And then it got even better because you got to meet her a few minutes later! It was such a special, sacred, and miraculous moment. Yes, we got our miracles! I know you knew that she was your baby. You were so sweet and curious! I loved watching my little boy touch my baby girl. I will never forget it.

Then after one precious hour and six minutes Maely had to go. I know that your grandpa Mick (my dad) was there to take her home to our Heavenly Father after she had fulfilled her purpose on earth. We had her for SO much longer than we ever could have imagined was possible. She was a fighter, just like you are. She held on for such a long time and gave us the sweetest memory we've ever made as a family. Ever since I found out I was having a girl, I started to dream about how fun it would be to watch you grow up as Maely's protector and always be watching out for her. But now she'll be watching over you from heaven, and sending protection from above. And let me tell you Trevor, it doesn't get any more special than that.

I have no idea why your dad and I got so lucky to have not just one, but two perfect kids, with the most special of spirits. I know that your Father in Heaven has a plan for you, and it included you coming to this earth in a body with Down Syndrome. I know that you will accomplish things that the rest of us regular folk will never be able to! And I know that Maely's spirit was so righteous and perfect that she only had to come to earth for that short time. Imperfect bodies with perfect spirits; that what you have and she was given for her short time on earth.

Your dad and I have always believed that families can be together forever. We know we'll be hanging on to your coattails to have a chance at eternal salvation, "the greatest of all the gifts of God." But we need you and your perfect self now more than ever to get back to God, our Savior Jesus Christ and Maely- heaven knows she's already there! Our biggest goal really is to be with you forever, Mr. T! Forever with Trevor and Miracle Maely.

11/25/16 playing with Maely <3

Miracle Maely with a heartbeat!

Meeting little sister for the first and last time

A few hours after she passed, but still one of mom's favorite pictures

Right before we let her body go. "See you later, Maely! I love you!"  

To learn a little bit more about The Plan of Salvation, visit  https://www.mormon.org/beliefs/plan-of-salvation :)

Mother's Day

I've always loved Mother's Day. Even when I was a little I looked forward to giving my mom that little craft I'd made at school or a church activity. As I got older I loved picking out something for my mom. These days I can spend as hour picking out the perfect card and writing a novel in it for her- she assures me she loves it though haha :)

Now that I'm a mom, the day is even more special to me. Last year I took Trevor to church for the first time ever on Mother's Day. I don't remember feeling more proud in my whole life than I did that day, as I looked down at his perfect face while people were speaking about moms. It was a special moment for me, wondering how I'd won the jackpot and scoring this little kid! I look back at pictures from that day and can't believe he was ever that small. It boggles my mind! See pic below for proof that he was once this small haha!

Mother's Day 2015

This Mother's Day, Trevor is a LOT bigger! He's such a joy and still the easiest little kid. It's been so much fun watching him progress, even if it's been at a MUCH slower pace than I'd like. He is really so perfect and I KNOW he was meant to me mine. A couple thoughts have been swirling around my mind this morning about being Trevor's mom and about my birth mom, so I thought I'd get them in the books :) 

I look back throughout my life and realize that I was being prepared for a long time to have a child with special needs; my whole family, really, has been being prepared for a long time. 

My dad was quadriplegic and had been for many years, when he met my mom. They dated and got married. And thank goodness for that because I wouldn't be here! My mom has obviously never been afraid of a challenge- she married my dad knowing full well she'd be his primary care-taker. That's a big deal and would be daunting to anyone. But she loved him and that's all there was to it. So she lifted him in and out of bed morning and night, bathed him, dressed him, shaved him, fed him, loaded him into his wheel chair, into the van, and  so so much more, She did this for many years before he passed when my sister was just 5, my twin and I just 18 months old. she has always had a love for others who are sick or otherwise disabled. Before she even met my dad, she spent years working at the hospital caring for patients with Cystic Fibrosis (or CF). Sadly, hardly any of those friends and patients of hers are still alive, but for as long as I can remember she has always spoken with so much love as she told us about them and her experiences. 

A few houses up from us, there is a girl with Cerebral Palsy. She and her family moved into the area when I was i elementary school and is just a few years younger than me. At first I didn't know what to think of her or act around her; she could not not speak, eat on her own. I was definitely unsure of it all because I'd never been exposed to that before. But my mom taught me, through her words and actions, to just love her, and try to treat her as I would any other friend. My mom made sure she was included in our all our church activities and took time to visit with her. She STILL does, 10+  years later.

In our church, there is an organization called Special Needs Mutual. It's a place where teens with disabilities (a wide array of them) can go to interact with peers, both typical and disabled. My twin brother had the opportunity to participate in this as a "special needs buddy" when we were in high school. He loved the time he spent with these kids a few hours a week, He would always come home with some great stories about what had happened that night! One year, the youth in our ward were asked to help with this special needs mutual prom. What an AMAZING opportunity that was! It was so good for all of us to get to be around these really special kids.  

Around this same time, I was in my junior year of high school when I was selected to go to the special needs seminary class. So instead of going to class with my typical peers, I got to go into the class that had 4 or 5 5 kids with special needs, a couple with Down Syndrome and a couple with other things, I was assigned to be Cameron's buddy :) I LOVED Cam. He was like my best friend. He got my cell number from a friend and would call me almost every day hahaha It was great and always so funny. He was such a joy to be around and I never left that class without a smile! I go to do this for a whole year and I will never forget it. Being surrounded by these kids, learning about Christ's teachings to love one another, was such a testimony builder. I'm so grateful for that year!

Cam and I at the Special Needs Mutual prom. He had just shaved off his eyebrows haha!

When I was 14, my brother, mom, and I went to El Salvador for my brother's Eagle Scout project. For those of you who don't know, McKay and I were adopted from El Salvador when we were 11 months old. He decided to collect items and money for the orphanage we'd been in and wanted to distribute them for his project. We were able to collect so much that once in El Salvador, we got to deliver some of those item to a different orphanage. This one was far away from the big one in the city, where McKay and I had been. This orphanage was way up in the mountains, secluded from many people. It wasn't until we got there that we realized this orphanage was a place where children with all types of special needs and disabilities were living. It was absolutely heart breaking. I will never ever forget walking around and seeing all these little face, perfect souls in imperfect bodies, who were alone. They deserved to be loved. Many of these kids had Down Syndrome. Many had just physical disabilities. I left there that day with a heavy heart, saddened that these kids would most likely never know what it was like to be loved by a family. 

Little things have continued to happen throughout my life that have gotten me ready for Trevor. the same group of Special Needs teenagers sang during church once; the song was called "In This Very Room' and is about loving everyone around you. When I got pregnant and found out the baby might have Down Syndrome, I seemed to see individuals with DS everywhere! There was that cute little boy with his mom and little brother at Ikea in front of me waiting to get a Cinnamon roll (because when you're at Ikea you OBVIOUSLY don't leave without one!); when I was volunteering at Primary Children's Hospital I had the opportunity to help a mom and her daughter find a specialists's office for an appointment. Then there were videos someone would share on facebook (Dog befriends little boy with Down Syndrome) and an article about a Dad who refused to give up newborn son with Down Syndrome somewhere in Europe. I definitely didn't realize it at the time, but God was softening my heart to the reality of me being a "special needs mom."

The day we found out Trevor's enlarged ventricles in his brain pointed to a 4% chance of him having DS was so somber. That night, I remember telling my husband that "I could handle ventriculomegaly and maybe hydrocephalus, but NOT Down Syndrome." Man, was I wrong.

Being Trevor's mom is truly a dream come true! I cannot imagine him being any different than he is. Because DS, I have met so many other amazing mamas of children with special needs, Many of them I follow on instagram. Last night as I was scrolling through my feed, I saw a quite from a mom of 3 boys who all have DS (she adopted at least one of them). The quote said, "A child born to another woman calls me mom. The magnitude of that tragedy and the depth of that privilege are not lost on me." She continued on about the experience she had with one of her sons' birth mother. I'll have to ask her if I can post it word for word and update later. Tears ran down my face as she described seeing this woman, who was too ashamed to see her disabled son in the orphanage, hold her baby before he left that country forever. She went to the airport with the adoptive family, crying and cuddling him the whole way, not letting go until the very last minute at security. Amber (the adoptive mom writing the post) said that it left such an impression on her, and that because of that experience she'll always be incredibly defensive of birth mothers, but also grateful and indebted to them. 

This Mother's Day I've been thinking a lot about my birth mom. What was she thinking when her infant twins, just days old, left her forever? I know the reasons behind why she let us go... she had no choice. But what was she feeling? Did she wonder if she'd ever see us again? Did she hope to someday have contact? Does she think about us often? Do her other children make Mother's Day special for her? We know very little about my birth mom. Her name is Emma Guzman; we have one very old picture of her that shows her shotr stature, brown skin and short, dark hair; the last we knew she was living in Ciudad Arce, a small little place right between San Salvador and Santa Ana; she already had other kids before getting pregnant with my twin and me; she didn't have any way to feed another baby (she didn't know she was having twins until she was in labor). And that's about it. But last night and all day today, I've thought and thought about her. I am so grateful for her! So grateful that she had the courage (because I strongly believe that no birth mom who places her child for adoption can do so without courage, no matter the circumstances or reasons behind not being able to keep the baby) she had to do what she knew was best for my twin and me. I hope and pray that one day I'll meet her, and be able to tell her hoe thankful I am for her (but I better practice my Spanish first!). 

Nothing in life is coincidence. I know, without a shadow of doubt, that God has a specific plan for each and every one of us. I know I was meant to be born to Emma, but adopted by my incredible parents in the U.S. and raised by a mom who embodies all that charity is, and has it for everyone around her. She has more faith than anyone I've ever known. With that love and faith, she's showed me that we just have to trust in God that everything will work out. Without her instilling that in me, I'd have had a much harder time with Trevor's diagnosis.  Sure there are days when I feel like it isn't fair that Trevor has to work so much harder than other little ones his same age to do simple things they master so quickly. There are days when I wonder how on earth I'm gonna keep this up for 40, 50+ more years. How will I live out these other dreams I still have? But then I remember that being a mom has always been my biggest goal and dream! And Trevor made it come come true. 

Thank goodness for moms, right?! In this cute video about moms I watched today, it said "Life doesn't come with a manual, it come with a mom." Thank Heaven for that! Not let's just hope I can be half as good as those moms who influence me daily :)

Holland

Just a day or two after having Trevor, my mom was visiting at the hospital. She pulled some papers out of her purse and handed them to me, saying that she'd remembered this story and thought I should read it; it was called "Welcome to Holland."

This little story is the thing I was talking about in my last post that I purposely omitted; it is so special to me that I thought it deserved it's own blog post :) This literary treasure is loved by so many people who care for someone with special needs. I think it pretty clearly describes how we feel upon learning that things will be different than we imagined. The author, Emily Perl Kingsley, actually wrote this essay in 1987, about her son, who was born with Down Syndrome. How I wish I had known about this on December 1, 2014 when we were told about the 4% chance! But I am so grateful I have it now :) I still read it every so often and probably will for the rest of my life.

WELCOME TO HOLLAND
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

"When you're going to have a baby, it's like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ...about Holland."

We have the cutest tour guide for our adventures in Holland! And we feel pretty darn lucky to be tourists because it really is beautiful here!