Life Changing (Part III)

Home. With a baby girl. Incredible.

From the moment we came home, our front door became a revolving one. It was always opening and closing, welcoming family and friends, showing off our little bundle of joy.

The first few weeks were quite a blur, as it is with most newborns. We welcomed anyone that wanted to visit for more reasons than just wanting to see them. We wanted to make sure people saw Keziah for themselves, as of course, so many were curious as news passed along about Keziah and her birthmark.  By doing this, we were hoping to prevent rumours. We didn't want it that by the end of the week, her birthmark went from her forehead all the way down to the tip of her toes!! You know how rumours go.

Being so busy with visitors the first few weeks was helpful also in the "waiting period". Although we had Keziah in our home, we still had to get through a month or so in which her birthparents still had an opportunity to change their minds. This time period ended September 4th, which was met with great relief and yet sadness and empathy for her birthparents.

And so our life really began as parents. After 11 years, it was quite the adjustment to say the least. And not only were we adjusting to finally having a baby of our own, we were also trying to adjust to having to take her out in public where she was stared at constantly. But despite those stares, we showed her off!! We were so proud of her and to have her! We felt quite strongly about presenting her as "normal" and so we took her everywhere with us, especially to church. It was very important to us that our church family could get as much exposure to her as possible to help them see past the birthmark and see Keziah for who she was. These people were Keziah's family of faith, and it was essential that she fit in, was accepted and loved by all who would be a part of her life. Let's just say it didn't take long at all.........people fell in love with her pretty quickly.

We also started the process of getting in to meet with a plastic surgeon, one in MacMaster and one in Sick Kids. At the time, the surgeon in Mac had never seen this before, and so that made the decision easy: we are going to Sick Kids, to the surgeon that has dealt with this for 30 years! The referrals were sent in with some pictures right away from our family doctor, and we saw the surgeons for the first time when she was 9 months old.

Below you can see pretty well the size of her birthmark. You can also see that by her eyebrow, it is the fleshiest, lightening a bit above and then dark again. When she was born, she had gorgeous black hair everywhere but on the birthmark. It didn't take long though for the hair to grow on it, and boy, once it started to grow, did it every grow fast! And thick!

 

our gorgeous girl, sleeping outside so peacefully 

 loving daddy's whiskers!

telling daddy all her problems :o)

Around 2-3 months of age, I did have Keziah wear a lot of headbands and hats. The reason for this is not only because it looked so cute on her, I also knew it was imperatif for her to always wear a hat in the sun. I knew if I tried to put a hat on her when she was 9 months old, she would just try to take it off, so I figured I would start early and make it something as normal as putting on her shirt. It worked because to this day it has never been a problem keeping a hat on her!

 

 

When she was about 4-5 months old, she started to lose her hair everywhere, except for on her birthmark! Oh, she looked quite funny! By this time the hair on her birthmark was long and had a mind of its own! This is when she also had her first haircut (yes, I kept the hair :o)

 

But right from the get-go, it was not only her birthmark that captured attention, it was these eyes of hers!

 

After a few haircuts, the hair on her birthmark became quite nice and wavy. Then we had to deal with the hair on the rest of her head, which stood staight up as it came in!

 

We could finally tame the hair in pigtails, but as the hair grew, it became quite obvious that one pigtail was quite a bit thicker than the other, thanks to that birthmark hair. Oh well.....it added character :o)

Every morning, I always made sure I had the camera ready as I went to get her out of bed. I must say, I think she would win any "Best Bed Head" contest, hands down! :o)

 

 

And that is why her hair is done in some fancy do all. the. time. The hair on her birthmark has gone from soft and wavy to very coarse and kinky and will not lay flat. Oh well, it's a good thing I love to do hair! And she looks so cute with it always done nicely. She was born with quite the cowlick on the right side, which worked in her favour. Now that her skin was stretched, that cowlick you see below was moved over and is  now dead center.

(happy two year old!)

(yup....LOTS of hair!!)

So, there you have it. A few posts from when the journey began. I know I am working a bit backwards, but I thought I'd use these three posts to bring you up to present time. Although there were many tough days in the past 3 years, we wouldn't change anything. We've been so richly blessed. And every day we are so, so thankful for this goofus that was brought into our lives, even though it meant taking home a baby that didn't look "perfect". But you know what? She was perfect.......perfect for us.

Oh, and so is he, our handsome blue-eyed little man!!! But a post on him in a week or so :o)

Life Changing (Part Deux)

So where was I? Oh yes, we had just met our 7 lb 5 oz daughter.  Keziah was born on a Thursday and we saw her the next day, on Friday.

Due to the unique situation of her birth (i.e. plan of adoption), Kez had an MRI done before she was 24 hours old! This was to make sure the birthmark was just skin deep and not going into her brain (which can happen with this type of birthmark). The results came in quickly and there was relief all around that it was only on the surface of her skin.

After meeting Keziah, we left the hospital for a few hours, to allow her birth family some time with Keziah as well as for us to digest everything that was going on. So far we had not called our family or friends about the news of Kez being born. We were still waiting for a dermatologist to have a look at Keziah. We wanted to know exactly what we were dealing with before we called anyone, that way we could answer questions the best we could. But those hours on our own were so surreal! No one knew where we were! No one knew that our little girl was born! No one knew what we were going through.

We went back to the hotel where we were staying and spent some time on the computer, researching congenital meloncytic nevus, pictures of it, what the options are for removal, how to care for it etc. We also had some time to sit, think, cry and pray.

The next morning was Saturday. Keziah's birth grandmother is a nurse and had inside connections with a very well respected dermatologist and so he gave up some of his personal time to come in and check Keziah out. To this day we are so appreciative of the role played by Keziah's birth grandmother, as well as this derm. He wrote up a report, gave the birthmark a name, what can be done about it and so started Keziah's medical file.

Once we knew exactly what was ahead of us, we could share our news with our family and friends. 2.5 hours later (it took so long to call everyone, just because each call was about 15 minutes long, explaining everything), we were wiped. My mom and dad came down to meet Keziah as well as to be with us. By this time we were really starting to feel emotionally exhausted!

That night, after a very good long hard cry, it was like I turned a corner. Up until then my cries were to God, but crying out, "Why, Lord? Why us? Why our daughter? What is going on? Why are we presented the option of leaving her behind? What does that mean? What is Your plan? What is life going to be like for her? Will she be ostracized? Teased? Bullied? Why will she have so much to carry on her shoulders? Isn't the fact that she is adopted enough for her to deal with, and now this, a physical imperfection? Why does she have to grow up in a world where perfection, espcially outwardly, has such an emphasis? What do You want us to do with all this? How are we going to handle it?" and so on. So many questions, so many tears.

And then it clicked. It clicked in my heart and mind: Michelle, if you believe that God is in control of everything, then you know that He is the one who chose Keziah for us and us for Keziah. So why fear??! Why lose confidence? Why think you can't do it? Besides, if God has the confidence that we can do this, then shouldn't we also?? And why should I think we need to handle all this alone? And if we can't handle it, isn't that okay, because then we let go and let Him do the handling? And if we had the answers to all our questions, why would we need faith?? In the Oprah world, this is known as an "ah-ha" moment. In the walk of faith, it is known as a "Spirit" moment. God's presence was ever so near us that night while we began to see through eyes of faith and trust, rather than through eyes that were covered with film of worry.

And so we woke up the next morning, Sunday, with renewed strength, courage and trust, and we took our darling home with us. I know I've shared a lot so far and don't mind to share these moments; however, the last hours we spent with Keziah and her birth family will remain under wraps and private. That, my readers, is just too personal to share. Some things are best kept this way for us to ponder and reflect on the intimacy and emotion that was involved. Besides, no words are out there to describe those moments anyway. I knew you would understand :o)

(at last, snug in bed, not having a clue all the drama she has already "caused" in just the 3 days of her life :o)

I know so far this "Life Changing" series (yes, there is at least one more...with more pictures and less words) has been quite wordy and detailed. Although all this happened 3 years ago, the blog is titled: Keziah's journey. And so dealing with her birth and the surprise of such a birthmark is part of it. I also know there are readers who are reading this because they've just received a child with CMN (or something they weren't expecting at birth). I want them to know they aren't alone. There is a network of people out there to help and support. And not only are there people, there is God, the One who is all loving, just, merciful and full of grace. Trust in Him. Have faith in His ways. Know that He knows what He is doing. And I write this as a reminder for myself as well. You'd think I'd learn by now but no. I am still "in training".

Life Changing (Part One)

Now that the busyness of celebrating a 3rd birthday with a very happy girl has passed (although, the balloons and streamers are still up so she still thinks it's her birthday), we've had some time to reflect and bring up some "remember when....." moments.

When Keziah was born, it was life altering, bringing a whole new dimension to our lives. She was not only born with this birthmark, a congenital meloncytic nevus we had never seen or heard before, we were also riding the adoption roller coaster. There were moments in those first few days that felt so surreal. The amount of emotions that were inside (and sometimes out) was extensive and manifold. When we think of those first days, tears spring quickly to my eyes as the fears, the unknowns, the love, the heart-pain, the questions, the anxiety, the worries, the trepidations, and the awe all come back forcfully, like it was just yesterday. And know that these feelings weren't only being felt by us, but by all those involved, especially Keziah's birth family.

Allow me to take you through some of those early days, as well as the days and months to follow as we adjusted not only to a new baby after 11 years of just the two of us, but also to a baby with a physical difference, an outward "flaw", as some have stated. And you guessed it, I'll use pictures to help the story along (yes, I had my camera with me all the time back then, too. Some people can't leave their homes without their cell phone. I, on the other hand, have no idea where my phone is and don't really care, but my camera??! Now that's another story :o):

These two pictures above are officially the last ones of us as a family of two. Now that we have kids, I can't remember the last time we've had a picture of just the two of us!! Oh well, just one of the many, many adjustments made after having kids.

We were chosen a number of months before Keziah was born. We did keep it a secret for awhile, as we knew there was so much time yet for her birth family to change their minds, but once the due date got closer, we did share our wonderful news, which was met with disbelief and surprise. You see, we were on the waiting list for all of 6 weeks before we chosen. Yes, you read that right! 6 weeks!!  The one thing we did keep a secret was the gender of the baby.

The week Keziah was due, we went camping. We knew her birth mother was going to be induced but we needed to keep busy to pass the time away. We managed to get 4 camping days in and then she was born. Don't ask me a thing of what we did while camping. I don't remember. The only thing I do remember is that the day her birth mother was induced, we checked our cell phone 379 times. Is she born yet???

We received a call just after 5: she is born!!!!!!! We were ecstatic!! Her birth mother called to share the news with us. She did right away tell us that Keziah was born with a birth mark on her forehead. I right away assumed it was a strawberry, thinking "what's the big deal? Lots of kids have those.". When I asked if it was red, there was a long quiet pause on the other end. The pause ended with the words "ummm, no. It's black.". Oh, okay, we thought. Still no big deal, right? I brushed it off, focusing on the fact that she was born healthy, strong and everything looks good, including the fact that the birth family was still going to go through with the initial plan of adoption.

We hung up the phone, threw packed our camping gear in the car, shared our exciting news with very close friends of ours who were camping with us and flew drove carefully home. We were up in Huntsville and Keziah was 7 hours away!!! It was too far to go that night, so we made it home, "slept" in our bed and then packed up a few clothes and made the 3.5 hour trek down to where Keziah was.

The whole time "she has a black birth mark" was playing in our heads. What does that mean? How big is it? Black?? Where exactly is it? What does this mean for us?

By the time we arrived at the hospital, the social worker involved with the adoption was waiting for us. She did not want us to go up and see Keziah until we had time to think about what was all going on, meaning, what was all involved if we were to continue to adopt Keziah. I touched upon this on the very first post here.

Once we made it clear to her that we will continue the adoption of Keziah, we went up to meet her. Talk about nerves!!!!

We walked into the room and I hear behind me "OH!!!! She is so CUTE!". This, my friends, was the first thing my husband said when he laid eyes on his soon to be daughter. What's surprising about that statement is not WHAT he said, but that HE said it. This is coming from the guy that thinks all newborns look alike!! :o) And so began the "I've got my daddy around my pinkie!". It sure didn't take long, eh?!

Here we are, meeting her for the first time:

I will be honest, he was smitten before I was. Don't get me wrong here. I loved her right away. But it did take me a bit to see past her birth mark. I feel ashamed now as I write this, that I struggled with it. But I told you before I didn't want my blog to be false. And so I need to tell the truth: it was hard. Very hard. I wish now it wasn't, that I could have just embraced it all without a question, doubt or fear of how I, as her mother, was going to handle all this. But it was all there.

Keziah must have sensed my fears and worries because I will never forget the moment when I was holding her and she took hold of my thumb, as if to say "Don't worry, mom. Remember your wedding text? Remember Who is in control? Everything will work out and we will do this together with Him as our Guide."

I'll leave it at that for now. At this point of the story, no one in our families know where we are, that Keziah was born, what's all going on. The only ones that know are our friends that were camping with us. But more of the story later. Time to wake up some kids so that they'll go back to bed on time tonight. If they do, then I shall continue. If not, you might have to wait a day or two......

Three??

We woke up this morning to a little girl standing right beside our bed whispering, "is it my birthday now?"  Yes, darling. It's your birthday today!!!

Happy 3rd Birthday, my girl!!!!!

This day brings up a lot of emotions for us as we re-live the day she was born and the days following.  I will write a post about that later, but onto celebrating the 3 years God has allowed us to be with this gift from Him. We can't praise Him enough for this brown-eyed blessing!

Say What?

Congenital Melanocytic Nevus. Now, that's a mouthful! "Freckle" is so much easier to say :o) We are all familiar with a freckle; some of us have lots of them and you wear them with pride, or for others it's a matter of getting used to them on your skin. Those with freckles are not usually born with them; they appear on the skin over time as the individual grows. Freckles also are more pronounced when basking in the sun, thinking here of the very cute smattering of freckles on the nose and cheeks on little kids after the summer holidays. So we know about freckles.

But then, here comes along a darling little girl and people say "what is THAT on her face?" A congenital melanocytic nevus, we reply (sometimes). A what??! Let me try to explain what a CMN is and answer some questions that I know you may have. And if I do not answer your question, don't hesitate to ask it in the comments and I will do my best to answer it. I'd rather these questions asked of us without little ears around as she is proving more and more to be a sponge.

So here goes:
Congenital - means present at birth or within the first few months

Melanocytic - means that it is pigment-based; melanin is found in pigment, which is all through the skin; in Keziah's case, some of the melanin collected together, which resulted in a mole

Nevus - birthmark

Some CMN are small, large, or giant. What Keziah has is considered 'large'. Hers covers a part of her cheek, forehead and goes to the back of her head, all on her left side. Small CMN are common and you may even have one or two. When it gets to be large, it is more rare. So rare that many of us have never seen it before. We've seen port wine stains and other red birthmarks that are known as strawberries. But a large CMN is rare, happening in approx. 1 out of every 20,000 births (we were told 1 out of 500,000 but in research we also found 1/20,000).

A CMN is NOT hereditary or based on race, although, we do joke, saying that it shows Keziah's race in the fact that she is 1/8 African American......it just got all put in one spot :o) (sometimes you just need to take a lightheartedness view when dealing with things). A CMN forms usually within the first 8-12 weeks of gestation. It is not visible on a regular ultrasound. I have her ultrasound pictures and in no way can you see it. Maybe on a 3D ultrasound, I am not sure, but definitely not on a regular one. A CMN can appear anywhere on the skin (if you so choose to do so, you can always look it up on google images. Just be prepared and don't have little ones around as some pictures are pretty graphic); it does not matter the gender either.

A nevus is much more complicated than it just being a darker colour. If you look close at Kez, you will see hair growing on it, and tonnes of it. Actually, if I let it grow, it'll cover the whole part on her face with such dark coarse hair, that it'll look like a rug. The hair on her head that comes out of the nevus is also very coarse and has a mind of its own; which is why she often has braids or fancy hair-dos in, just to keep the hair on the left side contained.

(See? Like I said, hard to tame, but oh so hilarious!)


(here you can see the ponytails are different. To this day, the hair on her left is a LOT thicker than everywhere else. But nevermind the hair, check out the sparkle in those eyes!!)

As for the hair on her face, I cut it with blunt scissors. I've had to do this since her birth. It was all going well until about 2 months ago. The last two months it has not been fun. She fights me, crying, and screaming. Nathan has to help hold her down. Like I said, not fun. Before she reacted this way, I was cutting it every 3 days (it grows SO fast); now I do it once a week.

Another way that it is different than just the colour is that underneath the skin of the freckle, there is no fat, which means no padding. So when she bonks her freckle, it can hurt! Keziah's nevus is thin except by her eyebrow. There, it is bumpy with small folds of skin.

When Keziah was born, she had an MRI to make sure the birthmark was just skin deep and did not go into the brain or spinal chord, as that can sometimes be the case. Thankfully, it was only on the skin. Some people who have CMN also have what is known as 'satelites'. These are small CMN that are all over the body. Keziah also does not have this.

When we say/read the word 'melanocytic', we are reminded of the skin cancer melanoma. If you have moles, you will know the precautions that are needed to care for, watch and the importance of bringing any changes to them to your doctor, which may result in removal of the moles. This is all done because of melanoma. Those who have CMN, have a slight higher risk in getting melanoma. Those who have it on their torsos are at a higher risk than those who have it on their heads/faces (not sure why). Because Keziah has it on her face and head there is a 2%-5% higher risk of her getting melanoma later in life.

And so we watch her freckle for any changes. There have been a few. One change is that if you know her now, you will know that the CMN goes around her eye and onto her cheek. If you look at her newborn pictures, it is very, very faint, whereas now it is a lot darker. The part that is in her hair and behind her ears has lightened up a fair bit, to almost a reddish/brown colour.

After having consulted with a number of doctors, surgeons and dermatologists, we have come to the conclusion that to remove it (most of it) needs to be done. Next week, before she goes in, I'll write up a post as to exactly what the plan is and how they will go about removing it.

And for you dear readers, be prepared for a medical test on all this jargon a week after next. :o)

It all started 2.5 years ago......

As most of you know, we were blessed through adoption with a beautiful baby girl, whom we have named Keziah Kristina. When she was born, we were not allowed to see her at first until we knew what was ahead of us. You see, Keziah was born with a congenital melanocytic nevus. It was considered large and it was on her head, forehead and cheek. The social workers wanted us to be fully aware of what that all meant if we were to continue on with adopting her. They talked with us, saying that if we were to go ahead with adopting Keziah, are we prepared for the stares and comments from others, the many surgeries that are in her future, her self-esteem issues that will come up with this. Are we ready to take home a "not so perfect" child? Are we ready to deal with a little girl who does not look like our "dream" daughter? Yes, these questions were posed to us. And you say "how could they?". But they had to, as they were not only keeping our interests at heart, but also little Keziah's. For if she were to be adopted into a home with a family that was embarrassed of her, that would not be healthy at all.

After listening to the social workers, we were still determined to see her and take her home as our daughter. We knew she was created for us, and we knew Who created her. We rested in the comfort knowing that God will continue to be with us, holding us every step of the way.

And now we are here, 2.5 years later. Has it all been peaches and fun? No. Have we had to deal with comments and stares? Oh yes. Did I handle it all well? No. Was I sad for my little girl? Yes, at times. Do I mind questions about her birthmark? Not all, depending on the tone of the question. Thankfully to this day, Keziah has no clue that others look at her in a strange way. When she was about 27 months old, she was looking in the mirror, and I pointed her birthmark out to her. She stared in the mirror as if it was the very first time she ever saw it! Since that day we call it her freckle. "Daddy, do you like my freckle?" she asked a few months ago :o)

In November 2011 we met with Dr. Zucker at Toronto Sick Kids. After seeing a doctor at MacMaster Hospital, a doctor who had never seen this type of birthmark before, we were greatly relieved to have met Dr. Zucker. Dr. Zucker is known for his work dealing with the type of birthmark Keziah has. In November, he gave us an outline as to what he will do. It was up to us WHEN we wanted to start with it. He was prepared to do it now or when she was older. We decided now is best.

And so, her surgery date has been set. It is scheduled for April 12, 2012. It was April 10th, but has been bumped to the 12th. The surgery will take about 4 hours, in which Dr. Zucker hopes to insert a tissue expander in her forehead and in her cheek. Keziah will be staying in the hospital for 3 or 4 days after. Then we will be commuting to Toronto every week to have these tissue expanders filled with saline, to stretch the skin. Once it is stretched enough (about 3 months later), she'll go in for a big surgery in which they'll take the expanders out, cut off a good chunk of her freckle and pull the stretched skin over where the birthmark was. Because her birthmark is large, she'll need some skin grafts after that yet. But let's just focus on one thing at a time.