Enough

You - yes YOU - Mom, Mommy, Momma, Mother.

You are enough.

I see you, all of you. From new mothers to seasoned veterans; working moms to stay at home moms; single to married; every culture, creed, race, and religion.

I see you. And I want you to know that you are enough.

You, who has spent countless hours caring for sick children, kissing scraped knees, answering an endless barrage of questions and cleaning unknown substances off every surface in your house.

You are enough.

Too often we are made to feel inadequate, as if the world is against us and nothing we do will ever be sufficient. But I want every mother to know that you are enough. The effort that you put in on a daily basis is enough.

We are all doing our best in the most difficult, demanding, and rewarding job on the planet and it can be overwhelming at times. Yet, when we should be joining hands and encouraging one another, too often we're left feeling isolated and judged.

So, let's make a pact - here and now - to not place judgement on one another. To take a moment and understand that although we are all on the same journey, none of us are walking the same path.

Motherhood is a gift. It's an opportunity to experience a degree of selflessness unknown to anyone who hasn't traveled the road. And that's how we should view it. A gift.

We should not take for granted our blessings. They are all unique in themselves, but they are all blessings in the same.

So rejoice in the children you have and the position you hold, encourage those around you to do the same, and take a moment to allow yourself forgiveness for the inadequacies you perceive.

Because you are enough.

Blessings

Time is flying. Summer has taken us all out of our routines and thrown us for a loop. It is has been wonderful, exciting, exhausting, and a bit overwhelming to say the least. So, as we wrap up the end of the season this weekend, I'm in some ways sad to see it go, but also looking forward to welcoming routines, normalcy, and all of the comforts that come with the return of fall. 

I'm sure there are many of you that feel the same way. It's nice to enjoy a sense of freedom and spend time with family and friends during the summer, but it's also nice to dial it back a notch, wait for the cooler weather to move in, enjoy the colors and flavors of the fall, and reflect on all that we have to be thankful for. 

So, I've decided to embrace all of the blessings I have in my life this season. Blessings that have given me the opportunity to grow as a wife, mother, advocate, and human being. 

Attending the first Mowat-Wilson Syndrome Conference at the beginning of the summer really set the tone for what was to come. Before I left for the conference I was excited, but also very nervous. I was worried that I would be overwhelmed with emotion and that parts of the conference and meeting the other families would be difficult. But, I couldn't have been more wrong. It's impossible to put my experience into words. All I seem to be able to tell people is that it was awesome, because it really was. 

I found myself at a moment in time - the only moment, in fact, in the last two and a half years that I didn't feel out of place. I didn't feel like I needed to explain myself, my child, or my situation. Because we were "home". In a group of people from all over the world who understood, embraced, and supported one another without judgement. And that was amazing. 

So, as I count my blessings, I think first and foremost I want to say "Thank You" to our MWS Family. Thank you for your understanding, your friendship, your heart-warming words and embraces, and most of all, thank you for being you, loving your children, and encouraging those of us who are still relatively new to this journey. You may never know what you mean to my family and the ways in which you have inspired us, but you have and for that, I cannot thank you enough. 

Another blessing that I am counting is that of each of my children. Everyday they seem to grow faster and keep us busier than the day before. Each is so unique, yet so dependent on the others. I always knew that our family dynamic would be different than any I was familiar with, but I could never have prepared myself for how beautiful it is becoming.

I see the kids' personalities blooming as they grow. Cole is becoming the most incredible big brother. He is so gentle and caring with both Xander and Ella; helping and teaching and celebrating each of their new accomplishments as much, if not more, than I do. 

Xander has recently become Mr. Explorer. Whether his increased independence in feeding and play has been sparked by Ella taking over the "baby of the family" position or by his own curiosity, it is truly a joy to watch him crawl all over the bottom floor. No longer is he inhibited by the carpet to tile texture change - the house is his playground and he is more than comfortable taking off on his own to explore, only becoming upset when he gets himself stuck under chairs or tables and can't seem to figure a way out. 

And finally, Ella. Our newest addition that I can't imagine life without. She is bringing us all such joy that I get emotional just thinking of it. She is the constant sunshine that binds our family together and lets us grow as one. Her smile is infectious and she watches both of her brothers intently, learning from them at a speed that I couldn't have fathomed a few short months ago. 

So, I am thankful - thankful for each of my children and thankful that I am their mother and am privileged to share in their joys, accomplishments, and love. 

My final blessing that I'm counting tonight is my husband. He is our rock; maintaining focus and striving for the betterment of our family on a daily basis. All too often I find myself so caught up in my roll as a mother that I neglect my role as a wife. So, I would like to thank him for his patience and understanding as I strive to find more balance in my life and in this season of change. 

May you all find more balance, count your blessings, and be thankful for the priceless gifts you've been given.  

Slap in the Face

I believe there are times in life where God chooses to slap us across the face, wake us up, and remind us that all we take for granted isn't guaranteed. We need to be thankful for the gifts we're given. 

I had one of those moments this weekend in what can only be described as the most terrifying experience of my life. And what makes it that much harder to swallow is that it was the result of a few stupid mistakes on my part that almost cost me more than I can ever imagine. 

I've said this before, this blog is therapeutic for me. It enables me to process all of the feelings and emotions parenthood and life in general has to offer. I don't sugar coat things and I don't pretend to be the perfect parent. I know I'm far from it. But I share my journey with all of you in hopes that someone will find comfort in the fact that they aren't alone in this mess of a life. None of us are infallible and we need to understand and support one another in that reality. 

I've been struggling the last couple days with my "slap in the face" event. I've been emotionally exhausted, drained, but so thankful that I have my children to hug, love, and hold on to. I will be forever indebted to whoever was watching over us on Sunday. 

Many of you know that I have what could be called an adventurous spirit. I like to be outdoors, active, exploring new areas, and I don't like to be cooped up at home for any length of time. Well, last week I was on my own with the 3 kids, as happens quite often when you're a military wife. In light of that, I try to do things by myself or with friends, regardless of whether Nic is home or not. Because you can't plan your life part-time and I refuse continually cancel and post-pone things if the jet breaks unexpectedly or the trip is extended. For the sanity of my kids and myself, we try to live life as if daddy were here all the time and when he's not we usually don't change our plans. 

Well, after being stuck indoors most of last week, with Xander sick and afternoon temperatures in the 100s. I decided that on Sunday, enough was enough. With the forecast of 106* in Vacaville, I packed up the kids and headed to Berkeley. It's only an hour away and there is large park we've been meaning to explore that has a lake and a swim beach and the temps in Berkeley were only supposed to top out at 84*. It was going to be the perfect day. 

And the trip started that way too. The kids were great in the car on the way down. In fact, Xander and Ella both slept the whole ride and Cole kept me company with his entertaining questions and comments as always. Once we arrived at the park and found the lake, I unpacked the kids and all of our stuff for the beach and loaded up our double BOB stroller; which I always bring on outdoor adventures when I'm not too sure about the terrain because it holds up pretty well to most anything. 

So, I head for the beach with the kids and all of our stuff piled on the stroller. It was shortly after 10 and when we got down to the beach area, I realized it wasn't opening until 11 because the lifeguards and fire personnel were conducting some water training. No big deal, I tell Cole we're going to walk down the path along the lake and check the area out before we play on the beach. As we walk along the path we come to a bridge that leads to a dirt path continuing along the lake, so we take it. As we're walking on the dirt path, Cole walks down the fairly steep embankment to check out the water temperature. So I face the stroller to the lake for Xander and Ella to see the water as well. 

As Cole is at the edge of the water testing it out, I decide to take a picture. In that moment, which I have been replaying in my head a million times over, I have a lapse in judgement. To begin with, I don't have the stroller leash on my arm, that I always wear while running. Secondly, I don't lock the breaks. As I grab the camera and start messing with the settings, I see the stroller start to creep forward and by the time it registers what is going on, I try to grab the handle and it takes off. The embankment is about 5 feet long, steep packed dirt with large, sharp rocks sticking out here and there until the edge of the water. Once at the edge of the water, the lake is filled with the same large, sharp boulders lining the edges and bottom. 

The stroller that is just out of reach is rolling, quickly, toward the water - it was awful... that is the only word I have to describe the moment in which you see the inevitable happening and you have no way to stop it. 

As I run after it, I'm screaming "No". Just as the stroller approaches the water, the front wheel hits the line of large rocks at the edge of the lake and the back starts to come over the front and flip. I can't remember exactly what happened, but I grabbed it just as Ella and Xander entered the water and I tried to pull it up, but I was falling over the rocks and couldn't get stable on my feet to brace myself with enough leverage that I could flip it back, so I dove onto the rocks under the stroller. I was in the water, pushing the stroller up by the center bar with both kids soaked and screaming, dangling in their harnesses just above the water. I was screaming, frantically, for help. 

I will never forget the feeling of helplessness I had in that moment.

There were several people along the lake that came running to our aid. They helped pull the stroller off me and from the water.  A couple of them helped with the kids; watching Cole, holding Xander and calming him, while I held Ella. I was so distraught that I could barely catch my breath. It was awful.  

The lifeguards on the beach heard us and swam over to help and the firemen who were training came around the lake and checked out the kids, listening for water in their lungs. Now, as I look back, I am so thankful for everyone who was there. For the people who's names I will never know that helped calm all of my children and myself. For the firemen and lifeguards and park police who were kind enough to ensure we were all ok and help us round up all of our scattered belongings and get back to the car.  

My physical cuts and bruises from the ordeal will heal long before the emotional scars of the day. But, thankfully, someone was watching over us and I was able to return home from such a frightening experience with 3 kids that are just as healthy, happy, and content as they were when we left that morning. 

I, on the other hand, may continue to struggle with this guilt for some time. It's been a long and exhausting few days, but Nic made it home this morning and I was able to get some sleep and talk through everything. Thankfully, he was kind enough to give me a good 2 days before making any smart ass comments - which for him is pretty impressive. 

But, all in all, the theme of this blog is that you shouldn't beat yourself up for the little parenting mistakes. Things could always be worse and tonight I'm thanking my lucky stars that my wake up call didn't result in any permanent damage to my children or myself. For I'm not sure I could have ever forgiven myself if things had turned out differently. 

Complete

It seems unreal that we welcomed Ella into our family 4 weeks ago. In some ways the time seems to be flying by, but then again I can't imagine life without her. She completes us.

I feel like this whole journey through pregnancy and delivery was a test of our family's resiliency, determination, and acceptance.

From finding out that we were able to get pregnant without fertility treatments, to the 20 week ultrasound telling us the baby would have a cleft, to the specialists telling us that there was no cleft, but there was a dilated kidney that would need to be monitored, to the endless nights of heartburn, to the aches and pains from getting bigger while caring for two kids, to postponing my c-section date because of my stubbornness in wanting to have a VBAC, to welcoming my first and only stretch marks the day after that canceled c-section date :(, to asking everyone for your thoughts and prayers to make me go into labor when my due date passed, to going into labor the night before my 2nd c-section date, to 12 hours of labor with no progress, to finally throwing my hands up, taking the hint, and having the c-section...

To the moment Nic was able to announce that the baby was a GIRL...

To the doctors telling me as they stitched me back up that this would need to be my last pregnancy because my uterine wall was paper thin by the old scar tissue and I was extremely lucky that the VBAC attempt had failed.

I have no doubt that this journey was guided down a specific road, meant just for us. We were given opportunities to test our faith in each other, our resiliency and determination as a family, and our limitations. I feel like through all the ups and downs we have embraced both the good and the bad and been able to find the positives, no matter what the odds.

So, now that we are, without question, complete. I have no hesitation is saying that I am thankful for each of the wonderful and unique children that I have been blessed with. My family has taught me more than I could ever fathom and continues to do so on a daily basis.

From trying to calm a special needs child that is dealing with jealousy issues he doesn't comprehend, to answering the tough questions of a 4 year old who is now realizing that because Ella is a baby, Xander is a big boy and why is it that he can't walk and talk. I'm learning each day how to ease this transition and at the same time trying to shape my children into the caring, understanding adults that I hope they will become.

Sure there are times that it's hard to keep from crying. Like after Ella came home and Cole was with me in the living room, out of the blue he told me that we needed to take Xander to the doctor, because now he was a big boy and he needed to talk. But I made it through that first statement, which caught me completely off guard, without losing my emotions and over the past several weeks have continued to field similar questions regarding walking and talking. I'm not naive and I know that the questions will only get more complicated from here, but I feel like this early foundation I'm trying to establish of appreciating the differences in everyone will be the key to future, more challenging topics.

And don't think it's any easier with Xander. In fact, it may be harder to watch him struggle, because I can't talk him through it. Which is exactly the reason I was so stubborn when it came to scheduling the c-section. I foresaw how difficult it would be for him.

Put yourself in his shoes. How would you feel if your primary care giver, the person you rely on for every meal, movement, activity, drink, etc... All the sudden leaves, only to come back and be unable to lift and assist you, and has a new little baby in tow, it's sure to be a shock. Especially for a child who is just beginning to assert himself, yet doesn't have the ability to understand what's happening.

The whole situation has brought me to tears several times, because I know how angry he was with me those first few weeks and I can imagine how hurt and neglected he felt. But I kept my head up and have been trying my best to carve out time for just Xander and I throughout the day. And I'm really happy to report that it seems to be working and this past week has gotten much better. We are finding a new rhythm to life.

So, as we continue to embrace this new path and cross the rivers as we come to them. I'll keep you all in the loop. But for now, we're enjoying each day, counting our blessings, and looking forward to what the future holds!

Thoughts of the Night

Insomnia - really it isn't a great thing when you have two little kids to keep up with all day, but I'll look at tonight's as an opportunity to catch-up on life, thoughts, and words.

Only 3 weeks left until we meet baby number 3 and while part of me is excited and impatient, another part of me is content to just sit back and enjoy the little time I have left with my 2 boys, before we introduce the chaos of another child, even more sleepless nights, and a new family dynamic!

My exhaustion over the last few months has kept me from updating all of you and I apologize for leaving you hanging. It seems as though my best processing, as of lately, is occurring in the shower, which is not the most conducive environment in which to write a blog. I've also been finding it hard to find the time and energy to return simple phone calls and texts, let alone steal away an hour or so of uninterrupted "me time" to pour my heart out.

So, again, I apologize and I'll view tonight as an opportunity to spend time with myself and I won't dwell on the fact that tomorrow may require more than my allotted 1 cup of coffee to get through the day.

I guess I'll start with one of the big updates we've gotten over the last few weeks. Xander's genome sequencing results came back and he has officially been diagnosed with Mowat-Wilson Syndrome. Which to us is a huge relief. It means that we weren't barking up the wrong tree for the last year and a half and more importantly, we haven't been overlooking any other underlying issue.

It also brings a type of closure to that part of our battle - we now know, without a doubt, where we belong. However, that being said, the diagnosis itself really doesn't provide us with any more answers. We do know that his specific deletion within a single gene on chromosome two is a "de novo mutation," meaning that it is a new mutation and neither Nic nor I passed it on, so the likelihood of us having another child with MWS or Cole being a carrier and passing the syndrome to his children are similar to the general population, which seeming as there are only 250-300 cases of MWS worldwide - is pretty slim!

Given the fact that we are expecting number 3 in a few short weeks and didn't wait for this year long process to culminate before choosing to continue on with our lives and our family plans, this news is nice reinforcement that we made the correct choice by not letting the fear and uncertainty of possibly having another child with this challenge rule our lives. And to be quite honest - Xander is such a joy to have in our lives, that if we were to face this challenge with another, I'm confident that we would do so with grace and style.

In fact, lately one of the things that I have really been itching to process in my own mind is the fear that I see again and again from people who don't have special needs children of what they would do or how they would handle the situation if it were dealt to them. In some ways I completely understand, because I was there once. Before children, I couldn't imagine what it would be like having to raise a child who was different or challenged. I used to think that those parents had a strength I could never achieve. In other ways, it breaks my heart. It's not that I take it as a personal attack on my son, because in my logical mind I know that it's not. But, when you have a child with special needs and you continually hear people saying that they wish for nothing but a healthy child, healthy child, healthy child... it starts to eat away at you. I know the intention isn't to offend, but really - in a way it seems as though they're saying "I wouldn't want your child".

It's not an easy place to be in and until you have a child with special needs yourself or god forbid, there is an accident or an illness that leaves your healthy child with new challenges - you won't fully understand. But what I can tell you is that love for your children is blind and unconditional. I love my kids so much it hurts, just the same as all of you, and my love for Xander is no less than it is for Cole and will be no less than it is for this new baby, because love doesn't discriminate.

That's the part I think that people on the outside have a hard time comprehending. It may seem difficult when looking in that you can love a child who is unable to walk and talk as much as you can love a child that is able to hold a conversation and participate in all of the activities that you enjoy - but I'm here to say that you most certainly can, because it's your child and you love them for who they are, not for who you think they should be or maybe sometimes wish they would be. You love them for their smile, their laugh, each little aspect of their personality that makes them special and unique to you.

I'm also here to say that if faced with the possibility that you may have a child that's unhealthy or not "typical", life won't end. You will find joy and love in that child, just as you would any other. Because the love of a parent for their child has no bounds and although it may frighten you and you won't be sure where you will find the strength to carry on at times - it will be there. You will grieve for the child you always dreamed of having, you will get angry from time to time, and then you will embrace the amazing and wonderful child that you were given and continue on in your new role, as one of those parents you always viewed with admiration for the thought that if you were dealt that situation, you could never handle it - and look at you now - not only surviving, but striving.

Ok - now I've gotten myself way off on a tangent, but I needed to get some of that off my chest, because it's been eating away at me lately. And I'm by no means attacking anyone specifically, Between the birth boards that I have been part of during this pregnancy, friends, and friends of friends, I have been counseling so many people lately regarding having kids with special needs or the possibility of having them, that I've been waiting for a moment in time when I could process all that's been going through my head as I try to help frightened and uncertain parents through a difficult journey.

Well, tonight is my time and you are just coming along for the ride - so buckle up!

What I can tell you is that each journey of a special needs family and parent is unique, just as each child is unique. So if you're reading this and you're a parent of a special needs child. I'm not claiming to know it all or that my experiences and feelings align completely with yours. But, this is my reality. I'm sharing what it means to me, through my perspective, to be in my shoes. I will tell you that sometimes when I look at other parents with special needs children I have the same feelings many of you do. I look at their situation or challenges and I think - "wow, I'm glad that's not me because I'm not sure if I could be that strong." So, don't feel alone or on the outside if you truly can't grasp what I'm saying when I swear to you that if you were in my situation you could do this too.

We all feel it, even those of us who walk the path everyday. Because we are walking the path with love and like I said before, love is blind. We love our children for who they are, regardless of their needs and challenges, they make us better people - typical or not. Your children make you a better person, as do mine. But when we see something that is unknown to us, it is frightening and we may not initially see the love that is there, but only the burdens that seem to come along with the situation. That is the problem - if you look at any relationship for only the burdens and hardships - anything would seem hard. Because every relationship is trying and takes work, but if you embrace people and understand where they are coming from, who they are, and start to see them for all they have to offer, you understand the gifts they have to share and before you know it - it's not hard anymore. It's not scary and you can completely embrace the idea that if dealt a different hand, you would rise to the occasion too and you could become one of those parents that you never thought you could be.

Wow - I'm on a role of getting off track tonight! There is one more thing that I wanted to share about Xander's diagnosis though, before I go. So, as I was saying the MWS has been confirmed, but I hinted that it still doesn't quite leave us with a lot of answers and what I mean by that is his specific micro-deletion within the ZEB2 gene is unique. The lab has never seen another in that specific spot on the gene. So,basically, there is no other known case that is exactly like Xander's, Meaning that although we do know where we fit in, we don't know for sure how it will effect him and what symptoms may or may not present themselves over time. For example, most all MWS kids have seizures and "knock on wood" he hasn't yet. He's also pretty healthy and lately is making huge strides (for hiim) with is ability to communicate and social interactions.

So, all in all, we are going to enjoy this small victory while we continue down this path of unknowns with a smile on our faces, thankful for the family we have, the children we love, the friends that support us, and the little one who is about to enter this oh so crazy world of ours!

Thank you all for taking this journey with me tonight... if my calculations are right Xander should be up in about 10 minutes - so, here's to four hours of sleep, a baby arriving in less than 3 weeks, and a strong cup(s) of coffee!

Are you sure Thursday wasn't April 1st?

If someone had told me it was April on Thursday, I wouldn't have doubted them for a second.

Nic and I headed up to Sacramento for our ultrasound with the specialists, hoping for only a diagnosis of a cleft lip, but preparing ourselves for additional concerns as well. Because, in all honesty, it seems like with our babies its always been one hurdle after another.

Don't get me wrong, I love hurdles. They might not always be easy to get over, but they keep me on my toes and they are constant reminders of the amazing children I am blessed to love and who love me in return. Besides, I'm pretty accustomed to them at this point. In fact, I'm not sure what my life would look like without them, which is why it's always suspect when one gets removed.

Which brings me back to our appointment. It couldn't have started any better. The doctor who saw us was the same one who delivered Xander after I was transferred to Sacramento for my emergency c-section almost two years ago. He is amazing under pressure and I have full confidence in his ability and knowledge as a physician, which instantly put me at ease - not an easy task when the doctor is trying to predict the future challenges of your unborn child.

Nonetheless, it was the best possible scenario from the moment we walked into his office and it only got better. During the ultrasound he explained everything to us and walked us through each organ, structure, etc... finding everything normal. Finally, he zeroed in on the cleft and like some crazy April Fool's joke said "I'd bet the farm on it that this baby doesn't have a cleft".

Umm... "What?"

Nic and I were in shock. We still are. How can a cleft be there one minute and then 2 weeks later not be? And what kind of ultrasound techs and doctors (there were 4 total, all conversing, at our first appointment) wouldn't be able to double check one another close enough to raise a red flag that "hey, maybe we don't have a good enough picture or the proper angle to make that diagnosis at this point"??

So, besides my frustration and complete loss of respect for the ultrasound techs and doctors in that department at our base hospital, I am happy to say that a hurdle has been removed for our little one and us!

Although Nic and I are keeping our celebration to a minimum, because we both fear it might be some cruel joke. I am happy to share that we have returned to the status of a non high-risk pregnancy and a healthy baby.

So, thank you everyone for your support, encouragement, prayers, and understanding over the last couple of weeks. We look forward to sharing the rest of our journey with you - and hopefully, the hurdle that has been removed didn't leave a giant chasm in its wake. (Keeping our fingers crossed)

Round 3

"All aboard for round 3"

I should have seen it coming, maybe then it would lose some of its shock value. But I didn't. I figured we had paid our dues in a way, but the cards are yet again, stacked against us from the beginning. It seems that we are now on round 3 for babies who require specialists from birth and round 2 for clefts.

I'm 20 weeks with baby 3 and Friday was our "gender" ultrasound. We've chosen to not find out the sex of this baby, but the ultrasound did reveal that we will be having another child with a cleft. I wish that I knew more at this time, but that's really all the information we have until we see the specialists in Sacramento sometime in the coming weeks.

I'm just writing to ask that you keep us in your prayers. Hopefully it will be nothing more than an isolated, cosmetic issue like Cole's was, but there's always that fear with a cleft that it's related to a larger syndrome, which we may not know until birth.

While processing this during the last few days and going through, yet again my short grief period of losing that "perfect" baby we all hope for, I will say that I've found my peace. As I stated before, this baby will be perfect for us, regardless of his or her needs or challenges.

I'm also lucky that I don't have to worry about all those things I remember fearing with Cole. I know that my baby will be beautiful, cleft or not, and I won't have a problem loving them for who they are. In fact, I'll probably be upset after the cleft repair surgery when they bring my baby back to me and he or she no longer looks like the child I've fallen in love with.

For those parents who've never experienced a cleft repair or a surgery that alter's your child's appearance, it may seem hard to grasp, but it's difficult to hand over your "perfect" baby to doctors who will return him or her looking different, in pain, and unable to show you that huge smile you've grown to love.

I know it won't be easy and the next few months will have their moments of difficulty. But I take solace in the knowledge that we've been there and done that - I already know the drill. I know the surgeons, I know the hospitals - heck we were just in that same waiting room 2 weeks ago - they should engrave our name on one of the benches!

But all joking aside, we are in good spirits and can only look forward to another child who will bless our family with their uniqueness.