Kids being Kids

It's so hard to find the time to sit down and write. It always seems as though I'm being pulled in a million different directions and my to-do list multiplies by the hour. Therefore, writing inevitably gets stuck way up on the high dusty shelf in the back of the closet.

But, right now Nic has taken Cole golfing - in which he's having the time of his life with his dad - and both Ella and Xander have finally fallen asleep, after my 3 mile run with the stroller attempt failed to settle them into a slumber earlier.

The house is quiet - besides the laundry turning in the dryer and the hum of this laptop, there is other noise... ahhh - my time to reflect and update everyone.

So, here's the chemo update:

Round 3 of Nic's chemotherapy was this week. It hit him pretty hard and although he hasn't been sick, he's getting more and more fatigued with each treatment. Which, we're now officially halfway done!! (can I get a whoop whoop?)

In two weeks we'll go in for another PET scan and then we will get those results at our next chemo treatment in 3 weeks. Nic seems pretty nervous about the whole thing and although I find myself going there from time to time, I am doing my best to remind him and myself that nerves won't help anything. It is what it is and whatever that may be, we'll deal with it and/or celebrate when the time comes. So, prayers again that everything is going as planned, shrinking and disappearing.

The silver lining in all of this, because I always like to find the good in things. I mean, honestly, what fun is life if you concentrate on all the hardships and struggles - so the good for me is that Nic is around. He can't fly, so he's not going on trips or deploying. Although he's still working hard and sometimes long hours, he's home on the weekends and every third week when he's getting chemo he takes a day or two off after to recover. So, although he's tired, I think the kids and I have seen more of him and spent more time as a family in the last few months that we ever have. It's nice.

It's funny though, with more time spent together, interesting things have come to my attention. Lately, it's been our different styles of parenting. It makes me thankful that he's not a stay at home dad, because talk about being a helicopter parent - O. M. G.

You would think that I just turn my kids loose in the amazon with raging rivers running next to their unbuckled car seats surrounded by raw meat to attract the predators. Ok, so it might not be that bad, but seriously.

I know that I'm a tad more lax than some parents. I'm certainly not a hover parent of any sort. But, I think it's important to expose my kids to some level of risk.

Do I want them to get hurt? Of course not, well not badly. But, I expect them to get the bumps and bruises and scrapes that come along with childhood. How else are they going to learn what they can and can't do. And how else are they going to overcome their fears and develop a healthy sense of caution?

I feel like parents, too often, are too overprotective and kids don't have the opportunity to experience a healthy dose of fear and danger. And that's where Nic and I differ - it's understandably gotten worse since the cancer diagnosis. He basically wants to limit any and all unnecessary risk to the family.

But, in a way, it's almost humorous, because my gosh they're kids and there's inherent danger in everything they do, in everything we all do for that matter. Yes, there's a lot on our plates right now and there's no need to push the limits - I can respect that. But for the record, some of the "limits" are just a tad ridiculous.

Anyhow - we will agree to disagree on a few things, and I will confess that I'm the parent at the park who's not following my 1 year old up the stairs and holding her hand as she peeks over the edges - ok, so she did loose her balance on one of the those suspension bridge things yesterday and rolled off the side, but she landed in bark, on her shoulder, and after a quick cry was just fine. No harm done.

What I'm saying is, I did that and probably worse when I was her age - because we didn't have parks - so we climbed and ran across things that weren't nearly as safe - and we survived. Somehow, we survived and in that childhood, we found ourselves, our identities, and our limits.

So, although I respect Nic's parenting and his desire to mitigate risk - I also think that it's important as a parent to step back and just let kids be kids.

On that note, here's to summer, kids being kids, half of chemo under our belts, and a husband who will someday forgive me for not being a helicopter mom!!!

Love you honey ;)

Our New Chapter

Let's just start with a disclosure that this post isn't going to be as eloquently worded as many of my others, but I've decided to go this route because I believe a typical Facebook post doesn't allow for enough room or explanation.

This blog is about life. My life and the life of my family. It is filled with the good, the bad, and the ugly. Sometimes the cards we're dealt are less than ideal, but we roll with the punches, rejoice in the good, and survive. 

This week has been about survival in our family. And I thank each and every one of you for your kind words, prayers, concern, and support. I was hoping to update everyone when we had more information, but our journey toward an explanation and answers looks as though it will be longer than we anticipated, so at this point I'm just going to update everyone and try to keep you in the loop as we move forward.

This winter has been a hard one for our family. The move across the country, living in hotels for a few months, new germs, etc... So, we've all been sick on and off and it just hasn't been fun. But now that we're settled in our new house and into a routine, we've been able to get back into the groove, so to say. And with a groove, comes balance and a chance to catch our breath and address nagging issues we've been ignoring with the chaos. 

Nic has had a persistent cough for the last few months, but like I said, with everything going on, he had chalked it up to congestion and kept chugging along. Well, on Tuesday he went in for some antibiotics and came home with a chest x-ray showing a large mass in his chest cavity and instructions to go directly to an ER. 

It was a shock to him, a shock to me, and a shock to our friend down the street when I barged in and left her with 3 kids. 

In all seriousness though, I need to take a moment and thank our Air Force Family. You have been there for Nic, the kids, and I from the first moment we arrived in New Jersey and this last week has been a rough one and you've rallied around us, helped with kids, food, hospital visits, and endless offers of support. It has truly been appreciated beyond words and I'm not sure what I would have done without you. So - THANK YOU. I only hope that I have the opportunity to return the favors one day. 

Back to ER visit number 1. Nic and I arrived pretty shaken up. It was a long day, lots of waiting and sitting. They did a CAT scan that confirmed the large mass. 15cm x 11cm x 7cm. It appears to be in the chest cavity, pressing on his aorta and trachea - which is causing the cough. He was admitted to the hospital and they did a biopsy to collect a small tissue sample on Wednesday. 

Reinforcement #1, Grandma Charla, also arrived Wednesday. So, after the biopsy, they discharged Nic, with instructions to return to the ER if any new symptoms appeared before results, which were expected by Tuesday. So, we left with Grandma, collected the kids on the way home, and hoped to at least get them back into their normal routine for stability and comfort. 

On Thursday, Xander woke up with a runny nose and not quite his normal appetite, but he seemed happy as normal, so we put Cole on the bus and walked him to school, showing Grandma the ropes so she could pick up the slack if need be. I went on a quick run, trying to clear my mind and Nic cleaned his truck, in an effort to do the same. Just about 9:30 I got a call from the school that Xander was in the nurses office "not acting like himself and a bit lethargic" - thank goodness I was still in my running clothes, because I got my sprint workout in as I ran as fast as I could to the school, knowing lethargic and Xander isn't a good combo. 

When I arrived he had just thrown up and was in the same state Nic and I had found him in last December when he had his first seizure. Limp and unresponsive. Nic walked in as he had headed over with the stroller (you must know that it is much faster to walk from our house to the school than to drive - hence why we were both on foot) - the ambulance was called and I sprinted back to the house for our emergency meds. Once I was back, he was twitchy, but crying - which is what he did last time as he was coming out of it. So, we didn't give the emergency meds, but we did take an ambulance ride back to the hospital for ER visit #2, and day #3. 

We spent the afternoon in the ER with Xander, monitoring him. Not too long after I arrived at the hospital, I received an automated call from the school, saying it was in lock down. So, I of course called Grandma, made sure Cole got off the bus, which he had and told her that I don't know what is going on, but she needed to lock the doors to be safe, just due to the proximity of the school to our house. 

As texts from neighbors started coming in, I tried to keep mom updated from the ER. There was an assault at the 7-11 and the suspects fled into our neighborhood, could be armed, everyone was to shelter in place. First of all - brilliant, fleeing onto military base housing - really??? Anyhow, Grandma, Ella, and Cole had quite a show - helicopters, dozens of police, weapons of all shapes and sizes, dogs - it was pretty crazy to say the least. The whole incident was wrapping up just as Nic and I brought Xander home from the ER. 

We couldn't help but laugh - I mean really, you can't make this kind of stuff up!

On Friday, Xander woke up with a low fever, but other than that, thankfully, besides sleeping more than normal, he's been acting pretty much like himself. So, Nic and I decided we could go to a BBQ to take our mind off things. Cole was playing with friends that are moving this week, so we decided to just let him play and grandma kept the kids for us. 

Nic's oncologist called while we were at the BBQ. The biopsy came back inconclusive. The tissue sample they had taken was dead cells - which could yield no answers, so it will be another week until we know anything for sure. That wasn't exactly what we were hoping for - we are planners and therefore are waiting for our plan of attack. The unknown is not fun to say the least. 

So, our new time frame is a PET scan on Wednesday, an apt with the surgeon on Friday for a more invasive biopsy, and a follow-up with the oncologist next Monday (June 1). 

ER visit #3 happened after the BBQ. Nic started feeling a little off and being that he is on high alert for any new symptoms, we rushed back in, only to spend the next 8 hours sitting and waiting. They did another CAT scan of his head and thankfully, found a brain and nothing else ;) 

So, at 2am on Saturday morning, we were discharged and headed home - yes, if you are keeping track that is technically 3 ER visits, and 5 days in the hospital in 5 days :( - Hence why we need the continued prayers and are so very grateful for Grandma being here. 

Reinforcements #2 and #3 are arriving this week. The kids are excited to see Grandma and Grandpa Rowe and we are hoping for some good news. So, please, continue to keep us in your prayers as we navigate this new chapter of our lives. 

I will update when I can. 

We love you all and know that we are in good spirits and determined to fight whatever this is! 

Thank you all for your love and support.  

Be the Good

I've started this blog post several times now.

Over the last few months our family has been through quite a transition. And between that and just the daily back and forth of life in general, I've repeatedly gotten distracted and been unable to put the words together.

But, even with the delays and distractions, the same message is calling to me. It's been showing itself in different ways, but over and over again I find myself wanting to model and encourage others to "Be the Good".

It seems that we're constantly bombarded by all of the horrible, senseless, and inexplicable things that are happening in this world. We're all caught up in our daily routines, stresses, and commitments. We're so attached to our technology and countless other distractions, that we forget.

We forget life is passing by. People are passing by. Many times they are people just as distracted, exhausted, and stressed as us, but that is why I think this message is so important. That is why I'm making a commitment to myself to "be the good".

I want to be the one that steps out of my way to be kind to others, Not only because it makes me feel good, but because it may just make them feel good as well. It may turn their day around and remind them that life is happening. It's happening every day and if we keep looking ahead and planning ahead, we're going to miss all that is wonderful and beautiful today.

I also want to do this for my kids. I want to instill in them that it's important to notice others, be kind to others, appreciate others, and embrace all of the amazing things that make each of us unique and important.

I know this is a short one and I have so much to catch everyone up on, but my "distractions" are needing me again and life is calling. So, please, let me leave you with this. Take a moment this weekend to appreciate someone. "Be the Good". Give someone else hope that there are still beautiful people in this world and maybe, just maybe, you'll be the start of something wonderful.

Our number was called...

Well, it finally happened, yesterday our number was called.

For 2 years now, we have been anticipating it, dreading it, scared of it, and waiting for it. Ever since the day we discovered Mowat-Wilson Syndrome and began our research, we've been waiting. When at least 95% of the population suffer from something, you know your time is coming. You hope and you pray that it won't be you and somehow you'll escape the inevitable, but in reality you know, and you try your best to prepare, and you wait, you wait for your number to be called.

And then it happens; and it's just as awful and scary as you imagined, only worse, because it is you, your family, and your baby.

For the past few days our house has been battling the sniffles, sore throat, and low grade fever; like so many others this time of year. So, after Nic returned from dropping his mom and sister off at the airport yesterday, we put Xander down for a nap because he'd started running a fever. Cole and I were busy taking ornaments off the tree and returning the house to normal while trying to contain Ella and her curiosity.

The hustle and bustle of the holiday had caught up with me and just as I was starting to lose my cool over the disaster of a mess in front of me and my to-do list that probably stretches a mile long, Nic rushed into the room, carrying the limp, unresponsive, seemingly lifeless, body of my baby boy.

Xander was having a seizure - we both knew it, we had heard what it may look like, we had researched the different possible scenarios, but we still were not prepared for the emotional toll. As Nic held him and I rushed upstairs to throw some clothes on, I couldn't help but wonder, why us? Why now? Could there be a worse time? Not that there would ever be a good time, but seriously - I already felt like I was struggling to keep it together with everything on our plates - and now this - maybe this will be the straw that breaks the camels (my) back?

Then, just as quickly as I begin to feel sorry for myself - I dug in my heels, picked-up my head, and remembered that we're in this together and Xander needs us now more than ever. So I threw on some clothes, rushed downstairs - loaded the kids in the car and jumped in the backseat holding Xander in my lap as Nic set a new land-speed record to the ER.

Just as we pulled up, Xander started coming out of it. After spending a couple hours in the ER, monitoring him and allowing him to sleep, we were released to go home. Our only instructions: to follow-up with our neurologist.

It's times like these that I want to give a huge shout-out and hug to our MWS family. From the second we got to the ER and I reached out - knowing I needed some support and understanding from those who have been in my shoes, they rallied around us from all over the world. Offering support, advice, and encouragement. So, thank you all - we may be a small group, but we are strong, and we are dependable, and we are family.

For the rest of you, I'm sorry I didn't reach out sooner. It was a horrifying experience and I was drained emotionally. It's taken this long to pull myself together enough to find the words to let you all know what happened.

We have 10 days left in California. There are so many of you that I hope to see before we leave, look forward to seeing on our journey east, and hope to meet up with once we arrive in New Jersey. But, I ask for your patience and understanding. It's going to be a stressful time for us and this new development throws even more kinks in the armor as we try to see doctors before we leave and set up appointments on the other end of our travels.

So, please keep us in your thoughts and prayers as we enter the new year. The next few weeks are sure to be a whirl-wind and any and all support would be greatly appreciated!

(photo courtesy of the 5 year old photographer I wasn't aware we had in the room)

My "twins"

God has a funny sense of humor.

I realized this on Monday as I was getting dinner on the table, seating Cole with his food and drink on my right, then swinging the high chair and booster chair around my left side into a semi-circle so that I could easily reach all three children and alternate spoon feedings with the two smallest.

(Nic refers to this as our "stadium seating.")

Once we all sat down and began eating - it was quite a site - every 3rd spoonful, if I was lucky, actually made it into my mouth. As I'm alternating food bowls and spoons, because I was really trying to keep everything separate thanks to a little bug that's been floating through our house, I just had to laugh.

It reminded me of all the years that I'd dreamed of having twins. Then I realized that I do have "twins." They may be separated by two years and five pounds, but at this moment in time and for the next few months, I have my "twins!"

I love how they have the same favorite bath toy and neither one gets upset when it's taken, so every bath becomes a game of steal the toy, back and forth, over and over, with no tears, cries, or hitting.

I love how they sit next to each other and both intently try to figure out how a toy works. (I really love that every so often I see Xander trying to teach his sister how to use a toy that he understands better)

I love how curious about the world each of them are.

I love how both of them think that their biggest brother is the coolest person on earth and anything he does brings a smile to their face and laughter to the air.

I love it all.

Xander has made so many strides in the past few months and I know in my heart that Ella is fueling the fire. He's trying his best to stay ahead of the curve and although the gap is closing rapidly, I'm so impressed with how far he's come.

I know that this time of "twinness" will quickly come to an end and the transition will be challenging for Xander as he processes a new reality in which his sister is able to do things he can't yet master.

But, for now, we will rejoice and focus on the blessing that I never saw coming.

It doesn't look like anything I had ever pictured and may have come in an unconventional way, but my twins are here and they are both miracles in themselves!

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.