When it is...... what it is.....

So we are 3 weeks and 3 days out from Cam's open heart surgery. Three weeks. Looking back I'm still unsure as to how we got here. I know that by God's grace alone is how I'm still standing. I know that we have so much to be grateful for, and trust me we are so very grateful, but I am so weary. I feel like I still can't breath. Like the air in the room is sufficient, but there isn't enough to take a nice deep breath. Why do I feel this way you ask? I don't really know.  Honestly, I have nothing but praises to report as far as Cameron is concerned. We had a follow up with his cardiologist last Tuesday, and he said Cameron looks good. We will need to go back for an echo and another exam in about two weeks, but other than that he thought Cameron had once again kicked heart surgeries ass! I am in awe of my child. He hasn't skipped a beat, and here I am still struggling to move on. I'll get there. I'll find my big girl panties, and I'll put them on. I'll regain my footing. I just wish I never had to loose it again because of Apert Syndrome. Or anything really. I hate when life feels unsettling. And this could quite possibly be just something I am facing. Quite honestly I'm not in the best place in my life. I am not as happy as I want to be. I'm not as happy as I usually am. My life just isn't where I want it to be right now and I'm frustrated and sad about it. Like I said before, it will get better..... I'm an optimist, and even in times of pure sadness I am hopeful, but for now I'm sad. Just sad.

To add to my sadness, yesterday a mother I met while we were impatient at Boston Children's Hospital had to say goodbye to her precious little girl. Her daughter Kendall was no stranger to the hospital, she even had one of those rooms in the Cardiac ICU that loudly stated that she had been a long term visitor. She loved mini mouse and that was made clear by the abundance of mini decorations covering her room... it was a sea of pink in there and always a room I looked forward to walking by while Cam and I were walking around the unit. Kendall's mother Nicole and I met New Years Eve, she and I rang in the new year together over hospital food and conversation down in the lobby. We both must have screamed a look of exhaustion and in the midst of the universe and God working like it does we started talking to each other. She introduced me to a condition I hadn't heard of before called Pulmonary Vein Stenosis. This horrific disease, combined with her daughters other diagnosis of pulmonary hypertension, took her life two nights ago. How fucking unfair is that? She just died. She was fine(and by fine, I mean in the way of how kids with those diagnoses are) and then she wasn't. I remember her mom messaging me Thursday morning. She said Kendall had a fever and wasn't breathing great. I asked her if they thought she might have a virus, and she said she had no idea. She said she was just worried that Kendall was heading toward intubation, and that she was very scared and sad. I was in prayer for her all day that day. I was so sad for my friend. I was so sad for her daughter. I was so upset that I couldn't do a damn thing about any of it. I never thought however I would wake up the next morning to a message saying she had gone to Jesus. Just like that. What the FUCK? I am sad, but her mother, her incredibly brave, beautiful, strong mother, she is broken. She was robbed of her most precious possession, and I have no idea how deeply and horrifically debilitating that must be. All I know is that I prayed for Kendall and I prayed for her to have a better day, and that didn't happen. At least in the sense that I was praying for it to. I have seen her mother post multiple things on Facebook regarding her daughters death, and yesterday she posted that she was tired of people telling her that this was God's plan and that Kendall is in a better place. If you have said that to someone who has lost a child, don't ever say it again. And if you don't know what else to say, then say NOTHING!!!  If you read this Nicole, I love you. I am so grateful that I got to meet you and I'm so grateful we got to meet Kendall. You are one incredible mother, and Kendall was one incredible kid.


This isn't my first rodeo of watching a friend loose a child. Unfortunately one of the downsides of having a child with multiple medical issues, means meeting other kids with multiple medical issues and somewhere along the way you develop friendships with other parents and sometimes you or the other parent has to say goodbye to their child. It's the nature of the beast on this journey. So Paul and I have met several other families whose children have died. It's traumatizing each and every time. When a child in the Apert community dies, it's like the air is sucked out of the room, and no matter where you are you quickly find your child  and you helicopter parent them for the next several weeks, because you know that the child that just died, whether from a surgery complication, or because of an underlying health issue, that child could have been yours. In some weird way that child is yours. Last year a sweet precious baby girl died with Apert Syndrome. Our families had met in Boston when they traveled there for her hand surgery. We had a nice lunch with them and one other Apert family. There was no weirdness, we didn't have to search for conversation, because in a weird way we already knew each other. We are family. When another child with Apert Syndrome is born it's like adding another member to your family. We are connected, and it's truly beautiful. When this sweet angel passed away last year I cried for days. But I wasn't the only one. The sadness across our community was felt, and it was so heartbreaking. I remember sleeping in Cameron's room for a week just because I knew as sure as the sun shines that it could have been Cam. It could have been any of our kids. It's not fair. It's haunting. But it is what it is. It's something you face everyday when you have a medically complex child. It's always back there, on your mind, even though mostly buried reminding you that you are not immune. I realize it is that way for children with no medical issues as well, because we have no idea what the future holds, but when you are living every single day in a world where your child has a medical condition and good amount of your friends have children with medical needs it becomes a little more in your face! It's Life. It's life for us.

God was good to us in Boston. Prayers from friends, family, strangers, churches, they were truly felt. I remember the night before Cam's surgery I was having an unusually rough time. Breathing heavy, feeling a little out of control, and I reached out. I texted several of my close girlfriends and asked for some serious prayers for peace. I didn't know what else to do. I certainly wasn't praying and feeling anything differently and I knew I couldn't loose my cool, because I didn't want to be confined to an insane asylum on the day of my kids heart surgery, so I reached out. I asked this group of girls to pray for some serious peace. To reach out to God and beg him to help me breath. I was so confined to my fears that I just couldn't take in anything other than hate. The response was almost immediate. My beautiful friend Sharla claimed it. She told me that peace was coming my way. That I was about to feel it. That I would be feeling it. She saved me. Several other friends responded too. They let me know that they were praying and that peace would find me. They assured me that they loved me and they loved Cam and that everything was going to be ok. I wept. Then for two whole hours I fell asleep. I felt peace. God was good to us. Cameron's surgery was successful. His recovery was smooth. We were prayed for and we were loved. I don't know why that doesn't happen for everyone. I know it can't. I know that life isn't fair in that way, but I struggle to understand it all. Especially when it's one of our own, or a close friend. It's hard. Life is hard.

This is such a dark post, and I apologize for that. I swore that when I started to write this I would stay raw, I wanted to be authentic so that if there was a chance that someone read this that needed to hear what I felt, I wouldn't have held back. Sometimes that means dark and morbid. Sometimes life is dark and morbid. If it isn't for you, then consider yourself truly lucky! I am grateful that my life is my life. Sometimes I'm sad. Sometimes I am angry. Sometimes I struggle. Realistically I'm glad I understand my feelings  because I think that is what keeps my emotions from becoming an issue! I feel that I was by whatever measure meant for this life. I was beautifully created to withstand the trials and tribulations that I face. Sometimes I want a different life. Most times I'm so very, very grateful for Every. Single. Thing, that I am and that I have.

3 weeks! Soon the boys will be able to go back to school, and soon Spring will be here. I'm hoping for a more enthusiastic 4 week post! In the mean time please keep my friend Nicole in your prayers. Thank you for all of your love and support for our family. We sure are blessed to have all of you.

Love,
P, J, C, and M

When it's all said and done

Man, time really does fly...whatever that means..... My last post was exactly 4 days before we set out on this second heart surgery journey. Since then it's been three weeks. Three weeks is a really long time when every single minute of every single day takes forever. But we are home now. We made it home Friday, and it was such a wonderful moment. I want to give you guys a brief synopsis of what our trip entailed so hang in their because even though I used the word brief..... this trip was anything but that!

Starting out- So Monday, 12/22 we loaded our rental car and headed North.... however before our trip truly began we made a pit stop at the NICU where our sweet friends had been raising money for us by raffling off two awesome baskets. They sold tickets for the baskets and wanted Cameron and Max to each choose the winning tickets. So we stopped there and the boys got some sweet loving, and then they drew the winning tickets. They awarded us with the donations which was over $1,000! To say that my incredible NICU family is awesome is an understatement. They are all so wonderful and they have hearts unlike any group of folks I've ever met! I'm so glad I am a part of such a wonderful group of people!!! You all know who you are and I am so blessed an amazed at your incredible love for our family!

So after that, we got started on our 14 hour trek up north! The boys were so great! They didn't complain too much and we made it all the way to Delaware(about 7.5 hours in) before we really needed to stop and let them get out for the night. The next morning we got up and started our day around 9 am. When we learned Cam would need this surgery again and that we were going to drive, Paul suggested that we could drive through NYC, since thats somewhere I've always wanted to go, but have never had the chance. So of course I thought that was a great idea. So he routed our trip so that the second day we would be able to drive through the Big Apple! We ended up getting to New York City around noon, and decided that we would get lunch and see some of the sights and then continue on our way. We ended up seeing the Statue of Liberty, and then parking near Rockefeller Center and walking down to see the Christmas Tree! It was beautiful. Because of our extreme need to keep the boys well before Cam's surgery we couldn't really go into any stores, but seeing the sights was honestly really awesome for me, so it wasn't too disappointing. We drove through Times Square, and by the Empire State Building, so I really got to see a lot of the city! It was a silver lining in a trip that had me an emotional wreck!

The only downside to detouring to view the city was the traffic trying to get out of there! It took us 3 hours to go 30 miles once we left New York, and traveled into Connecticut.... fun fact about Connecticut.....TRAFFIC IS HORRENDOUS......ALL. THE. TIME!!! So we ended up not getting to the house we were staying at until late Tuesday night. Still I really loved viewing the city and so we weren't too upset about the ridiculously awful rest of the trip! Haha!

Once we made it to West Bridgewater(which is where we stayed over Christmas) we put the boys to bed and we were all out! Then the next morning Cam and I had to be at Children's Hospital Boston by 6 am..... which meant we had to be out the door of the place we were staying by 5 am...... super early!!! So on Christmas Eve morning we headed out the door and to the hospital for pre-op we went. We started our slew of tests by 7:15 and finally by 1:00 we were finished and heading out the door. During our time there Cameron had to have a chest x-ray, echo, EKG, blood work, a physical exam, and we had to meet with the slew of doctors/anesthesiologist/ and nurses that would be assisting us during the upcoming surgical week. It was a long day, but at the end of it Cameron was cleared for his heart Cath and his Open Heart Surgery. Gulp!

We spent Christmas Eve eating at Chili's and watching Frozen together for the first time. I really never thought I would have to worry about Frozen being a big deal in my house, but boy was I wrong. It is now Max's favorite movie, and he loves anything and everything that has to do with Anna, Elsa, or Olaf! That movie has magic I tell ya! Anyway, Christmas eve went by fast and soon it was Christmas morning. So many people have made the saddest faces when I told them we would be spending Christmas in Boston. And for a bit I was like that too... but then I realized there was no need to be upset about something so insignificant. So what we spent Christmas in Boston.... we were together.... we were safe, and we were able to celebrate Christ's birth. Then that evening we were invited to Paul's brothers boyfriends families home(say that five times fast), and it was so lovely. We had a wonderful Christmas day.

The weekend leading up to the Monday of Cam's cath is a blur. All my fears and anxieties increased and I really had a hard time staying positive. But like time always does, the weekend passed and we were at the hospital Monday morning waiting for Camerons heart Cath to start. Paul stayed with Max and I took Cam...No surprise there...my control issues are bad when we aren't dealing with major surgery, add this stress to it and I'm pretty out of control! Cam's cath got started around 9. They updated me twice, once saying all was well, and the other around 11:30 telling me that everything was done and that they were waking him up. It was a huge relief to know that he had done well during this cath, and for what I knew he was extubated and in recovery. I later learned that while he was extubated, they had accidentally overdosed him on anti-nausea meds which makes you very, very sleepy, and so they had to place something called an LMA in his mouth to help hold his tongue down so that he could breath. I will spare you the details of the next hour, but I will say that I will gladly live the rest of my life in thanks as long as I don't have to see my kid in that condition again. It was brutal. However, in true Cameron fashion he finally started to wake up enough to breath on his own, and from there was fine. Because of his breathing stunt we got a ticket to the Cardiac ICU for the night, but things could have been worse, so I didn't complain!

The day after his Cath we got moved to the step down unit on the regular cardiac floor where we were to await his surgery scheduled for Wednesday. This was the hardest day for me, by far. My dear sweet, incredible friend Chelsea who is one of the most selfless people I know, flew up to Boston on this day so that she could watch Max for us on the day of Cam's surgery so that we wouldn't have to worry about him during that time. She flew into town Tuesday night, and she will never know how much her generosity meant to us.....You are so awesome Chelsea....and we love you very, very, much!!

WEDNESDAY...12/31/2014....Surgery Day.
Cam was 2nd case.....that was horrible. That meant they weren't going to take him back until after lunch. That meant that I would have to sit and cry for hours until it was time to go.....it's something I will try to avoid at all cost for any future surgeries....It was torture! Finally at 12 pm they came to tell us that they were ready for him in surgery holding area. So I carried my sweet prince to the place where they take your child out of your arms and into a room where they literally hold their heart in their hands. It's exhausting writing about it.....it's excruciating living it. We got down to the holding area, and they gave Cam the pink juice that helps him not cry when they have to take him away....I kept begging them to give it to me too.....but something about hospital policy kept that from transpiring. Paul and I kissed and prayed over and snuggled our sweet boy. We told him how brave he was, how incredibly strong he was, and we told him how we are the most proud parents in the world to get to be his mom and dad. We shed our tears, kissed his cheeks, and then just like that they were carrying him down the hall. There is no way to accurately describe that moment, unless you have been there. It's not the type of fear that is elicited from a horror film, but it's pretty similar, in that you can't breath, can't move, can't run, you just stand, motionless and watch your entire life flash before you, and then get carried away. Its awful, and if you haven't had to send your kid for open heart surgery, consider yourself incredibly blessed!

For the next seven hours Paul and I sat in the waiting room with his brother and his brothers boyfriend. We sat and we talked and we cried and we waited. We waited on the edge of our seats for the updates that would and still do send chills up my spine. The one where they told me they were putting him on the heart lung machine....something about knowing your child's heart is no longer beating on its own is a sickening feeling that I wouldn't wish on even my worst enemy. The update where they are taking him off the bypass machine...also something I wouldn't wish on my worst enemy. Then the update where the Doctor comes out and tells you that the surgery went great. That he was able to remove the obstruction, and that there were no complications. HALLELUJAH!!! Then comes the wait....the most agonizing part of the entire process, waiting to see your child after surgery. Sometimes it takes 30 minutes, but most of the time it's over an hour. The longest hour of my life!

Finally around 7:30 pm, Paul and I were allowed to go back to see Cameron in the ICU. It was the most beautifully sad moment. Seeing him intubated, attached to so many, many wires and tubes. It's not something any parent should have to bear witness to, but something that so many have to face every day. It's very scary, but Cameron looked good considering. All his numbers were good, and his nurse was on top of his med changes. It's an exact science at that hospital. One of the reasons we bend heaven and earth to get Cameron there. They are just so wonderful, like a well oiled machine. They anticipate things before they happen, and they have no hesitation in telling you what is going to happen. That's why they are number 1! Anyway....Cameron was pretty snowed in the ICU, so paul went home to be with Max, and I stayed and sat and prayed, and cried, and sat. Eventually around 11:30 I decided that if I was going to function I needed to put something in my body so I walked down to the restaurant in the hospital. I got a cup of soup and sat down. There was another mom that I recognized from the CICU sitting down there as well, so I introduced myself and we started chatting. Her daughter is 3 and suffers from something called pulmonary vein stenosis, so she is treated at Children's Hospital often, and her mother is one of the most incredible people I have ever met! We rang in the new year together and then headed back up to be by our babies sides.

DAY AFTER SURGERY
The day after surgery was pretty eventful. Cameron started waking up and becoming more and more agitated. It's an awful sight to bear, but it showed how incredibly strong he is! Around noon they decided to take his breathing tube out. That went well, and not even two minutes after that taking place he was begging for water! My sweet, sweet boy! The rest of that day we battled pain and anxiety and movement issues, but by that night they had given him water and he was much more consolable.

Day 2
We were still in the ICU, and because of the lack of patients they had no immediate need to move us to the floor, so we hung our there most of the day. They also took out Camerons pacing wires and his chest tube. That was the best day, because from there on out it was cuddle central!

Day 3
We moved to the floor. The 8th floor at Childrens Hospital Boston is specifically the HEART FLOOR. The kids on this floor are recovering from heart surgery, waiting for heart surgery, suffer from heart ailments, or have recently been diagnosed with a heart condition requiring hospitalization. All hearts, All day long! Usually you are in a room with another person, but this time we were able to get a room all to ourselves....which was AMAZING. At this point Cameron is now walking a little and is feeling more like playing and moving around. He no longer needed his oxygen during the day, so he had minimal requirements as far as staying in his room. So we took lots of walks. We walked down to the entrance, where they have a gigantic, beautiful fish tank filled with awesome fish, and they also have this really cool interactive board that is motion activated and is really cool! We would walk around the floor and go to the playroom. We met some new friends, and played a lot of trucks and cars! Cameron was doing great, so I was doing great!

Days 4 and 5, are a blur....over the weekend Cameron did very well so they said we could get discharged Monday as long as his echo looked good. So after his echo came back clear, we got our discharge papers and headed out the door.....however, later that night, as Elliott luck would have it, Cam spiked a really high fever. So I called the on call service and was told to bring him to the Emergency Room. After a battery of tests and one very painful urine collection later, they decided everything looked good and that it was likely an inflammatory response from the surgery. But in the way of playing it safe they decided they would keep us one more day. So we spent Tuesday in the hospital again. Then Wednesday they decided that Cameron was more than ready to hit the door, so they discharged us again....and that time it was for good!!!

Last Thursday we packed our car and headed home. Eight days after Open Heart Surgery. It took us two days and all the patience that we own, but by Friday night we made it back. HOME sweet HOME! This was a long journey. It was beyond stressful, and I'm pretty sure I'll need to see a therapist for awhile, but Cameron is good. Praises to our Lord, he is good. His heart was fixed, and for now its healthy and happy. He is healthy and happy. We still have recovery to overcome, and he still can't be in large crowds or go to school for several weeks, but we will get there....He will get there! We have his first cardiology appointment here at home tomorrow, so keep those prayers coming for a good report!!

For all of you that prayed for us, that supported us, that bought a t-shirt, that gave money, that gave love. THANK YOU!!! We are so very grateful for your love and prayers you sent to us during this experience. We sure did need them, and they sure were heard! We are always in awe of the kindness of our friends and family, and especially so to those that we have never met, but that love us anyway. We will never have enough words to describe our gratitude, but we hope you know how much you all mean to us, and how much it means to us that you love our sweet boy so very much. He is one pretty amazing kid, and we are so incredibly proud to be his parents.

Please forgive any and all typos that you notice in this blog update. I have sausage fingers and at some point I give up on trying to fix every single typing error!!
WE love all of you, and we hope you find many blessings in this new year!!

love,
p, j, c, and m

Anxiety is the pitts!!

Well folks its getting close. In four days we will pack up, and head north! The trip is about 12 hours if we drove non-stop, so realistically its about 24 hours...hahah! Our plan is to leave Monday late morning and drive about 7-8 hours then stop and get a hotel. The next day we will finish the rest of our drive, and hope to be in Boston around 4. Paul has promised me that we can drive through NYC.... its really sad when you get excited about just "driving" through somewhere! Haha. I have never been to New York City. I've always wanted to. Just never got around to it, I guess. One day! But driving through it will tide me over until I can get there for real one day :)

The 24th, Christmas Eve, is when we have all of Cameron's Pre-Op appointments. We have to be at the hospital by 6:30 and then the slew of tests that will upset Cameron to his core will begin. He is scheduled for blood work, x-ray, EKG, and Echo. During this time we will also meet with a multitude of people from the residents and nurses, to the anesthesia people and the cardiologist. We will see Cam's heart surgeon, where he will go over what he is about to do to my sweet, sweet, baby, and where I will loose it! It's a tough day. But at the end of it, we will leave and go back to the place we are staying(and thanks to an incredible friend, it will be a lovely home with a place for the boys to play and for us to rest a bit) and we will spend Christmas and the weekend after loving and enjoying our precious boys.

The plan then proceeds to the 29th. This is also my wedding anniversary. 7 years. I'm still in love. I'm still grateful, and during times like this I need my husband more than ever. You see he is the practice one. The one that stays calm in the midst of a storm. The one that assures me that I'm overreacting. The one that stays strong and doesn't loose it, when I have lost it over and over! 7 years down and one Cardiac Cath will happen on the 29th. This Cath procedure is to hopefully ablate the area in Cameron's heart that causes him to go into the SVT rhythm. If the SVT is in a safe area, and can be easily dealt with, then they will ablate it. If it isn't, then they have said they will just leave it alone and manage his SVT post operatively. Then later on down the road if he still has issues they will reassess then. They have assured me that they deal with SVT all the time after open heart surgery, and that even though they would rather not have to have it be an issue, they have said that if it is they can handle it. It's during those conversations that the lump in my throat refuses to go down.

After Cameron's Cath he will be admitted for the night, and then the plan is for discharge the next day, where we will then meet his doctors one more time to assess him for heart surgery which is scheduled for the 31st. We are taking 2014 out with a bang! I'm scared. I am so very scared. Even as hard as I try to escape them, the worst thoughts creep into my mind at times at haunt me about Cameron not making it through this. There is no medical reason this should be the case. The doctors have assured me this is not a difficult repair and that they are confident in this surgery. He has had this surgery before and done amazing. So it can't happen a second time, right? Everything can't go as well as it did the first time, can it? These are the fears that keep reminding me of how weak I am. These are the fears that haunt me everyday. I went into this blind the first time. I had not experienced handing my child over for heart surgery before and the things that happened after were all new and uncharted territory. I've been there now. I know what's supposed to happen. I'm more aware of all the things that can go wrong, and I'm literally paralyzed with fear. I am trying so very hard to find bravery. I pray. I read a daily devotional. I seek out bible verses and quotes that encourage me. I'm really trying to be brave. But you see, Cameron..... he's brave. He is so very, very, brave. He is the one that will be going through all of this. He is the one that will be operated on, and he is the one that will be healing and dealing with the aftermath of surgery. I have the most brave person right in front of me every single day, and yet I can't seem to find it anywhere.

God is with me. My heart knows this. I just continue to loose sight when those bad thoughts creep in. I'm so thankful for others that are able to pray without so much fear. I know they are reaching heaven for me right now, and I couldn't be more grateful. We will get through this because of your prayers and love and support. Cam will get through this. I am so ready. I am so ready for this to be over. I need it to be over. Not only for my own sanity, but for my families. I feel like nothing can be planned or talked about until we are over this hurdle, and that isn't anyway to live. But it's where I am right now, and so this part of our journey couldn't come fast enough!

Cameron is happy. He is so fun, and so unaware. We have told them we are going to Boston for Christmas to see Uncle Crosby and Uncle Mike. It's not a lie. We will be spending Christmas together. It's hard to look at my child and know that as soon as we enter those doors of the hospital he will know why we are there and he will be afraid. That's the one thing I hate about this the most. He is so afraid of medical settings now. He does ok at the doctor, but that has taken a year to improve on, and to allow the doctors to listen to him and to check his ears without completely loosing it. I don't blame him. I am afraid of the doctor now too, and I am only a bystander in this situation. But for now, he is happy.

Thank you so much for your love and prayers and support. We are still incredibly humbled and amazed by each and everyone of you that have supported us in whatever way during this. We have the best friends in the entire world. Because of your generosity we don't have to worry about financially getting the boys Christmas presents, and we have a little less stress on the financial burdens of this trip. We are truly blessed. We hope you all know how much you mean to us and how much we love you!

I will try to update as much as I can in the coming week. We desire and covet your prayers always!
Love,
P,J,C, and M

And its Christmas in Boston!

We knew this would be very probable, and now its very real. Surgery has been rescheduled and we will officially be in Boston for Christmas. Pre-op for his heart Cath will be Wednesday December 24th, and then his cath will be the following Monday, December 29th. He will recover the 30th, and then the 31st will have his surgery. We are knocking out 2014 with a bang! It's funny, because while talking with the scheduler she was so hesitant with the dates. It was almost like in telling me the dates she was also saying "I'm so sorry" at the same time. She and I have talked multiple times before, she is wonderful and funny! Her northern accent cracks me up when she says certain words, and she says that my southern accent makes her want to visit Tennessee! When I remind her I live in NC, she always says "oh I didn't realize people had such accents from there!" Honestly, I have no idea what she is talking about. I know that on occasion I may sound a bit "country" but I in no way have a "typical" southern accent. I really have no accent at all. I'm boring! But it's fun conversation non the less! This time though, she seemed so bummed that we would be spending the holiday away from family and friends, and I am too, but it's ok!

I've had a lot of time since learning about Cam needing this surgery, that I've been able to really come to terms with my life.... his life. You see it doesn't belong to me. Cameron belongs to Jesus. I just get to love him and help him grow, and learn, and I get the sheer joy of being his mother. I'm jealous really. I want to be in control, I want to call all the shots. I want to say when things need to happen. I need that control. But it's not mine to have. It's the Lords! He is ultimate power, and he is the one calling the shots. It can be frustrating. I can't see this entity face to face to tell him how incredibly selfish I think he is for putting my sweet boy through this. I can't physically touch him, in order to inflict pain(which I know would make me feel better, even if just for a brief moment), and I can't audibly have a conversation where I hear him like you would hear a friend. Those things make Faith so hard sometimes. But isn't that the exact point of  FAITH? Knowing 100% that something is there without being able to hear, see or feel it? I guess that's why my faith struggles. I guess that's why I fail time and time again. I guess that's why it's easier to loose your faith. But even in all of that struggle there is beauty. I have HOPE for the future. I have the promise of God that he will not abandon us, even if we falter. He promises to prosper my sweet Cam, and not to harm him. He promises that if I trust and lean on him that he will in return be gracious and good. You see he loves Cameron more than I could ever imagine loving someone. I wouldn't know how that would look, because honestly my love for my children runs so deep that it's impossible imagining someone else loving them more, but he does. I know this! My head knows this! My heart lags behind sometimes.

Christmas is not where you are or what you are able to do, or who you are with. Christmas is a celebration of the one who created life. Christmas is the birthday of all birthdays, and the reason we should love and care for one another. But I would be lying if I said that part of the excitement of Christmas wasn't spending time with loved ones. If I said it wasn't at all about presents, and food, and celebration. I would be lying if I said I wasn't sad that we will be missing those things this year. It's hard being away for the holidays, it makes the celebrations up until that time hard as well. We won't be able to go to holiday parties with our kids, because we have to stay well! We won't be able to expose the boys to the mall Santa because if there is one place to catch a cold it would be on that jolly old mans lap! I am sad for those things. But at the same time I'm grateful. It's a bag of mixed emotions in my head constantly. I'm so grateful that Cam's surgery was able to be rescheduled in a timely manner, and that the folks involved in his care are so kind and compassionate. I'm grateful that Christmas won't actually be in the hospital. Sure we will be in a place other than home, but we will be together, and we will be safe, and warm, and we will have food to eat and a place to eat it. We are blessed.

I have to say my feelings out loud over and over again. Sometimes I feel like I'm trying to convince myself that God is good and loving and pure. I have to constantly remind myself that this is just a place in time, and that life will be ok. I have to talk myself down from crying over these things I can't control, sometimes daily. I am always reminding myself of our blessings and the wonderful love we have been shown through this. I have seen God show up in so many ways and I am truly, truly thankful for that. But it doesn't come without bad days. Days where I doubt it all. Days where I feel like I've been abandoned and that no one could possible know how I feel. Days that I don't care anymore. It's a process. One that I'm not sure will ever truly end. You see this won't be the last surgery for Cam. It won't be the last trial. It won't even be the last hurdle I face that isn't even related to Cameron and this journey. I have found its so easy to be thankful to God during the good times, and sometimes so hard during the rough ones!

Friends and Family.... you have been wonderful. The love continues to surround us, and we are so thankful. Right now if you could specifically pray for us about housing during our trip to Boston that would be wonderful. As of right now they have no room at the Yawkey House(similar to RMH, but it has a fee) and the cheapest hotel is around $250 a night. I am still trying to explore options, but seeing as how most of our need will be Christmas and the weekend after, it's pretty limited as far as housing goes! Thank you again for all your love and support. We wouldn't be able to do this without you!

Love,
P, J, C, and M

Thanks....GIVING!

Well I think we are maybe on the mend in the Elliott house! Cameron still has some wheezy lung sounds, and a low grade fever, but seems to be feeling much better, and his breathing is definitely better! So for that I'm grateful. As far as Boston goes, we still don't have an exact date, but they are thinking probably the week before Christmas. I can't say that that time frame doesn't completely suck, because well..... it does! But at this point, I am just 100% ready to have this surgery over and behind us, and if that means we spend Christmas in Boston, then that's what it means. Besides, through this journey with Cam, I've really come to appreciate what the holidays truly mean for us. Of course being in a hospital means that you aren't exactly the most healthy, but what the hospital means for us during times like this is hope. Without the surgery that Cam is going to have, his heart would eventually go into failure and he could die. Without the hospital that  supports these kids through surgeries like this, then surgeries like Cam's could come with a lot more risk, and issues. It's full circle, really. We are also trying to look at this as an adventure. We have never spent Christmas in Boston, and honestly Christmas to us is so much more than where we will be spending it. You see, after spending months in a NICU, and then spending the year on and off in a hospital, and then the next three years facing surgery after health issue, after surgery, we understand how blessed we are that this isn't the 4th year that we have spent in the hospital for Christmas, because we know that other families can't say that. We know that families around the world are spending Christmas and other holidays in the hospital with their children, and I guarantee they are just grateful that if they are spending Christmas in the hospital, that at least that means that their child is still alive. We also know that Jesus doesn't care where you celebrate his birth! So for all of those reasons, if Boston for Christmas is where we need to be, then that's where we will be!

Honestly I can't believe Thanksgiving is tomorrow. It seems like this month has flown by. There are so many things I'm grateful and thankful for. A month ago when we learned that Cam's heart would need to be operated on again and in the near future, I was crippled with fear. Not only about the fact that I would be sending him through open heart surgery again, and that in it of itself is terrifying, but everything else overwhelmed my heart as well. Where were we going to stay? How are we going to get there? Will we take Max? How will we afford to do all of this around the holidays? How will we afford another heart surgery? And the list goes on. But then God showed up! He showed up in each one of you that has given, and loved us, and prayed for us! We have been undeservedly blessed by generosity from our friends and family. We have had friends give us money, make us dinners, send encouraging cards, call and text us to let us know they were thinking and praying for us. We have had friends offer to help get the boys some Christmas presents so that we wouldn't have to choose between financially affording our trip or getting the boys some things for Christmas. We know that gifts are not what makes Christmas and that it's not even close to the most important part about this holiday, but our kids are still small, and they are so enthralled in the holiday spirit, and they know that Christmas along with learning about Christ's birth and his love for us,  also means a big guy in a red suite brings presents, and because of that it's ok that gifts are a part of Christmas, and because of our sweet, sweet beautiful  friends we won't have to have so much stress of being able to provide gifts for them and having to pay for such an expensive trip to Boston. It's just been precious and so, so humbling for us. And the most incredible part about all of that, is to know that they were thinking of us. That they love us that much, that they would take time out of their lives, and their own stressors, and that they would work so hard to bring us so many blessings. It really does mean more than we will ever be able to say, and for those of you that have contributed to encouraging us, and loving us through this time, please know how truly, truly grateful we are to each and everyone of you!

I would love to say that I'm not bitter anymore..... because I don't think I will ever truly have zero bitterness in my heart. It's the way I'm wired. As hard as I try not to feel the way I feel.....I still do. I have started reading a devotional that inspires me to stay positive, and for the most part I can honestly say I have been. Aside from yesterday, it has probably been a good week since I've just burst into tears, and yesterday it was because of another families misfortune that caused me to have a 20 minute tear fest! I am not brave. I wish with my core that I was. I wish that I could be strong and bold and have no doubt about this surgery and everything that goes along with it. But I can't. I'm weak. I have met brave parents. I have a sweet family that not only have I worked with them, but over the months they have become dear friends. Their daughter has spent her entire 6 months inside a hospital. She has overcome multiple obstacles, and she continues to beat the odds, and fight. Her mother, is my hero and when I think of Brave, I think of her. When I go to visit this sweet precious family, I see so much love and kindness. They love the Lord, and they know that even in the midst of the hard times that his will is shining through. They may not have been on their journey that long, but they are so inspirational, even for me... a seasoned vet in this type of setting! When I look at them, I am angry with myself for being so upset over this upcoming journey. For this moment I have Cameron at home, and aside from his recent illness he is wonderful. I know that our hospital experience will be hard and I shake when I think of putting my sweet Cam through that, but I also know deep down that he will overcome this, and he will be the Warrior Cam we all love!! So, I get angry, because I want so badly to be more grateful for what we do have instead of what I wish we had.

I see it everywhere, and I'm sure you do too..... the advertisements for all the great black Friday deals that will begin tomorrow night.... that's right, it's no longer good enough that we have one day where we try to celebrate our blessings, but that day now gets to be cut short, because there might be a t.v on sale at Walmart that you need to stand in line for 5 hours to get. Now don't get me wrong....I have been one of those folks that has gotten up at 4 am on Black Friday to then fight through enormous amounts of people to get the hug and snug Elmo for $19.99 as opposed to $39.99, but that is a thing of the past. I'm not saying that you shouldn't indulge in black Friday shopping, I'm not even saying that you are a horrible person if you give in to the mass media's ploy to get you into the stores on Thanksgiving Day, all I'm saying is that I would love to encourage you to spend a little extra time with your family. Make sure you really do look around at your many blessings, and that you cherish those that get to be with you, and that you think of others that may not be so fortunate this year. Being a mom to a kid like Cam, and then my experience of working with families whose children are hospitalized, it just brings so much perspective, and I really would just love to spread some of that to others that may not realize how truly blessed they are! I am one of those....I really intend on making sure that I enjoy this time I have with my family, and that I pray for those that aren't as fortunate. Please join me!!!

I will keep ya'll posted on our Boston status. Hopefully by next week we will know a more exact date! I hope you all have a wonderful Thanksgiving and again I just want to thank all of you that continue to love and pray for our family. I could not begin to imagine this process without your support, so again we are so grateful and deeply humbled. We love you all so very much!!!

Love,
p, j, c, and m

You know because that's just our luck!

Well folks, Surgery has been delayed. :( I have had to take a few days to write this post because I have been so very sad about this news, but I put my big girl panties on and pulled it together(at least for this post ;)). Anyway, Cameron's cold took a turn for the worse and Sunday he started coughing. I wasn't too surprised, honestly. The previous Wednesday Max started coughing this awful croupy cough, and even as much as I tried to keep them separate....... That just isn't possible, so when Cam started coughing on Sunday, I just prayed and prayed that it would stay out of his lungs and that we could nip the upper respiratory stuff in the bud..... Not the case. We have been at the Doctors the last two days, and after a chest x-ray and a yucky sounding lower left lung, pneumonia has been deemed the culprit. They gave him two doses in shot form of some antibiotic called rocephin, and started him on two other meds orally as well. They have us doing neb treatments, and sitting in the hot steamy shower room doing chest PT multiple times a day. I haven't slept more than two hours since Monday. I think I'm probably writing this in my sleep :) They are trying their best to get him cleared up, but after speaking with Boston, they wouldn't want to proceed with a surgery like Cam's until he has been clear(lung wise) for at least 3 weeks. So this means we are looking at mid to late December!

As sad and disappointed as I am that we will most likely be spending Christmas in Boston, I'm more sad about the anxiety leading to that point. You see, having a kid like Cameron means that surgery will always be a part of our lives, and for me that means anxiety and fear the months leading up to the surgery..... so to have a date, become set on that date, and then have that date have to be changed...... just makes my issues that much worse. Lucky for Cam, he has no idea. He is still just happy, sweet, Cam! Aside from this nasty bought of respiratory illness, he is still full of smiles. He feels the most crappy at night, but from what I understand that is to be expected. But I would love to ask for ya'll to send up some prayers for my little bud. Please pray that he can kick this viruses but, and that he is feeling much better in the near future!

I also just wanted to let everyone know how grateful Paul and I continue to be for your love and support. We have received offers to help us with Christmas, monetary donations, dinners, visits from friends, phone calls(which is more comforting and helpful than you know) texts, and love! We truly do feel so blessed to be surrounded by some incredible people, and we will never be able to thank you enough for your support during this time. As of now we don't have an exact date for Boston. We are going to see how the rest of the week goes and then Boston will work with us to get us scheduled again. When we talked at the beginning of the week, they said it would most likely be later in December. And if that is when it needs to be, then that's when it will be! Like I said before, this whole situation has been difficult for us, but the Lord is showing his grace and love for us through you, and your support and we are finding peace and comfort in incredible ways. Thank you so much for your continued love and prayers.

Love,
P, J, C, and M

Friends in "low" places

You know that country song by the infamous Garth Brooks, that says "I've got friends in low places...?" Well, that is the mantra for the way I've been feeling lately, and it has been such a blessing. A few days ago a dear friend who has been calling me, and asking how I've been feeling, and crying on the phone with me, asked me if I would like to go to breakfast. We live about an hour and a half apart from each other, so we decided that meeting half way would work, and yesterday she and I met and had the best breakfast I've had in a long time. It was the best not only because the food was awesome, but because she truly wanted to spend time with me, and to let me share my heart. We didn't just talk about Cam's upcoming surgery, we talked about life, and about our kids crazy antics. It was a nice distraction. I even made it through the entire breakfast without shedding a tear, until we started talking about Cam and this upcoming journey. But the most beautiful thing, and one of the most selfless things another person can do is to join you in those fears, and that is exactly what she did. So we sat and we cried together. It was so helpful for me, not only to cry.... but to be joined by a friend who really does care. During that time she also shared something that just really warmed my heart. She told me that she has been praying for God to show her how to be the kind of friend that I need right now. That was just precious to me. You see sometimes during things like this, your friends dissipate. They seem to disappear, and a game of hide and seek goes on until things are more back to normal and you aren't as "needy." I get it. I really do. It's easier to be friends with people that aren't facing struggle. It's easier to continue on in your everyday routine and try not to think about the hardships that your friends may be going through. I'm guilty of this as well. Not so much since Cameron came along, but guilty non the less. Don't get me wrong, I have several friends who call me, text me, send me funny little messages that make me laugh, and that offer continuous support, but then there are those friends that don't know what to say, and that just kind of ignore the situation, and wait until everything is over. Like I said before, I get it. It's not easy being friends with a mom of a special needs kid. We are always facing some kind of battle that unless you are also a parent of a special kiddo then you just can't relate. That's frustrating sometimes I'm sure. Being a friend is hard work, and unless the person means that much to you, sometimes it's easier to just be the kind of friend that's there when things are good. You see in true friendship it is a selfless, beautiful relationship that sometimes goes through rocky moments, but that is always met back up with endless love and support. I have always wanted to be a good friend. I have always wanted to make sure that my friends know how much they mean to me and that I would be glad to anything they needed. I truly do love being there for others, and I am grateful to do it. So sometimes I do get sad when I'm in a crisis such as this and I feel so lonely, because it's easier for others to just not have to deal with my "neediness" than to embrace it. But not this week. This week I needed a friend and without me even having to ask for one she was there. So for that I'm grateful.  

We are three weeks out from our December 1st departure date. It seems like forever and not long enough all at the same time. I am trying to tie everything up. Insurance is always a pain and usually isn't worked out until last minute, which just adds to my endless list of stress. And then there is the quarantine thing. Since the boys have been battling colds/fevers they haven't been in school this week, and since Friday was going to be their last day anyway, we have just decided to keep them home from now on. Keeping Cameron well until surgery is so very important, and since it's right in the middle of cold season, school is just a smorgasbourge of germs.... and I would rather be safe than sorry. I hate that for the boys though because they love school so very much. They are both always so excited to go to school and to be with their friends. But I just keep telling myself this is temporary and hopefully we will be home and the boys will be ready to head back to school after Christmas break!

I'm finding myself less and less sick to my stomach everyday. I am still full of anxiety, but I have been able to control some of that with rationale and wine :) I know that God already knows this outcome. He has seen this through and is ready to stand beside us as we venture through it as well. It doesn't make my heart ache any less when I let my mind think about what is coming, but it has been providing some peace during this time of desperation. I have had the awesome opportunity in the past few weeks to talk to some college classes that a friend of mine teaches. The class is about Cultural competency, and I come in to talk about individuals with physical and developmental differences not only from my personal experience but also in my professional as well. I get to share about Cameron and how we have faced adversity, and I also get to talk about the individuals I have had the privilege of working with, and how all anyone that has a physical or developmental difference wants is to be treated like everyone else. It's a simple human desire to be "included" and "loved" and it is such an honor for me to be able to help spread that message. Also anytime I get the chance to share our story with others it gives me a sense of pride and wonder for the family and life that I have, because setting aside all of our crazy life drama, we are so very, very blessed. Paul and I have a marriage that will last until forever, and we have two beautiful boys that are just so incredible and wonderful, each in their own way, and we have a house over our head, and food in our bellies. Because of the love and support from our family, friends, and community we are able to provide the best care for our precious boy, and because of our love for the Lord, we know that this is all in his time, and in his perfect plan. I know this and I know it's true, but sometimes it's so hard to have this unwavering faith that convinces me that all is going to be ok. It's just hard!

For those of you that follow and are reading my updates, there are some specific prayer requests I would love to ask you to pray for. Right now Cameron is still battling a cold and so is Max, so please pray for quick, complete healing. Also please continue your prayers for Paul and I as well. We have a lot to coordinate for this trip, and as you could imagine it's quite stressful trying to plan a trip like this, and so we could use all the good thoughts/prayers/well wishes we can get! We know that your love and support is what gets us through, so please know how much they mean. Every phone call, text, dinner, and word of encouragement is graciously accepted and sometimes so desperately needed! Also we are so very grateful for everyone that has ordered a Warriors for Cam shirt. We only have two days left so if you haven't gotten one and you want one they will be available until Friday. We love ya'll and we appreciate your love as well!

Love,
P,J,C, and M