Has a moment in your life ever made you feel like the only thing on your mind is to take your next breath? I have had many moments like this...most times when a moment presents itself which causes uncertainty or fear, something kicks into my state of being and accelerates all my sences into over drive. Most times when i find myself struggling to breath I have the strength to summon's up my next breath and get past that certain moment.
I had a very scary moment a few weeks ago that changed a part of who I am. I didn't think i'd get my next breath, I even questioned if I wanted it. Sounds dramatic doesn't it? But when you've lived the life that I do...I think there may come a moment in life where you loose your battle. I was loosing...and I didn't know what to do. This particulair moment where I had to physically tell myself to breath, because if I hadn't..i would have lost conciousness. THIS moment was my scariest moment EVER! I can say that with certainty. I can come to this conclusion while looking back to even witnessing my son loose his battle with his life, where every breath HE was taking was becoming one of his last. You would think that moment would have been my scariest...it certainly was until this time in my life arrived.
Loosing control is certainly NOT something I am use too. Especially in situations where there is no choice but to gain strength, have faith. I have ALWAYS managed to have all of those things, and I have taken great comfort in knowing when i'm kicked down and our world is still, I WILL find my feet and stand. I WILL hit up whatever is pushing me in the face, without fear and without hesitation...I WILL WIN!
Until this time...
I had never believed there could be a higher power or strength that could take over a battle that I was fighting. I have always had Paul by my side and together we would be united. Unfortunatley this time, Paul was not with me...he was away for work and I was left for a short time to hold down the fort. Thankfully my mom stood by my side through this terrible time. This is a blog post about my mom's dedication and determination. This is about my mom's strength and love she has for me, my mom showed me where it is exactly I get my ability to be powerful, strong and assertive..she, my mother is a true form of compelling force. I have never witnessed my mother fight the way she did on this night in particular, she fought for me like no one has ever done before.
A couple weeks ago, Braden had become very ill with a twisted bowel. Without going into too much details (will follow with full story) I will say that we had..up unitl this point 4 nights of hospital visits and NO ONE wanting to help. Once again, this being a first time problem it kinda relates to the fact that Braden had become an adult. So lets go back to this moment in time when i felt totally terrified and completely exhausted...my losing battle.
Picture a mom..who has spent 4 nights sitting for hours and hours in emergency rooms while her son is struggling to breath, trying to sleep but so uncomfortable he can't even close his eyes. We had taken Braden in for what we thought was a bout of consitpation. They did some xrays in Cambridge hospital and treated him for just that. Lets just say...it wasn't consitpation..it was alot worse. We continued to take him to the hospital, then we were told the doctor's at Cambridge won't touch him because he is so complex. We were told to go to MacMaster University Medical hospital. This is a place we have been going to for 17 years...this was our home away from home. Our whole support system was here..all his doctor's, surgeons, nurses, specialists, physio, respiratory, occupational and neurological clinics were all HERE. We felt confident going into MacMaster that finally someone would look at Braden and find what was wrong with him. My mom and I drive there with Braden in tow...bi-pap hooked up in the van because his breathing was laboured. He wasn't able to support his own head and we had to have him adusted back as his stomach was expanded so far out we couldn't even push on it. His stomach was hard and distended, pain in his abdomen, his back and he wasn't responding to well at this point. Please keep in mind that this mom was EXHAUSTED...we had just spent 3 nights and one day in hospital emergencies. Even the moments we were home we didn't rest as Braden was in so much pain we were constantly readjusting his position and tried to make him comfortable..for 5 days we lived liked this.
When we finally reached the emergency doors of MacMaster..we were asked how old is Braden? I told them 18 years old. They responded with "we can't treat him, he's an adult!"..I told them to page a few people because they were familiar with Braden and we'd get this cleared up. While we waited for them to return, Braden once again was placed on bi-pap, we had him reclined and he was in terrible pain. Clearly the emergency staff could see this!
Unfortunately...things did not go well from here! They refused to see him...can you fucking believe that??? THEY refused a critically ill young man..actually a teenager from medical care and treatment!! I started to panic, I cried and told them..I'm not taking him anywhere else..this is the 2nd hospital! I could tell my mom was very upset but thankfully she kept her cool and comforted me while I was struggling to keep my composure! They obviously felt bad, and they took him back to a treatment room they called an ambulance and he was transferred to the 3rd emergency room we would see. I had to let my son go in an ambulance once again without his mom, he had to ride alone with the attendants and only hope that i would meet him in decsent time at St.Joseph's hospital in Hamilton. Mom and I buckled up, watched the ambulance leave the hospital and off we were to a whole new world. A new place that we have NEVER seen before with all new faces, new staff, new doctors and nurses. This was scary, it was overwhelming...I was beside myself with fear! So many things were running through my head. Who are these doctor's? Will they have enough experience with C2 spinal cord injuries, How could MacMaster do this to us? Will they trust me and take my word? Will they finally treat him? Where will I sleep if he is admitted? Who will do the surgery? Are they competent enough to handle all Braden's complexities? I can't even begin to describe the fear I was feeling. Keep in mind Paul was in Alabama trying to find a flight home. Mom never left my side.
Within 10 hours of another ER stay we had a bed on the surgical floor. He was given a semi private room..we went up to this room at around 11pm and it was a very dark, quiet ward. It hadn't hit me until this moment but where was I going to go? I can't leave him here..he's only a teenager. He has way to many needs to be left with just a call bell and a snoring man just a curtain over. I stayed pretty quiet, observed the nursing staff..stayed under the radar just hoping they'd say ok mom..there is a quiet room down the hall if you'd like to stay? I figured my mom would just head home and spend the night with Kailey. I wasn't about to leave..you see, after all these years of raising a mediacally fragile child it just works best for all involved for Paul and I to stay close inorder to nurse him back to good health. We have always worked this way and will continue to as long as he needs/wants us too. I will NEVER be too far from him...for the rest of MY life! If he needs me...I will always be near!
Braden's nurse introduces herself, she has an accent, she's young and is very pretty. Another nurse joins us in the room to get Braden situated and take his vitals. My mom and I move caustiously around the room, staying out of their way..trying to not make a noice. I think we were bothing unconsciously proving we were no trouble and of no threat. I'm pretty sure it was this moment we both felt things were about to change. I know for me...i saw it coming, and I was so damn tired...I had no fight left! Even though no words were spoken I could see my mom's body language already changing, whether she knew or not...I think she had a feeling all hell was about to break loose.
After the 2nd nurse left I looked at Braden's nurse and simply, quietly asked..if I stayed tonight could I just use this chair and sit by his bed? She kinda looked at me like I had two heads. She did look confused, and she responded with "we don't allow people to stay overnight, this is an adult hospital and we have to respect the other adult in this room".
Well friends this is the part that made me realize, i have grown and changed since I was in my 20's..more importantly I have gotten older! It registered VERY quickly what she was saying..and even though I have never heard those words before I knew exactly what this meant. So many things were rushing through my mind...who is going to turn him tonight? Who is going to be there to comfort him when he has pain? Who will take care of his personal needs? Who will stretch him when his stomach hurts and raising his knee's is the only thing to relieve his pain? OHMYGOD!! What is happening.
Immediatley I panic, and at this moment have NEVER felt this alone...this is the moment I realize Paul is NOT here. What am I going to do...I literally felt SO much panic. What if he get's worse through the night? What if he drops his call bell and can't call out to them? He's not strong enough to yell loudly..THEY WON'T HEAR HIM!!
My body hurt with exhaustion..I hadn't slept in 5 days, and this was the very moment I felt every bit of pain and anguish. I left the room, put my hands over my face and went to the floor. I CAN'T LEAVE HIM!! I have never left him! OK, so a bit of back ground here for my anxieties about leaving him. I mean he is 18 years old..considered an adult in the medical world. But what most of you don't know or realize is that when Braden is sick, his needs multiplies..and this leaves him incrediably vulnerable. Even though at this moment, Braden was stable..Paul and I are very aware of how quickly that can change. We have lived with this our whole lives..these people are literally putting his life at stake and I don't have the energy or power to fight this battle. This was the first time ever...i have felt this way.
While i was crying, with fear raging through me...thoughts of losing him running through my mind I heard my mom!
She went into action! She told this nurse that "I was not leaving him", she explained that this is the first time in this hopital and that I was scared to leave him. Braden's nurse agreed to get the charge nurse. I continued to stay out of this conversation as I literally didn't have the strength any longer...5 days of no sleep, fear and frustration was catching up at this exact moment!
When the charge nurse came in, my mom once again went into protection mode..she KNEW that I needed to stay and even though her voice remained strong...i heard the fear.
Maybe it was the fear she felt that made her react the way she did..or maybe she felt her child was in so much pain she had to do what she could to make this better. My mom calmly spoke to the charge nurse, and this nurse continued to stand by her "rules", I heard my mom explain that his needs are demanding, we have never left him, this is a new hospital, that I was scared. We have had a terrible few days...she didn't stop! The nurse continued to say no...SO my mom got a little louder, and I was still not believeing what was happening. My mom bargained with them telling them.."she will sit quietly", "she is a nurse", "she won't make any fuss"...I could see this charge nurse looking at me and i could tell by her face she was hearing my mom. Finally with the words from my mom...the nurse agreed to let me stay..with one more comment..she looked at me and said.."don't you want to go home and rest, so you can be better for him during the day?"...I agreed with her, but I said that's just not how we work in this family! We have a system, we know what works and leaving him isn't an option.
Many of you reading might think, well your mom just spoke to them..what's the big deal? My answer to that my friends is that I was unable for the first time EVER to speak up for myself and get what I want!! This was a new role for my mom, one she hasn't had in a very long time. It was pivitol moment for me...when I heard my mom..I felt safe, I felt like she was going to fix this. I am a 40 year old woman and my mom was fighting my battle and doing an amazing job at it too! It was such a difficult time, I just couldn't gather the stones to throw inorder to fight. I was too tired, I was done! It was my mom who, after spending the whole day in the hospital with me..managed to find her strength and ability to stand ground and "go to the mattresses". I haven't had a moment like that probably since my first grade school fight over 30 years ago! I haven't needed her to come to my defence in many years..although i know she is ALWAYS in my corner...I have always had the ability to defend my own beliefs, children, marriage and choices.
Not only did I get to stay the night, the nursing staff game me a key to an actual private room so that when Braden had moments of comfort..I could lie down and rest. Things worked out perfectly. I was a happy mom and Braden was very relieved to have had me close by.
Overall the stay at St.Josephs hospital turned out to be more than pleasant. They did an amazing job fixing our boy and accomadating our family. We ended up getting a private room...which they actually removed a patient from this private room to give to Braden. It was so wonderful, it was the best way to end out horrendous experience. The most important part of this hospital stay is that in the end they did trust Paul and I. They had faith that we were there to nurture and nurse our son back to health. We were provided with space to continue to be a family. We were respected and had much privacy, they trusted us. We as a family work best this way. Paul does night shift and I do day shift. We have been doing it this way for 17 years. We meet up in the morning and share a coffee..I kiss Paul goodbye so he can get some sleep during the day. Paul returns in the evening..we share dinner, a movie and a few laughs...we kiss once agian good night. I head home/hotel and get some much needed sleep. We have done it this way for so long...if we were to change it, we'd probably fall apart. I think we would both admit that when we live this way..we have moments of sadness, we miss eachother, we miss Kailey and we miss our life. I think we would both agree that it takes one moment when we are all home and finally together sitting outside in our backyard with the sunshine heating our faces..that we are blessed. We find the beauty and the pleasure in all the small things life has to offer because we understand how quickly it can be taken away.
I ended up being on my own for 2 days...waiting for Paul to return and I stayed 2 nights at Braden's bedside. I don't have words to express the feeling I felt with having my mom at MY side! She was my voice, she has been that before but this time it was different...I was not able to speak, not at all, not a little.
With all my heart mom ( I know you are reading) you have tought me so much, you have taught me in the moments that I was paralyzed, I have you...you haven't left, you never will and with that...I found my strength, my voice and I found my fight! Thank you for being my mom...I am the luckiest!
I also really want to mention that my baby girl was a true trooper through all of this. She did a fantastic job here at home, she continued to go to school with thoughts of what was happening with her brother. She even went to work all 3 evenings..i can't imagine how difficult it was for her not knowing what was going on all of the time. She didn't demand any of our time or attention, she didn't at any time make us feel bad or guilty about us not being there for her. It was also March Break and we were suppose to have a trip to New York City, it was to be a fun week with friends and family. We will make up for this..do not kid yourself, everyone who know's me...know's this trip will happen! Kailey showed so much maturity and responsibility, she was amazing and I'm lucky to have her for a daughter.
Thank you Kailey for being so wonderful~
