It's A Need
I've found a growth in my want to help more people understand the mind set and thought process of a person who suffers. As I learn to advocate more for our mental health community, I see this need rising. Its not a need to make you all feel my pain. Its a need to help others switch perspective, even just for a moment, to help another get through a struggle. Its a need for more compassion in this world. And like a recent and quite relevant phrase flying around our facebook and Youtube pages right now, "We need to help each other." ~ Jimmy Kimmel.
I Draw My Own Child's Blood Now
I need that phrase to strike you and change your perspective, for even just a moment. Think about a little one you know, may be your own child, grandchild, niece or nephew and if they are not a medically complex child with a cvc, how do you think you are going to get blood from them? Pretty gruesome to think about, right? Pretty horrific to imagine cutting them open with a sharp object, poking them while they are awake... over and over, day after day. This imagery is what enters my mind every single time I lift my daughter's shirt and expose her cvc. This visual image of her being cut open for 13 surgeries and 7 cvc lines is right in front of my face when I have to draw the Ethanol out of her line and the bright red blood fills the syringe in my hands. Because it still did take, cutting her open with a sharp object and hundreds of pokes in all of her limbs to acquire this central line in her chest that I draw blood from every. single. day.
This is the mind of someone with PTSD, This is the thought process I battle every day of my life. It is gruesome, it is my reality, it is also Bella's reality...and until we face that reality we can not heal and until more understand from our perspective, we can't heal as fast.
The Battle Between Heart & Mind
With the rarity of our past 3 1/2 years since Bella arrived into this world, healing is something I need to work on every day. The hopes of a known fix are long long gone and to really, truly be happy and ok I need to work on healing every day and know that facing the reality of how my daughter's life will be, will help me suffer less. The little things have always been HUGE to me. I mean I don't even take breath for granted anymore! Sometimes I'm literally just sitting quietly and it springs in my mind to thank God for my ability to breathe...most times it brings me to tears if no one is around. I've always been quite sensitive, reading into things too much. And now, now?! ...can you imagine what I'm like now? One word (well two words), "Closet Basket-Case." I say 'closet' because you can't just run around 24 hours a day like that, exposing all that emotion to everyone around you, besides... Oprah did enough of that for us in the 90's, we've had our dose of emotion.
So my heart and mind battle now, like never before, and now I am learning to understand the TRUE levels of my emotions. Sort of like someone saying the word 'literally,' literally before every sentence they say. Or like if you over exaggerated everything and believed it. So I'm learning...stay with me now, I AM LEARNING. It's not easy but when a person has on going Complex PTSD, not typical PTSD it's a whole new ball game when trying to end the battles between your own heart and mind while trying to stay happy and sane. If I could help you understand in another way; I often take things quite differently now, while needing a much higher level of reassurance and empathy. Now, many may think, "Gaww Kyla...it's been 3 years, get over it." But that is so damaging and actually makes it even more difficult for the person who is already trying so much not to annoy others, while fighting through their struggles. And I'm no different than a person who maybe only had one incident that scarred them and now they suffer. Just because our rare life of struggle is on going doesn't just mean it automatically gets easier just like someone who has only suffered once. I think if the scarring or mental struggles are ongoing, that only means the battle gets worse and the sensitivity heightens and people like me become worse by trying to bottle even more in, because waaaay back when, when things first went bad all the love and compassion was poured out to them then...and people are tired. They grow tired of always having to lift you up time and time again. So then you begin to feel like a burden, constantly. And you always feel like you annoy people and that BECAUSE your struggles are ongoing...you're even more of a burden. So all of this builds up to the point that even when someome simply uses a ever so slightly different tone with you, you actually feel like they are shouting to the world, "What an idiot you are!" and have become.
So if just for a moment, you can grasp the battle between my heart and mind and switch your perspective for a quick sec, please know it helps me through this, it helps me heal and in turn helps Lyle and Bella as well.
Me Trying Other's Perspective
So... I think I've come to realise what 'Autopilot' really means. And many many people are on Autopilot. Man, a lot of you run on Autopilot...do y'all realise? I think I see this as extremely evident because I'm running on "Fully/Boarder-line Too Aware." This of course being me working on my sensitivity levels. But I think I need to note this, get it out there because I think 'Autopilot' can be quite desensitising for others. Let me explain... Let's bring this convo back to my good 'ol rant about when people ask me, or say, " How are you?" (My most hated question. It really grinds my gears.) A lot of people ask this question because they are on Autopilot. They don't even realise the words rolling off their tongue cause that's what autopilot is. So fine, I get it and I'll speak your language with the same 'ol, " I'm good thanks" reply. Until.... Until I am SO NOT GOOD that I don't care how rude or annoyed I sound, I will give you my 'Too Aware' response and tell you how it really is, or to shove that question you know where because you're on autopilot and its a stupid question. Ugh, It's fine... I'm trying not to bark at people so much anymore but I think that will come in waves depending on how well Bella is feeling that week or what curve-ball is thrown at us next.
Where Have We Come From in Two Months?
So ya, it's been 2 months since my last blog post. It's been since March 22nd 2017 since we got home with Bella from our 4th Long Term Hospital Stay...637 Days in Hospital total. It's been since Jan. 25th 2017 (3 months) since Bella has not been allowed to eat. But her bowel function has improved and progressed and now she is allowed more than one juice box in a 24 hour period. Now she is able to drink half strength formula and her bowels are tolerating it and doing very well with the increased volume she is allowed to drink! Bella is truly thriving right now. I know that may not be apparent since sometimes when I write or speak I focus on the very real fact that our worst nightmare came true: Bella needed another surgery, a bowel surgery and all the horrific unknowns around it. The nightmare was basically her entire first year in hospital, happening all over again. But since Bella has moved her largest mountain yet, she is at her best. She is growing, thriving, very active and supremely happy.
Lyle and I completed our classroom teaching and training for administering Bella's IV TPN at home, back in March before we brought Bella home. We once again upgraded our medical parental knowledge and developed more skills to help our baby girl enjoy home life once again. But this time it has come with even more sacrifice for Lyle and I and to be honest it's an exhausting, heavy load this go around. But hey, these are the cards we're dealt right, and we are going to roll with it. I'm looking forward to all the 'little things' that my hubby does to keep my chin up with a smile on my face. My gosh, I have an amazing man. No we may not ever get out on a trip together for over 24 hours away from Bella...but for now he does an amazing job at helping me look at the bright side. We can be home, Bella is alive, Bella is thriving (in the most medically micromanaged way possible) but thriving! And he sees this and he sets up little at home wine night picnics for me. He gets ready to take charge with Bella when my brain has shut down for the day due to stress, he's there. Quite simply he is there and I'm a blessed wife. So shout-out to all the single moms out there. Your strength and ability to do any of this medical mom life alone, blows my mind.
From Immunity Jail to Ostomy Jail to IV Jail
Well for starters, Bella is not really out of Immune System Jail given the fact we have not been given the go ahead as of yet to stop her monthly IVIG (immune booster) and start vaccinations and immunisations... like we were almost, pretty much promised could happen this month...it's not, and I'm waiting for a phone call from Bella's Primary Immunologist for clarity on this next week. I'll touch more on her Immune System updates in a bit. So for now it's like she still has an ankle bracelet on with a jail warden following her around 24/7. And now, her ileostomy pouch is just as restricting most days and it makes me so angry that she just went from one medical condition restricting her freedom, to another. In the past week or so the ability to keep Bella's ostomy pouch on and secure has improved...but just in the last week. The struggles we have had with this dam pouch, 6 changes in one day, every day, the expense of that and the fact it keeps Bella restricted for hours and hours has brought me to tears. I literally broke down in tears for all of Easter Sunday because the pouch changes kept Bella from playing with her cousins, for over 6 hours of the day... it was horrible. Oh and this doesn't include the hours shes attached to an IV pole for her TPN. I never thought there could be a more restricting environment for a child to grow up in besides the 200+ days we spent on isolation inside a hospital room. But there is! Turns out, shit CAN get worse. ** large eye roll. The hundreds of days on isolation pale in comparison to a highly active 3 year old being tied down by a leaking stool pouch inches away from the cvc line that goes directly into her heart, connected from a towering IV pole over her tiny body being tangled through the connected lines.
I am going to face this reality to heal from it. I will find a way to make this reality a happy experience in Bella's life instead of a burden.
I am going back and forth through every ordeal like a never ending ping pong match, but hey many things are still very fresh so it'll take time, but I'll get there. I will get to the point where I'll initially see less of the negative and more of the positive. I'll learn to enjoy the moment, be in the moment because I have NO other choice. When I panic and anxiety takes me way too far back in the past, or worry and stress fire me way too far in to the future...the anger and fear is unreal and I become paralysed, I can't function. But when I can ground myself quicker, see whats really happening today, just today, just this hour and realise something is NOT has bad as the past made it out to be, or the future thinks it could be...no, its now and its okay and its doable. I can also breathe slower in the moment and pray. Like I mentioned earlier, I am able to not take so much for granted now and just in the moment be thankful. Instead of screaming at the pouch for restricting my daughter for the tenth time that day, I can teach her it's name, help Bella care for the medical appliance she needs on her body because they help her live. We come up with cute names for them and I can make funny songs about them instead of crying about the life she could have if she never needed them. I'm learning.
What It's All Like For Bella
I'm in awe of how well this girl adapts to what I know most adults couldn't. She's so smart, so in tune, aware and keen. I mean she'd gone from starting her life breast feeding for 3 short days to an ng hose down her throat, to being told she's not allowed to eat or drink, to getting over severe oral aversion and being allowed to eat and drink whatever she wants! To once again, nothing...not a drop. And she handles it. She handles it. I'm not sure I can even explain her strength in words, but my goodness its astounding.
My sweet girl wakes up every morning in her big girl bed, happy and shouting, "Mom... I'm Awake!" She knows shes connected to the IV pole and if she dare jump out of bed that thing would come towering down. And that's no joke, in fact it's the reason I can't sleep most nights. Unless I bolt it to the wall, if that thing falls it could rip the IV line out of her chest and God, I can't even go there. So I'm just going to be calm in the fact that at the young age of three Bella 'get's this' very very well.
So I hop out of bed and, well sorry, let me rephrase...I peel myself out of bed and head into her bedroom where she's usually sitting up after a great sleep. And right there in that moment I need to take a breath and put on a face. Bella is so smart, even if the look on my face changes..she can see and feel the fear, or anger and sadness in my eyes. Even a simple sigh from my breath can send her in to crying a waterfall of tears because she sees in that moment I am upset about something. Ya I'm not kidding you, this is EVERY morning. And it is every morning because of that relentless devil ostomy pouch that is helping me learn to be calm in the moment (I say that while gritting my teeth) and not shoot my fear and anxiety through the roof the instant I see that it has leaked all through her pyjamas.
In that moment of jumping into a happy morning song vs bursting into tears wondering if any stool from the pouch has touch her cvc line... Bella buys my facade and can enjoy her first ten minutes of waking up instead of crying because I am crying. It's tiring and it still wears on me heavily throughout the day. When she first wakes up and wants to play or asks for a drink of milk and I can't even let her move until shes clean or I've had a chance to disconnect her IV lines. It's so hard when she just says, " Mommy I wanna go play." and I have to tell her no so that I can fix her pouch or tend to her connected IV lines first. It's just hard. I don't want her to have to have this life! It breaks my heart in half every single morning.
Looking Ahead
I cried to my Mental Health nurse today as I broke down about the fear that drops by in my mind at least once a day. I thought the possibilities of anymore nightmares related to Bella's bowels were over when it came true on January 26th 2017. But they arn't. There's another nightmare I battle every day. I try not to let it take up any of my time but sometimes it lingers and my gut turns into a huge knot. And it's this: The possibility of Bella needing a bowel transplant.
This fierce little girl beat all odds by surviving Septic shock twice before her BMT for SCID. And that BMT saved her life! And then Hemalytic Anemia came along and she beat that (not to mention the 13 surgeries she also conquered) and now after 2 years post transplant we wait for the chance to achieve the ultimate goal of being safe which is to be immunised and vaccinated. She is still fighting so hard to get to that point that the thought of a bowel transplant ripping that all away breaks me into a spiralling fear. She would be on immune suppressants for the rest of her life never achieving that ultimate goal of full immunity protection.
Thankfully the progress her bowels are making and maintaining keep that nightmare from entering my mind too often. And I continue to pray every day our brave Bella will never require a bowel transplant.
Currently Bella's GI doctors help keep us focused on the relevant progress and where that takes Bella in the near future. Bella is on her way to eventually coming off of TPN (IV nutrition) fully and solely thriving and growing from just the specialised formula she is currently drinking at half strength with water. In a nut shell we will get Bella off IVs and onto a milkshake only diet. We don't need to look past that right now because just that goal alone may take a few more months. So we don't know if Bella will ever be able to eat solid food again, we arn't sure if they'll be able to reverse her ileostomy yet. We do know that once Bella's bowels show they can handle full strength formula, then we are closer to having her come off of TPN and then we also start discussing her next surgeries. This will include discussing time lines around when and if we trial solids or when to do her mapping surgery. The surgery where they biopsy her entire small bowel. We will then also discuss when may be an appropriate time to try the surgery where they reverse her ostomy and she goes back to going poo like most of us do.
For now Bella remains on IV from 7pm-7am, only allowed to drink and lick a sucker here and there. I have morphed into somewhat of a fasting closet eater. This is how I get through the day until shes in bed and then I can prepare a supper once and a while for Lyle and I to eat after Bella is sleeping. It's still bittersweet to see her request and almost beg for foods. Half of me falls apart having to constantly tell my child I can not allow her food, but I am also hanging on to hope that one day she can eat again and she hasn't given up on that want and desire to eat. We are trying find ways to support her through it, I mean it's going to happen..she is going to see people eat or run into moments where she catches someone eating something she herself, used to love to eat. I mean I embedded the love of food into her mind. That was my doing. We worked so hard to overcome that oral aversion. I worked tirelessly to make her fall in love with healthy foods, and want them. Now I have to ignore that while she still remembers the taste and smell of ALL her favourite foods? How do I not ruin this child's mind?! It's an eff'd up game but I am doing the best I can and thankful for how smart and aware Bella is.
Immune System Update
It has been 2 years since transplant, 2 years since her BMT! And Bella has still not had the chance to be fully immunised and vaccinated. We still rely on the mercy of others vaccinating and immunising their children so that Bella is not exposed to viruses and diseases that could kill her but not a child that has a fully working and protected immune system. I typical SCID patient that has been cured by a BMT would have completed their vaccs/immunisations by now. Bella has not because her BCells and in particular her Memory Bcells have not come in yet. When you don't have Bcells to work with your Tcells, you don't have a working immune system. So we wait and we wait some more. Problem is that back in March her Immunologist was quite confident that Bella showed signs of proper Bcell function coming back. But a recent phone call from her nurse stated otherwise. So I am waiting for clarity on this and a phone call next week to clear it all up. For now it looks like Bella will continue to require IVIG monthly to give her the protection that her immune system can't yet.
Exciting Side Note!
Since it is over 2 years post BMT we are now allowed to contact Bella's bone marrow donor! YAY!!!! Remember all those amazing letters you all wrote to her, we have saved them all! We also have that necklace ready for her and so so SO many stories! Can you imagine her reaction after she gets a chance to catch up on my blog!? I doubt many Bone Marrow donors get to read about the 2 years they missed out on, just because I don't think a lot of recipients or recipient\s parents blog. crazy to think about! So soon, Lyle and I are going to take time to email her, send her photos, etc. I will not share her information until I know what she is comfortable with...cause I mean, the Bella Brave nation is kind of massive. ha ha. So stay tuned for updates on this through our Facebook Page: Isabella's Mustard Seed.
Other TidBits
I need many friends near and far to know how thankful I am for you and all you have done for Bella, Lyle and I, ever since she was born in 2013. Often, memories pop into my mind about something someone has done for us and I just feel overwhelmed with wonder if I have thank'd them enough or at all! Our life has been on high-speed medical light-year travel from day one in hospital and if I have ever missed a comment you made or question you asked or gesture you gave, please please know I am so very thankful. So many things, gifts, prayers, letters,messages that people have given to me or Bella over the years pop in my head daily. I reminisce about so many of them and I get sad that for many I haven't had time to reply. Often in the worst most exhausting moments in hospital so many people have reached out and helped us A LOT..and its during those times Lyle and I are exhausted by fear, unknown and medical demands that by the time we realise how we can do more than just verbally say, "Thank You, " it's been months. So I just hope that all you amazing, loving caring people in our lives truly understand how you help us immensely and that you truly lift us up through this life for our daughter. Thank You.
