Head stuck in a cycle, I look off and I stare
It's like that I've stopped breathing, but completely aware
'Cause you're giving me a million reasons
Give me a million reasons
Givin' me a million reasons
About a million reasons
It's like that I've stopped breathing, but completely aware
'Cause you're giving me a million reasons
Give me a million reasons
Givin' me a million reasons
About a million reasons
Let me explain:
When an outsider, and by outsider I mean any family member or friend who is not me or Bella, (that's a lot of people) has NOT been through what we have been through (again, practically the entire world) begins to feel tired by seeing what I post, roll their eyes at the ongoing story or merely not bother to care (which is fine in your own right)... I would get sad, feel self doubt and retreat into my cocoon of, "Ya Kyla, Shut the eff up, others have it worse." And I would begin to feel ashamed and just alone. No more! No, I'm not doing this to myself anymore just because you happen to go on Facebook one day out of the week and catch up on my many posts I shared lately. Those posts coming from a mom who just wants to give other moms hope by showing them our little warriors can overcome obstacles. No! I'm not apologising for this and I will no longer feel bad for fighting the fight for my daughter and her health. So simply, here's my middle finger to all of those who could care less because our sad story continues. Carry on in your own right, but I will continue to share so that I continue to help that one mom who may be struggling in the same way, or that one dad who struggles to find ways to help his wife who exhausts herself over the care of her sick child OR the chance at receiving help for Bella when her own specialists have run out of ideas.
Okay, okay, you're probably thinking, whoa, whoa whoa Kyla...chill. Ya, I've taken that approach before, I've apologised for posting a lot, or I have been ridiculed for tiring people with my lengthy posts. And all I'm doing here today in this post its telling those people... "too effing bad." Unfollow me if my story tires you, but I will continue pouring my heart out, weather you rolls your eyes are our journey or not. And for those of you who 'get it,' thank you. Yes, there are those out there that quit caring about our ironically, long and rare journeys. So, we don't need them, we have each other to hold on to. Sadly us "rare condition" families often live miles apart, yet share the same pain and the internet is our only connection. So for the rest of yaz, just get out of our way if you can't help or clearly see our purpose to strive to help prevent struggle for others from our own experiences.
Here's the other side, that I think about a lot, and what gives me drive. Writing is therapeutic for me. It helps me deal with and process the hell of seeing my child suffer. Also, YOU have not been in my shoes. And sadly I'm realising no one will ever understand until they are, or quite frankly, care. How sad it that. But I get it. How the eff can things go wrong for someone for so long? right!? I know!!! You don't think I know that?! You think I want to write one more flip'n blog post about how my daughter still suffers?! But she is, and I will write until my fingers bleed if it means that someone reads this, notices how I am struggling and provides me a solution I have not yet tried, and thus bring Bella relief.
I saw a mom share on Global Genes today about her son's rare disease. She simply wrote, "I won't stop until I find help for my son" And so she was asking people to share and share and share her story in hopes to find a cure or even support for her sons rare disease that causes his body to reject all food. And so I'll continue on passed your snide comments about how much I write, or how many photos I post and push, until Bella has sustained relief. I wish you all could understand what it would mean to me to never have to write a post on here again. Would you get it? Get that it would mean Bella is fully healed, get that I would never have to ask if anyone else had ideas on how to relieve her pain, get that I would never have to post her 15th surgery or that there are no longer risks because her immune system doesn't work properly.
Okay, that's off my chest, on to updates.
Jan. 14th 2017
Day +660 Post BMT
On day 331 at Home.
Uh-oh, running out of breath, but I
Oh, I, I got stamina
Uh-oh, running now, I close my eyes
Well, oh, I got stamina
And uh-oh, I see another mountain to climb
But I, I, I got stamina
Uh-oh, I need another lover, be mine
Cause I, I, I got stamina
Don't give up, I won't give up
Don't give up, no no no
Don't give up, I won't give up
Don't give up, no no no
I pause for a moment after Bella tells me, "Mommy, my tummy hurts." And I look at her right in the eyes (with tears swelling up in mine) and I say,
"Hunny, don't give up, I won't give up, don't give up."
And she replies,
"Ok Mommy."
I go on to find ways to explain to her why her tummy might be hurting or why she has to fast an hour before a medicine and and hour after the medicine, while she looks at me with tears in her eyes because she just wants one little snack,
"Juuuust a little bit of snack mommy?"
And then I have to look at my brave girl, my baby girl who fought so hard just to learn how to eat by the age of 18 months and then fought another 6 more months so that by the time she was two, she could drink.
And I look at her in eyes after she has fought so hard just to learn how to eat and drink without tubes, and tell her,
"No, I'm sorry hunny you can't eat right now, you can't drink right now."
And now this IS a pain I would wish on my worst enemy because its breaking me. I can't do this anymore. I'm begging God day after day to stop this torture, please. My God she worked so hard to just be able to eat and drink and now, because her doctors don't know what will help her yet, I have to give her a medicine that requires her to fast.
I just don't know how else to describe this other than, pain.
And so then the ups and downs continue with Bella's bowels and the trial and error that still comes 3 years later, 5 bowel surgeries later, having been born with Hirschprungs and enduring a full colectomy later, and 3 different GI specialists later... we still struggle.
Uh-oh, running out of breath, but I
Oh, I, I got stamina
The distension has worsened to the point that most days I can not buckle Bella in her car seat. I have to take a tape measure and record her abdominal girth every morning... doctors orders for monitoring how the new med is helping. She'll cry because she falls more often now because she can't get her balance back. Quite often she'll ask me to put the couch pillow on the floor with a blanket so she can lay her self down, tummy down, for relief. She'll lay there silently, letting out sighs. This is not what a three year old, who has already fought so hard to live, should have to be going though. Its just not fair. I've lost count of how many moments her and I sit in tears, at home, alone, because she is hurting and I can't fix her.
It's like I am watching a bully pick on my daughter while my hands are tied and my mouth is taped shut.
I can tell you I thank God daily, I pray daily, that I have a hard working husband to support such a life that involves me having to give up my career to manage my three year old's pain, daily. I pray the day will come when Bella can feel comfort all day long. When I can make plans to go for dinner with my husband and not worry that Bella can't be babysat because she'll vomit, or that no one knows how to vent her Gtube to prevent a vomit, or have to wonder how I would teach someone how to vent her G-tube while she vomits. Could you ever imagine saying what I just typed?
I bow down to pray
I try to make the worst seem better
If you follow my Facebook page "Isabella's Mustard Seed" you'll notice that's where I post a lot of the "ups" in our life. I can see how it may get quite confusing when I save all the "downs" for the blog. To be honest I do not have the energy to explain the "downs" on Facebook and with the way people respond to posts on facebook, I'm not prepared to deal with all the questions that may arise from a negative post on there either. So I save a lot of my venting for my blog here. You may have noticed me posting quite a bit of charts and questions on there though. I'm so thankful for the medical parent community on facebook and how when questions are posted, the responses can come quick. That has helped me so much. Thank you to my medical parent community who have been able to put many of my worries at ease when it come to helping Bella.
Hold
Hold on
Hold on to me
'Cause I’m a little unsteady
A little unsteady
Switching Directions; Genetics:
When I raise my face and hands in the air and ask, "WHY?"
The answer I have received, what I have perceived:
I, her mom, gave the severely damaging mutation to her.
So let me explain, because often genetics can go over peoples heads. But in a nutshell, I try to tell myself the rare mind-blowing, no specialists can figure it out, never seen before, never documented before, super rare gene mutation.... is not my fault, but it is.
Recently a lot more has become clear since our IVF doctors have needed to give their Genetics Lab all our genetic information to ensure our next child is not born with a deadly disease. The lab required clarity and then confirmation from my end before going a head with more testing. And so what I guess I am saying is that when something is repeatedly told to you to confirm it is correct, You can't brush off the pain when its said over and over, out loud, multiple times, for clarity.
"Kyla, Your 'Likely Pathogenic Varient Mutated Gene' is the damaging mutation that has caused Bella to have what she has, the deadly combination of SCID, CHH and Hirschprungs."
Wow...ok, yep. Just give me time to swallow that dagger.
"Yes, so my gene in combination with Lyle's confirmed pathogenic varient which causes Bella to have CHH, yes his has been reported in other CHH patients. "But yours has not, no Kyla, yours is the rare one that no one in the world has seen before, its the damaging one and therefore first of its kind." Hence why Bella doesn't have one of the 20 types of SCID, she has the worst they have ever seen, one that has not yet be recorded in any medical journals.
I later found out that when they find a new mutation, one never discovered before, they can't record it in any medical journals or documents until a second one is found in someone else, so they can compare and confirm what it does.
So WHY was Bella born with a rare form of SCID, combined with a severe case of Hirschprungs and CHH... Because I host a never seen before, severely damaging mutated gene...that's why.
Pardon me while I go choke on this for the rest of life.
A little unsteady
There's Some Good In All This
This brings me to more good news, it has been 2 months now that Bella has (for the first time since she was born) been off all antibiotics! Those 3 antibiotics she was on for the MAC bug treatment were done Nov. 17th 2016. The CT and MRI in November showed her doctors that there were no lymphnodes inside her that had enlarged. And the ones they had been tracking specifically had either gotten smaller in size or did not enlarge. Which in-part tells them the MAC bug is dead and no longer a threat to her growing immune system.
We still can't say Bella has a fully functioning immune system because we are still waiting for her Bcells to come in and work with her Tcells. You need Bcells to work with Tcells to make a working immune system. Thankfully Bella's Tcells have remained 100% so that she can fight viruses. But she needs her Bcells to come in to normal range so that she can fight bacteria and so that she can build antibodies and be vaccinated. They will test this level again in February. Please continue to pray for Bella's new immune system and that her Bcells come in 100% working with her Tcells so that she does not require IVIG for the rest of her life.
More To Come!
PTSD sucks people. I need to make a shout out to my medical mom friend Stephanie, who's son is waiting for a bowel and liver transplant to survive. This week hun, you lifted me out of a horribly dark rut with one word. With one word you help'd shake my mind out of a hopeless state.
"Situational"
I've rejoiced so loudly on the good days. The days Bella is happy and not in pain, I shout it on the mountain tops. I've shouted the joy so loudly, thinking this is it! We have made it! The pain is over...and then another blow comes. And those blows after the rejoicing are knocking me down for longer and longer periods of time. So much so that this last blow left me in a state I never want to go back to. The pain Bella has been in for the last week left me with so much fear I was considering medicating myself just to get by. But part of me knew I really didn't need to go there, yet more of me was so exhausted I didn't care what it would take to be happier, to not feel fear or anxiety for just one minute of the day.
And Steph, you gave me this one word that help me realise what I needed to do to get me through the next blow, the next downfall where my daughter needs me alert and able. You helped me realise her bowel issues, though unresolved, are situational and I can regain the strength I need for the next blow, when she is going though a good period. Even if that period is less than 12 hours, I know what I can do now when this is situational. Thank you hun, what you wrote to me in that post helped me immensely, thank you.
Whats Next
We are encouraged that our Swift Current medical team is attempting to provide Bella their ability to conduct her IVIG infusions here in our hometown city! Thats a big step for our hospital and I hope it works out for us. Its a bit nerve racking to work with such a complex medical child when most babies are rushed off to the nearest capable centre, 3 hours away at the Saskatoon PEDS ward or NICU. So we will find out next week if our Swift Current team is up for the task. But I am thankful that they are considering it, it saves us travel time to Calgary for Bella.
Bella's GI doc has been on the phone with me this past week and we are back on a med to help her bowel motility while we wait for her to get an ecg so that she can trial a different med for her bowels, that may work better than the current one she is on. Unfortunetly the next med can cause heart issue so Bella needs an ecg of her heart before they can allow her to trial this next bowel med.
And then come February 22nd, that day will hopefully be our last day needed in Calgary for at least 3 months! All of her specialists will have this day to review her progress or current issues and give us the means to carry on with out them for at least 3 months.
Here's to New Beginnings, conquering the situational and keeping Faith through it all.
I'm free to be the greatest, I'm alive
I'm free to be the greatest here tonight, the greatest
The greatest, the greatest alive
The greatest, the greatest alive
Don't give up, I won't give up
Don't give up, no no no
Don't give up, I won't give up
Don't give up, no no no
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