Advocating for your child in the world makes perfect sense. We do it every day. We advocate for our children in daycare, school, sports, the medical world and plenty of other places. As much as people out in the world may like your child or even care about them, it’s not their job to take care of things and to be sure your child gets ALL that they need.
I am fine with this. It really doesn’t faze me. I am used to it, and I am good at it.
What I am not ok with and what I am not so “good at” (read tactful at) is advocating for my children within my family. I may find it mildly frustrating when interacting with friends or acquaintances who don’t really “get it,” but when I have to advocate for my children within their own family I find it downright offensive.
No, I don’t expect anyone else (not even family) to have done the research – the countless hours spent reading medical journals and having to research the research just to grasp what it is saying. What I can’t seem to understand though is being treated by my own family the way the doctors treat me – like a hyper-vigilant, hypochondriac, who just needs to let go of control. Oh how I wish it were that simple. How I wish I could just give them food and it would all be ok.
No. This is not so simple.
BabyM and BabyR have something called Food Protein Induced Enterocolitis Syndrome (FPIES). No I am not making that up. This is ONE of their diagnoses. What does it mean? Who knows what it means. No one knows what causes FPIES. It could be very bad – or they could grow out of it. What is the worst case scenario with this FPIES? Well there are those kids who eat a food – react to it – go into shock – AND DIE. That is possible with FPIES. No it is not common, but it does happen. If death is the worst case scenario one can only TRY to imagine what the more common symptoms of the disease are.
One phase of the waiting is over. All the blood and stool tests came back normal. Now phase two of waiting begins. We schedule scopes for them both – endoscopy and colonoscopy. – and then we wait some more for the results.
Crohn’s Disease? Inflammatory Bowel Disease? Eosiniphillic Gastroenteritis? Ulcerative Colitis? No definitive findings?
I know God is in control of this. I know HE is the great healer. I just ask for those who don’t understand to ask questions or simply trust that we have done (and continue to do) for our children what they needed us to.
Thursday, July 29, 2010
Sunday, July 25, 2010
The Trick - Cease Striving
It is becoming more and more evident that we are at a turning point in this journey.
About ten days ago we took the twins to their GI specialist. In preparation for the appointment I had decided that I was done. Finished. I decided that I could not – would not – leave Dr. D.’s office without him ordering more tests. After the first update and exam I could sense that he was about to give me the thumbs up – we’ll see ya next time… So I started advocating right then and there. He fought me – treated me like I was an overdramatic hypochondriac, but I kept on. He got half way through the second exam and thanks to the terrible GI disturbances going on with the twins – he had the opportunity to test BabyR’s stool for blood. He left the room with the test and returned a few minutes later – singing an entirely different tune. He ordered ALL the appropriate tests. A bunch of viles of blood and 4 stool samples later (2 for each) we sit and wait.
Infection = Treatment then Colonoscopy and Endoscopy
No Infection = Colonoscopy and Endoscopy.
I have been fighting for these tests for about a year. They are the only way we can rule out some of the “worst case scenarios” – or rule them in.
But this is not really where the road makes it’s bend. It is in the journey of faith that I see the crossroad. As a mom with sick children I see it as my job to research, learn, advocate, fight, and keep on going. Perhaps I rely on my own abilities too much at times. There are certainly times when I try well beyond my power and strength and finally fall at the feet of the cross – exhausted.
I found myself here in this moment – trying to “be still.” This message had been laid on my heart and then directly confirmed through one of those little “coincidences.” When I looked deeper into this scripture in Psalm 46, I discovered that there is a subtlety to the term “be still” that implies a direction to “cease striving.” Here I am fighting against everything in my flesh that tells me to keep going, researching, advocating, trying to find THE answer…waiting on Him.
“Cease striving and know that I am God…” Psalm 46:10
About ten days ago we took the twins to their GI specialist. In preparation for the appointment I had decided that I was done. Finished. I decided that I could not – would not – leave Dr. D.’s office without him ordering more tests. After the first update and exam I could sense that he was about to give me the thumbs up – we’ll see ya next time… So I started advocating right then and there. He fought me – treated me like I was an overdramatic hypochondriac, but I kept on. He got half way through the second exam and thanks to the terrible GI disturbances going on with the twins – he had the opportunity to test BabyR’s stool for blood. He left the room with the test and returned a few minutes later – singing an entirely different tune. He ordered ALL the appropriate tests. A bunch of viles of blood and 4 stool samples later (2 for each) we sit and wait.
Infection = Treatment then Colonoscopy and Endoscopy
No Infection = Colonoscopy and Endoscopy.
I have been fighting for these tests for about a year. They are the only way we can rule out some of the “worst case scenarios” – or rule them in.
But this is not really where the road makes it’s bend. It is in the journey of faith that I see the crossroad. As a mom with sick children I see it as my job to research, learn, advocate, fight, and keep on going. Perhaps I rely on my own abilities too much at times. There are certainly times when I try well beyond my power and strength and finally fall at the feet of the cross – exhausted.
I found myself here in this moment – trying to “be still.” This message had been laid on my heart and then directly confirmed through one of those little “coincidences.” When I looked deeper into this scripture in Psalm 46, I discovered that there is a subtlety to the term “be still” that implies a direction to “cease striving.” Here I am fighting against everything in my flesh that tells me to keep going, researching, advocating, trying to find THE answer…waiting on Him.
“Cease striving and know that I am God…” Psalm 46:10
Thursday, July 15, 2010
It's Time To Write
Wow. Where to begin...
For three years I have been a CASA - short for Court Appointed Special Advocate. I advocate for children who have no voice because they are caught up in the foster care system. I am told I am good at this job. In truth I have been an advocate all of my life – long before I was a CASA.
Today I am a mother – a child of God, a wife, and then a mother. My two children are almost one and a half years old. They have been sick all their lives; although by the grace of God it would be hard to see it if one did not already know. They began their short lives in constant pain, and still experience it frequently. They are repeatedly coming down with the latest viruses to hit the region. They cannot eat food. Literally, they drink a medical food as their “sole source of nutrition” – of how important those exact words have been in our journey.
It is time to write.
I struggle to keep it all straight after so much time and so many doctors. Each one telling me that they are fine. “It’s probably just a virus.” We were told this by their pediatrician at six weeks old as they passed mucus and blood filled stools (which had been getting increasingly worse since birth), and developed matching diaper rashes of open seething ulcers. Are you kidding me? A virus? We had been in the doctor’s office at least twice a week at that point dealing with this.
Every spare moment I had (which was not a lot with two new babies AND my own debilitating illness) I spent researching their symptoms. A few days before the “just a virus” comment, I stumbled across an infant formula that was literally IMPOSSIBLE to be allergic to. There was no clear test telling me that they were allergic to milk or soy, but we had tried all of the formulas in the store – all of them. When I asked the doctor about this liquid gold called Neocate she said; “that’s really expensive.” Again, are you kidding me!? For all she knew I was a multi-millionaire. She hadn’t even mentioned that this stuff existed.
$43 and 24 hours. That was all it took. The rash was gone. The babies whom I had spend 16 hours a day trying to feed just so they would get enough calories to grow, suddenly wanted to eat.
This is only the beginning of the story of my battle with the medical world. It is sometimes difficult for me to remember all the details unless I sit down and think about it, and I don’t want to forget. I feel that we are at a crossroads in this battle. My countless hours of research, my own battle with health and the medical world and faith have me believing that we are on to something – that we finally may have figured it all out. Maybe someday I will write the rest of the story that precedes this entry, but for now, I can’t imagine losing the details of what God is about to do.
We are at a crossroads, and it is time to write.
For three years I have been a CASA - short for Court Appointed Special Advocate. I advocate for children who have no voice because they are caught up in the foster care system. I am told I am good at this job. In truth I have been an advocate all of my life – long before I was a CASA.
Today I am a mother – a child of God, a wife, and then a mother. My two children are almost one and a half years old. They have been sick all their lives; although by the grace of God it would be hard to see it if one did not already know. They began their short lives in constant pain, and still experience it frequently. They are repeatedly coming down with the latest viruses to hit the region. They cannot eat food. Literally, they drink a medical food as their “sole source of nutrition” – of how important those exact words have been in our journey.
It is time to write.
I struggle to keep it all straight after so much time and so many doctors. Each one telling me that they are fine. “It’s probably just a virus.” We were told this by their pediatrician at six weeks old as they passed mucus and blood filled stools (which had been getting increasingly worse since birth), and developed matching diaper rashes of open seething ulcers. Are you kidding me? A virus? We had been in the doctor’s office at least twice a week at that point dealing with this.
Every spare moment I had (which was not a lot with two new babies AND my own debilitating illness) I spent researching their symptoms. A few days before the “just a virus” comment, I stumbled across an infant formula that was literally IMPOSSIBLE to be allergic to. There was no clear test telling me that they were allergic to milk or soy, but we had tried all of the formulas in the store – all of them. When I asked the doctor about this liquid gold called Neocate she said; “that’s really expensive.” Again, are you kidding me!? For all she knew I was a multi-millionaire. She hadn’t even mentioned that this stuff existed.
$43 and 24 hours. That was all it took. The rash was gone. The babies whom I had spend 16 hours a day trying to feed just so they would get enough calories to grow, suddenly wanted to eat.
This is only the beginning of the story of my battle with the medical world. It is sometimes difficult for me to remember all the details unless I sit down and think about it, and I don’t want to forget. I feel that we are at a crossroads in this battle. My countless hours of research, my own battle with health and the medical world and faith have me believing that we are on to something – that we finally may have figured it all out. Maybe someday I will write the rest of the story that precedes this entry, but for now, I can’t imagine losing the details of what God is about to do.
We are at a crossroads, and it is time to write.
Subscribe to:
Posts (Atom)