Saturday, October 23, 2010

The Courage to Be

While I was in hospital, Matt took Soph to the lab to get her bloodwork done.

We had taken Soph to see her regular GP, Rachel, someone who looks amazing for giving birth to her 3rd child a few months ago and is so smart it's hard not to leave jealous. Rachel is a brilliant children's GP. She's aware, she's considerate and, the best point, she doesn't freak out.

We first starting seeing Rachel about Sophie's constipation and when we saw the Paed, we had remarked about the fevers that we had started seeing when Soph was a baby. We told Rachel, ok, it's time. Sophie's teacher has come to us about the fevers, and if someone else is seeing them, it's time.

Ok, Rachel said. Let's move with this. Keep your fever diary (something I have tried and tried to maintain but never seem to get more than a few days into before I fall off the wagon) and we need to get the blood tests done.

When we first started the constipation diagnosis, Soph had some blood tests done for celiac and we did all sorts of stool and urine tests. Soph was barely 4 at the time and was so brave. She winced and cried quietly. They gave her a certificate to colour in and a colour copy for her records. I treated her to a Happy Meal, because, well, it's all I could do at the time.

Rachel wanted the test done with obvious signs of the disease. It's the same for my rheum. They always want you to be able to rush to the lab at the first sign of mega disease and frankly, it's a pipe dream. For one, labs close. For two, most diseases like TRAPS are so unpredictable it's impossible to schedule your lab test around your life and your disease.

However, with a paeds appointment coming up, we want the blood test results. So Matt and I debated. Do we wait until we can catch a 38C fever or do we go with the physical signs: redness, irritability, food refusal, tummy soreness.

For a couple evenings we had been noticing a temp spike over 37.5C but by judging the clock, it always came after 5:30pm and the lab closes at 5pm. we take her one afternoon just before 5? Do we keep her home one morning until we see the signs?

Knowing the ANA and some other autoimmune tests can take up to 3 weeks, well...what do you do? Take a gamble and get it done now or wait and miss the paed appt with blood results?

It hadn't actually been decided when I went into hospital. My phone was quite quiet on Fri morning and I texted to see how school drop off went and got a text back saying they had been to the lab, with big bear as her Whanau support, and they were now at BK having a treat.

My heart dropped. My brave girl! Doing this without her mama!! My heart hurt. This is MY job. I'm supposed to be there to comfort, to arrange and to oversee these things. It did help me realize that her father is completely competent and that as we separate, he will be fine to cope with and do these things.

He tells me they had her on his lap, with his legs holding hers down. He held one arm, they held another. Another girl did the poke and draw. She screamed and cried, as you would when you're 5. She said she doesn't want to do that again until she's 6, or 6.5. My heart breaks.

Matt took her to school and her teacher, the incredible Mrs. Chambers, announced to the class that Sophie had been a brave girl and she held up her Certificate of Bravery and they all clapped. Oh, be still my heart.

We fully expect nothing significant from the tests. Rachel told us to expect nothing, we know from my own experience, to expect nothing. So, if we're to expect nothing, is it worth getting them done at all. Well, yes. Because if it's TRAPS, getting nothing is on par. If it's something like Juvenile Rheumatoid Arthritis, we will see something. If it's going to attack her body, it's at least worth *trying* to find something.

When I first was undergoing diagnosis, I used to be crippled with guilt. The guilt of being a sick mother -- unable to mother to my fullest. The guilt of being an angry, emotional mother -- hurting my child with my inability to control my emotions. The guilt, oh the guilt, of passing this on -- and it still gets to me. If I'm sick, well, that's ok. It's my lot in life. I can cope with it all. After all, I'm an adult and I'm used to things being tough and ironic and hard.

But her. Not her. Anyone but her. This is the child I fought to bring into the world. The child who struggled so much in her first year. Who has fought so hard to grow, the develop, to be the best and bravest girl she can be despite abdominal pain and these other symptoms.

When Matt first ended the relationship, I was awash with this feeling that I wish I hadn't brought a child into this fucked up situation. Didn't she deserve a family with love and respect and a safe place to fall, especially if she's going to face other troubles in her life?

But I now see that she does have a family with love and respect and she will always have a safe place to fall. It just happens to be a slightly augmented nuclear family and I hope that as we all grow and age that we will continue to be a close and safe and loving family. I think our joint desire to help her through the illness is what unites us as parents.

I still ache inside thinking of the guilt. I ache inside knowing that she is going to have a lifetime of illness and pain. I ache inside knowing that any future children I have will face this as well. I suppose I am steeled by the fact that my own experiences have been much more positive here in Wellington and that I am growing and learning how to handle myself, handle the unknowns of the illness. I am comforted by the fact that the staff at the hospital are so kind, so caring and so professional, and yet maintain that friendly, approachable manner.

I'm sure this confidence is going to falter at some stage as we approach the paed appointment.

But, for now, I'm relieved the lab tests are in the works and the girl bounced back from it all.


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