Wednesday, September 22, 2010

Are You There God, Its Me Brandi

As I sit here and type, I am struggling with a fine line.

I was reading a friend's blog yesterday, and she talked about Advocated vs. Tyrant. I giggled as I read that because I understand. Little did I know I was about to draw my own line in the sand.

Yesterday started off as any other day. We woke up. We started meds. As Autumn ate breakfast, Brandon checked Matthew's blood sugar and urine.

In the morning I prefer to have a nice quiet first cup of coffee while sitting on my porch. Its nothing fancy. A "Dollar General" cup, not so good for you creamer, and the crisp air that has a tendency to give me motivation for the day.
My coffee time today was cut short by my husband yelling "you need to see this."

We have been testing Matthew's urine every morning now for 29 days. For 29 days we have not seen a change at all. All little boxes are the same color they were the day before. Well, that was until today. Today the little box that said "blood in urine" popped up green as grass. We then did what any other parent would do, Brandon gathered up fresh cotton balls and urine sticks to retest, while I started calling our Keto team.
When I finally got through to someone, they told me to try to get Matthew in to see his pediatrician and if not take him to the emergency room. Another phone call later, another urine stick with the same results, and we were off to the pediatrician's office.

I love our Dr. T. He is good to us. He is patient with Matthew (and myself.) He is kind, and thorough. I had no worries about the visit.

We were seen in a relatively good time. We explained everything to Dr. T. He gave Matthew a good exam and then.....BAM!

Matthew's right ear is infected again! His right tube has only been out about two weeks. His rash is slightly better but not great. He received five shots (poor guy) and the granulation tissue protruding from his button site was cauterized.
Okay, so what about my son's urine?

Dr. T assumed our sticks were faulty and sent us on our way.

My heart sank. I made a few more phone calls and talked it over to my husband. If we were to come home not knowing then we would be doing Matthew an injustice.

So now, we went to the emergency room.

Paperwork~checkVitals~check
Room~check

A doctor that listens~~~ummmm no!
Dr. M was very rude. He proceeded to tell us we did not know what we were talking about, and that we just wanted unnecessary tests ran on our child.

This is where I had my limit. I was so angry I cried...literally!

Advocate was pushed to the side and Tyrant entered the room. I went off! I told him all about our son, his diagnoses, his special diet, our training, and then what we expected to have done.

Needless to say, six hours later we headed home. Sonogram came back clear. Urine came back clear. My tail came back between my legs.

And yet...I don't care. We know our son. I have to make sure he gets the medical attention he deserves. I will cry when I'm angry. I will stand up for my children.

So now I struggle. As a parent to a special needs child(ren) it is hard to see the line drawn in the sand. We have to move mountains for our children in order for them to get the treatment they deserve. Society has a tendency to attribute all of our children's problems back to their diagnosis.

I was told today that Matthew may have constant ear infections because "he's a special sick child."

Where is that line that is so easily pushed away? Where is the grading scale to grade our parenting? Where is the M.D. after our name that reads "Mommy Degree?"

I will sleep well tonight with my tail tucked. Not because I was pushy. Not because I was angry. But because even though Matthew's tests came back normal, I know we did everything we could to insure he was not just a "special sick child."


4 comments:

  1. Love the picture sweetie....and I am so very happy to have a friend like you. I am happy that we can share our struggles and triumphs together! LUV YOU! Mo

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  2. way to advocate for your son. Adorable picture.
    I remember being told that my childs screaming during feedings was because of his "disease process",I didn't buy it and a new doc and some tests showed he had hpylori. Some docs are quick to attribute what they can't/don't want to figure out to the disability.

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  3. when the doctors said that Matthew would never have the ability to process information, he proved them wrong. when they said he would never have head control, he proved them wrong. in all of Matthews short little life he has been proving the doctors wrong left and right and i know that he will continue to do so. no on knows your child better than you. He is an amazing child and you and Brandon are absolutely amazing parents, im proud of you for standing your ground and making sure you baby boy was well taken care of just because the doctors think you dont know what youre talking about doesnt mean that they are right you maam have earned your gold star and SUPERMOM cape for the day =) i love you honey
    and i love you Mo^^^^^ lol

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  4. you keep pushing and standing up for both of the kids......you are doing great. as i have told you before you know them better than any other person (me excluded)lol.......you know what is normal...you forgot to add that your super mom went off on him.....love ya

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