Messages from Moms: Adrienne Graves (part 1)

Last month, I introduced you to my wonderful new friend, Adrienne Graves.

Adrienne is, first and foremost, a child of the King. Next, she is the wife of her husband, Jason, and mother to three children: Emily, age 10, Ryan, 21 months, and Noah, who is in heaven.

I first became acquainted with Adrienne through the blog she wrote while Noah was in the hospital. You must read Noah’s story…you will absolutely fall in love with this tiny boy who has led so many hearts to Christ. During his 7 months on earth, he reached every continent in the world through Adrienne’s blog!

Adrienne has been gracious enough to share her heart with us here, in the hopes of providing greater understanding to the Church. Obviously, her motherhood has included rare, raw, painful experiences that most of us will never experience. However, we are, all of us, in the same Body, and we’re called to rejoice with those who rejoice, and weep with those who weep. The best way to do this is through understanding.
I asked Adrienne to help us understand by first explaining how she dealt with the uncertainty of Noah’s illness…

Honestly, my eyes were opened during Noah’s hospitalization to my need to be both his mommy as well as his advocate.  It’s true, the doctors and researchers were stumped.  I’m so thankful God provided world class insurance during that season because the types of tests the doctors were ordering were no longer typical, run-of-the-mill tests.  (The doctors) were in uncharted territory.  As a result, I began to dig into research myself.  I also asked the question, “Why?” a lot.  I was not trying to be disrespectful to any of the team within the medical profession, but when a doctor hands you a list of 17 different disorders your child could possibly have, you don’t read the list.  You say, “I’m sorry, my job is to love on my son, not to research 17 potential disorders.  Please narrow this list down to one so I can know what we are dealing with here and why.”  

Noah was never given a diagnosis.  

I think at first I dealt with the uncertainty by seeking more answers, but looking back, those were the answers of modern medicine I was seeking.  Test after test after test came back inconclusive.  We found a biophysicist on the outside who helped us with further research which has opened my eyes to a whole new world of “modern medicine” but there still wasn’t a cure and there certainly weren’t any treatments doctors were willing to try.  I remember thinking the whole scenario seemed like a game of greased watermelon in a pool…no one ever had a hold on it.  But, in the bigger picture, where my world was crashing down around me and I was angry because I couldn’t “fix it”, I had a perspective shift.  I knew from the moment Noah was born that God was more in love with him than I could ever be, which is difficult to swallow for a mom, so even though the whole situation was out of my control and uncertain, a peace from God came over me as I literally trusted Him one step at a time.

Next: Adrienne discusses how Noah’s illness affected her marriage and her relationship with her then-four year-old daughter.

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Why the Jet Blue Incident Makes Me Blue (and determined)

By now, I’m sure you’ve all read or heard about the Jet Blue pilot who was restrained by passengers yesterday. I’m so thankful that all passengers and crew are safe after what was a very frightening emergency situation.

From the reports I have read, the pilot was yelling, banging on the cockpit door, and appeared to be confused. One source reported that he had a panic attack. The JetBlue officials reported on a company blog that a “medical situation involving the Captain” caused the flight to be diverted. However, the comments left on the blog made my stomach turn:

I support JetBlue, but this response is nonsensical. Best not to sanitize what sounds like a very serious situation. A pilot having a bout of food poisoning mid-flight is a ‘medical situation.’ An on-duty pilot having a psychotic episode in-flight…is a different category all-together.

Another commenter was more succinct:

“CRAZY IS NOT A MED CONDITION PPL. gotta love the way stuff gets reported.”

Fortunately, several other readers tried to explain the effects of medical conditions on mental health, and others mentioned HIPAA compliance. However, those comments weren’t read on the national news this morning…and it makes me so sad. We have such a long way to go when it comes to understanding mental health issues…

  • We have to educate the teacher who told my client, “ADHD? That’s just a cop out.”
  • We have to help the administrator who said, “I don’t see any Obsessive-Compulsive Disorder. She just keeps going to her locker over and over again…”
  • We musn’t conclude that the child having a melt-down is a big brat.
  • We must stop assuming that the teen in trouble is the product of “bad parenting.”
  • We need to recognize that anxiety and depression are REAL…not flaws in character…and NOT the result of weak faith.

We need to find a church for every child.

With high hopes for flying the friendly skies~
Katie

“…I don’t want to be THAT mother:” Addressing a Common Fear for Parents

It’s the fear that lurks in the minds and hearts of almost every parent of a child with special needs…

“I want my child to get the right support, but I don’t think the school /church/doctor understands what to do. I’ve tried to communicate about it, but I’m not having much success. I disagree with how things are going, and I know I need to say something, but…I don’t want to be THAT mother.”

I hear this phrase uttered on an almost-weekly basis. Parents of children with special needs harbor so many layers of anxiety…worries about finding and securing the right treatments, helping the child make progress, hoping the student will make a friend, praying for inclusion and acceptance. In the process of dealing with all of these worries, and trying to find solutions, parents also fear being labeled as the “THAT” parent…

…the one who is never happy.
                The one that teachers talk about in the staff lounge.
                            The one who is paid lip service…
                                       {and avoided at all costs.}

No one wants to be THAT mother, of course. Instead, parents tell me, they want to be positive, capable, and helpful…but they don’t want to be “pushovers” either. I choose to call this style the Collaborative Mother. (We’re using “mother” for simplicity’s sake, but please don’t feel excluded, dads…this is for you, too!)

So, how do we avoid becoming THAT Mother? We can start by examining our style of communication, and defining what we don’t want to do, and what we hope to accomplish. To do this, let’s compare THAT Mother to the Collaborative Mother:

THAT Mother thinks she always knows better than the school/church; The Collaborative Mother tells the school/church what works at home with her child and considers the input of others.

THAT Mother requires that the school/church change the entire program structure to fit her child’s unique needs (and expresses frustration at any resistance); the Collaborative Mother discusses ways that her child’s needs can be met in the least restrictive environment.

THAT Mother makes demands; the Collaborative Mother makes requests positively and assertively.

THAT Mother has an attitude of entitlement; the Collaborative Mother has an attitude of humility and gratitude.

THAT Mother explodes when mistakes are made; the Collaborative Mother extends grace, and offers to be part of fixing the problem.

THAT Mother assumes that the school/church knows nothing, and is condescending; the Collaborative Mother says, “You may already know this…” or “How can I help you to understand my child better?”

THAT Mother gossips about teachers and volunteers; The Collaborative Mother addresses concerns directly, honestly and kindly. She follows the “chain of command” when seeking to resolve disputes.

THAT Mother says, “You people are going to get this right.” The Collaborative Mother says, “I don’t want to be “THAT Mother.”

THAT Mother doesn’t think she’s “THAT Mother.” The Collaborative mother knows that once in a while, she will be THAT Mother,  because she’s human, and because she makes mistakes, and because her emotions sometimes run high when it comes to her child…

THAT Mother is “never wrong.” Ever. The Collaborative Mother is humble, and willing to say, “I’m sorry.”

THAT Mother loves her child, and she is hurting. The Collaborative Mother loves her child, and she is hurting…but she doesn’t want to hurt others in the process.

THAT Mother is a Child of God. THe Collaborative Mother is a Child of God…and she knows that the teachers and volunteers are, too.

Collaborating with you…
~Katie