Red Flags and Other Updates

“Red flag” is one of those phrases that makes me cringe when I hear it. It doesn’t always mean something bad, but it usually does mean something, and it always has a way of driving me mad until I get some answers. During Avery’s recent early intervention appointment, I lost count of how many times the therapist used those words after I had to fill out a questionnaire about his behavior. Any final score on this assessment above 65, I was told, is a cause for concern. Avery’s score was well over 100. Of course, before we get any kind of official diagnosis, he will need to go through another round of evaluations and assessments. I haven’t quite sorted out my feelings with all of this new information, yet. He’s my little man and I love him no matter what, and I guess we will just deal with it when we get there. There is nothing in this world that I wouldn’t do for him. George and I have been trying our best not to overthink things, or over analyze, but of course the thought is still there in the back of our minds. 

Being a silly boy at breakfast

Another appointment he had this past month was his 18 month check up. There had been some red flags and concerns addressed at this appointment as well. One of those concerns was his hearing, so he will need to have an evaluation done with an audiologist later this month. We are also trying to get him in to see an allergist, because he is still showing signs of a dairy allergy. Since he can’t have dairy, and we are still struggling with feeding issues, he needs to continue with having formula until further notice... It all just feels never ending. 

But here is some good news!...As for cast #2, we are on the second week and everything has been going really well. Our little warrior bounced back in no time. I contacted BCH this week to schedule his next appointment. This cast will be removed on December 8th, and lucky for us, Dr. G has another appointment scheduled on the following Monday, so that means we get an extra day on our break! Cast #3 will take place on Tuesday, December 12th. We are definitely excited for that extra day. I guess we could call it an early Christmas gift. AND, in case you missed it, Boston Children’s contacted me and asked if I would be interested in sharing Avery’s story by writing a guest blog post for their blog, Thriving. I am beyond excited about this opportunity and can’t wait to get started on it. Once they post it, I will be sure to share it. 

Halloween 2017

Before I head off for the evening, I would like to share a beautiful piece written by writer/columnist Erma Bombeck. It has been shared by many of the members in the scoliosis group, and I think of it every time I start to feel run down, or overwhelmed from appointments and meeting with doctors and specialists. I think of it when I feel my patience wearing thin because I can’t communicate with my child, or because I have a lot to get done but he requires more time and care than other children his age. I think of it when I need to remind myself to take a step back and find a new approach of dealing with everything that is going on, because there may be more to Avery’s story than what we know so far. These are the times that this piece speaks to me the most, and I would like to share it with all of you reading this, because maybe one of you may need a reminder for those challenging days as well. Love to you all. 

Mothers of Special Needs Children – 

by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year, nearly 100,000 women will become mothers of handicapped children.  Did you ever wonder how these mothers of handicapped children are chosen?

Somehow I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation.  As He observes, He instructs His angels to make notes in a giant ledger.

“Armstrong, Beth: son: patron saint…give her Gerard.  He’s used to profanity”

Finally he passes a name to an angel and smiles.  “Give her a blind child.”

The angel is curious.  “Why this one, God?  She’s so happy.”

“Exactly.” says God.  “Could I give a child with a handicap to a mother who does not know laughter?  That would be cruel.”

“But has she patience?” asks the angel.

“I don’t want her to have too much patience, or she will drown in a sea of self-pity and despair.  Once the shock and resentment wear off, she’ll handle it.”

“But Lord, I don’t think she even believes in you.”

God smiles.  “No matter.  I can fix that.  This one is perfect.  She has just enough selfishness.”

The angel gasps.  “Selfishness?  Is that a virtue?”

God nods.  “If she can’t separate herself from the child occasionally, she’ll never survive.  Yes, here is a woman whom I will bless with the child less than perfect.  She doesn’t realize it yet, but she is to be envied.

She will never take for granted a spoken word.  She will never consider a step ordinary.  When her child says ‘Momma’ for the first time, she will be present at a miracle and know it!  When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.

“I will permit her to see clearly the things I see – ignorance, cruelty, prejudice – and allow her to rise above them.  She will never be alone.  I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side.”

“And what about her patron saint?” asks the angel, pen poised in midair.

God smiles.  “A mirror will suffice.”

~ Erma Bombeck published this column on May 11, 1980.