Hard Days

Today was one of those hard days.  If you are a parent of a child with special needs, or maybe just a parent period, you know the ones I mean.  The days when you sit across the desk from a professional and he or she tells you what your child is unable to do, and may always be unable to do.  What other kids her age can do.  What you MUST do to help your child, although the results will be uncertain.  They almost always throw in a couple of strengths first, but those you already know and you could have written the list yourself-and the list would have been far longer if you had.

The professional is just doing his or  her job.  Most of the them are really good at it and between appointments you can readily recognize their expertise.  But, today, in the moment, I was not thinking, "How amazing that this person went to school for 12+ years and has studied hundreds or thousands of children before mine".   "How magnificent that she works for a renowned children's hospital."  No. Today, I was sad.  Not surprised, angry, in denial, or suspicious.  Just sad.

No one wants to hear that your child's IQ is much lower than you were originally told.  After all, the IQ is the Gold Standard of human value, right?  Or, that the gap is widening between your child and her peers and you and the school are not meeting her needs.  Who wakes up in the morning thinking, "I hope today I will learn that my child needs far more than I have been providing".  At least by someone's self-determined standards. No one.

You know what, though?  At the end of the day, I will accept feeling sad.  Because along with the sad, I am grateful, joyful, privileged, and proud.  I have a child in my home and my life that was not supposed to live.  I will be sad today but tomorrow is a new day.  Tomorrow, I will have hope that Miss Angie has already overcome huge obstacles and I believe she will continue to do so every day she is on the Earth.  This child has a purpose and she is going to fulfill it, regardless of the predictions of professionals.

Don't get me wrong.  I am thankful for the professionals to give me a summary of Angie's skills and abilities.  The same summary will tell them how far she has come when she has her next assessment.  Miss Angie Rae (Grover) Harris will not be kept down by one assessment. She is powered by her own steam .  Tomorrow is a new day and she will amaze us all.  Hard day, please take notice.  You are not the boss of us.

Getting Real and Honest

The last time I wrote we had just returned home from the hospital.  Angie's pneumonia lasted for 15 days!!! She returned to school for the first time today and tonight she is completely exhausted.  This was a really long, scary illness.

It took me back to the days where we did not turn a calendar page without a hospital admission.  I was reminded that we have not escaped danger, we have just entered a phase with nice long breaks between episodes of scary.  This time, we won.  And yet......

I have to be honest.  I scroll by most of the posts about your children's accomplishments.  Don't get me wrong, I am happy for you and I don't believe for a minute that you should not share your joy on Facebook or Instagram.  But it hurts.  It is hard for me to see the pictures of farm ball games, ballet recitals, spelling bees, play dates, and family outings to the rock-climbing facility.  That is not and will not be our life.  Please do not un-friend me.  I can handle it and I do enjoy seeing your kids shine.

Angie is able to do so much more than we ever imagined.  Still, she is not able to do most of the sports and activities enjoyed by other All-American children.  She is not invited for play dates and she does not look forward to slumber parties or sleepovers.

Being a parent of a child with special needs is emotionally exhausting and we have two of them.  Angie's medical concerns are sometimes dwarfed by the very different, but also huge, challenges that Levi experiences.  We regularly field calls from the school and must be prepared to head over there for meetings about the latest crisis.  We are threatened and insulted during fits of anger.  We are fiercely aware of the need to protect the rest of the family from harm.  We dread the day that our child could inadvertently hurt someone without meaning to.  We are tired.

We chose this life, knowing that it could wear us down.  Please don't mistake my words for regret.  We did not walk blindly into a life that causes us to stay awake at night fretting about our children's futures.  But, wouldn't it be nice if we had a magic wand to wave all of the ugly away?

Please keep posting about your children.  There is hope in knowing that our community is thriving.  I love to see the evidence and your children are amazing.  Thank you for sharing them with me.

In-Between

Parents of children with chronic medical conditions live in a state of in-between.  Our children are either recovering from an illness or medical crisis or they have one in their future.  Usually both.  We count the weeks, or hopefully months or years, between hospital admissions.  We become a little complacent and cocky when the space between grows longer, forgetting how quickly the situation can change.  We are never relieved of being in-between.  We are always somewhere in the cycle.

We experienced the exhausting, mind-numbing, terrifying journey through a crisis this week when Angie was admitted to the hospital with pneumonia. Our in-betweeness is over for now.  We are in the trenches for the moment.  When Angie became sick with a cough last weekend, I began to plead with God (even though I know it is useless) to PLEASE, PLEASE , PLEASE not let this become a serious illness.  PLEASE do not allow her illness to trigger a seizure-or multiple seizures, as in the past.  PLEASE do not send us racing to the hospital in the middle of the night.  And PLEASE do not require us to consider that this could be the illness that changes everything.  Every one of these fears is completely reasonable in our family's reality.  It is the reality for all In-Betweens. We simply never know.

I think I can say this pretty confidently for now......this is not the crisis that will break our hearts.  We are sad that Angie's body continues to be wracked with persistent coughing, but we know she will continue to get better. We did end up rushing her to the hospital in Portland late Thursday night.  Her breathing had become labored and she was extremely listless.  Angie was admitted and treated with strong IV antibiotics and once again she was cared for by the staff that has a special place in their hearts for her.  She was able to return home late Friday and as the nurse removed her IV, Angie told her, "Thank you for the sleepover".  Sleepover?  It definitely was missing the popcorn, movies, and giggles of a sleepover!

That is our Angie.  She is taking the world by storm and she refuses to be kept down, by pneumonia, or any other obstacle she encounters.  She understands as few other children can, how very important the doctors and nurses are to her continued well-being.  She is grateful to them without us informing her she should be, telling every visitor to her hospital room, "Thank you".  She told one nurse, who was finishing her shift, "I hope you have a very good night".

We are home now and looking forward to creeping back towards the in-between.  I didn't appreciate it  much before, but I will make an effort to be more aware of the positives.  Every day at home as a family is a day to be thankful for.  I am always learning and this week and taught me to be grateful, rather than complacent.  I will not be cocky as our in-between stretches on, but I will also not be paranoid or fearful.  As I read in a Pinterest post recently, "My record of making it through bad days is 100% so far."

Almost every night, after Angie is asleep, I go to her and I lay my face next to hers.  I breathe her in and tell her how much I love her.  I just finished doing exactly this.  I stay there for much longer than she would allow if she were awake.  This child has changed my life and I do not want to forget that as we get busy and life moves forward.  You see, I have already experienced how quickly time passes when you are parent.  The days can be long but the years pass by like the blink of an eye.

Angie is growing and changing right before my eyes.  She is so tuned in to what happens and what is said in her presence.  She is an old soul and her heart understands things most 7 year-olds are far from knowing.  She has experienced pain and challenges unknown to most and she seems to realize her good fortunate to have overcome huge obstacles.  She has experienced a miracle after all.

I wonder sometimes about how much of her journey she remembers.  Some with her brain, probably, and the rest with her heart. She has an amazing aptitude for people.  She just gets them.  If you don't know Angie yet, I hope you will meet her.  Few have met her and not been irreversibly affected.  She will leave her mark and you will be better for it.  She is a puzzle, a wonder, a gift.  She has changed my life.