The Other Side

I have been feeling compelled to share about the other side of parenting children with special needs, specifically neurological disorders. Behavior, with a capital B.  I have hinted about it in the past, but my main focus has been trying to share the positive outcomes of "life after a miracle".  After all, that part is a lot more fun.  The reality is, almost ALL children with a neurological disorder experience some incidence of behavioral issues, and more often the problems are chronic.  I will share our experience but keep in mind that each child and family is unique.

Since we have had children and foster children with multiple diagnoses and varying personalities, we have pretty much seen it all.  Each one serves up his or her own special menu. Yelling, screaming, hitting, biting, spitting, throwing, refusals, door slamming, defiance, blaming, name-calling, impulsivity, eloping, avoidance, you name it.  Sounds like a huge bucket of fun, right?  The impact of the negative behavior is widespread and it touches family, friends, caregivers, teachers, coaches, and helpers.  Its insult has caused our family to miss many community and school events, avoid public places, be late for school and work, and cut short dinners and parties when the evil monster shows its face.  We pick kids up early from events and hold our breath when they go somewhere without us.  Often, our kids just cannot do many of the activities enjoyed by peers.  We have left stores with a full basket more times than I can count.  After thirty years of parenting, Toby and I are well versed in Love and Logic, Magic 1-2-3, toughlove, reverse psychology, reward systems, and other parenting approaches and they almost never work in the midst of the meltdowns caused by a misfiring brain.  It is exhausting, overwhelming, and disappointing.  Yes, we sometimes feel sorry for ourselves, even throw a little pity party, but do you know who we really feel sorry for?  THEM.

Kids inherently want to please.  They do not want to misbehave, disappoint, and embarrass.  When people see our kids misbehave and meltdown in public, they miss a crucial point in the interaction, which is the aftermath.  With the exception of a few specific diagnoses, children are unfailingly so, so, sorry when they reflect on their behavior. Every. Single. Time.  They are at least as disappointed as we are.  It is heartbreaking, and we work to build them back up again, despite being completely worn from the battle.

When I see other parents struggling to manage behaviors in public, I want to give them a hug.   I try to send a mental message, saying, "I Know".  I hope they receive it.  I hope that they feel my complete and total lack of judgment and my frustration that I am unable to help.  I know that they go home feeling depleted, exhausted, and sad.  And I am so very sorry and helpless.

I am not sure why I wanted to share about difficult behavior.  Maybe, to spread awareness and understanding so you can support parents you know who may be dealing with difficult behaviors.  Or, maybe I felt less than transparent in sharing so many joys and few of the negative aspects of our reality.  Either way, I hope you will have an opportunity to share a smile or a hug with a parent you know who has been served up a menu of meltdowns and needs a little understanding. Sorry for the long post.  Thank you if you you made it all of the way through:)

Surgery #.......who knows?

I have no idea how many surgeries our girl has endured but I do know that the glaucoma procedure she had yesterday was her 14th glaucoma procedure in her ten years.  Angela had an Ahmed valve implanted in her left eye and she came through like a champ, as always.  There are some pretty scary potential complications with this procedure but so far the results are very promising.

For the past two days, Angela has traveled by wheelchair again.  Her vision is limited right now, and she is a little unsteady on her feet.  And then there is the cast on her right leg.  I have been struck by the public response to a child in a wheelchair.  And, to be honest, with a patch on her eye, a splint on her wrist, and a cast on her leg.  Angela used a wheelchair for quite a while after her brain surgery but I had forgotten.

When people see us, they move to the side to let us pass.  They allow us to enter the elevator before them and they hold doors to let us go through.   They smile extra hard when you catch them looking. And then, there is the look in their eyes.  Pity.  Every. Single. Time.  I am not the type to be confrontational in public (and besides that, they mean no harm to us) but if I were, this is what I would say:

"Please don't pity me.  I know, you see a mom who has been delivered a load of burdens beyond her share, but that is not me.  Instead, I have the privilege of being seated in a front-row seat to a miracle.  I have watched a child, who was delivered a death sentence, defeat her fate and be saved by a drastic, unimaginable surgery.  I have been witness to a child who knows no burden, despite her undue challenges.  She is a vision of what life would be like if we knew we could not fail.  We would try anything and everything!  Although she rages at those who love her most, she is not defeated and she smiles through every procedure.  She is polite, and grateful beyond measure, to those who care for her in clinics and hospitals.  Stare if you must, but do not pity us,  or her."

It is interesting, the perspective of a parent whose child has extraordinary needs.  Contrary to popular belief, we do not want people to feel sorry for us.  Oh, we want and need the disabled parking permit.  Have you lifted a fifty-pound wheelchair?  Multiple times in a day?  At the end of the day, though, we want what you want.  We want our kids to be happy and healthy and to live a full life. We do not want

pity, though, because we share a secret.  Although we wish our children did not have to struggle, we also know that we have met some of the most caring, compassionate people on our journey and that our children are wise beyond their years.  They know the value of their days, and they do not take a single day for granted.

In the Midst

My last post was about new information about treatments that our girl may need.  Well, she needed them all and now we are in the middle of it.  You know what?  Life doesn't really feel very different.  Why am I surprised?  I am not sure if we have become immune to chaos, or if Angela just makes it all look so darn easy.  Maybe it is a little of both.

Here is the latest:

Angela had 3 hours of oral surgery last Friday.  By the time we made the drive home from the hospital, she was behaving as if nothing had ever happened.  Really.

On Monday, Angela's right leg was casted-the first in a series of casts that will be applied and changed every week for 4-8 weeks.  The projected outcome is that her ankle will resume its neutral position and she will have fewer falls and a more typical gait pattern.  She will be fitted for a new brace, and then we will try an electrical stimulation unit to try to optimize the function of her foot and ankle.

Ten days from now, Angela will have an Ahmed valve implanted in her left eye to attempt to lower the pressure in her eye due to glaucoma.  She has experienced a significant reduction in her vision in the past several months as we have tried to treat her glaucoma, and that will not be reversed by the surgery, but hopefully, her vision will stabilize and not continue to deteriorate.  She will be out of school for at least two weeks after surgery and she is already mourning the loss of her social life:)

I am not exaggerating when I tell you that Angela truly takes all of the inconveniences in stride and views her life as a wonderful adventure.  Who does that?  Well, I guess, a little girl who had endured major brain surgery and, despite her cognitive limitations, understands that life is a fragile gift and is not to be taken for granted.  She is so far ahead of the rest of us that she can't even see us in the rearview mirror.

How can we capture this gift for ourselves?  I am not at all sure that we can, given that most of us have never experienced challenges even nearing the obstacles that have faced Miss Angela Hope.  We can draw from her strength, though, and from her ready smile and casual outlook on her fate.  Her positive attitude is contagious if you recognize its power, and you can have it too.

Falling Apart

I should know better than to get complacent.  For the past year or so, we have had only good news at Angela's appointments with her doctors.  No seizures, no vision changes, good results from her laser treatments, interventions effectively managing her orthopedic issues, and impressive academic gains. Life has been good and we have been grateful.

This week, we had different news, and I am reminded that we are still dueling with Sturge-Weber Syndrome for the upper hand, and we always will.  A visit to the glaucoma specialist revealed that the second eye drop we added to try to control the pressure in her left eye has failed.  If you are unfamiliar with glaucoma, it is increased pressure in the eye caused by too much fluid, which can damage the optic nerve and lead to vision loss.  It can be controlled but not cured.  Angela's doctor added a third eye drop and we will check in with her in two weeks.  If this treatment fails, we will be considering another surgery.  The vision exam also revealed that Angela's vision is significantly decreased in her left eye so we will be seeing her vision specialist on Tuesday.  She has been taking her glasses off a lot lately, so it all makes sense now.

Yesterday, we had an appointment with "Dr. Steve".  Dr. Steve is a physiatrist and he has managed Angela's care since her time in inpatient rehab after surgery.  We made the appointment because we were concerned about pain and tightness in Angela's wrist and shoulder.  I figured it was probably time for another round of botox injections, which brings temporary relief.  Dr. Steve agreed with me, and after examining our ever-patient, yet sassy girl, he said that she is developing a contracture in her ankle, which is "a condition of shortening and hardening of muscles, tendons, or other tissue, often leading to deformity and rigidity of joints."  Contractures are not something to mess around with.  He will treat her ankle with botox injections, followed by serial casting, which is a series of casts which stretch the muscles over a period of weeks.  After the casting, we will discuss long-term spasticity management for her to prevent contractures.  More disappointing news.

It has been a rough week.  As always, though, Angela has approached the news with her usual style of "Life is an Adventure!" so we will try to do the same.  Because it really is, after all.

Nurses

This girl makes me so proud.  She has accomplished much and has not let any obstacle stop her from achieving her dreams.  Most recently, she earned a Bachelor's of Nursing degree, while working full time and parenting an awesome and spirited two-year-old with his own challenges.  She amazes and inspires me.

Have you ever really thought about nurses?  Maybe not, if you and your relatives have been fairly healthy and have not experienced medical crises.  And that's okay.  But if you haven't, I want to tell you how crucial they are when you have a family member in need.  It makes every single moment in that hospital room more bearable when you have a nurse who has your back.  It makes it possible to look away from the constant monitoring of every breath and heartbeat.  He or she can read your needs and talk you down from the wall that you did not even know you were climbing.  They will feed you little bites of hope in your darkest moments and will act like it is all in a day's work.  They go home, gratefully, to their healthy family, make dinner, tuck the kids in bed, and return the next day for another dose of caregiving.

One of the most inspiring nurses I encountered was a woman who had lost her sixteen-month-old son to a rare and fatal disorder.  She was in charge of Angela's care in the middle of a serious blood infection that she contracted while in the hospital for another long illness.  We were over three weeks in and we truly did not know if she would go home with us.  During this time, our nurse was positive and encouraging as she administered drug after drug to try to beat the infection.  "This will be the one", she said, time after time.  She told us she thought Angela would get well, sat with me, and even held my hand.  She spoke fondly about her son, but not about the loss.  I will never forget it.  I have so many more stories like this and so many memories of wonderful nurses.  I will not forget.

Nurses are my heroes and I could not prouder that Kirsten is one of them.  She has and will continue to change lives.  She has the gift of compassion and the desire to make others' lives better.  I want to leave you one more message about nurses by my favorite author, Kelly Corrigan.  You can see it here:

https://www.youtube.com/watch?v=9caaa-DJ8HU

If you know a nurse, please thank them for their work.  There is no greater giftl

Graduation Day

Last week, our fourth child graduated from high school.   Joshua Samuel Harris.  You would think it would be easier to accept on the fourth time around, but that is just not true.  I still want to rewind back to the days when my little boy was still little.

Joshua has been one of the kindest souls I know for his whole life.  Always empathic and caring towards those who need a little extra love and care.  In sixth grade he was awarded the Norma Simmons award for Outstanding Sixth Grade Boy and we knew that others noticed too.

And then, overnight  it  seems, we were here:

The same two very  kind individuals, Josh and Madeline, were graduating from high school.  I had the very special honor of delivering their diplomas as a recently-appointed school board member:

I must have been afraid that I had not given Josh some imperative nugget of advice because I gave him the following letter on graduation day:

Joshua Samuel-

Here we are. Your graduation.  It is hard to believe that it has been eighteen years since you were delivered to our home and our hearts, and our lives were changed forever.  As we approach your graduation, there are some things I want to tell you:

1)  Congratulations!

Ignore my sniveling and carrying on. In fact, forget everyone and make this about you for a moment. Accept every slap on the back and lean into all those sloppy kisses. Take your victory lap. This is one of the big moments. Drink it all in.

2) We’ve got your back.

You are never alone in this world. There’s a safety net knit tightly of good friends and family who are all ready to reach out when you need that helping hand. Let their great love embolden you in weak moments. And when you get a chance, do the same for someone else. There is almost nothing in the world that will cure what ails you like doing something nice for someone else.

3) Dare mightily.

Dream really, really big, but also live every day with a spirit of wonder and brave resolve too.  A lot of adulthood is not so much an exciting new road but a familiar, well-worn path. Venture to marvel at the simple joys and brace for the sad, scary things that can pop up along the way. Dare to imagine a better you every day.

4) Show up.

We never wanted you to just be a guy. We were always hoping you would be a certain type of guy. So show up for people. Celebrate their successes and ease the burden of their failures. Make them laugh and sit with them when they are sad. Go to boring parties, lame weddings, and uncomfortable dinner parties because someone asked you to be there for them. Just show up. You’ll be amazed at the joy you’ll find from doing the thing you really didn’t want to do.

5) Stay true to yourself.

The young man you have become is exactly who you were supposed to become.  Know what you want and go for it, despite what anyone else says, including me!

6) Be proud of your kindness.

As much as a mother raises her son, so does a son raise his mother.  You have taught me many things as I have watched you grow.  From you I have learned the power of a tender heart as I have witnessed your quiet kindness to others all of your life.  Your teachers throughout grade school always remarked about your concern for the feelings of other children. You attract friends wherever you go, and you are loyal to them.

7) Know that change will come and it can be good.

You have taught me about courage.  Our family life has been marked by transition, and you have endured many changes from a young age.  In your 18 years you have had brothers and sisters come and go from our home.  Change has been constant.  Anyone who has grown up in a large family knows that it is never without trial.   You have navigated these changes with elegance, courage, acceptance, and again humor, when all else failed.  It has been remarkable to watch.  You are stronger than you know.

8) You look so handsome.

Seriously. This one sticks in my throat every time. That picture of you in the paper with all the other graduating seniors? Almost did me in.  You have no idea what it’s like to watch someone grow up before your eyes yet, but I hope you get that privilege. You were a beautiful, perfect boy the minute I met you and your bright, golden light has never dimmed. We are so unspeakably proud of the young man you have become inside and out. And you look great in that cap and gown too. Really, you are rocking it.

9) Some of our memories are mine to keep.

You will not know or remember how hard I fought for you to be my forever son.   How I cried when I was afraid it might not happen. You did not see my determination that I would raise you and your brother together.  The fight in court, the letters written, the love that grew in our hearts immediately.  I will keep those memories for you, but hope you know how very special your inclusion in our family is to us.  You have changed our lives.

10) I love you.

Truly, honestly, deeply. This day. Every day. Forever. Take that knowledge with you into beautiful corners and brave new worlds. Let it warm you on cold nights and lead you out of dark places.

The best is yet to come, sweet boy. Knock ’em dead.

Love, Mom

This is a happy/sad season for moms.  It is so hard to let go, and yet so wonderful to see your  kids grow up into amazing human beings.  If it is your turn next, please know that as hard as it is, there are good times ahead, too.   You can do this!

Looking Forward

A few months ago, I wrote this post about Levi returning home:

http://miracleshappen527.blogspot.com/2018/01/starting-over.html

Reading it tonight brings it all back.  I was terrified that Levi would not be accepted at school and in the community.  I wanted so badly for him to have a smooth transition and to find his place among his peers.  I have waited but I think it is safe to say that is exactly what has happened.  He is truly home.

I have been feeling so grateful.  I am grateful for the love and acceptance Levi has received from friends, family, and caring community members.  I am grateful that barely a day goes by without someone asking me how he is doing.  I am grateful for a family that is whole again and the peace and relief that comes with that knowledge.  

Life is uncertain and that fact can be terrifying if you let it overcome you.  We have been dealt unwelcome surprises and disappointments over the years, and there is no guarantee that we will not have more to come.  I am working hard to appreciate the present and to look toward the future.  We have worked hard for this.  Our family has proven itself to be strong and we will weather whatever comes next as we have everything else-together.  Thank you, my friends, for your unwavering support.  You will never know how much it means.