Laughing Until I Cry

Dear Nani,

You have been the child I could not put down.

I remember what it felt like to hold you for the first time. Exactly what it felt like, as though I am still holding you.

I remember holding your sisters for the first time, but I don’t have the sensation they are still in my arms. I started letting them go, bit by bit, over the years as they grew more independent. As they needed less of me. As it should be. But Nani, you have never needed less of me. You needed all of me and then some.

It was just you and me in the room that first afternoon together. I held you on my shoulder and only hours old you seemed to be trying to lift your head from my shoulder. I thought you incredibly strong. I didn’t yet know about sensory defensiveness or rigidity from brain damage. What I didn’t yet know that day would fill a book.

All these years. Almost 34. Still holding you.

But here we are, and it’s time for me to lay you down. You’re moving in 2 weeks to a group  home. A day I’ve known was coming since we began receiving the most serious of your diagnoses. A day I’ve dreaded and been unable to face emotionally for a long time. Some things you can’t truly face until they come to pass.

For a long time, I’ve felt as though in order to act in your best interest, I was forced to abandon you. Not being able to explain to you what is happening is hard. Sick in the pit of my stomach hard. I know this will be terrifying for you. You won’t understand where we have all gone, and why you are not going home with us. You will be homesick and I will not be able to console you. You can’t call me like your sisters did from college.

But I no longer feel like I am abandoning you. As hard as this will be on you and me,  I know this is right. This may be my fiercest moment as your mother. I’m preparing for the day when I will no longer be here. Now, while I can do it carefully and thoughtfully. Now, while I can help you transition. Now, while I’m still here to help translate all your needs and wants. Now, while it is intentional and not emergent.

Nani, I wish you could know how carefully I have planned. How exacting my standards have been and will be. I wish you could know I will still have your back. I wish you could know I will be watching and praying like never before. I even wish you knew how people don’t like to cross me when it comes to you. (Truthfully darlin’, they don’t like to cross me for any reason, but even more so where you are concerned.)

But you can’t know all those things, so I will rely on the someone who is able to speak to you in ways I cannot. Someone you can hear. Someone who can give you the peace He has given me-peace that passes understanding. Someone who will have your back so much more than I ever have or could.

I wish we could do it all again. Just hit re-wind. I wish this time of me taking care of you hands-on would not be over. It’s been my life. I’m not going to say it’s been easy. But after all the difficult times, I can still say it’s been my privilege. I wouldn’t have chosen this life for you, but because of you I’ve lived a life of a thousand daily graces. Admittedly, sometimes I could only see the graces in hindsight, but they were there nonetheless. I’ve learned a lot about myself, good, bad and ugly. And I’ve learned who God really is. You’ve been a great teacher.

There are so many sweet moments I will miss. Seeing you tucked into bed deep asleep. Sitting on the sofa sharing dessert with you. You smiling from ear to ear and even giggling a bit with every bite. Or how you smile when you see me at the island cooking, and you stand at my elbow with a fork in your hand, making sure I know you’re interested. I will miss how once in a blue moon you spontaneously look me in the eye and with a shy smile lean in to bounce a kiss on my mouth. And I cannot picture my Thanksgiving table without you! No one loves Thanksgiving foods more than you.

We don’t know if you will be able to come back and visit often. We just don’t know if it will be too traumatizing to go back and forth. Transitions have always been hard for you. But we are going to give it all we’ve got. You’ve surprised us before. But I promise you this, we will be together. If you can’t come to us, we will come to you.

And my good-bye to you will always be, “The Lord will bless you and keep you, Nani. His face will shine on you and give you peace.”

What is it about me being sick (coughing, hacking, wheezing sick) that makes my employees want to stop by my bedroom door to tell me they are giving notice? Do they feel safer doing so when I’m in a weakened state? Do they think if I were well I might lock them in a room until they agree to stay on? Full disclosure: The thought has occurred to me.

This phenomenon has happened twice now. Not the giving notice, that’s happened too many times to count, at least while I’m on Vicodin based cough syrup. It’s having it happen when I’m especially sick and short of air, energy and patience. Each time I think, oh great, just kill me now. Of course, I say, “I understand. Thanks for letting me know sooner than later. Hack, hack.”

I hate, hate and despise interviewing people. I really hate training people. I want God to drop attendants into my house like manna where they will instantly and seamlessly become part of Nani’s team. I think it’s the least He could do.

There are great people out there that serve as helpers and companions of people with disabilities. Nani and I have been fortunate to have some of those people spend a season in our life. Sweet Karla, Kris and Kerry will forever be our heroes, but alas, there are others more in the not ready for prime time category. Part of my dread is knowing it’s likely I will encounter some of the flaky ones, and some time will have to pass before I will see the humor in the situation. I’m impatient when it comes to seeing the humor in things.

Here’s a few of the hall of famers among employees and interviewees.

•  The woman who would have someone else call in to tell me that V wouldn’t be coming, she’d had a “situation”. We now use that phrase often, it’s just so handy. “Girl, did you have a situation??” or “Oh my, I feel a “situation” coming on.” Feel free to use it yourself.
• The no-show queen who called a few days later to say she’d have been there, but she’d been in the State Hospital with a panic attack, however she was fine now and could certainly work next week-end. I was not to worry because this didn’t happen very often. What a dilemma for me? Should I leave Nani with her or not? I went with NOT.
• The potential employee, who even though she was told I’d be running a criminal background check before I could offer her the job, didn’t think it necessary to mention the warrant out for her arrest. She said she knew I would see it, but could explain it. I told her not to bother.
• There was R who quit without notice because she said the prior week Nani had broken her collar bone. She had worked 4 days since the alleged injury with seemingly no problems. I expressed my concern for her pain and asked her if this had been confirmed by an X-ray.  She explained her doctor said it wasn’t necessary because he understood she knew her body so well that if she thought it was broken, it was indeed broken. Wonder what the diagnostic code is for hysterical collar bone fracture.
• The potential employee who could not give me references, except for a thank you note supposedly written by Charles E Butt, the grocery story mogul. Her only work history was having started a catering business on Martha’s Vineyard and landing the Kennedy wedding as her very first job! Wow, that Kennedy clan is so nice to give a newbie a chance like that on their big event. Unfortunately, there are no pictures because after the celebration was cancelled due to the plane crash, she had taken the food and distributed it to the homeless on the beach in Martha’s Vineyard.  The things you learn during interviews. I didn’t know Martha’s Vineyard had a homeless population.

Now that I think about it, I don’t know why I don’t enjoy this process more. I think this time around I’m going to sip on a Whiskey Revival while finding the perfect person. Surely, that will make it less painful and it might help with this cough.

Dear Janice,

I saw your FB comment about being “tired of hearing about disabilities”. Whoo, that was some backlash you got, huh? You didn’t back down though. You went on to say, “everywhere you look there are carts, handicapped parking, ramps…”. You wondered when it would be enough.

I have to admit at first those statements left me momentarily speechless. Let me apologize right now for thinking, “bless your heart!” We’re both from Texas so you know what that means. I also rolled my eyes. Sorry. I can be such a you-know-what.

Then I realized many people, including myself, feel the same way. I know this for fact. Whole lot of us are sick and tired of disabilities. You’re not alone Janice. Let me introduce you to some of your fellow haters.

C&J. Amazing parents of 3 children. Parents fighting the progression of Rett’s Syndrome on one of their daughters, Queen Bee. Rett’s Syndrome is a developmental disorder which has the potential to rob Queen Bee of some skill, ability or her life every day. It has already stolen much in spite of their constant vigilance.

Life at their house is full and rich with faith, love and laughter. It’s also full of monitoring life threatening issues like choking, aspiration, and seizures while providing the total care Queen Bee needs to eat, bathe and dress. Let me quickly throw in the therapy appointments, multiple specialists, hospitalizations, surgeries, dealing with state agencies, insurance companies, and the school district. Rett’s may have taken Queen Bee’s spoken words, but C&J make sure it doesn’t take her voice. That’s an arduous process that requires a great deal of commitment daily. The rewards are great, but hard won, and there is no taking a break on that. 

No slackers these 2, they are both working outside the home. They need both salaries, and are very grateful for the hours of respite they receive from a medicaid waiver funded by federal and state dollars. That “respite” time is when all the stuff gets done like cooking, laundry, cleaning, errands, and raising those other 2 kiddos. Not what most people think of as respite. As a side note, these hours cannot be used while C&J work for pay. Many legislators feel that would be paying for childcare. We wouldn’t want these families working the system would we?

Definitely in our club, Janice. C&J, are tired of disabilities. And do they hate Rett’s Syndrome!

Next on the roster is Ms. W. She’s a single, working mom of a young adult son with autism and behavioral difficulties. He’s a big guy at over 6 ft, towering over his mom by a foot. Through some very hard trials and errors, Ms. W has a protocol to help her son when he becomes overwhelmed, but it requires hypervigilance and even the best laid plans go awry sometimes.

At home he can be destructive when he’s upset. Keeping the holes in the sheet rock repaired is a constant challenge. Outbursts in public are another matter. She grew accustomed to the judgmental stares and comments of strangers questioning her parenting skills when he was younger. Now she worries people will see him not as bratty, but dangerous. On a regular basis she takes her son to meet the first responders in her neighborhood to help mitigate problems that might arise during an emergency.

Ms. W is also grateful for the attendant care her son receives from a Medicaid waiver program, without it she would not be able to support herself or him. You know that hyper-vigilance? It takes a toll. Our bodies and psyches weren’t meant to be flooded with cortisol constantly.

Ms. W, she’s tired, tired of disabilities with no end in sight.

Janice, I need to tell you how I came to hate disabilities. My daughter, Nani, has multiple disabilities and no facet of our family’s life is left untouched by that fact. I have it so much easier than some club members because my other daughters are raised. We don’t need me to work outside the home. My daughter’s need for 24/7 supervision is tough though. Frustration leads her to hurt herself and she has no understanding of danger. She also requires constant monitoring. She sleeps little and without much predictability. Never being able to go to sleep when I’m sleepy or sleep until I’m rested has destroyed my own sleeping patterns and I have the health issues to prove it. Google the effects of long-term (32 years!) sleep deprivation and you will see how destructive it is on many body systems. Surely you can see why I’m so very tired of disabilities. We also receive waiver services and are very grateful because these services have allowed us to keep Nani with us. BTW, waiver services are MUCH less expensive than her being institutionalized.

Some club members have a particularly difficult situation. Their child or family member suffers from an invisible disability. Mental illness. A disability still so shrouded in stigma they are reluctant to talk about it, and when they do they may receive a very awkward response from their confidant. Friends may feel strange about asking how things are going. What a lonely road they are on! The fallout in their lives is great. They’re tired of disabilities and may not feel like they can explain why. And by the way, there are scant services available for these families. 

Janice, I don’t know why you are so tired of hearing about disabilities. The points you made earlier lead me to think it’s not because it impacts your life daily except as a minor irritation. Right now you are only an honorary club member. Sadly, one day you or someone you love will deal with a disability of some kind. Your heart will hurt and you may cringe remembering some of the statements you made, but you will have nothing to fear from your fellow club members. There will be no gloating, no feelings of satisfaction, only open arms. The only thing you will hear from us is, “I’m so very sorry”. Our hearts will hurt with yours.

As to your question about why what Texas provides for people with disabilities is never seen as enough. It’s because there are tens of thousands of families experiencing the same difficulties as those I mentioned above. Ten of thousands of people waiting for 10 years or more on average. Families struggling day in and day out to survive physically, emotionally and mentally.

Texas is 50th on the list in services to people with disabilities. Texas can and should do better than that.

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Thanks for reading!

Donna

“Mama, if Jesus came back today and healed Nani, I’d miss the Nani we have now.”

Tash, age 7

That’s when I knew. Hearing Tash’s declaration that day, so long ago, is the day I knew we were healing.

5 years of living with the impact of Nani’s diagnoses and the ensuing upheaval, chaos and stress left me concerned about fall out, for all of us, but especially my girls.

I wondered if their childhood would look like a minefield of emergencies and trauma.

And our longing for healing for her? How would that impact them? What if that was not God’s plan? Was I setting them up for disappointment?

Was our focus too much on loss and what Nani did not have, could not do? Would Nani’s sisters think we did not see her as a gift, but a problem?

I struggled to find the balance. I prayed for wisdom. I prayed for answers that would hit me in the face. I knew I was too fragmented to hear them otherwise.

A few years earlier at a parent meeting, we did an exercise to help us clarify what it was we wanted for our child with disabilities. My answer? I wanted to love her. I wanted her to be part of our family. I wanted her to know we loved her. I wanted her to know she belonged to us, with us, was one of us. That was truly my heart’s desire. Everything else? Just icing on the cake.

But had I conveyed that to her sisters? Did they know I loved Nani just the way she was? Cherished her Nani-ness even while I longed for healing?

Did they know it was OK for them to not only love their sister, but enjoy her, not in spite of, but with all her differences? Still OK to want more for her, hope for more, but see her as complete.

Did they know I saw her as fearfully and wonderfully made?

But the day Tash made that declaration, I knew. And all I could say was, “Me too, Tash. Me too.”

The bookend sisters and me.

Most of my blogging is about my experiences as the mother of Nani. But Nani has 2 bookend sisters that don’t get their fair share of press time. I’m pretty sure they are just fine with that, grateful in fact. But it’s almost Mother’s Day so I think they will indulge me.

I’d offer to let them write a guest blog, but I’m not crazy and have always preferred to remember things my way. Their memories are sometimes unreliable. Why on occasion they have forgotten what an absolutely perfect mother I am!

(The reality? They may have amnesia because they are incredibly generous to me in their remembering.)

But back to these sisters, one born before Nani and one after. Two sisters gifted by God to bless me immeasurably. The first one so compliant,  so “go with the flow” that she built my confidence as a mother, the other so non-compliant (as a pre-schooler) that she built my reliance on God, and gave me a dose of much-needed humility at the same time.

Tash was the perfect salve for my broken heart, a child so easy to make happy when doing so for Nani was beyond my reach. A child whose development could simply be enjoyed without the need for heroic measures. She was an oasis.

Meghan, 4 1/2 years later, the perfect distraction for the pity party I was hosting as it became clear that the projectory of Nani’s development would not be significantly changed, regardless of what we did. Here was a little spitfire who demanded I put my focus back on life. Meghan embraced life as much as Nani avoided it.

Two sisters designed to be the perfect sisters for Nani.

If you think compliant means being a push over, then you never saw Tash get between Nani and someone who was staring harshly or being otherwise unkind. Hell hath no fury as when a sister was being scorned.

Meghan may have been strong-willed but she was not-self centered.  One of her first phrases was “Nani one” which meant she was going to need 2 of whatever she was requesting, followed by “here go Nani” when she delivered the goods, and later “ju happy, Nani, ju happy?”

Both loving and looking out for Nani in their own way.

Two sisters who today are loving and looking out for the people they serve; one an ICU  nurse, the other an inclusion teacher. Two women who don’t turn away from the pain in the lives of the ones entrusted to them.  They are fully invested, willing to advocate. It is not without cost, tears are shed, sleep is lost.

Is it hard for me to watch sometimes?  Yes.

Could I be any prouder? No.