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Different

This past March we celebrated Ellianna’s 7th birthday. I thought we pretty much had the hang of that down, but this year was a different kind of day. Since we had moved out of Colorado, there was no visiting the cemetery to leave notes and flowers or eat cupcakes near the etching of her beautiful name. It felt hard and sad and unfair to be so far away from the town where we were closest to her. There was still celebrating; there was cake and pictures and remembering her big eyes and her tiny fingers, and there was wondering over what our sweet girl would be like at age 7. But it was different. I had more tears and some angry feelings about being so far from all the tangible places of her.

In April I made a whirlwind weekend trip back to Colorado for a conference, and got to stop by her resting place to leave fresh flowers on my way to the airport out of town. I experienced deep gratitude to get to be there, as well as a downpour of guilt and regret, and sadness to have to leave again. In the months of not visiting that place, a multitude of emotions had built without the trigger of release. I boarded my plane with scratchy red eyes, and a rosy face washed clear of my morning makeup.

Now July is upon us again, and we are remembering the day that we sang over Ellie and kissed each baby piggy toe and watched her body give up its hard fight and her soul fly free of all the hurting. This July though, we are back at the foothills of our breathtaking Colorado mountain, on a brief visit to the city that holds the entire history of her short and beautiful life.

I wondered over what we would do to remember and celebrate our girl this July 14th; an exciting trip packed with joyous memories and reunions, punctuated by the difficult anniversary of one of our hardest days. In past years we have prepared care packages for other families with a little one fighting for life in the picu. We have escaped far from civilization to camp under the twinkling canvas of stars, and we’ve climbed sand dunes to release soft-glowing lanterns into the sky. We’ve had quiet days in at home, and have escaped for a night away to numb our minds with the unfamiliar.

I have some unresolved thoughts about the medical staff that cared for my girl, so I considered making care packages for the doctors and nurses and techs. Each time I started to collect items though, I came up a little bit blank and overwhelmed. The emotion connected to my interactions with the picu staff is strong and difficult to sort through. I decided to keep it simple; it was still a kind gesture of acceptance for these medical professionals, but without the intense process and emotional drain of gathering well thought out individual items for care packages. I called to ask how many would be on shift in the picu where we said goodbye, and brought down a yummy and filling breakfast for when they get to break away from the business of saving lives and tending to souls.

The healing for me was in the handwritten note expressing my thanks for this calling they’ve given their lives to. I know there are days it must feel like a thankless job, and it’s possible I was one of those parents who was so fearful and wounded that I came across as more critical than grateful. It helped me to at least say that I know they are human just like me, and are simply doing the best that they can with what they know.

I could point fingers and choose to hold a grudge for our experience in that picu, but I’m trying my best to instead remember the shining moments of grace and kindness that were scattered throughout those dark days. There was the tech who sat and talked with me honestly about what his job was like, and enthusiastically encouraged me to pursue my hope of a job inside the picu. There was the nurse who in the middle of all the chaos took notice of my wincing and offered me some Motrin from her own purse to help keep me on my feet in the marathon hours of standing at that tiny bedside. There were the nurses who went scrambling for the right sized hat to snuggle over Ellie’s hair when the fresh wounds on her head made me feel panicked while I was holding her. There were the kind nurses who gently helped me bathe and dress the breathless body of my little love, and carefully made treasured keepsake molds of her perfect hands and feet. Those are the moments I want to dwell on when my mind wants to wander and question and doubt and wonder how things could have been different.

As painful as it was to walk back through that slick-floored hallway to the picu doors this week, there was a bit of healing in getting to offer loving kindness to the very people that were part of one of my deepest wounds. I hope that our gesture will help renew their fire to keep fighting for the tiny lives that rely on them, and to keep offering gentleness to the parents who may seem ungrateful and unkind in the terror and pain of watching their little loves hurt.

Our visit to the foothills of the Rocky Mountains also allowed us the privilege of visiting the cemetery where our sweet girl was laid to rest. We soaked in the comforting warmth of the sun as we sprawled on the fresh grass surrounding her headstone, and arranged a masterpiece of flowers that only barely began to capture the miracle and the beauty that was our Ellianna Grace. My littlest scrambled around picking every dandelion he could find to carefully place by her name, just as he has done since he was barely crawling around. We reminisced about the butterflies, the rainbows, the family that came to link arms with us. One of my littles retreated in tears to the car, overwhelmed with the weight of it this time. It changes a bit each time; little pieces of the joy and the sadness and the beautiful and the hard to look on have different meaning as each of us grow and learn and experience more of this life through which we filter all of our deepest emotions. We were honored to get to remember our girl in this place this week, and we surely are the luckiest to be the family that calls her ours.

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Mixed Feelings

My little guy swiped the tears off of his face with the back of his arm and grinned as an excited squeal squeaked out. He had just suffered through painful Botox injections in his legs, but was quickly distracted by the huge bin of toys and games that was plopped in front of him to choose from.

I couldn’t help but crack a smile as well, and thought, there it is, reminding me again; grief and joy coexist.

I have felt bound by a very long season of grieving; one fresh struggle after another for a seemingly endless stretch of time. As I told a good friend the other day; it’s just a constant game of Russian roulette and we keep getting the bullet. I’m sure that’s not the case even though it feels that way sometimes. I have also seen that life does not pause to wait for the hard thing to be over; it scatters the joy right in with it. And thank goodness… am I right? I shudder to think what these dark days would feel like without the fresh breaths of laughter and excitement. Admittedly, I also struggle to fully appreciate the joys sometimes when I am grieving hard.

These past few weeks have been a more prominent example than most of this roller coaster of sorts. I sat across the table to sign for the closing of our beautiful new house crouched over from the fresh surgical scars of a few days prior, celebrated the excitement of boxes and furniture coming in the door while resenting the limitations that kept me from helping to carry and unpack. My flowers bloomed beautifully while my vegetable garden was laid to waste by the weather. Summer break and the delight in bikes and popsicles and lightening bugs and new friends, was coupled with a traumatic fall from a tree that landed my oldest girl unconscious and in an ambulance. On the same hand, the devastation and helplessness I felt over her injuries was bathed in the gratitude that it was not as disastrous as it easily could have been. I received insurance approval for a wonderful new device to help me walk more normally on the tails of hearing hard news from a close friend, and had a weekend of celebrating my newly sixteen year old boy and Father’s Day, coupled with anxiety and new testing for another unknown of my own. There is no time to stop and celebrate the victories or grieve the losses, there is simply a perpetual circulation of the highest highs and the lowest lows, and the best I have found is to drink deeply of the holy graces and allow yourself to feel the depths of the sorrows, and keep moving forward with them.

I know I’m not alone in this. I realize each of you dear readers face your own highs and lows with the revolutions around the sun, and I hope it gives us so much more kindness and understanding for each other. I haven’t mastered this, no; it’s easy to let the sting of the hard bleed into the moments that should be celebrated, but I’m trying ever so hard to fully embrace both, are you?

Please leave me a comment, it lets me know you’re listening!

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New Waters

Tecpr2 and Kif1a.

6 months ago I would have looked at these strange symbols and had no idea what gibberish this was. Today though, those 11 characters form the mold of a very different shaping of my life.

I have sat on this for some time. Partly because it has taken awhile to start to gather my thoughts. Also because some part of me must have been hoping for something different.

For years we have been treating two of my beautiful little ones for weakness and tight muscles in their lower bodies. For one of them we attributed it to his premature birth, and the other we figured was just growing faster than her muscles, as she stretched lean into her preteen years. We had literally the best therapy team on the planet; their skill and knowledge just off the charts, combined with the loving compassion that has allowed them to become dear friends well beyond just therapists. When we moved out of Colorado though, we had to start over. It was a very lengthy process of finding a new primary doctor and trying to get the kids set back up in therapy.

It was the very first time our 12 year old girl had been seen by her new pediatrician. Honestly, I was expecting to walk in, explain we had been doing physical therapy for tight muscles and frequent ankle sprains, and be quickly ushered out with a prescription in hand to continue our weekly routine. This doctor took pause though. As she evaluated my girl’s tight muscles, and noted her brisk reflexes, she suspected something more. She did give us the referral for physical therapy, but she also sent us with a referral to be seen by a pediatric neurologist. I really hardly gave it a second thought. It was not uncommon for us to be sent to a specialist here or there, and after what we went through with our youngest daughter, I never minded an extra appointment just to give us some peace of mind.

We pulled her out of school early one afternoon to have our first trip to the Children’s Hospital to meet the neurologist. I was still limping along on crutches after hip reconstruction, my littlest guy was tagging along as usual, and I expected we would be in and out. After answering a slew of questions, the kind doctor with an accent I struggled to understand began examining my girl. He tested her reflexes again and again; reflexes I didn’t even know existed (did you know there’s one on your chin??). Back and forth he went, stretching and re-stretching the muscles of her legs that refused to soften. The room was mostly quiet aside from the occasional question, and the sound of my little guy playing with a toy dump truck on a nearby shelf. Then with a reassuring smile, the doctor said he needed to ask a fellow doctor a question, and he left the room. The minutes started to drag, and the dump truck had been abandoned for clingy questions of when we were leaving by the time the doctor came back in. He had with him a confident and no-nonsense woman who introduced herself as the chief of pediatric neurology. She proceeded to repeat some of the stretches and tapped reflexes again with the funny rubber wand. “Do you see what I mean?” our doctor asked, and immediately my back tightened and I was acutely aware of the thickness of the air I was trying to breathe. The chief doctor agreed with him, and our doctor motioned to my young son now curled up on my lap, and said, “he has the same thing.” At that point, even though it wasn’t even his appointment, the chief asked if she could look at our boy also, and she lifted him up on the table to engage his muscles and reflexes as well. And then she asked if she could check mine. My mind was whirling at this point, with a hundred different questions.

When the examination concluded, the youngest went back to perusing the shelf of toys and books, and the Chief of Pediatric Neurology turned to address us. She said, “in all my years here, I have only seen one other patient with these symptoms, and he had HSP.” She went on to explain that she would request a geneticist to come talk with us, then she bustled out of the room. I sat there wide-eyed, my heart pounding with a sense of dread. Our kind doctor went on to explain that Hereditary Spastic Paraplegia (HSP) is an extremely rare, inherited condition that causes progressive weakness and spasticity, most often of the lower extremities. He said that they would have to do a brain and spine MRI and some genetic testing to confirm, but clinically he was already giving the diagnoses of HSP based on his exam. He said we would need to be seen in the physical rehab department for Botox and AFO’s (ankle braces), and that we needed to increase the number of days in a week we were receiving physical therapy. He was so kind and gentle, and after so many harsh and busy doctors, it was such a gift to my heart that this doctor showed intense caring and compassion as he delivered the news that was about to change the landscape of our future. A woman from genetic counseling came up and asked me about a million more questions, and then we walked back out into the brisk gray to go on about our lives.

The approval for the genetic testing took for-ever, and once the blood was taken, it took even longer to get the results back. In the meantime we set about getting the MRI. The first time around my girl walked in brave, but when the icky contrast was pushed through her veins toward the second half of the scan, she got uncomfortable and wiggly and eventually they had to discontinue the scan. The second time we scheduled it, I requested she be sedated so she would be more comfortable for the two hours laying flat on her back in this noisy tube. If you have read my take on the MRI experience (click here), you will know it’s not my favorite thing, and I was feeling very protective of my little treasure, and a little sad they hadn’t sedated her to begin with so we wouldn’t have to go through this again. The second time we showed up for her brain and spine to be scanned, we got through the fear of another IV, and then she drifted off into a silly, giggly sleep while the great machine rumbled and clicked. After that it was a lot of weeks of waiting, and not only did the thoughts leave the forefront of my mind, but I truly started to convince myself that the results were going to come back fine and we were going to move forward grateful that this wasn’t going to be part of our story. I mean really, there has been more time than one that a doctor has gotten me all worked up that my kid has something serious wrong, and it’s turned out to be nothing. We’re good.

I’m sure by now you have figured out that we did not get that “nothing” report that I hoped for. We came back in to go over test results and for an official exam of the baby boy of the house, and received the confirmation that both of them have mutations of the genes Tecpr2 and Kif1a. My sweet babes, 0.5 in 100,000 people with this neurodegenerative disease.

Later I will share with you what we have learned so far and what the immediate future looks like for us. There has been grieving, but also hope and determination as we figure out how to best roll with this new challenge.

Determination is strong, joy reigns, hope is *always* here.