…the prettiest Valentine that I ever did see

I remember the first Valentine’s day without her, it as the day after her funeral. It felt like a blow to the heart… to be here without her while she should have been delivering her homemade Valentine’s. All of the sudden Madeline was gone and the world not only kept on moving, it kept on delivering Valentine’s. I was overwhelmed- Madeline was gone but my garage was filled with boxes of Valentine’s and gifts. There were bags the hospital sent home with us and gifts from her First Communion. It was so overwhelming…

I started to go through all of those kind gifts- a process which took weeks of sorting and donating. All the while trying to restore order in a world now piled with chaos and pain. There is little I remember about those weeks. I do remember searching and searching. I know now I was searching for a ‘new normal’. I was searching all of the time for the elusive and nonexistent normal… the ‘once was’… the life before.

Madeline was in the hospital for only one day. That day as we met with Doctors so they could remind us over and over of the terminal tumor our daughter had. We spoke of palliative care, living now so we could be sad later… we were in shock. While we met with Doctors and cried in tiny closed in offices, Madeline was cared for by an amazing staff of nurses and child life specialists. They kept her company, let her be a kid while we absorbed information and pain. I remember the child life specialist decorating a little doll with Madeline, with an IV she got to use a syringe to put water into. The doll has a little mask and hospital gown. It was a way to help children understand procedures and explain pains. I remember sitting with her as she ‘doctored’ her doll. Later that day we packed up our things and drove to Target to pick up her meds. I didn’t really think of the things we packed up until the day I set time to look though and sort. I found a book on grief, hearts cut out to be a garland, a few books and her doll in her hospital gown with her marker drawn smile.

That was February 14, 2012. I thought about how stupid it was that everyone else was enjoying and celebrating love and togetherness. I was trying to pretend for Amelia and Lucy that it was a fun day of candy and smiles. They might have believed me, I don’t remember. I was feeling overwhelmed with the chaos and the missing… and then I read the decorated hospital gown. I hadn’t even really looked at it before that moment. Right there, next to the fake IV Madeline placed and the bandages she wrapped was “I ❤ you   Happy Valintiens day you”. She left me a Valentine.

I always know Madeline loved me, she loved big and well. I always know she is with me. There are times though that it is different- it is a little message from her. I do believe she and others communicate messages in many ways. I also know that we have to be open to see them, and to love them for what they are. I could have chalked that doll up to coincidence, but as you probably know I do not for one second believe in coincidence. I am constantly in awe of the tapestry God weaves that is my life… I always imagine it to be very colorful and perfectly woven for me. I don’t often understand the pattern or colors of a time- but I imagine that when I stand at the end of my time here on Earth I will see the most unique and beautiful tapestry- just as Madeline did. The amazing part is seeing how her tapestry keeps weaving… how she brings herself along.

Madeline is my most unique and priceless Valentine… she always will be. I am forever in awe of how she was preparing us for this world without her… and I am grateful for the little gifts she sends.

Happy Valentine’s Day may you be full of togetherness with the ones that matter.

❤ ❤ ❤ ❤ ❤ ❤ ❤ ❤ ❤ ❤ ❤ ❤ ❤ ❤ ❤ ❤ ❤ ❤ ❤ ❤ ❤ ❤ ❤ ❤ ❤ ❤ ❤ ❤ ❤ ❤

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The Good Ole’ Days

We hear it all the time when we have young children, especially when they are acting like little children. This weekend with my nephews at the hotel an older couple watched the boys with a big smile and spoke of their grandchildren. After a little while the man came over and said to us “You will miss this, it goes by faster than it feels.” I thought… man I know. I really, really know.

I miss that time, even though I never thought I would. I used to hear those people and think, I am sure they are right but damn how can I miss this exhaustion and their neediness. I am not needy, I raised girls with rockin’ OT skills and pushed them to be independent from an early age. I loved watching them do things all by themselves, it made us more of a team. We made it through the hard times, or so I thought. I don’t even remember back in the survival mode… when I made it through days with only hours of sleep. I can’t remember how I got the kids to sleep better, or what I did when they started waking up 2 or 3 times in the night. I don’t remember those months of teething and pain for my babies (and me). Vacations and restaurants were.not.fun.at.all. We were gluten for punishment though and still tried. Our friends would host parties, we were the only couple with kids… so our babies would TOUCH EVERYTHING… stereo equipment, hot platters and more. It was NOT fun. It is life with a toddler… or in our case a buncha toddlers.

… But damn they were cute girls.

Gone are the days that were spent at the park just playing and snacking with friends. Gone are the days of toting 5 girls to the bathroom and helping them get their pants down in time, and not caring that the park had dirty bathrooms. Gone are the days of putting on a swimsuit to take my girls into the water at Thompson’s Lake, begging them to come play in the sand so I could sit. Gone are the days of amazing workouts with my friends while my girls enjoyed daycare, or preschool. Gone are the days of random lunch picnics in march, at the first moment we saw dirt under the snow. Gone are the days…

I really miss those days. I miss my trio of Musto Chicks, my 3 under 3. I miss our days. I miss making a day out of a sprinkler, naked kids and popsicles… then a nap. I loved those days when I lived them, I don’t regret or feel like I missed things back then. I just fully and wholly miss those times.

My girls are growing and changing. They are mature beyond their years, yet perfectly naïve and positive. They are their own selves. They are creative and independent. They cook themselves, they cut veggies with sharp knives, they plan best day ever’s. They sometimes do their reading and practice their instruments. They are terds sometimes and challenge me to the core. They are pretty spectacular and exceptionally mediocre people. They go in the water without me, they go for bike rides alone. They enjoy time in their rooms without me… I am no longer the coolest person they have in their life. It is a mixed feeling.

I really miss ‘the good ole’ days. The days of adventure and naps and a car full of snacks and diapers… days spent at the park, story hour and hikes in the Pine Bush. I didn’t know I would miss those days so much. I guess that is part of it, not knowing how much we will miss something so much. Would we live it just right if we knew how much we would miss it? Would it be the ‘just right’ experience if we knew what we would miss? I think maybe we get to enjoy it more not knowing, not comprehending how much we will miss it.

So all those times people told me I would miss it and I brushed it off and kept right on going… wiping

butts, donning my bathing suit in the water with my kids and hoarding goldfish when they were on sale… were done just right- so I could miss them.

All those moments I had a Madeline, the moments I owned my 3 chicks were done just right for me to miss later. I wish I could peek back and be in those moments again. I guess life is not like that though… just moving forward and looking backwards. I smile looking back… I cry thinking back. What an amazingly simple and painful life I have to miss. Look back on your ‘good ole days’… think of all the amazing and simple you never knew you would miss…

 

Thank you Madeline Elizabeth Musto for all those ordinary and lovely and difficult moments I miss…

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What a flu season we have…

Lately all I hear about, other than politics, is the dangerous flu season we have entered this year. Unfortunately, the flu vaccine that was made and administered to most is not the strain that is lingering on doorknobs and getting coughed all over the place. Many teachers and kids have been hit with the truck that is the flu these past few weeks. I have been cognizant of the girls and their illnesses, trying to be really aware and proactive so if we get the flu we are hydrated and as rested as we can be. There is enough talk of the flu and how many people have died- that when Lucy had a fever last week and it turned out to be Strep she was very scared it was the flu and concerned because she had heard many children had died. The numbers are alarming and the season started early.

It should make you mad that so many have been affected and that 37 children have died of the flu. It should make you mad that we live in a world where so many still die of a common illness- the flu. A whole season of it, a whole chunk of the year that a pretty common illness can steal so many lives…

Imagine an illness that is rare and has stolen 819 lives since the start of flu season- 819 children dead. This illness is so rare that most people have no idea their kids are at equal risk to develop the disease. The roulette wheel could land anywhere. Washing your hands, covering your cough and Lysoling the heck out your classrooms and homes will do NOTHING to stop it. 819 kids who said goodbye to their families and headed off to heaven- a place where there is no pain.

You could be going through life at your normal pace, take your child in for a bruise or a broken bone- BAM… the words “Your child has cancer” enter your life. Your life will be forever changed. Most describe the day of diagnosis as the day their lives stopped. That day starts a whole new life- BC (before cancer) and AC (after cancer)… what that AC journey looks like is never good. It will change your forever- even when are not ready for it. Honestly, who is ever ready for it.

Childhood Cancer will require one or more parent to take months off from work, praying that they can maintain insurance and cover bills needed to save their child AND keep their homes. From the moment of diagnosis, the world changes… hospitals become the norm, ports placed, surgeries, ingesting poison, radiating cancer- with the hope that the radiation does not cause more cancer later. Watching your child being taken to the edge of death and hoping that they can get their bodies back to healthy. Since October there have been approximately 5,260 NEW childhood cancer cases. That is spread across several very different types of cancer (all understudied and underfunded). All of those families were in the middle of living their normal lives… and then their new lives started.

This makes me MAD. Does it make you mad? It should. The flu is dangerous, it is spreadable and predictable. We know where it comes from and how it spreads and it has stolen the lives of 37 children. Those 37 children still should have had 1,850 more years combined to change the world… to make this place better and kinder and cleaner.

We do not know how most Childhood Cancer is ‘spread’, how it chooses one child and not the next. It is a true roulette wheel in our world. We don’t know where most of the cancer comes from- what made those cells grow in that way and how to fix it. In adults many cancers are linked to life and the world- not so true in Childhood Cancer. Those 819 children should have had 40,950ish years combined to change this world- to make it softer, kinder, cleaner and more. Cancer took so many futures…

I don’t want the flu. I don’t want my child to get the flu. I wash my hands, I wipe my door knobs, I cover my cough. My girls do the same. How can we avoid Cancer? What can we do to prevent the words “Your child has cancer”? Hope. Pray.

Raise awareness. Increase funding. Share our stories. Make the world know that this is not RARE… Childhood Cancer is not Rare. We need to do better… we really do. We need to get more mad- we need to get more active. We need the world to see Childhood Cancer plastered on their news and their feed… we need change. I know what the words sound like, they echo in my head daily- “Your child has terminal cancer”. I don’t want you to hear those words…

Let’s be better and stronger and louder. While you are at it wash your hands, cover your cough and wipe the door knobs.

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