Keep the Faith

Parish Narthex decorated for Christmas

I should have anticipated a challenge in my faith journey when at 18 months I had to sprint up the aisle of our church and was met by a woman wearing beautiful heels and a red suit. Looking up I gasped the woman, beautiful, she smiled. Holding Seraphina she smiled at me, I was teary for she had already lapped the entire church twice during the Consecration. I was hot with eyes on me. I felt them. I saw them.

As I scooped her up mortified, I carried my wiley little love out and hoped the other four children would make it through mass in one piece, alone. Thank goodness that day it was daily mass or I may have been uttering swear words in a place of worship under my breath.

While I stood in the Narthex of the church I continued to cry but chalked up the crazy behavior to Seraphina being the fifth child and my inability to control here -exhaustion.

As time went on, our trips to church became more and more challenging. I still remember sobbing after multiple experiences in multiple churches where people asked us to leave and one experience where I was told never to return–not by a priest or deacon but a Parishioner.

As time went on, I believed I was beginning to lose faith. Truth be told, I needed to dig in deeper and rely on my faith more because my children, all of them were suffering with my anxiety each week as we piled in our car and headed to mass.

During the pandemic, we began attending another Parish, one in town. We had been there before, prior to sending our children to Catholic School. We returned. The first week, it felt good. The second week, it felt better. The third week, my sweet Seraphina had a day and while I exited the parish praying I wouldn’t cry, I was met with a woman who became a guiding light in our family’s return to religion because reality was we had never lost faith, we forgot to lean into it and ask others to accept our family, for who they are. Slightly messy but full of love.

I knew to make this work, I had to let go. Of my expectations. Of what others think of us and today it happened. She sat quietly coloring during the readings–as she always does but when it was time for the Eucharistic Prayer, she did something that blew me away. She stood. I walloped by husband smiling beneath my mask celebrating this triumph. She stood, unprompted. And when we knelt, she knelt too. I sucked in my breath to hold back tears. I tried not to cry and whispered a short prayer of thanks. Today, I was reminded I had the faith all along I just had to wait for His time and my heart being open to hearing Him and where he was inviting me. To follow his plan.

As I reflect, I am reminded of tonight’s homily. Simply put it was about The Holy Family, about Mary, rocking her infant, wondering about the future of the child she held. We were reminded of the way one feels with new life fresh in your arms, full of happiness, wonder and perhaps anxiety over what may be to come. We all feel it, and Mary said yes. To her husband, to God, to her Son and promised to be faithful in His journey because his journey will be better than any journey we have planned for ourselves.

Today I am reminded why I too, say yes. To parenting. To faith. To all my children. Even in darkness, He has a path that will lead me to His light.

Let us celebrate the joy in the moment, let us pray for strength and peace and as we leave this year behind, let us remember that His plan is greater than any we can plan for ourselves.

The Gift of 2020

Its nearly Christmas. As the house sleeps quietly, I have taken time to sit and reflect. This year has been a lot. I won’t lie, we have had more than our fair share–as everyone else has, but there has been beauty. Sometimes, when barely treading water or praying to be able to come up for air, we forget. We forget there is beauty.

When the pandemic began and we had our “two week break” from school, I was up for anything but after a broken collar bone, numerous tries to climb out a window and a child shaving her head, I realized I needed help. More help.

Our daughter has been diagnosed with autism since she was just two years old. Its been a journey. From not having an insurance plan that covered therapy, to a fight to obtain it and then realizing the insurance I had didn’t mean we would have the therapy right for us.

For years, since we had the therapies covered, we have tried to find a company that would work, for our daughter most importantly and for our family. We had found great therapists but for one reason or another, they never worked out.

Enter Covid.

Enter my need for help.

Enter Miranda.

Yes, Applied Behavior Analysis Therapy is controversial but for us, its right and the greatest gift we have been given this year is this young woman, trained in social work, who is with us, daily.

In July when we first onboarded with the company, I was concerned. The first therapist left without returning, if she could have run while screaming she would have. We know, our daughter is a lot. She’s not anything like any BCBA or ABA Therapist has ever seen but she’s ours and she’s incredible.

Finally, the call, the company found what she felt was a perfect fit. Enter, Miranda. She was right. She is perfect. Since July, almost every day, Miranda makes the hour long commute to love our daughter, where she is that day.

Yes, there is work. Yes, there are challenges. Yes, she pushes her but in four short months, we have seen so much growth. Not only have we all fallen for Miranda but we have seen Miranda give us the greatest gift we could ever receive, glimpses of the daughter we once knew, the one we once had. One that interacts, one that laughs, one that plays and one that is beginning to understand more and more each day.

We could all focus on what wasn’t in 2020. We could focus on the loss, the pain, the suffering. Its been here. For all of us. However, I won’t. I will choose to see the gift of 2020.

Dear Miss Miranda, you have made our world the best it could have been this year. We truly are grateful to you.

The Christmas Gift

As a child, did you ever wake early with anticipation? Were you one of the children who rushed to see exactly what was under the tree? I was. Patience was never a strong suit and surprises are something I am still not a fan of. In fact, Christmas memories are some of my favorite from my childhood. My mom, her sisters, sometimes her brothers, their spouses and up to 11 kids crammed into one home for up to a week celebrating not only the magic of Christmas but the blessing of life, of family.

We had some crazy times, from almost losing a child in the snow to my all time favorite memory waking early to meet my cousin face to face crawling around long before we were “allowed” to be up. As we faced off under a pile of gifts we both startled and then gulped in as much air as possible to keep from blowing our cover. The belly laughs and joy we held within continues to resonate in my mind nearly 30 years later.

The excitement of Christmas and preparing our hearts and mind for the holiday season could be compared to the preparation for parenthood, for the dreams you create for the children you expect. Sometimes however, you receive the unexpected. In those moments, emotions swell. Perhaps your weighed down by disappointment, fear, anxiety, pain, sadness. Perhaps you wonder how you will feel strength or find a way to be thankful for a life you didn’t anticipate? In those moments however, if you take a deep breath and step back you may begin to see it, to feel it and to understand the gift is so much more than what you actually wanted it was in fact what you actually needed.

Autism is like that. The last five years have changed almost everything in our lives. While it has taken so much, in the end, when I choose to look its given.

Today, I reflect and see how much I have grown, how much this wasn’t supposed to be a journey but my destiny to challenge, change myself and walk beside a child who was intended for me.

In dark moments, I have found what matters. People who care have come out of places I never expected. True friends have stuck around and I have been blessed to meet people in my life I never would have encountered if it weren’t for autism.

Autism has taught me patience. Its taught me to be present, to acknowledge the small moments of growth. It has taught me that unwrapping the most precious gift may not look like what I wanted or expected but in the end its better than I could have ever imagined.

As this holiday season is upon us, I could choose to be sad, to be mad, to be angry for what could have been or what I wanted–I spent too many years like that. Instead, I can choose to seek the joy in what is, in the moments that matter and cherish what we have because reality is, there is a gift when you choose to unwrap it.

Those Precious Hours

If you have a child anywhere on the spectrum, chances are once or twice you have wished for just a few more hours of sleep. Heck, who am I kidding. Hours? Minutes or seconds would suffice.

Its no secret that children who have autism often have difficulty sleeping. It has been estimated about 80% of all children with autism struggle with sleep issues which often lead to other issues in these children’s lives. I do believe that its because they are constantly thinking, learning and wanting to know more however I am no scientist and recently scientists have been looking at a correlation between melanin and persons living with autism. For years, my daughter was one of those children who struggled. Even though her infancy had passed, myself or my husband would blearily wake and try to care for her at all hours of the night. That works for a short time but one can only take so much. Once in tears I told my husband I just couldn’t go without sleep anymore. His response? “You know they withhold sleep as a form of torture sometimes”. He’s right and honestly after a few months its a challenge but years into this journey, we finally found what works for us.

While our daughter may have a day or two each year where she struggles with sleep, we have found what works for us at home and now she will even begin her bedtime routine herself when she feels tired. Our process may look different from your own but I can you a few tips about what worked for us and perhaps you can use what works and create your own routine and hopefully find yourself and your child better rested for it.

For us, we have made a conscious effort to make sure we have the same routine putting her to sleep each and every night. Each night before she heads to bed, she takes a warm bath. We add a drop or two of lavender oil. While we don’t set her exact bath time, she begins to calm herself and she knows that this is the beginning of her bedtime routine. Once clean we head to the bedroom and get cozy in dim light. I have found when all the lights are on her body struggles to begin calming. Once dressed, she knows its time to brush up and floss up. Then she snuggles into bed with a book or two. We read together and tuck her in. If she’s had a busy day and seems overwhelmed we may use melatonin however most often after books she drifts to sleep easily.

Sometimes staying asleep isn’t something she can do and being a child who elopes and gets into trouble we needed to set up a system where if she woke, she’d stay in her room and stay safe. A friend told us about something she used for her toddlers and we had to give it a try. For kiddos with autism, many find boundaries and schedules to be of comfort and so we picked up Mella by Little Hippo. This little alarm has been a gift. With varied colors that allows your little one to know when its okay to leave the room, even when they wake, they stay safe in their room until Mella turns green. While this took a little practice–read lots of trips BACK to her room when we first got it, its now common knowledge until Mella turns green, our sweet girl is in her room, even if its the middle of the night.

While no sleep plan is perfect, with a plan in place and consistency in following that plan, you may find yourself a better nights sleep! Here is hoping for a Silent Night this Holiday Season.

To the Friend Who Makes this Journey Okay

I won’t ever forget the day we met. Your quiet presence was something that was beautiful. It was apparent from the moment I saw you that you were a gift. As we sat, wide eyed, entering our first year of school with our babies I wondered if you felt the same way I felt? I wondered if you longed to have that time that seemed to be stolen from us. When our babies should have been home playing with toys, going to library story time and joining Gymboree, we were putting our toddlers on the bus for support.

I knew moms who had children on the spectrum but finding someone in the stage I was at seemed almost impossible. Then there you were. I remember exchanging numbers and the delicate dance of “mom dating began”. After school one day we had our first play date for the kids who barely acknowledged each other and I knew I wanted this to work but little did I know that instead of work, I was finding more than a friend, a sister whom I had never had.

We have been through more than the average pair. Pair of friends that is. From late night phone calls to a weekend of respite, we have a bond that has grown through the years. We see things most parents never will. We have hopes most parents won’t understand we have a bond that can’t be created but is given because we are in this, this life, together.

Often I lament what autism takes from our family. Its takes a lot but it also gives. Sometimes you have to sit and focus on what it gives to realize how lucky you are. Autism has given me you. A friend that understands the life I live without explaining. A friend that listens as I fearfully cry and worry about what tomorrow will bring. A friend that celebrates the moments that seem insignificant to others. A friend who has an understanding that others never will, because they can’t.

As we sit within the holiday season I realize that there are things to be thankful for and one of them is you. Thank you for being the friend I wouldn’t have without autism. Thank you for becoming my family. Thank you for accepting my daughter as she is, for loving her where she is and in turn loving me as well. Thank you for your listening ear, your honest voice and your presence that soothes and calms me.

Truth be told, I couldn’t have picked a better friend to walk this journey with and honestly I don’t know if I could do it as well without you. No matter where we are in life, I will be here for you. I will be here for your family. I will be here for your boys. Always. My friend, thank you for making this journey one I can handle especially with you by my side.

Getting Through the Holidays, Autism Style

The Christmas I Knew We Had to Make Changes to Make Christmas Happy

Every December as we decorate the tree, I wonder just what Christmas will look like for us. I remember seasons of beauty. Trips to the zoo to see the Christmas Lights, bundling into the car with hot cocoa and marshmallows, driving around to see the lights. I envision my husband’s work party that the kids delighted in the Jolly Fellow joining them as they visited and told them their wish list. I picture sleepy eyed daddy as he is just as surprised as the children as they open presents. Those memories are treasures. For us moms, some of our best moments are the ones where we see our children in awe of what “Santa” brought and the feeling of satisfaction knowing that you made their day special.

For us, this was my favorite time of year but then, it changed. As I looked through photos of the holiday’s of the past, I realized that the Holiday’s, since autism brought with them a sense of stress I had never experienced before it entered our world. I still remember the Christmas I realized this. As my older children pushed gifts into my youngest daughters hands, she stared off into space, left the room and felt overwhelmed. It was apparent to me that things had to be different so that we could still make memories, good ones, no matter what.

Knowing that the holiday’s coming our way would look different I still acknowledged that I had four other children that deserved the magic they dreamed of and so I had to choose to do what was right for us. Perhaps these ideas may in fact help you.

First, set boundaries. The holiday is a season. With our children we prepare by trying to clear our minds and hearts. We work to do for others. During the beginning of the month, doing small things with great love tends to warm our hearts and often reminds our family of what the season is truly about. Remember, while the holiday season is magical you need to hone in on what is most important, your family. Your children. This means that it you may have to set boundaries. Boundaries can be tough. You can feel overwhelmed saying “no” but sometimes saying “no” is the gift you give yourself. If your child struggles outside the home or transitioning from even to event, its okay to prioritize.

I also suggest educating. I see so often, one of my family members said I should just explain it to them or tell them, or do what I need to do for a child is a child. Reality is, if we could we would. They don’t do this to be dismissive or unkind but instead I believe our families and friends try so hard to include us so we don’t feel left out. They see the challenges and suffering that we face and they want to support us at all times and lets face it, those invites feel so good. They mean so much but its okay to say “no”, remember to thank them for the invite because they too need to know it means something to you even if you can’t attend.

Next, plan ahead. If you have other kids want to attend an event or stay longer, take two cars. Make an exit plan. Set a small goal. For us, this idea came about with my husbands work party. While fun for my other children, 110 kids, a jolly giant man and balloons and crafts was overwhelming after an hour for our daughter so we began to take two cars. I would make a “cameo”, allow her to experience what she could and duck out, early.

Third, be honest with yourself. While we ALL want to be together all the time, sometimes, its okay to realize it just won’t work. One of the greatest gifts I ever gave myself and my family was saying its okay if we can’t take her. She may join us another year and it may be better for the other kids if they don’t have to leave early, witness a meltdown or feel they are just as important as she is, that our attention can be turned totally to them.

Fourth, let go, rid yourself of expectations. This may be the most important piece of the puzzle. For years, I wanted Christmas to continue as it was before. We would sit around and each open a gift, ooh and ahh over it and celebrate together what the others in the family received. While my kids begged for Seraphina to open her gifts, she just wasn’t ready. Finally, last year I got it. Seraphina came in and out of the room we were in. We opened gifts and when she was ready we gave her a chance. Her beginning to understand the process wasn’t just exciting for me and her father but the children too. They delighted in her joy and when she left to play with her one gift, I was reminded of the beauty of autism. They see, feel, hear and taste so much more than we ever can imagine. Witnessing her peace with one thing while others long for more is a great reminder that when we have what we need, we don’t need much more.

As we near the Holiday Season, try to take a deep breath. The holiday may look different but if you take time to make some minor changes perhaps the Holiday will be better than you could have imagined.

A Time for Giving

As we enter into this holiday season, its not like any other we have faced. Many people have struggled this year. Perhaps physically, spiritually, emotionally or financially. No matter who you are or where you live, this year has been a challenge.

Each December we always celebrate the life of Seraphina’s Namesake. Long ago, a little girl danced into our family’s world and changed the words within my mind. On life. Living. Adoption. Personally, I struggled for some time with my own adoption believing that was my cross to bare but now, I celebrate the fact that my parents selflessly chose to welcome me into their home.

Years later, after meeting my biological family, a child was born and brought into the adoptive family I came to know. This young child changed the world. Her light was present in her family’s life and in so many lives around her. In December we celebrate her legacy. Our sweet Clare lost her battle with cancer on December, eight years ago.

Shortly thereafter I found out I was expecting. Our sweet surprise, Seraphina bounded into the world. Seraphina, meaning angel and her middle name for her cousin Clare, whom she would never meet.

Each December, we try to honor her memory by doing little things for others, and this December is no different. I am excited to begin sharing her love for life, her positivity and her need to touch others with her smile as she radiated beauty, tenacity and faith through her long battle with cancer.

We often say, Clare sent Seraphina to help us. I think she told God how we loved him and wanted to draw near and Seraphina’s journey was just what He had in mind.

This year, I am excited because our sweet Serrie is ready to join in the giving. We will share Clare’s story and watch her videos with Serrie and someday maybe she will understand the enormity of the name she carries and how special she truly is.

If you are able, Serrie and I challenge you to grow in joy this season, doing for others, please do so, share and tag us, #messyblessymomma and we’ll share your story and giving with others!