Monday, July 28, 2014
There is a therapeutic term I have used both professionally and personally, called "stop the action." When I use it in reference to therapy, I am encouraging parents to step back in the middle of chaos, get on level with their child, pause, and stop what everyone is doing in order to only focus on the connection between two people. The connections and moments that bring two people together in understanding and physicality are the most important of human experiences, and even the most "disabled" of people, like my Avery, need, thrive on and enjoy these precious moments of unity. Every day I have a moment where I take pause, and reflect on the abundance of love that surrounds me. In the four months since my last post, I have been busy watching my beloved baby grow and change, and have enjoyed every moment of being his mom. Anyone who ever thinks they couldn't possibly ever love a second child as much as the first probably hasn't had that second child yet. The same is true for the third, and in our case fourth child. As our family grows, so do our hearts. And something about knowing he is my last baby has given me even more of a reason to hold sacred his infant days, the hours nursing in the night, the belly laughs, the coos and babbles, and even the short lived tears. Being a mom to all of my children is such an incredible gift. It is the experience of a lifetime, and even in the most difficult moments, where my special needs child has smeared her poop, my 3 and 6 year olds are fighting non-stop, the baby cries, or the house looks like a bomb went off, I am able to "stop the action," take a deep breath, and remember to be grateful for this beautiful and crazy life that I am so fortunate to live.
Only a few times in my almost 9 years as a mother have I truly been "stopped" in my tracks. Halted from this beautiful journey and thrown into disbelief, anger, denial and fear. The first, and most obvious was of course when Avery began her developmental regression, and spiraled into her own non-verbal world of Autism/Rett Syndrome. For years I wanted to prevent this experience from defining me, until I realized that it already had, and that was actually really okay. I began writing this blog as a cathartic way of coping and coming to grips with what we were dealing with, and the anger and overall profound sadness I felt at the thought of my daughter's life being stripped away from her. I still have moments where the sadness feels like a kick in the stomach. Not so much anymore because of the child I felt I lost, but more because I just can't imagine what it must be like for Avery to not have a say in how anything goes in her life. It horrifies me at times, and at other times I feel extraordinarily grateful (then later guilty for feeling that way) that Avery is so easy going. She literally NEVER complains. She just spent 55 hours hooked up to an EEG in the hospital with electrodes actually cutting into her scalp (we didn't know that until they were removed) and she tolerated it LIKE A BOSS. As long as that kid has her ipads, she is one happy camper. But nothing can stop you quite like the news we got when she was 19 months old. It is life changing to say the least.
Last Friday I was stopped again. The worst is when you don't see it coming, and although I guess I should have, I really didn't. You see, for months I have been concerned about Paxton's motor development and his club feet that (despite 8 weeks of casting), are still not corrected. I worked in Early Intervention for years, so the therapist in me jumped in to action and immediately began OT, PT and seeing an orthopedic doctor for his feet. Several weeks ago, the orthopedic surgeon recommended we take him to a neurologist to investigate "why" Pax was showing some delays, and since I already had an appointment with Avery's neurologist for Avery, I took Paxton along and asked him what he thought. THANKFULLY, he opened up an appointment on his calendar to see him (normally a few months to get in as a new patient) and after a thorough evaluation, he ordered some blood work and an MRI to investigate possible muscular dystrophy's, or possible cerebral palsy. Oh, and as a side note, Paxton's head size, he noted, was off the charts, while his weight and height were both below 50th percentile. I ALMOST cancelled the MRI. I didn't want my baby exposed to toxic anesthesia, so I asked our somewhat holistic pediatrician what she thought, and since his head had increased in size so much from 4-6 months, she said we had to do it. Which brings me to Thursday, when he had his MRI and did just fine with being put to sleep. He was a trooper, especially since he hadn't nursed in several hours by the time they took him back. The next day, last Friday, Bryan and I were in the hospital for Avery's EEG, and our awesome neurologist came by and spent over an hour with us regarding Paxton's brain. That sweet man showed us the images, explained in detail what they meant, and walked us through what was likely to happen next. Paxton has ventriculomegaly. It is a condition in his brain where the lateral and third ventricles are over twice as large as they should be, and are filled with cerebral spinal fluid. He also has a subdural effusion on one side of his skull where fluid has accumulated. The neurologist drew me a picture and explained how Paxton's motor skills and even his feet are a result of the pressure on critical muscle fibers in his brain. If left untreated, brain damage will continue to occur. Wait, what? Stopped. I almost lost my breath. I didn't shed, and still haven't, a single tear... but I was stopped. My perfectly social, happy, babbling, bouncing baby is going to have brain damage... again. What. Is. Wrong. With. This. World. I am numb. My whole world has stopped.
So now what? I am forced to move to action. No more stopping. We continue to investigate, I get my priorities in gear, set my board exam studies aside and move. Move on to determine what caused this. See several more doctors. Paxton has been referred to a pediatric neurosurgeon to see what surgical options there are to relieve the fluid build up. We will see the neurosurgeon later this week or early next week. Our neurologist thinks a shunt placed in his brain draining down through his neck to his abdomen is a likely possibility that could really help Paxton thrive. I am scared. I LOVE LOVE LOVE this baby. I am so scared that the shunt could malfunction, that the not doing the surgery or the surgery itself could cause irreparable harm to his brain. I must keep moving. Stopping means thinking and thinking is so painful right now. I just want to hold him. Forever. I want to STOP in this moment, where he spends his days laughing, smiling, reaching for me, and breastfeeding and freeze time.
If being a mom x 4 has taught me anything at all it is that we must power on. Live in the moment, count our many blessings, and always find gratitude. My amazing husband is full of optimism that everything will be fine, and I am going to try like hell to borrow that perspective for a while. We have survived so much, and surely this will be just another event that makes us all stronger--but I must admit that I am weary. I am hopeful, but also realize how incredibly unfair and sucky this is. My perfectly innocent, adorable baby boy doesn't deserve this hardship. There is no "reason" my kids, or any kids should have to suffer. So in your prayers, thoughts, wishes, or good vibes tonight, please remember Paxton, Avery, Kaylin and Presley. They ALL are going to be impacted by this, and they need all the love, understanding, encouragement and attention we can muster. Kaylin spends her DAYS holding, or wanting to hold her baby brother. Much like me. Presley is so proud of her baby, and loves entertaining him and making him smile and laugh. The girls do not yet know what is going on, and we are going to keep the terms simple so that we do not scare them. I will keep you all posted as we discover more in the coming days and weeks. The latin meaning of Pax is PEACE, and as we seek that in our hearts tonight, we hope you will join us in our journey towards wellness, and remember to "stop the action" in your own busy lives to relish the important moments you share with loved ones. It is the MOST important thing.
Friday, March 21, 2014
"Our family is a circle of strength and love, with every birth and every union, the circle will grow, every joy shared adds more love, every crisis faced together, makes the circle stronger."
As time tends to do in busy families, the last 8 weeks since we welcomed our precious son have flown by in an instant. Paxton Graham Beeson was born via c-section on January 10th, and in a moment, our hearts grew bigger and made room for one more little love of our lives. Surprisingly, rather than adding stress and chaos to the mix, sweet Pax (the Latin translation of Pax is “peace”) has brought us just that. Peace. A calm to our often stormy lives. His mere presence requires us to slow down, and as with all of my precious babies, my favorite moments lie in the hours spent every day and night nursing and staring at this innocent, perfect and adorable baby.
As is par for the course in our household, there are always several things going on to keep our minds and bodies busy, and even a new baby doesn’t stop the activity!
I am so happy to report that in the last few months we have seen some really positive changes in Avery’s ability to connect to other people. She REALLY seeks out eye contact and smiles all the time now, and is doing a great job guiding us by hand to what she wants and even pairing that gesture with a hum sound and a gaze from her big, beautiful blues. I have no idea why she has had this sudden boost in awareness, but I am so (cautiously) optimistic! For many of you who haven’t experienced the roller coaster of constant developmental regressions, you may not know why I am cautious about my optimism, but for those of you who have, you know that sometimes it helps to protect yourself from getting TO excited as sometimes these skills leave our precious kiddos as quickly as they arrive. But, nonetheless, I am relishing in our new found connection to our sweet and awesome non-verbal kiddo, and enjoying every gaze and gappy toothed grin.
Kaylin, our 5 year old firecracker, LOVES being a big sister again and asks to hold Paxton constantly. She is such a leader (some would call it extraordinarily bossy), and is loving gymnastics and school. Kaylin’s teachers, caregivers, and therapists (as well as mom and dad) have always had suspicions about her having ADHD, and after watching her struggle to attend to school and instruction from extra curricular activities, we decided to have her formally tested, and low and behold, in the most UNsurprising news of the year, she does indeed have severe ADHD. We are making some changes that will hopefully help her learn and flourish, and maybe not be in constant trouble around here.
Presley has also taken quite well to her new found role as “littlest big sister” and continues to thrive in preschool and is also about to start gymnastics. Presley is quite the comic, and keeps us laughing and smiling everyday. She takes her time with just about everything, and thankfully, is strong enough to push back when her big sisters take over. There is quite a bit of fighting that goes on between the girls, but more than that I am pleased to say there is lots of happy laughter and playing too.
We are extraordinarily blessed to report that our now complete family is doing well. We had a BIG scare for a few weeks as Paxton’s newborn screenings (which we repeated) initially did not detect T-cells, which would have meant that we had a major health crisis on our hands. Thankfully, after further testing, we discovered that he is JUST fine! He has an umbilical hernia which is no big deal, and may need some orthotics for a slightly clubbed foot, but no one is born “perfect” and so far he’s really doing fantastic and changing daily. His big gummy smiles are the highlight of our day.
When I started this blog over 5 years ago, I was certain that I would be documenting all sorts of progress for our sweet, disabled daughter. It was before facebook had really taken off, and I was going to use this site to share her triumphs and successes. Unfortunately, that’s not exactly what has transpired, but I will say that social media has really provided me with an awesome support network as we trudge through this journey as special needs parents. It is incredibly heartwarming to see so many of our friends share in our happy times and offer words of encouragement and support when we need it most. It provides me with a great level of comfort to know that our “friends” will teach their children to love and support people like Avery as the years pass, and are taking an interest in making sure her voice is heard, though she will unlikely ever actually speak another word. Rett Syndrome has taken so much from us, but it has also provided us richness beyond measure in the ways of perspective, love, tolerance, grace, joy, hope and lastly, peace.
photos courtesy of blessedbphotography.