The Power of a Parent: Conquering Guilt

   

        Guilt is a dark shadow that creeps into our minds and hides while we are overcome with our own self-inflicted burdens.  Unfortunately, every human being experiences it. Once a parent holds their child for the first time, they become engulfed with the love they share. At the same time, while you are basking in the joy of your new child, the weight of guilt starts to settle in and you can feel the entire world resting on your shoulders. Not soon after your child is born, you ask yourself a million questions. "When will he roll over? Should I be practicing rolling techniques?" "Is she suppose to be sleeping through the night? What did I do wrong?" The questioning of your own ability as a parent continues into different avenues. Over the years, making a decision about daycares, schools, friends, and extracurricular activities can be completely overwhelming. Parenting a special needs child can take guilty feelings to a different realm of questioning "What if I caused these struggles?" "Am I doing enough?  Will he every talk, walk, or eat?" The constant banter of guilt can consume your thoughts. 
        Last month, Jude and I were in our normal Wednesday routine of speech, feeding, and aquatic therapy.  We had an hour and half time lapse until he had Young Athletes practice. Due to the lack of time, I headed to the grocery store.  I parked our car under a shaded tree in the back parking lot. Once I was settled into the backseat with Jude, he ate his purred dinner and completed his medication regiment through the gtube. He quickly fell asleep. In hopes not to wake him, I crawled into the front driver's seat. Without any warning, my eyes filled to the top with water and in an instant it all came splashing down onto my face. Feelings of sadness and guilt enveloped me. All I could think was that my two and half year old never gets time to play on a playground, play with friends, and explore at home. Instead, I am feeding him dinner in a parking lot because his day is so busy and we do not have time to stop at home.  The past two and half years have been filled with doctor's appointments, six therapies, twelve surgeries, and more sickness than I care to remember. If I don't take Jude to physical and aquatic therapy, he may not be walking.  If I don't take Jude to occupational and speech therapy, he may not develop safe sensory input or learn to communicate with anyone. If I don't take Jude to feeding therapy, he may never eat solid food or feed himself. Slowly anger took over my emotions. Why is this the life for my fun loving, always curious, sweetest boy in the world? Why can't he just play or run outside? Many times, I place this unnecessary blame on myself.  I took a long, deep breath and dried my tears.  In the rear-view mirror I could see Jude sleeping so peacefully. I decided to consciously remind myself that, even though I do have to take drastic measures for Jude to learn functional living skills, those decisions have supported Jude in beating all expectations.  Most importantly, Jude has remained so happy because he knows he is loved.
        Every parent has crucial and gut-wrenching decisions to make for his or her child. Making decisions on what Jude needs can be life threatening, imperative for his development, and emotionally exhausting. Some days, I wish I could fix everything and just let him play at home.  On the other hand, when I observe Jude I know the guilt is unnecessary. He reminds me that he is happy with his life by tight hugs in the morning and big smiles as he is racing into therapy.  It makes my guilt of  his not "normal" childhood melt away.  I know it won't be the last time I feel guilt, but I know now the best way to overcome my guilt is watching Jude flourish...and of course, soaking up all of his smiles!

Mother's Day

         

 

          Today is Mother's Day. Everywhere you look we are celebrating. There are a million different mommy groups dominating social media, blogs reflecting on the strengths and triumphs of motherhood, and commercials about a mother's sacrifice. I suppose I should be spending Jude's nap time sleeping or doing some sort of pampering activity, but instead the time was spent reflecting on motherhood. The good, the bad, and everything in between.

          Everyday, I thank God for Jude.  Being Jude's mom is definitely a unique journey, but without it I wouldn't be the person I am today. The past two and half years, have been life changing. Here are just five of the million different ways that Jude has changed my life:

1. Feeding. Eating. Drinking. Let me tell you, it is not as easy as you think it is. Do you know it uses more muscle groups than any other physical activity? It's hard! How about 5% or so of the population do not feel hunger pains like the rest of the human race? You better believe Jude is in the 5%. Did you know that eating is not a natural instinct after 3 months? Trying to feed Jude dinner is like running a marathon...completely exhausting. Glasses of wine, listening to motivating music , Elmo's birthday episode on repeat during the longest half hour of my life... all for 2.5 ounces of pureed baby food. Patience is a virtue that is practiced on repeat during dinner.  This experience has taught me that something that seems simple can really test your patience and laughter is the best medicine.

2. Speaking is not necessary. Anyone who knows me, knows I love to socialize. It has always been my way of expressing myself in all of my relationships.  It seemed to be the natural way of communicating.  December 2014 proved me wrong because Jude stopped talking. This meant I would not hear him say "mama" anymore. I might never hear him say "I love you." It was hard for me to wrap my head around the idea of Jude never vocalizing his love and life to me. I was reminded of the saying "actions speak louder than words." It resonated in my mind.  Every time I am happy, he screams with joy. Every time I cry, he hugs me and pats my back. Every time he is fearful, he widens his eyes and begs me for strength. He does not have to talk to tell me about his feelings.  Jude has demonstrated unconditional love in a way I never knew.

3. Sacrificing. As most mothers know, you give up most self-indulging activities, but who wouldn't, babies are adorable! Something happens when you are pregnant and have a child. Instantaneously, you fall in love. You spend day and night worrying, planning, and analyzing every aspect of this little human's life. I experienced all of this and then some. At four months, Jude started adding in additional material for me to fret over. From that day forward, Jude would have ten surgeries, five weekly therapies, a gtube, and a long list of allergies.  Every other Wednesday is spent calling four pharmacies just to refill supplies and medications in the home. I definitely have said goodbye to my monthly massage and pedicure treatment that I exercised pre-baby. I am forever grateful to Jude for giving me the opportunity to not be selfish. I have learned to fight for what I believe in and consciously think of someone else. Pedicures are lovely.  Watching your baby with hypotonia walk for the first time, that is truly magical.  That is what makes life worth living, not pedicures.

4. Everything is fantastic. It is human nature to complain...unless you are Jude. He loves life. He loves the simple things. Even though he has been through great struggles, he has a great perspective. If something hurts, he may cry a little or rub the injured area and then he moves on.  Within seconds, he is standing up amazed by his hands and laughing. He doesn't dwell on what has happened. Though this is on a much smaller scale, it has inspired me. If a two year old can endure what he has faced and is still smiling, so can I.

5.  Miracles happen everyday. Jude is a miracle. Jude has survived events that would not of been successful for others. He has accomplished milestones that doctors and research predicted otherwise. He is my miracle. Experiencing and being apart of a miracle is extraordinary and life changing.  I am blessed and humbled by this experience.

          Today, I would like to say thank you to Jude. Thank you for giving me the opportunity to be your mom.  Thank you for motivating me everyday to become a better person. Thank you for being my teacher. Thank you for this beautiful life. It maybe Mother's Day, but I celebrate you. 

Jude's World

   

    Lack of emotion. Loss of words. Withdraw. It is called Regressive Autism and it crept into my house and right into Jude when I was preoccupied basking in the holiday season. My morning wake up call went from "hi...mama" to Jude banging his gtube stand against my bed because he couldn't find his voice to speak. His mornings were spent obsessively jiggling door handles instead of pretending to read through books.  When his interest shifted from my smile to how fast he could move his fingers through my hair, I knew. I suppose it was the accumulation of all the blatant signs, but there is always that "moment" of clarification.
    Right after the new year, we took him to his neurologist. After multiple visits and tests, we were told what was already known...Jude was Autistic and non-verbal. Autism is well-known, yet highly misunderstood.  It has a very large spectrum so there really is no comparison from one Autistic person to the next.  Jude falls on the "severe" end.  This decision was based off his non-verbal status, withdraw, his lack of a social and emotional connection, and a long list of other Autistic characteristics.  Even though, I had already heard news like this before, the wind was knocked out of me. As always, I had to set my feelings to the side and figure out how to help him. Medications, a communication device, and a shift in the way he receives therapy (thanks to his talented therapist) he has rid himself of his past frustration.
    As time has passed, I have reflected on Jude and all the feelings surrounding his diagnosis. I sat back and observed Jude in his most comfortable surroundings.  Interestingly enough, I don't know many two year olds, as content as Jude. Sure, he is completely immersed in his own world, but he is happy with himself, "gogs' (dogs), and Elmo. It is when he is forced to be removed from his world and plunged into a sea of "normal" that he becomes overwhelmed and quite frankly, annoyed. It is utterly amazing and brings about such joy when you interact with Jude in Jude's world. He lights up because it is a peaceful and happy place. The wave of relaxation that comes over him as he pets a dog. The laughter that pours out as he is bouncing his Elmo doll.  It is simple happiness. As a parent there is a dark side, I have and still do mourn the loss of "normal" things for Jude and I.  I have my moments and I am sure I will have many more, but that is just part of being a parent and loving your child unconditionally.
    As with any new "storm," my little man turns it into a rainbow. He is always a light in my day.  When the "normal" world is stressing me out, I just head into Jude's world and it always puts a smile on my face.