"Finding joy in the journey"
Our sweet baby Miles, he came into this world quickly, with the sweetest disposition. We just knew he was a perfect fit for our family. He has truly made us better in every way possible. Our boys are our greatest blessings and our life is complete, now finally being their parents. Miles arrived on September 4th in the early morning, with a near perfect APGAR score and a natural birth, thriving and quickly released into the world after a couple days hospital stay.
He seemed quiet and fragile, once home. Unlike his brother who, after a month, looked like the incredible hulk, Miles was thin and frail, did not like the cold, loved being cuddled in your arms and would feed frequently and slowly. He seemed exhausted and would gaze intensely at you while sipping his bottle and closing his eyes for rest often. His eyes, piercing blue, and his hair, dark black with the most delicate facial features, he looked almost doll-like. Every single time I held him, I felt the need to protect him, he needed me and I needed him. As a mom, it seems that we are the first to notice things about our children that some others may not notice. Well, I could see his sheer beauty and I knew that he was different.
I worried that I had may have caused his "difference." I ate something wrong or exercised too often, too long or allowed myself to get too overheated. He is going to suffer because of me. I probably didn't take enough supplements or I shouldn't have been working which allowed me to get into a car accident where someone rear ended me. I couldn't seem to fully grasp that this wasn't a problem, but a difference and we would find out how to address it as a family.
Fast forward to his three month check-up and our pediatrician confirmed what I had feared, something was different as he was delayed (gross motor), vision issues, difficulty with tracking and neck strength. So, as a teacher and mother, I wanted to get ahead of this and get him into physical therapy and any specialists that would take us. I started my research and off I went. In the meantime, I took a year leave from my profession as a teacher and spent the next several months in and out of doctor appointments searching for answers and treatments. There is no fight like a mother's fight for her child.
I should also let you know that I suffer from anxiety and I feared having a child with unique needs. Why? I am not sure because I had obstacles to overcome growing up and it gave me strength and empathy for others. I guess I just wanted better for my own children. Just like all mothers, I didn't want my child to "suffer." I wanted my boy's lives to be better than mine, but really who are we if we aren't challenged and learn to persevere. We are the very make-up of our triumphs and failures. These experiences shape us into the unique individuals that we are today. I wanted to protect Miles, but I also want him to experience life. I want him to take a leap of faith and know that we are here to always support him with any outcome. So my idea of "perfection" dramatically changed. One quote that resonated with me from Heath Ledger during this experience was...
This changed my way of thinking. I often a question if my choice of activity or plan is making our lives happier or better. I have learned that true happiness differs for each individual and finding joy is so important in life. The most valuable lesson I have learned during this experience is that you need to go after your goals, take chances, celebrate small victories and love as many and as much as possible. There is no better time than the current time so start LIVING! This, I will say, has lead me to live a much fuller and happier life.
After I researched, consulted with several doctors and reached out to many friends and family. I concluded that he had the symptom of hypotonia, which is often a caused by something else, however I couldn't pin-point a cause. Miles was a natural birth, at 38 weeks and he didn't have any signs of neurological issues, so I started pushing for more tests and therapies. I went to PT twice a week and met with an Early Steps Early Interventionist once a week. After taking in all the information, both my husband and I believed he had Benign Congenital Hypotonia. We prayed on it and put every effort into building his gross motor skills.
We were told at our first Physical Therapy appointment when Miles was three months old that his gross motor abilities were that of a one month old and the PT wrote in his documents that the "mother was visibly upset and cried." They assured us that there would be no way to know if he would be able to walk or talk at some point. I left feeling defeated and angry. That was not an answer I could or would accept. My child would do everything he was capable of and we would make sure of it! My husband, the sweetest man on Earth, said we could find a new PT and we did. It was the best decision of my life. When I walked into my new PT's session I felt comforted, optimistic, cared for and secure in her knowledge and abilities. Her strength motivated me and that day I knew that together we would get Miles where he needed to be. Isabel was honestly an angel sent to us by God. I truly believe that Miles connected immediately with her delicate touch and guidance. He started to make unbelievable strides right away with Isabel and now we both look forward to every visit with her. We also drive 40 minutes to see her because she is life-changing. If you live in the area and need information please PM me. She has changed our lives for the better!!! :)
Photo: PT with Isabel, Neurology appointments and Eye Appointments
After a month of therapy, the test results started to come in. The EEG was normal and the blood tests came back completely normal. So, we went to both the Geneticist and Neurologist to suggest more tests, which my incredible physician agreed were appropriate and got us into the right hands immediately. Dr. Piedrahita is also someone placed into our lives to make our situation positive. She cares for each family as if they were her very own. She worked diligently to get us a Geneticist (Dr. Sanchez) and immediately were given a micro -chromosomal array order (along with a plethora of others but that was the most important) and we were to see those results before moving forward with an MRI of the brain. As parents, it was so difficult to watch our infant go through all these tests and as we navigated our new norm, when COVID hit with a vengeance! Now, we have a compromised infant (we don't know the cause yet) and our world in a global pandemic. Our PT sessions were cut and our doctors appointments were now virtual. Our entire team was taken away in one clean swipe. You can imagine that both Dad and Mom had to pull it together and pray for love and guidance.
Photo: Head tilt due to Occular Torticolis (our next obstacle to conquer-eye surgery)
After having my child poked a prodded we received the results from the doctor, COMPLETELY NORMAL again! We celebrated! We cried, hugged and cheered. We cheered so loud that the entire neighborhood could hear us. (the meeting was virtual at this point). Now, we faced the most difficult decision up to date, do we take our now seven month old infant to the hospital for an MRI of the brain? COVID19 was rampant, we have another son to think about and of course, the anesthesia. We decided to take all precautions and go ahead with the MRI. Watching your son go limp in several seconds was terrifying, but we knew that we had the best doctors and team to help us navigate this journey. We needed to get him all the care he needed to thrive.
Photo: MRI at St. Joe Hospital (kindest staff and cutest kiddo:)
A day later, we received the news...NORMAL again! So, his diagnosis was as we originally surmised, Benign Congenital Hypotonia which reads "provided there are no other underlying problems, this should gradually improve and the baby develops and gets older." We were elated! Again, we celebrated and thanked God for our blessings. Some of the built up anxiety lifted and life went on. So, why explain all that to you, because there is an end in sight. There are answers. You are not alone. You can get help and it is scary, isolating and difficult to navigate but now Miles is thriving and so are we. Support is necessary and you, as a parent, are making the right decisions for YOUR child. I know that your child may not have hypotonia but they will face challenges and you will need some support, guidance and love too. I followed many blogs, "Instagramers" and developed my own little community to help me and I hope that this reaches someone who may need the support.
How has this changed me? This is the best part. It has given me unwavering courage. It has tested my strength and devotion. It has taught me to choose FAITH over Fear. It has made me happier and more connected with others. My marriage with my husband is stronger and more full than ever. As a family, we are ALWAYS hopeful and we find the the joy in the journey.
My favorite picture to date, this boy is always smiling and laughing.
We celebrate each mini-milestone. I can vividly remember the first smile, first laugh, the first time he lifted his head from tummy-time, the first time he rolled over and back, and the first time he tried to crawl. He is so happy and he is always smiling! He adores his brother. The shrill of his laughter makes my heart skip a beat. Miles is perfectly imperfect, just like all of us. I just love him so much. A friend of mine told me, "each child you have doesn't make your have less love to give, it makes you grow another heart!" She is so right, I know that I have a HUGE heart for each one of my boys and I find myself often stopping and thanking God that he gave me a little extra time for you to be reliant on me. Time is so fleeting so hold on to each moment.
All in all, I have learned that being a mother challenges you. It challenges you to be better, love harder, live fuller and continue to grow and learn throughout your journey. Mamas out there, you are tougher than you ever imagined and being a mother is the most special and rewarding gig out there. We need to lift and empower one another! I share this story to connect and reach other mamas out there. We are in this together. Find something positive in each other, life each other up, find your tribe and love them hard!
Photo: #foreverbesties #brothers
One of my dearest friends said the most perfect thing to me. She said" God chose you to be Miles' mother because he saw the fire in you." I will forever and always live by this quote and I will continue to thank God for putting wonderful friends and family in my life that drive and support me on this journey. Today, find the joy in the moment and hug your family a little tighter. And watch out because Miles is going to do BIG things for this world of ours, I can feel it it! Stay tuned to find out more on his journey...next stop is eye surgery and I have no doubt that he will conquer this!
"Strength comes from struggle, when you learn to see your struggles as opportunities to become stronger, better, wiser, then your thinking shifts from "I can't do this" to "I must do this."
-Toni Sorenson
Stay tuned...we have more conquering to do.