“Believe” is what is written in sign language on Savannah’s shirt.
This word means so much to me, as one year ago TODAY, we were at Egleston Children’s Healthcare of Atlanta preparing to hand over our baby to strangers, knowing they would literally hold Savannah’s heart in their hands. Open heart surgery, you scared me and you intimated me, but you also gave me hope that all would be so much better for my precious baby. I “believe” in The One who could heal Savannah’s heart without surgery, but chose to do so through the hands of others that He blessed with the wisdom to do so. I “believe” that God chose to allow me to cross paths with so many beautiful, loving people that I wouldn’t otherwise have had the pleasure to meet without surgery.
I remember waking up throughout the night before her surgery at the Ronald McDonald House as Savannah slept peacefully in the bed next to us, oblivious to what the following days would be like for her.
I remember kneeling beside her bed, laying my trembling hand on her sleeping body and begging God for a long, healthy, happy life for Savannah, full of strength, vitality, and protection. I prayed for the surgical team and all who would take care of her.
I didn’t cry until I handed our sedated Savannah over to a stranger and walked in a different direction. It felt so contradicting to want to hold and protect her, yet hand her over and trust a group of strangers to open her chest and have the fate of her life in their hands. Then, the word “believe” comes into play again. I believe and trust in my Heavenly Father and that He is good. He is a good, good Father and still provides miracles, even in the midst of what is scary and intimidating.
Today, the doctors can not even hear a heart murmur! She is thriving and growing so much every single day! I’m thankful, so thankful for all Savannah is and what she will be with a strong will and a strong heart!
If you’re a Momma or Daddy that is about to begin this journey, I’m open to answer any questions and surround you with love and prayer!
Happy one year anniversary to my HE❤️RT WARRIOR!
“How Fear Of What Others Say Can Hinder Our Potential”
The heat of the sun, the sounds of water splashing on the concrete, giggles from the kids running through the water fountains, and the sound of a lifeguard blowing their whistle, are all apart of our Summer life. Making new friends as we are playing in a public area is also a great part of Summer! However, meeting other moms at a splash park or public area can bring about fears that are humbling to admit.
One thing that makes me tense, as a special needs mom, is the question, “How old is your daughter?” You see, I know that my child is not walking or talking as well as her typical (I really don’t care for that term) peers that are the same age. Many two year olds are speaking well enough to understand and are not only walking, but running. Savannah is two and just learning to walk well. I often feel the need to explain why Savannah is behind and then I find myself getting on an advocacy soap box. Why? I’d like to say it’s 100% because I’m seizing an opportunity to educate. Truthfully, it’s also because I fear judgment or pity. I don’t want pity for Savannah or our family. I want so desperately to let others know that Savannah will accomplish anything and for others to see her for her, not her challenges. For the most part, I believe most people do see how beautiful, smart, and loving Savannah is before anything else. The victories over the challenges she has will only shed a brighter light on her and The God we serve. If I lived in fear, I would rob so many of seeing the beauty of Down Syndrome and that it is not a scary thing! I wouldn’t have the opportunity to educate and encourage others in a unique way, by opening up our life publicly through photos, testimonies, and blog posts.
Fear of an opinion or criticism is not only for those associated with special needs. Fear of what others say can hinder our own potential and what we are called to do.
I have been in many circumstances that have rendered a “damned if I do, damned if I don’t” response. I’m sharing this because I want to encourage you, friend, to rise to your potential and be the best YOU, using the gifts God has given you! No matter what we do, there will be those that have something negative to say. Unfortunately, there will be those that reject you, ignore you, and gossip about you no matter how kind, loving, and hard working you are.
There was a time in my life that rejection almost crippled me. I loved, served, and “obeyed” one man in marriage while enduring controlling ways, verbal abuse, and at times physical abuse. I was always told it was somehow my fault. He filed for divorce after 23 years. God used my two daughters at the time as life preservers and they were the only reason I got out of bed every day. I have been the one to care for my daughters and have sole custody. To this day, not one member from our previous church and not one past family member has asked if we are ok or if we have a need. There were some that refused to even speak to me when I’d see them. Rejection and being ignored are two hard pills to swallow. However, I have learned so much and for that, I’m truly thankful.
I have had family unfollow me because I was “too happy”, “too religious” (which in fact I don’t even like “religion”. I simply love Jesus and am a Jesus follower).
I have had family unfollow me because they didn’t receive an invitation to a get together and on the opposite spectrum, I’ve had family members curse me out because I told them they were missed after not coming to an event they were invited to.
I have been harshly reprimanded for using a NIV version of the Bible instead of KJV in an encouragement note. (That one makes me laugh thinking back on it).
How can we keep others from saying and projecting negativity our way? We can’t. How can we keep from living in fear of what others say and think? We don’t say anything. We never step out on faith and never act on what we are called to do. We don’t do anything. We never open up and share what God has done in us and through us.
We give up living a beautiful life, having beautiful relationships, and serving others with love.
Or, we can surround ourselves with folks that are real and love us for us. We surround ourselves with the ones that speak in wisdom and love.
It is ok to put folks up in the balcony and love them from a distance. Not everyone deserves that front row seat in your life. It’s also ok to encourage yourself when no one else is around to do it! Don’t let someone else control who you are and arrest your potential. We have to decide to live our best life and be talked about, or not to live at all and be talked about!
Fear of what others say most definitely can cripple us and prevent mental, physical, and spiritual growth. That is not what God wants for us! He knows we will battle fear. That’s why He reminds us 365 times in His word to “FEAR NOT”!
I heard a quote the other day from Jay Shetty that sums up this post perfectly. “Don’t let compliments get to your head and don’t let criticisms get to your heart.”
There’s so much I want for my children. I want what any good mom wants for their kids, for them to be healthy, happy, have an intimate relationship with Christ, and to be a productive citizen.
However, I want a bit more for them. I want them to enjoy the Summer and have forever special, feel good memories that the smell of freshly cut grass and the sound of an ice cream truck brings back to them one day.
Laying in a lawn chair as I watch Savannah play in a dollar store pool with beach toys gives me a sense of peace. Savannah often reminds me to put my phone down as I may be innocently going through emails, checking my bank balance, or writing a new blog post. She pulls my phone away from me and crawls into my lap. As my soon to be 14 year old and 12 year old have their own phones, I don’t want to be an example of having my face in a phone all the time. Yes, this is a different generation; however, respectful and positive principles must be implemented to gain respectable and positive results while allowing the most incredible memories to be made!
I want Summertime to reflect a season of chilled non-routine days. I want my children to have memories of the smell of the grill cooking our dinner, popsicles staining their tongue and lips, playing in a sprinkler, going to the pool/ water park, watching a movie in a wet bathing suit, being chilled as they walk inside a cool house after playing in a pool, staying up late and sleeping in. I want them to remember fun family memories of us all together at the smell of sunscreen. I want them to remember the excitement of going to the grocery store to pick out snacks and food for a vacation. (Cheez-its, Vienna sausage, and Dr. Pepper are my childhood vacation snacks😂). I want them to remember us celebrating the birth of our country with fireworks, grilled hamburgers and hot dogs. I want them to have precious memories of driving to Orlando and spending time with Gam-mah, Papi, and cousins.
Most importantly, I want my kids to remember me being there. As a former single mom, there have been events I had to miss because of work. I actually had one in my chain of command tell me “there are things you just have to miss”. With that being said, I realize how hard it is to be completely responsible for children and others without help. I have an amazing husband that shares my desires and is so incredibly supportive of me and the time I have with our children. I couldn’t be more thankful and appreciative.
So, today and the next day, and the day after that, I will be aware of the time I am on my phone. I will let my kids be kids. I will surround them with positive energy and flood them with love, intentionally striving for an environment full of all the Summertime smells and activities. I will be there. Why? Because I love Summertime and the memories I have, but I love my kids even more and want their memories to be the best!
There is a quote hanging in Alexis’ bathroom that says it all, “You are the author of your own life story. So make it a good one!”
Happy Summertime, friends!
My Rear View Mirror
After Savannah’s checkup with her cardiologist today, I found myself reflecting on her open heart surgery last summer and my heart is full of gratefulness and thankfulness that it is in “my rear view mirror”.
There are some that do not want to look in the past. For me, certain things are hard to reflect on, yet the hardest times can teach us the most.
To think 2 1/2 years ago, I was told that Savannah had only 3 out of the four chambers of her heart, that she had Down Syndrome and that I had to make decisions and make them fast. (Those “decisions” meaning terminate Savannah). I was given every possible negative scenario and told every situation that could go wrong from any possible angle. I was even given a negative outlook on this sweet, beautiful little girl’s future!
Who can predict anyone’s future? Any child comes with obstacles and difficulties, correct? Do you love your child any less because they are failing math, need braces to correct their teeth, or aren’t good at football? Of course not! All of us have our obstacles and difficulties, some more than others. Honestly, the obstacles I see in any of my children makes me cheer for them even louder, do whatever I can to help them succeed and be the best they can be, while encouraging them with so much love....because they’re worth it!
God is good no matter the circumstance, no matter how muddy the water is you’re standing in, and no matter what statistics or “specialists” tell us!
I personally know a couple of Mommas and one Daddy that contemplated terminating the pregnancy due to the bombardment of negativity and scare tactics that they endured after their baby’s prenatal diagnosis.
There are countless pregnancies that have been terminated with this scenario. I do not judge anyone for a decision that has been made or contemplated. Judging another isn’t my job and thankfully never my position.
However, I feel my job (and heart’s desire) is to encourage another and educate anyone that will listen that medical specialists are human and makes mistakes.
A “specialist” misdiagnosed Savannah’s heart diagnosis. Just an hour after I was pressured to terminate my pregnancy (by the one that gave the misdiagnosis), I was told by a prenatal cardiologist that Savannah actually did have all four chambers of her heart and she may need a surgery to repair it in the future.
Sharing our lives publicly as a living testimony is a way to show others that living with the beauty of Down Syndrome isn’t scary. Listening to negative, inaccurate, and outdated statistics by one that doesn’t even know someone with “designer genes” or any type of special needs, however, is scary.
Down Syndrome doesn’t paralyze one’s life, it does the exact opposite. Down Syndrome breathes life into one’s existence. It connects souls from across the globe. Down Syndrome unites different races, genders, and religions. I’m so proud God placed me on this journey. I’m so glad Fear was defeated. (Until it raises its ugly head and defeated again!) I’m so glad the doctors can not even hear a murmur in Savannah’s heart and that open heart surgery is in the “rear view mirror”.
In the meantime, I will keep looking ahead as I drive forward, only looking back to remember the grace given and wisdom learned while seeing the beauty of my future in “my rear view mirror”.
“Hide This Cracked, Flawed Vessel”
I write about life and family. My heart's desire is to educate as I am being educated, while inspiring and encouraging others through the beauty of Down Syndrome.