Yesterday was a sweet reminder of the importance of connecting with other moms! Although everyone has a unique journey that has a special purpose, similarities in circumstances, beliefs, and experiences can begin a lifelong bond.
After our prenatal diagnosis, while in the hospital to deliver our third beautiful daughter, and even during all of our routine checkups with our pediatrician, we were never given any information (other than worse case scenarios) about Down Syndrome. We were never directed to support groups to gather positive stories that may encourage us with hope. We were never provided with resources that are available to greatly help our children, such as occupational therapy, physical therapy, and speech therapy. We were never even given a brochure or told exactly what Down Syndrome is. Unfortunately, this is the common story I have heard from other moms.
My only resources were Google and Web MD. YIKES!! I found myself having such moments of desperation to know our unborn daughter would be ok.
I slowly began to find mom's like me on IG that truly inspired me and continue to do so. Through Instagram, I was able to see so many beautiful children that had an extra chromosome. I saw families that were living life as usual and doing amazing adventures together! That gave me hope!
One day, when our extra chromie baby was about 6 months old, my husband saw a tv show that was interviewing a lady named Nancy Gianni. She is the founder of GiGi's Playhouse, which is named after her daughter. GIGI's Playhouse is an example of a positive resource! They provide weekly physical therapy for babies and toddlers and have various social classes that include activities and music. Most of all, this organization provides education and support for the entire special needs family!
They have a location in Atlanta, which is only 90 minutes from where we live. We made plans to go that very weekend!
We finally felt there may be a place for us!
When we arrived at GiGi's Playhouse and began to talk to other parents, we were directed to another organization called 'Babies Can't Wait'. They also provide various local therapies for one with special needs. Through 'Babies Can't Wait', I made my first local contact with another special needs mom. (That is the pretty lady in the photo with me!) She has inspired me by making amazing baskets full of gifts, information, and encouraging words! She then takes them to the hospital when notified about a family that has just had a precious little one like ours! We have an important mission field to love, encourage and give hope!
How has the medical community dropped the ball in the matter of delivering positive feedback and hope during a diagnosis of DS? Lives are more than a medical book and statistics. Instead of pointing a finger, I feel it's our duty to share our story to cheer the next one in line! We can also educate the medical community by sharing our story. Paving the way for others and advocating on behalf of our children can bless those that come behind us in countless ways! The question I ask myself and try to live by daily is, "What are some things I can I do, to be the person I needed, to someone else?"
God has used this "journey within my journey" to open my eyes to a future I look forward to with HOPE and standing arm in arm with some wonderful new found friends!
My youngest daughter will face open heart surgery in the next couple of months. If I allow my repressed feelings and emotions out, I admit I just don't want my baby to hurt or be scared as she is in a room full of strangers and can't see me. I want to tell the surgical team that the 'abc song' comforts her. I want to tell them to please think of their own children as they prepare our Savannah Lanier for surgery. I want to tell them to please try to comfort her with love and compassion when she's crying as they place the IV in her arm. What I fear most, is not being with her after strangers take my baby behind closed doors... out of my secure arms and out of my sight. My prayer is not only for Savannah to be overwhelmed with comfort, peace, and minimal discomfort; but, for guidance, knowledge, and sensitivity to overwhelm the surgical team. I pray the "Great Physician" will guide every movement, as the surgical team will literally have my daughter's heart in their hands.
I am only as happy as my saddest child. I am only as well as my sickest child. I know in my spirit, Savannah will be just fine, actually better and stronger for it! Like anything in life, while going through the "fire", we are more aware of God being at work around us. We feel His comfort and sense His presence. My prayer is while we are in the hospital and thereafter, we can be an encouragement and inspire another like moldable clay in "The Potter's" hands.
I think of the verse:
O Lord, you are our Father.
We are the clay, and you are the potter.
We all are formed by your hand. (Isaiah 64:8, NIV)
Sometimes we feel like the undefined lump of clay that the potter drops on the wheel. But the potter knows there is beauty in that lump of clay just waiting to be developed.
Two things need to happen to make the pottery strong and usable. The clay must go through the fire of the kiln to be strengthened and it must be glazed.
Going through "the fire" and trials of this life that do not feel good, can and will make us stronger! It places us on paths we otherwise wouldn't be on, strategically placing us before individuals that may need a smile, a word of encouragement, or to hear how good our Lord is as we journey through life. This upcoming surgery will forever change us, just like the clay after it's molded and fired, it's no longer the same.
My prayers, since our prenatal diagnosis, have been that God would heal Savannah's heart. Her heart will be healed! It will be healed through surgery. My prayers will be answered. Savannah will be stronger and healthier. I will continue to trust my "Potter", my "Great Physician". Savannah Lanier is already strong, but she will be even stronger! She is lovely, precious clay that is not only being molded, but is being used to mold me. All of my children inspire me to be better. They inspire me to leave a legacy they can be proud of. I will always fight for them and protect them with my life. They will always know they never have to go through "the fire" alone and together we will come out stronger than before!
Life is about choices and I chose to love, protect, and be your advocate, Savannah Lanier! There isn't anything I would change about you, my daughter! You are perfectly imperfect and worthy of life and all opportunities!
We are thankful for our DS diagnosis and the lessons we have learned and all the ones ahead of us. We are thankful for the spiritual growth and inner strength we are gaining daily... all because of you! God has already used you, and this is just the beginning! He has so many wonderful blessings for you and to provide through you, showing others what pure love is without discrimination.
Every stage, like any child, has its challenges! I have seen during the 13 years of parenting, the reward is worth any challenge. We are the ones that grow and seem to develop more than our children, gaining spiritual growth, inner strength, and wisdom! Our babies are an inheritance from God and a blessing, worthy of life, no matter what society has conditioned so many to believe.
I had fear and a desperation in my heart to know things would be great after our prenatal diagnosis. I clung to The Lord and had head knowledge that He makes no mistakes, but emotions clouded my heart knowledge of this fact for a while. You just turned 1 last week and you are a beautiful example of God's love and deserve a chance for countless opportunities! My heart's desire is to educate and encourage others as I am being educated, with hope and love! There's still so much I don't know and I am learning as I walk through this journey with you. We will both learn together. We will laugh together and cry together. We will experience the beauty in life with love with compassion for one another.
Down syndrome is a wonderful journey within our journey. Life in general comes with challenges, some more than others, but what if we really tried to see beyond challenges and our differences with compassion and love? What if we realized we are more alike than different? The impact that would make on the world would be unmeasurable! We are only at the beginning of this journey, but God is molding me and revealing so much about acceptance, sensitivity, inclusion, and what true love is.
Emotions are not easy at times when given a prenatal diagnosis. Standing up for life and wanting to scream to the world the worth of your child after trying to be convinced to terminate because of an extra chromosome is something I will never get over. I look at my three precious children and see lives that God has allowed with a plan and purpose... three lives that are already His, He has simply given me the privilege of loving, teaching, encouraging, and taking care of them. One thing I want for you, Savannah, and your two sisters, is for you to have compassion and love for others, whether one has an extra chromosome or not, and to show the world there is "NOTHING DOWN ABOUT IT"!
About a week ago, I read a wise quote that said, “The past is practice”. He proceeded to add the promising truth that “In Christ, you can accept your failure and live in light of the grace that covers it all”.
I responded from a relationship prospective : “Sometimes it is hard when another reminds you of failures and that you do not quite measure up. There are certain personality types, like mine, that want to make sure everyone is happy and comfortable. It is easy to become an enabler. When we realize we have always been enough and that God made us in His image, loving us in spite of our flaws, molding us through mistakes we make, we will worry less what others say to us or how they judge us. Getting older isn’t that bad! I say that light heartedly because we do gain discernment as we age and realize no matter what we do or do not do, it can not make someone genuinely love you or show respect to you. How another treats you or loves you is their decision and between them and God. We are only responsible for ourselves, our attitudes, and our actions. Be the best YOU and live accountable to God, living out the purpose He called you to do. There is no need to persuade or argue, friends. That is The Holy Spirit’s job!
Some of these words can also reflect my burdened heart, as the political events have unfolded over the last several weeks. As I rear my three daughters, I am embarrassed to see how so many ladies have behaved. I am ashamed of how the word “racist” has been thrown around. How can we speak of peace and love and behave with such hate and destruction? I wonder if many have forgotten what patriotism is or that protecting the ones we love (whether it is our immediate family or fellow Americans) doesn’t make us intolerant of others. We are just intolerant of those that try to do us harm.
We all say things and do things that we wish we hadn’t. There will be a time that each of us will fail. We all have differences, from skin color, special needs, religious beliefs, and backgrounds. How we respond to failure and differences is reflective of our hearts. Are we maintaining respect and dignity? Have we forgotten that although God extends grace, there are also consequences to our actions.
As my family and I continue our journey with Down Syndrome, I’m sure we will face discrimination and intolerance. I am not afraid because I know this is a calling from God. We chose life! We chose love! I can not make someone accept our differences or be kind to my daughters, but would not ever tolerate cruelty of any form. We can be an example to others by maintaining dignity and educate as we are being educated, then let God convict another’s heart. We can never argue or riot someone to seeing things our way, but we can have laws and boundaries to protect the ones we love. Even God can not change someone who is not willing to change!
Today is our future past. Even though it is practice, remember there are consequences to every decision and attitude. My prayer, although our issues may differ, is that we can be like “the woman at the well”, having an encounter with Jesus that forever changes us. By sharing our testimony, we can make a positive difference one life at a time and live in the light of grace.
2017 will be the year for my youngest daughter's heart surgery. Honestly, I won't allow myself to think about it much because my mind goes into too much detail. I'm the kind of person that deals with the situation when it's time, then I tend to repress those emotions because they're too overwhelming. Fear is not reflective of my faith and can taunt me at times. My fear is "I don't want my children to suffer in any way". I would gladly take it for them.
As strong and positive as I try to be, the reality of Down Syndrome hits me in moments. I wonder how my daughter’s life will be in reality, not just in the positive fantasy I try to maintain. Every time she has an appointment with her cardiologist, I hold my breath and my stomach is in knots wondering if the MD will say it’s time for her inevitable heart surgery.
What I have to remind myself is that after the heart surgery to repair the AV defect she has, it will be a new beginning for her! Her heart and lungs will not have to work as hard. As much as I do not want any of my children to suffer or be in any pain, I have to face the reality of a necessary event for a brighter, stronger future for my daughter!
In any situation in life, we have to go through the fire to become stronger!
For one who is a parent of a special needs child or typical child, we see them fall as they are trying to walk. We see them cry when they are afraid or frustrated, but we give them comfort while in our arms. We encourage them to keep going and begin again as many times as it takes to accomplish the goal! Not only are we seeing our sweet children grow and continue to make milestones, but we are growing and learning as much as they are! I know as a mama of a 12 year old, 10 year old, and 9 month old, I certainly have and continue to gain wisdom daily.
Whether we are facing a new chapter of our lives, seeing a new stage our child is entering, or even facing a new beginning after our child's heart surgery, we can learn from the fire and be stronger for it! We should never forget, it's never too late to begin again until we accomplish our goals!
As 2016 quickly comes to an end, many of us reflect back on the year's events and our own lives, including our failures and accomplishments .
I read something the other day that discussed having faith in God and trusting in His perfect plan, but when faced with a trial, we can be taunted with fear and worry, which completely denies the power of Christ. This poses the question, what are ways we fight fear and worry as each year passes?
As a mother, what "what if scenario" doesn't run through our head? What burden do we not take on as our own? One of my favorite quotes is, "We are as happy as our saddest child" ~ author Unknown. My prayer is for each of my children to have an intimate walk with God, for them to live a long, happy, healthy life ~ free from mental or physical abuse. My fear is "I don't want them to suffer in any way". I would gladly take it for them. I realize God knew me before I was even born. He created me and loved me so much He sent His Son to teach, give the ULTIMATE love, & He took my punishment so I can have a relationship with The Heavenly Father. God, as our Heavenly Parent, doesn't want us to suffer either!
As I reflect back on my own life, I see God's hand on me. I was married twenty years to the only man I ever knew, had two beautiful daughters, and thought divorce would never happen to us. We were the rare exception! Wrong. It did happen. I am now remarried to a wonderful man and in 2016 I was blessed with another beautiful daughter, who happens to have an extra chromosome.
Even though God gives us free will, He has a plan. We may go through suffering and deep heart aches that bring us to our knees and physically makes us sick, but God extends mercy and grace. He restores and redeems! He never leaves us and sees every tear that falls from our face. We wouldn't have our precious Savannah Lanier if I hadn't gone through the suffering of my 20 year marriage ending. In this life, we will suffer and our children will suffer, but we always have hope! Through Christ, there will peace, restoration, and healing. As much as we love our children and don't want them to hurt or go through pain we have experienced, think how much more God loves us and tells us He has a plan! I am a mess up... we all are. No matter what 2017 brings our way, trust in Christ without fear. We can surly pray for one another and share a transparent heart with others to encourage and uplift. God reminds us 365 times in His word to "FEAR NOT!" That is a reminder to live every day fearlessly!
My stepson recently posted a photo of himself and our youngest daughter on social media with the caption, “Her extra chromosome makes her extra cute!” My first reaction was, “That is too sweet!” Then, I had a protective spirit come over me. Although I know God makes no mistakes and I see all three of my daughters as beautiful and perfectly made, others may be cruel and judgmental. Others may feel sympathetically towards us because we are living with the beauty of Down Syndrome. When I see a typical child sitting up on her own that is the same age as my youngest daughter, I wonder when our little girl will sit up by herself or say her first word. Most women by nature are relational and try to see how others are doing. I truly believe that is reflective of a compassionate heart. Compassion is what makes us great mothers, wives, and friends! Where we go wrong is after asking how others are, we follow up by asking ourselves, “How is my child doing compared to her child?” or “How am I doing compared to her?” Around the holidays, it is especially easy to feel inferior to “Holiday Queens” that seem to make their homes and lives picture perfect! I have to consistently remind my two older daughters that “We are not in competition with one another because we are on the same team!” Our story and strengths belong to us. Each life is unique and has a purpose. Whether we are lacking holiday decorating skills, whether we have a heart defect, or if we have an extra chromosome, we are all beautiful in our own way and let us never mistake sympathy for compassion. As we explore our unique strengths and live them out with others, let’s remember as moms, we are all on the same team and imperfectly perfect!
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.