Yesterday during a meeting with ‘Babies Can’t Wait’, the subject of inclusion and school for Savannah Lanier came up. I was overcome with fear and “what if” scenarios! Then, today after seeing a sweet post from @nothingdownabout_victoria on Instagram, I had to respond and actually “preach” to myself! I’m sure this topic is something all of us mommas have at some point!
I already have “fears” of future school days and cruelty towards Savannah Lanier. It can almost be paralyzing!! We are in constant battle between flesh and spirit! We have fears because we are human! Then, The Holy Spirit reminds us to “fear not”. God doesn’t put that statement in His word 365 times for no reason!! He is almost screaming to us to fear not! However.... we as Momma humans, protective and Momma hen like, have to painfully let go as different chapters end and stages evolve. It is meant for us to let go. We are meant to teach, love, and encourage our babies to grow and leave the nest. So, why does it hurt us to do that at times? The answer is simply... fear. We then see God do sweet things through sweet people. We see God reveal Himself in situations and we see our babies defy odds. Then slowly but surely the fear of that particular area, disappears. We are stubborn creatures, after seeing God do the impossible, we still doubt. The beautiful part of this, is God continues to show His love, conquers our battles, and reveals that He is bigger than any fear!
There is apart of me that wants to shelter Savannah Lanier and just surround her with others that will accept her and that are like her. Then, I’m slapped with conviction! Separation just promotes discrimination! If we don’t see others that are different than us, if we don’t get to know ....truly know... others that are different than us, then we never learn from those differences. We only see superficially, not through the eyes of Christ. We would never gain compassion and we would never know how to love unselfishly. “Lord continue to guide this journey and teach me to love through Your eyes. As each chapter ends and a new one begins, replace any fear with faith and peace that rests in only You!”
My sweet little lady~ Mommas can get caught up in the mundane obligations of life. You and your two older sisters make me realize laundry will always be there, dishes will forever need to be washed. My need for things to be picture perfect has been replaced with a better perspective.... Life isn’t perfect, but we can choose to see how imperfectly perfect it actually is and be happy in it! We can see what really matters, which is an investment in each other and in lives, not in a perfect looking life!
I look at your sweet smile and curiosities and stand still in the moment. I laugh when I see you pull things out of baskets, whether it’s a little trash basket or laundry basket.... and then throw them! You are so intrigued by the newness of life’s experiences. I see wonderment in your eyes and experience laughter with you over the silliest noise or element of surprise. You make me feel an innocent and easy love again. I say “easy” because it is truly easy to love you and your sisters. You are not only part of my flesh, but the spirit that resides in me. You help give me purpose and love that is like no other. I love you “more than words” and no matter what you do, that will never change. .
Oh sweet friend, first off CONGRATULATIONS!
Our beautiful Savannah Lanier is now 18 months old and she happens to have an extra chromosome! She was also born with Atrial Septal Defect (ASD), which is a “hole" in the wall that separates the top two chambers of the heart. This defect allows oxygen-rich blood to leak into the oxygen-poor blood chambers in the heart. ASD is a defect in the septumbetween the heart's two upper chambers (atria). Savannah had open heart surgery just 3 months ago to repair this defect and she is thriving! I went public with my Instagram account shortly after our third daughter, Savannah, was born because I want to show “there is nothing down about it” and to shed light as our precious family walks this journey. I am still learning myself, and will continue to do so with each new chapter. The emotions you may be struggling with is NORMAL! You are human. You are being blessed with a direction meant for YOU!! GOD MAKES NO MISTAKES! Please remember that!
It was at my 20 week ultrasound that we first discovered a heart issue with Savannah. My biggest concern at the time was that they would accidentally tell me the sex, because we wanted it to be a surprise at birth!
My 11 year old and 9 year old , at the time, was present during the ultrasound.
The technician found an issue with Savannah’s heart and then said “the child may have DS”. She wasn’t a doctor, nor was there a doctor present. The way she said it was anything but professional.
Then, I did have amnio to confirm.
I understand “what if scenarios” will haunt you! The unknowns can consume you.
There was a period of time where I couldn’t even read anything about DS or look at photos of children with DS. Out of ignorance and a desperate heart, I prayed that God would “heal” Savannah.
I believe the negative scenarios given by “medical professionals” , simply being ignorant (not stupid) about Down Syndrome, and not having inclusion in many advertisements can subconsciously make one believe a DS diagnosis is like a death sentence. Rhetorically speaking, how wrong is that?!
After several doctor appointments, I was convinced I was going to have quasi Moto from Hunchback of Notre Dame.
Shame on the medical community for doing that to us and countless moms!
Don’t feel guilty for any and every emotion you’re feeling! One day, I was so desperate to know what Savannah would look like, that I used this silly kids app “baby maker” , where you put a picture of you and the Daddy to see what your app “baby” would look like.
It was a low point to say the least.
God has opened my eyes to a way of seeing and thinking that is more like Christ. Our children are perfectly imperfect, just as we ALL are!
I prayed and wanted Savannah to be beautiful. (As conceded as that sounds!) I believe all moms have this fantasy of motherhood and others oohing and awwwwing over their newborn! That is normal, too!
I didn’t know anything about DS or know anyone associated with DS. All I had was web MD and google.
Don’t listen to statistics!!!!!!
Your precious child is and will be ANYTHING AND EVERYTHING he/ she wants to be!! They will just achieve it in their timing, with your love and support!
You will have concerns and worries... but, guess what? You will with any child!
I’m a mom of three girls and I treat Savannah no differently than I have treated my older girls!!
There will also be amazing physical therapists and others that help in accomplishing goals, if needed.
God will put in your path the most amazing, loving people because of this precious child. You will look back on this blessing and wouldn’t want it any other way!!!!
Remember, God makes no mistakes!!! Every decision, every choice, every occurrence or situation is for a PURPOSE, guiding you and molding you into the amazing lady or gentleman you are, only getting wiser and stronger!
My advise would be not to do amnio. If blood tests show a positive result, just enjoy your pregnancy!
Please don’t think of this diagnosis with gloom!
This beautiful child will smile and laugh. This beautiful child look at you and call you “Momma” or “Daddy”. This beautiful child will cry and be comforted in your arms. This beautiful child has a purpose!
DS is what our babies have NOT WHO THEY ARE!!!
There are Olympians and Emmy award winners that happen to have an extra chromosome. The sky is the limit on our children, sweet friend!
Surround yourself with POSITIVE influences and stories of everyday, but amazing parents that are in this journey with you!
Welcome to the “TEAM”!
Let me know if you have any questions or just want to talk!! I’m here!!!
As my two daughters and I walked happily to the ultrasound room, we did not have a clue how our lives were about to change forever. At the time, my biggest concern was that the technician would divulge the sex of our little one, as we wanted it to be a surprise at birth!
The technician was a woman of few words, and anything but cheerful. I introduced myself and my two daughters and explained this was their first time seeing a sonogram. They were very excited to see a glimpse of their little brother or sister! We still received very few words from the technician until she frantically said, “I need to go see if a doctor is still here. I see something that isn’t right!” She then walked out of the room, leaving my jelly-covered belly exposed.
My daughters immediately asked if everything was alright. Although my heart was pounding, I reassured them that it was. When the technician came back in, she told me, without a doctor present, that she only saw three out of the four chambers of my baby’s heart and that he/she may have Down syndrome. I was in complete shock and thought there must be some mistake. I was in protective mode for my two daughters standing beside me while trying to process the words I just heard. How could a person begin to make an unauthorized diagnosis in such a cold and heartless manner? This was supposed to be a happy memory that my daughters and I were to share together for the rest of our lives.
I reassured them, but inside I felt confused. I didn’t know exactly what Down syndrome was, but how the news was delivered didn’t make me feel hopeful! All I knew was that I wanted my unborn baby to be healthy, and I wanted to continue to enjoy my pregnancy like I did with my other two children. My heart was incredibly heavy from so many unknowns.
A few weeks later, a specialist told me the possible prognosis. I may miscarry (which I have no history of); if our unborn child lives, the baby would go to the NICU; or our baby would have to be flown to Atlanta for emergency heart surgery. The recommendation based on one ultrasound alone was to terminate the life of our child. Just four hours later and after another test, I was told our baby did indeed have all four chambers of the heart, but a defect was present. I was also told countless times that our baby’s femur bones measured smaller than average. I became very defensive and agitated after repeated recommendations to abort our baby. Was this life not worth living because of Down syndrome? Was this life not worth a chance because of a heart defect or because her femur bones measured smaller than average?
In a protective, defensive mode, I told the specialists not to mention abortion again and to not give me any more negative “what if” scenarios. I only wanted to know the facts, yearned for any positive sides of Down syndrome, and needed to be reassured of the love and beauty this child would bring to our family and others. I believe God makes no mistakes, but I needed to be reminded of that.
I needed to know our unborn child would be the beautiful baby I had imagined, that she could do anything she put her mind to! I desperately needed to find families and stories of beautiful babies that happen to have an extra chromosome like my unborn daughter. I needed to know that our family would still be able to live life to the fullest. I continue to have concerns and emotions that overwhelm me at times. Will she struggle in school? Will she fall in love and dance at her wedding?
In our appearance-focused society, it can be hard to accept what makes us different and embrace the differences of others. I am seeing more organizations supporting those with disabilities with love, compassion, and inclusion. This gives me hope! My desire is to educate as I am being educated, and encourage those who are feeling the desperation I experienced.
A Bigger Purpose
Our journey and place in this life is for such a bigger, deeper reason than we may realize!! I have a husband that has a giving heart and a heart for others, however, his personality type is different than mine. The Lord is using these differences to teach me and mold me in certain areas. Savannah Lanier is another gift that has touched our lives and will touch our lives in ways we have not seen nor experienced yet... but I KNOW IN MY SOUL, THOSE EXPERIENCES ARE DRIPPING WITH OIL, THEY'RE SO ANOINTED!
Ava said tonight, "I can't imagine our lives without Savannah!" ~and we can't!
God is using JR and my babies in this new chapter of life, to gain revelation and wisdom. God is molding me in deeper ways I couldn't experience if I were in a different situation.
Some situations can be easily influenced by "professionals" that tell us our kids are in a low percentile or show us a graph that leaves us feeling doubtful and hopeless from all the negatives and can nots! I want to remind that "momma and daddy out there" that may be thinking the worst case scenario about your future..... God makes NO mistakes! Our futures are better because of our children, no matter how many chromosomes they have! I see daily miracles and statistics that are being proved wrong! God is bigger than any chart or statistic! The Lord will use our babies to show the purest love, leaving us in awe of how good God truly is!
Today has been a day of great burden and heaviness in my heart. I've seen posts concerning racism and hatred and I have seen the current report concerning a country where Down Syndrom is disappearing.
"Since prenatal screening tests were introduced in Iceland in the early 2000s, the vast majority of women -- close to 100 percent -- who received a positive test for Down syndrome terminated their pregnancy."CBSN
How can so many get infuriated over the horror and injustice of racism and yet be ok with exterminating a population because they are different than what society deems as acceptable? Does this remind anyone of what Hitler tried to do? How is this even ok with anyone?!?
Imagine how one with Down Syndrome is feeling as they hear these reports. How do you think they feel knowing their worth is even up for debate?!
All men and women, young and old, are created equal...all in the image of God!
God does not make mistakes....EVER.
I reached out to a friend this morning because we share so much in common, even though we have never met. You see, we share such similar stories of being pressured to abort our precious children because of a prenatal diagnosis. We both share a passion to educate all that will hear the truth and reality of DS and the beauty that consumes us because of it. We want the world to know OUR CHILDREN ARE WORTHY OF LIFE!
It is part of our mission and journey we have been given, to educate as we are educated and share love and compassion. At the same time not judging one who has made the choice to abort after a prenatal diagnosis. It is not for us to judge, but to love as we have been loved. To teach as we have been taught with compassion! God can restore choices made, redeem, and use it for His glory. The things we walk through in life isn't in vain! It is to minister and relate to another in ways someone else can not.
I can not be silent and will speak out against both racism and this modern day genocide! I firmly believe in the power of one! More importantly, I believe in the power of The One, my Heavenly Father, and what He can do through His people! I will stand with those oppressed and mistreated. PLEASE SEE THE PERSON, not a color, not a religious belief, not a disability! It starts with us individually, choosing daily what we support with our silence. Please join me and speak up for these precious children that are not given a chance in society, much less an opportunity to choose what kind of society they want to live in!
I have to say this is a very different and emotionally exposed blog entry. I'm writing this in hopes to help someone that has a hard time "letting go".
I have read and heard about others going through stressful and emotional times and how they have not been able to stop crying. I have thought, "Is there something wrong with me because I am not doing the same?"
There have been two times I have really sobbed in my adult life. I cried so hard, in fact, that I was dry heaving and pacing from room to room. During a 23 year relationship with my previous marriage, there were many times I had to condition myself to repress emotional pain. I learned to cry without making a sound as to not upset my two daughters. Sometimes I didn't cry at all, I was just numb with repressed emotions.
Fast forward to a couple of weeks ago, surrounding the time of my youngest daughter's heart surgery, I teared up several times, but just couldn't let myself go emotionally. I never let my emotions go and cried. I found myself asking my husband if he was ok and being affectionate towards him in a comforting way. I was trying to be strong and was actually giving what I wanted. However, everyone demonstrates love and support in various ways in their own "love language". I did have the presence and support of my husband and family and I'm so thankful for that. I absolutely do not take that for granted!
I had a few people tell me it was ok to cry and "stop trying to be strong". I honestly thought to myself, "If I could cry, I would!" I also thought maybe this was God giving me a peace and keeping me strong for my family.
But of what consequence is all of this? I’m writing this post because I’m on a quest to make crying something normal and acceptable in my life.
Whether because of parental, cultural or societal influence, crying has become something swept deftly “underneath the mat”. Crying, to many of us is uncomfortable, awkward and even embarrassing. It signifies physical weakness in men, and emotional fragility in women.
Is it possible allowing yourself to cry, “break down” and sob is so difficult because it requires you to really “let go”? Am I so tight from life baggage the prospect of being fully human, letting myself be free enough to grieve, mourn, be entirely vulnerable is terrifying at a subconscious level?
Is the reason I haven't released current emotions because I was trying to be strong for my two older daughters? Is it because I was afraid of being too exposed and vulnerable? Was I subconsciously afraid of appearing weak? Or was there no need to let emotions go because I knew God was ultimately in control of Savannah's open heart surgery and this was in fact, God giving me "peace that passes all understanding"?
For me the answer is "yes" to all of the above. I have never taken drugs of any kind, including those to suppress emotions. I want to cry, but I have repressed so much over the years, it is hard for me to do so. I believe I simply feel too exposed and vulnerable if I really "let go". Crying is a God given emotion and acts like a pressure release valve. Crying has also been clinically proven to release toxins! As a Christian, I have verbally released burdens and pain at the foot of the cross. Reconditioning myself to know my worth and being ok to "let go" is a process. It is a process worth walking through, not only for myself, but for those precious daughters I wouldn't let see me cry before.
Society has taught us that " real men" and "big girls" don't cry. Life and relationships are hard enough, but to tell both men and women to shutdown, that crying is for sissies, or to be vulnerable is unacceptable does not make for a happy life. I believe allowing myself to be more vulnerable around my loved ones takes a great deal of strength and exhibits tremendous trust. With time, I pray to gain more of both and teach my children that "real men" and "big girls" that are strong and trusting, actually do cry.
Lord, this doesn't feel good. My stomach is in knots. I'm worried and scared. I don't want my baby to hurt. I don't want my baby to be afraid. I look at my precious little Savannah as I change her diaper, as I bath her, and as I kiss her tummy to make her laugh. I cannot help but think that her newborn skin, flawless and new, will be forever changed after July 12, 2017. There will be a scar, but it will also be a reminder of God's healing and renewal!
As Savannah quickly approaches her open heart surgery I have many emotions and feelings that I keep inside.
I'm staying very busy to occupy my mind. I also tend to repress emotions that are overwhelming, as to not deal with them.
When I've come across photos of a little one after surgery, I've gasped and tears have fallen.
I think about her chest being cut open and someone literally having her heart in their hands. I think about her being prodded and poked. I think of countless wires and tubes coming from her body. Then, I think of the healing that will take place and the physical strength she will gain.
I'm reminded that God promises to never leave us. He created Savannah and made her in His image. He was very aware of her heart defect before she was even conceived. He also knew how He would chose to heal her. He is able to divinely heal her because He is God and 'The Great Physician' ! However, God has chosen to use a surgical team to heal her. I think about the countless people we will be in contact with because of the way God has chosen to heal Savannah! There will be so many that we can be a light and testimony to!! That is where my faith comes in. Trusting in God and His omnipotence is what will strengthen our faith and draw us closer to Him! Is it easy? Absolutely not, but most moments of hurt and trials are where the most wisdom and growth occur! We will feel the presence of God and have a peace that only comes from Him. I know we will see things that will leave us knowing it was ONLY God that did it.
I want Savannah healthy and to feel good and full of energy! That's what I focus on, too... her well being. Like I have said before, I don't want her to be afraid or hurt, but I truly believe God wants that very same thing for Savannah and actually, He wants that for all of us!
I know my Heavenly Father loves Savannah far more than I and wants to bless her! He is in complete control and I'm not! Walking in faith is not for the weak! It's so much harder to do than say!
I trust Him, though. I truly do. However, I'm Human and a momma human at that! I am protective and defensive, I need prayers and covet them! Several moms have paved the way for me and so many others! Your outreach means more to me than I can express! I, too, want to be a light and encouragement to others like many have been for me! I will share our journey as The Lord prompts me to share it. I don't want to just "go through the motions" of life. I want to be a conduit for love to others, and by sharing our story, help the next one in line.
As a part of Savannah Lanier's Baby Dedication, we were asked to answer the question, "Who would you like to see your child become in 18 years from now?"
The truth is, life has conditioned me not to trust in my own plans and hopes. It is always a smart idea to have a "game plan" and goals, but with a complete surrendering to what God sees as best. This is not only true for me, but for each of my children and each of you.
I don't know the future, but my life and the lives of my children are in the hands who holds the future. I have hope, not in my own dreams for my children, but in The One who gave my children to me.
God gave me the privilege of being Alexis, Ava, and Savannah Lanier's momma and gave me two sons through marriage. What I want for not only Savannah Lanier, but for all my children, is for them to know their worth and to never accept being treated less than the priceless gem they are!
I love my children more than words and I'm committed to giving my all to each of them. I will not enable them, but teach them to value hard work, to lose graciously, to win with humility, to value all lives, to be kind, love with compassion, and to treat others the way they want to be treated. I will not be afraid to say "no", but look for reasons to say "yes". I will wrap my arms around you daily, but most importantly cover you in prayer.
Specifically for Savannah Lanier, I want her to know she is worthy of life! God made all of us different. Our differences are what make us unique and special. I want Savannah Lanier to know that although she may have many challenges, she is limitless as to what she can do and accomplish with hard work and determination.
Savannah Lanier is a miracle, as are all of us. We will continue to see miracles in the first words spoken and in those first steps taken! We will continue to see miracles as we witness our children change lives for the better, including our own!
18 years from now, I want Savannah Lanier to know the love of Jesus and for her to know Him as her Savior. I want her to continue to spread joy and happiness with that smile that lights up a room! I want her to know God had a plan for her and knew her before she was even born. I want Savannah Lanier to surrender to God and His plans for her, whatever they may be. It is not for me to say what she will become, but whatever God has planned for her, I will be right beside her. I will be her advocate, her educator, and her loudest cheerleader!
I look forward to the future with hope in Christ and the knowledge that He will never leave Savannah. He will never leave any of us.
I anticipate God doing more amazing things in and through Savannah Lanier, not just in the next 18 years, but throughout the long, beautiful life she has ahead of her!
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!
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.