As a quick recap, my first child, Elise, had been born with Down Syndrome. This was completely unexpected and hit us hard. There were many adjustments to being a mom for the first time. I also had the added burden of learning how to care for a child with special needs. I felt ill-equipped and completely out of my depths. Four months later, our daughter had open-heart surgery. We almost lost her during those difficult days.
If you are just now joining me, you might want to start at the beginning.
You can find Part I HERE.
Next in sequence is my daughter’s open heart surgery Part I HERE
and Part II of the open heart surgery HERE.
Now that’s continue.
After this post, CLICK HERE.
The time in the hospital was rough. I still remember a particularly difficult phone call with our cardiologist’s nurse. She was bragging on her boss, which left me extremely perplexed. He seemed negative and unwilling to give hope when hope and faith were all we had. I asked her to explain why he was so good. “Well, he prepares the families so well that when their children die, they really accept it.”
Now mind you, this isn’t some friend who doesn’t deal with life and death issues on a regular basis. This is a trained professional who to talks to patients’ families every day. And these families have children recovering from open-heart surgery. These families are raw and emotional, desperate for a positive word. I could not believe she said something so incredibly callous to me. I replied, “Are you listening to yourself? Did you HEAR what you just said to me?” I wanted to be sure she NEVER said that to another parent ever again. This nurse was tone deaf, but mostly the nurses and doctors were kind. We dropped that negative doctor and switched to a new one, who was truly a remarkable and compassionate person.
After a month in the hospital, we were so happy to leave the hospital and be back home. No more beeping equipment or interruptions in the night. No more sentry duty. Being the advocate for someone in the hospital is a full-time job.
Being home was wonderful, but soon the loneliness set in. Even though I was thrilled to be out the hospital, I hadn’t realized how much I would miss all of the encouragement from the hospital staff. We had tube feedings every few hours. The feedings required an IV pole which meant they had to be done at home. Each feeding took about 45 minutes to complete. Then I had to wash all of the equipment at least once a day. So basically I only had about on hour at a time that I could go anywhere. I was always watching the clock, knowing I was about to turn into a pumpkin. This meant I was stuck at home most of the time except for short errands. The other thing about being in the hospital is that the staff were very accepting of her condition. There it was not an uncommon sight to see someone with a feeding tube. At the grocery store in suburbia, it was another story. People stared.. a lot.
I still remember going into the grocery store with Elise in a baby carrier. I had a very light blanket on top of the carrier so people wouldn’t stare. This was a tough day and I wasn’t in the mood to deal with the stares and the constant questions. One lady came up all smiles because she saw I had a baby. I was in line at the checkout counter so I had no where to go. I non-verbally pleaded with her to go away. She missed my averted glances and unsmiling face. She was determined to see my baby. She had a big (annoying) smile plastered on her face. Without asking, she gingerly lifted the baby blanket and peered into the baby carrier. (I am not making this up, I promise.) As she looked under the blanket, her smile turned to a look of sheer horror. It was as if she had seen a ghost. She put the blanket down and literally ran away. It was so bizarre. It actually didn’t upset me as much as I thought it would. I mean the lady acted like she had seen a monster or something, when she actually saw a baby with Down Syndrome who had a feeding tube taped to her face.
The weird thing is that children would come up and ask questions that were so painful to me, and the parent would just stand there looking at me, like well, aren’t you going to answer? I would look at the parent and think please, please leave me alone. Can’t you see this is not easy for me? Can’t you see I’m broken inside? Once we were at a restaurant, and once again were getting questions. My parents were with me, and my dad had a wicked sense of humor. One little boy asked why she had that tape on her upper lip. The real reason is that it was holding the feeding tube in place, but my dad had grown weary of the questions. He told the little boy that the tape was to keep her upper lip from rolling up. The boy walked away satisfied. That made sense to him. Actually I was relieved my dad didn’t say something worse. His granddad told him some crazy stories when my dad was a kid. One story was about why you should never kill a snake. If you did, the snake’s partner (and they always had one) would come after you. The partner snake would bite his (or her) tail and make himself into a big wheel, then roll around town until he found you. Once the snake found you, I’m not sure what he would do, whether it involved just a poisonous bite, swallowing you whole, or just wrapping himself around your entire body. I just know it terrified my dad. So when you think of it, my dad was pretty well behaved that night.
Months after the open-heart surgery, as Elise was still on a feeding tube, I just happened to run into our neonatologist. She said that since she still needed the feeding tube after her surgery, that the issue was not due to her heart, but due to low tone in her mouth. She suggested a speech therapist who could help us.
We began speech therapy sessions right away. I was determined to graduate from the feeding tube. Adding insult to injury the insurance company said they wouldn’t cover her feeding tube supplies because they were not medically necessary. I told them without the tube feedings she would starve to death, so how were they not necessary? Every now and then my mama bear comes out, and this was one of those cases. After many phone calls and letters from me, at some point they agreed probably to avoid any more phone contact with me.
Elise and I did exercises with her mouth several times a day. After months and months of very hard work, we did it. The feeding tube was no longer needed. It was a big, big day for us. My mother-in-law had a vintage silver spoon pin and on this special occasion she ‘awarded’ me the silver spoon. I was my very own ‘red badge of courage.’ I had earned that medal. I wore it proudly. No.more.feeding.tube. It was a new day.
Now we could go out in public without having to run home for tube feedings. Now we used a sippy cup like other 8 month olds. Sure I had to add a thickening agent, to help her organize the fluids in her mouth, but she was doing it.
Getting rid of the feeding tube was a big step for us. Now dealing with everything else seemed a bit more manageable. The depression was beginning to crack.
Note: Telling my story took longer than I thought. Come back next week for what happened next. I think it will be the last installment, but I make no promises! I don’t like ending things on a down note, so here’s some happy news.
CONTINUE THE STORY HERE.
Thank you for sharing your story.❤️❤️❤️
Your daughters are precious, very lovely beautiful sisters.
Unbelievable obstacles. You are incredibly strong Anita. Obviously, Elise is too! WOW..people really do stump me though with their reactions. I get it from little kids most of the time, but adults, NO. Glad you found a new Doc right away too.
Debbie, I was just as shocked as you. Thanks!!
So sweet and. I know from experience how difficult it was to deal with “ignorant” people’s reaction to your special needs child. Both of your daughters are beautiful !
Thank you for sharing your story with us, Anita.
Thanks for sharing your story!❤️❤️❤️
You are so amazing in so many ways. I am standing up in a one person standing ovation. Applause-Applause!
Anita, it amazes me to this day how insensitive people can be! Thank you for telling your story. It encourages those going through similar things ,even now. Your girls re beautiful!
Thank you for sharing from the heart. It is always hard to make oneself vulnerable. As I read your
story, your two daughters are blessed to have you as a parent.
Special needs kids require exceptional parenting and you have risen to the occasion. Depression is a completely normal response to an unexpected event that required so much of your time and energy.
I also LOVE your book.
I know sharing your story is hard but you are touching our lives. Thanks!
Thank you so very much for sharing you’re very personal story. Your daughters are very beautiful as are you. Your pain is deeply felt as is your joy.
A wonderful story, thanks for sharing!
I have friends with Down syndrome kids and those kids and families are who we all want to be like when we grow up!!??❤️
You have two beautiful daughters- and they have one beautiful mom.
The pictures testify…
Mumma bears are the best kind , remember our children pick parents that are best able to cope.
Anita, your strength is amazing and inspiring. Your daughters look sweet and happy.
Love how strong you are and your daughter is beautiful!
? you and your girls are stronger than realize!
Your story is relatable and personal to me. My older brother–my parents’ firstborn–was born with DS. He was born in the late 60s and in a country where there was little known about DS, so it was almost like taboo. I am familiar with the stares, ignorant comments/questions and with shallow people to choose to flee when they see a person with DS. All of that is seared painfully into my memory, but above and beyond that DS has a beautiful side. People with DS are genuine, loving, selfless, aware, mindful, humorous, witty… I could go on.
In restrospect, I’ve come to recognize that Just like he was a magnet for negative and hurtful people, he also brought people to our lives who were loving and supportive. And those people helped him, my parents and our family move forward and do the best we could. God placed them in our lives.
Happy Birthday to your beautiful daughter!
Anita, I too went through some of the same struggles with my son , that has a disability. I see that you too, are wiser, stronger and very loving mother. I decided that the negative people were there to help me. They pushed me to be a better advocate for my son.
Your a great example of what good mamas do…whatever it takes.
Anita, beautiful girls! Thank you for sharing your story. If we all approached each other, every situation with love, oh what a better world we we have oxo
Wonderful story! My son has mild cerebral palsy and the looks and attitude of so many still upsets me. I never realized so many people are prejudice against handicapped people. He has two masters degrees but walks with a different gait.
I love your story and can’t wait to read about it next week. I just read this quote and want to share it with you: “Happiness does not depend on what happens outside of you but on what happens inside of you. It is measured by the spirit with which you meet the problems of life.” [Harold B. Lee[
Your girls are both beautiful and they have a wonderful mom. Parenting is a constant journey and yours was a harder climb than many. Be proud of yourself and the wonderful job you have done.
You are a great Mom, your daughters are beautiful. I am sorry all your family went through after Elise was born, the equipment needed can be daunting.
I was a pediatric and did some home care. One Mom told me many of the nurses just looked at her daughter and quickly left. I took that case, and was so happy. I saw the love in the child and her family.
I was with them for years.
Women, and especially mothers, are amazing! Thank you for sharing.
Thank you for sharing your story. It just screams of the love and care you have. Thanks for the beautiful pictures. You can see the radiant love of sisters.
God is good and always gives us what we need to get through the tough stuff we just have to lean on Him. Thanks for sharing your story.
Isn’t it amazing how tactless someone can be?! My mom called a doctor’s office to see if they were accepting Medicare patients. The receptionist told her that “No, the doctor has stopped seeing them because the problem is they always die.”
You also brought back memories of when our twins were born very prematurely. The smaller one was 1 lb 14 oz. at birth, and the insurance company would call my husband every morning hounding him about when the babies would be released. One day he finally said, O.K. I’ll ask the nurse if we can just take home the … and preceeded to list all the machines and monitors they were on in the NICU. The calls stopped.
Thank you for sharing your story. It helps to remember that one does not ever truly know what burdens someone is carrying in their heart. You and your daughters are beautiful inside and out.
Thank You for this installment of your personal life on this Labor Day. Parenting is truly a Labor of Love. When a medical or any other concern is added, it adds another element of labor. But it’s the Love that heals our aching back and God that holds our Heart while we do the work to build a family. Praise to you & Yours.
Now,, ,how long do I have to wait for the next part?
I appreciate how hard this is on you, I appreciate the gift of you sharing your family with us.
Barbara Ann
Thanks for sharing your touching story. Your girls are so very lucky to have you in their lives. As you are blessed to have them in your life. XO
Thank you for sharing your story, I can’t help think of the peace it will give others who must go through similar obstacles. I especially love seeing the pictures of your two beautiful daughters.
Anita,
I found your story very moving. Thank you so much for sharing!
I love reading your story, thank you for sharing with us. I admire you greatly!!!
Thanks for sharing your story of your precious little girl. I know those angels were a sign from God! I love seeing the pictures of you and your daughters together. There is so much love in every picture. I know several people with down syndrome children. It takes so much courage and strength to make it through all the challenges. You are a strong person. I also know the many blessings that come with a down syndrome child. They have a certain sweetness and child like believe and excitement that just lights up a room. Thanks again for sharing.
belief not believe! Sorry!
I wish I had known you back then so I could have given you a hug of encouragement. God Bless You. You are a great model for a Mother.
Anita,
Looking forward to hearing more of your story. I am sure some of your readers needed to hear this and you are such an inspiration to so many. Have a wonderful Labor Day weekend. ?
You have two beautiful daughters and I can’t wait for Part III!! What a wonderful mother you are!
I am so thankful I read your blog today. I so needed it. Thanks for telling the story. I look forward to more.
Thank you for sharing your very touching story.
Your daughters are BEAUTIFUL!
Anita, your daughters are so beautiful! I love these photos of them together. This story captures how you seem to do life. You see beauty in every situation. Thank you for sharing this story.
As the ‘big sister’ to a down syndrome sister (I refuse to capitalize the condition, to not give it any more energy than blond or left-handed-ness), I can relate somewhat. Libby was born strong and healthy, thankfully, but our family faced many of the same judgments as yours. But society is changing, learning to value those who are ‘different’.
Your daughters are part of the solution. Together you will change the world, enlightening and educating everyone you come in contact with. I bless your journey.
I’m so glad you are sharing your story. I work with Preschoolers with special needs and often the parents are still mourning the diagnosis they were given for their child. I just want to hug them and make it all right but unfortunately it doesn’t work that easily. Your daughters are beautiful! Big hugs! karen…
You have a beautiful family. Thanks for sharing your story.
Thank you for sharuing your story, Anita. I know it will touch everyone who reads it and will help some too! BOTH of your daughters are beautiful. I am sure beyond a shadow of a doubt that Elise has brought you MUCH MORE joy then sorrow. On a personal note, as you know our granddaughter is black. It just amazes me that in the year 2016, we still get dirty looks and stares from paople. We were in a restaurant, Colleen was sitting next to me and we hadn’t gotten our food yet so I had my arm around her, and the man and woman (especially the woman) kept looking over at us with pure contempt. It breaks my heart. Have a wonderful Labor day with your beautiful girls. XO
Thanks so much for sharing your story Anita. Your daughter is beautiful and so sweet. I can’t believe how rude people are. The girls are truly so pretty and special.
Hugs to you and the girls,
Mary
Your daughters are lovely. Thank you for sharing your story.
You are an amazing Mother and woman Anita. Your daughters are very lucky to have a mom like you!
Thank you Anita for sharing.
Thank you for sharing your story of love with us. ?
Thanks for sharing. You are an inspiration.
What wonderful daughters you have, they are both beautiful. Clearly you are full of love and courage. An inspiration to us all. Thank you for sharing your story.
Cudos. My son was born 4/13/1967. I was 19 yrs old and not been raised around children. I did not know what to expect, did not know what to look for. Let me skip the details and say that my son was referred to as slow and not advancing up to potential. We were sent to the Child Study Center just before his first birthday for tests, which lasted approx. 12 months. Then the meeting with the doctor about the results of the test. He was classified Mentally Retarded and entered private school. Mentally Retarded is a taboo term now so we call him Special Needs. Thanks to work I now know was championed by Hillary, he was able to enter public school in 1974 and graduated from high school in 1989. He then moved out of our home to a group home for 14 years until cuts in funding and care became life threatening. He now lives at home and I care for him full time. He is a blessing indeed. The things people take for granted are HUGE. I have been to school with him as his partner where he learned to read and write. We attended gross motor skills so he learned to walk and not fall forward. Along the way, many people have been kind, many have been sympathetic. Many have been mean. Very few have understood what his life along with his struggles have been. At this time, I truly believe no one has ever known how it has been for me. Mostly my fault, I never had time to think about what it was like for me. I was a single mom of three with an ex who did not participate in the care of our kids. I have no regrets. The only thing I can say that has ever made me mad or makes me mad is where people express to me that my son is disabled and should be pitied. Thank you for your writing and God Bless
I love your story, your daughter is especially beautiful….
It amazes me how insensitive people can be, my very best friend has a handicap son,and when ever we went out we always had to deal with people who just could not stop to ask us what was wrong with him….thanks for sharing your amazing story with us….
Smiles~
Maritza
Your story helps others in dealing with insensitive people and medical “professionals”. We all wish we would have said such and such but sometimes are so caught off guard. Looks like you did a good job! Thanks for sharing.
I have always believed that mothers who are blessed with a special needs child, were chosen because of their strength of mind, and heart. No ordinary woman could have done what you did. Your daughters are beautiful, and your story brought tears to my eyes. Not tears of sadness, but tears of empathy and admiration for the women you all are. Here’s to a happy life! Hugs xx
Thank you for sharing the story of your beautiful girl, my heart hurt reading about the hateful comments. Our youngest grandson was a cleft baby adopted from China…we have heard many comments like that. Both of your girls are so pretty, I know you must be so proud of them, I know I sure would be. Happy Birthday to your daughter and God bless you all.
Anita, I’m mortified and embarrassed by the way you were treated and spoken to by Elise’s health care providers. I spent my advance practice nursing career as a clinician and manager of the general surgery service supervising medical students, residents along with the professors of surgery in caring for veterans. Had I heard any of our patients or family spoken to or treated as you were, they would have been quickly looking for another job. I can’t speak to the display of bad manners by others you’ve encountered. Raised by wolves?
Elsie is such a beautiful girl! Both your daughters are. I had no idea that people could be such morons as some of those you experienced. Hopefully, they’ll learn a little more empathy from life eventually. I can only imagine the weight of those early years on you and your husband. I have a little great-grandson that is autistic and life is hard for that family………..but I think you must be a very special kind of lady to have such a load put on your plate and some up shining. You are a shining example to other parents of how to walk through the hard and take joy in the Blessings……….God Bless you……
Happy birthday to your very beautiful daughter. She is blessed to have you, you are blessed to have her.
Anita thank you for being transparent with us. As a retired pediatric nurse I often had special needs children in a home health setting. The stress on families tremendous. I too am upset to know that trained professionals can be so unkind but like you I have encountered a few. I have been reading your blog for a short time but admire you even more for sharing this story. Your daughters truly are beautiful. God bless and enjoy your Labor Day.
Dear Anita,
Thank you for sharing your story. Both of your daughters are beautiful! I also have a special needs daughter. We celebrated her birthday on September 1st – she is 32 years old and has Cerebral Palsy and a seizure disorder. She has had a feeding tube for the last 3 years and requires full time care as she is approximately 6 months old developmentally. She has endured so many painful surgeries and therapy appointments. Yet she is the sweetest little angel! Caring for her is such a privilege and I am so thankful the Lord trusted me with this precious gift. You and I (and all special needs parents)- we are the lucky ones! We have these beautiful children who teach us what is really important and to celebrate the most simple achievements that others take for granted. Of course, there are hard days and there are many rude people. But I learned a long time ago that when someone stares – I smile intently at them until they make eye contact. I want them to see I am proud of my daughter. When children stare, I usually smile and say, “Her name is Katie – would you like to say hello?” For all the people who cut in front of us while we navigate her wheelchair around, there are the few who will hold a door open or give us a friendly smile. Those people always make my day! I did not intend to write so much, but I wanted you to know you are not alone in your journey. I wish you a beautiful day! God Bless!
I am walking in your shoes. …..my body is filled with pain. …..but when I walk in the room where she is …. her smile and she mutters “Mama” with such joy….even when I walked out of the room two minutes ago ….I never knew I could love so much. Thank you for telling it like it is. My hugs to you and yours.
Thank for sharing both anguish and pain you lived through – I hope it will help others to be much more supportive and caring for moms who find themselves in your place. Your commitment, perseverance, and overwhelming love for your daughter is truly amazing.
We have a good friend who is at the pinnacle of his academic and economic achievements who teaches a Sunday School class of ds children — he says the whole world is looking for love through intellect and power, but no one has more love to give than these children. They love so innocently and beautifully — this is the best hour of his week.
Thank you for sharing these stories. It helps me understand the feelings of mom with a down syndrome child. I think both of your daughters are beautiful! May God always bless you and your family as you travel through your days.
Thank you for sharing your story. Your girls are beautiful.
Our son is 30 years old and has Down syndrome. He is also deaf, incontinent and has lost the ability to walk. Tommy also had surgeries after birth and it was touch and go that first month of his life. We can relate to your story and have experienced the pain and joy of raising our son. He lives at home with us and we are devoted to give him the best life we can provide by loving him unconditionally. May God watch over all our children especially those who need special care and also grant us the health and wisdom to care for them.
Anita, I’ve always admired you, but today, it’s tripled. You are one strong, amazing, capable woman. The world needs more like you. So much love for you and Hank you for sharing your heart.
Thank you so much for being so transparent and honest and sharing your story. I thoroughly understand! With much love and compassion, Carolyn
Thank you again for your story, again you are such a beautiful lady inside and out.
Did you know that Ree Drummond of ‘The Pioneer Woman” has a brother with DS. He is now an adult and doing fine. You should contact her as she has a kind heart and I am sure it would be wonderful for you. You should see how she gets along with him and it is so cute.
I think the people in this world that count are all of us that are behind you. Your doing wonderful.
Lisa Peterson
Did you know that Ree Drummond of “The Pioneer Woman” has a brother with DS.
He is a grown up now and the way she relates to him is so cute. You should contact her as I think it would be so good for you to know her.
You are doing wonderful and all of us who care are behind you.
Lisa Peterson
Thank you for sharing your story with us. Your daughters are very beautiful. I had an anencephalic baby and I would have given up everything to make him live but the doctor said, he had zero survival chance. He lived for 8 days. I know God has a reason for everything cause more than 2 years ago, my granddaughter was diagnosed with a childhood ca and we always had a personal angel to pray to for him to pray to God for her. She has been on remission for 2 years now….Christine
Thank you for sharing your story with us. Your daughters are very beautiful. I had an anencephalic baby and I would have given up everything to make him live but the doctor said, he had zero survival chance. He lived for 8 days. I know God has a reason for everything cause more than 2 years ago, my granddaughter was diagnosed with a childhood ca and we always had a personal angel to pray to for him to pray to God for her. She has been on remission for 2 years now….Christine
Anita, i’m so sorry you have encountered so many ignorant people. I was a special needs aide for 21 years and I have to tell you my little Downs Syndrome charge, of all my wonderful kids, will ALWAYS be favorite. He has turned into a wonderful young man. A main reason he is so wonderful is because his mother always just treated him like a kid. Which is exactly who he is. Remember Elise will always be your little girl. Lucky you! Enjoy her everyday, be thankful you’ve been chosen to be her mom.?
Your daughters are so beautiful! Thank you for sharing your story!!
The pictures you have posted are all of beautiful young girls. (including you too).
Luckily, the world is slowly becoming more educated about special needs.
I enjoyed your story.
Nancy
You and your daughter are so brave, and strong, bless you both!
I am a retired RN and can understand your feelings. When younger children ask questions about your baby they are not being rude they are asking for a reason and it is a great time for teaching. This is a gentle way of showing them we are not all created the same. After you answer their questions they just accept the answer and either return to what they were doing prior or you will see them thinking about what they have just learned.
May God continue to bless you and your family.
What a wonderful brave new mom you were!?
Thank you so much for sharing!
Thank you so much for sharing!
My oldest brother, who was born 11 months after me, was developmentally challenged. Of course, I didn’t realize this until we were older and starting school. He had a very difficult time in learning; our parents did everything within their power to get the right kind of help for him. It ended up that he had to live away from home; there was never one weekend though that we didn’t visit him, and most weekends we’d bring him home. I’ve never known anyone who was as brave, and loving as my brother. Your story reiterates to me that God knows exactly what he’s doing when he gives children like your beautiful daughter and my awesome brother to those of us who are so blessed to be able to dig down in our hearts and souls to take care of our loved ones. You’re an amazing mother, and I thank you for sharing with us. My brother passed away in l998 due to medical negligence.
Thank you for your candid and transparent recounting of your story. It kept me spell bound. One thing I’ve learned is that when we experience especially difficult times in our lives, they change us. Though we wouldn’t ask for difficulties, they can be a precious gift that make us deeper, more compassionate, more thoughtful, more insightful, more understanding of others and more dependent on a loving Heavenly Father who only allows us as much pain as we can bear, with His help. All that you’ve experienced has clearly had a positive affect on you. Bless your two beautiful and precious daughters as well.
Anita,
Thank you for letting us into your private space. Your sweet daughter is very
fortunate to have you for her mother. I can’t imagine going through all the
surgeries and the special care that you gave. You will be in my prayers.
By the way, both your daughters are so very cute!
Georgia
What an amazing g family! I love seeing the love your daughters seem to share. What a harrowing time you had, and yet, even though your story is to continue, it’s plain to see that God blessed you with two wonderful daughters.
Like others, I am astonished at what people say. I’ve recently overcome breast cancer, lots of complications, and nearly died twice last year. Yet so many people felt the need to tell me of a friend/sister/mother/etc who had died of breast cancer. This was at my most vulnerable stage. I can’t begin to understand what you, as a very vulnerable new mother, had to go through. The angst and worry for your little precious one was enough, without such thoughtless and hurtful comments by others. Well done for telling your story.
Elise is a beautiful girl! I can see that she is well loved by yourself as well as her sister! Lots of Blessings for your lives together!
Lovies
Hanniki Bruère
The Victorian Cow
Riebeek Kasteel
SOUTH AFRICA
I have a lot of negative tales of stranger negative comments so I understand what kind of strange bizzaro world you were in when you experienced that glimpse of negative wave of almost ‘another world’ suddenly becoming visible in front of you! Incredibly disruptive and incomprehencable!
Bless you for staying the course! We learn a more pure family-bond way to love when we have children and more so when we have huge challenges that come along with a child who is different than the preceived norm.
Thanks for sharing, I ope it brings you peace. Your ers are beautiful and they are a testament to your loving mothering skills!
Thank you for posting so many wonderful pictures. Your daughters (and you) are beautiful as are your words. Having nearly lost a child (at age 2) due to Spinal Meningitis, I understand so many of your emotional struggles. It was my first “hard” experience with a child (she was my youngest) and it grew my faith as I saw God’s sweet blessings in the midst of painful moments, like your angels.
I am very touched by your courage, and acceptance of, all that needed to be
accomplished to give your daughter a good life. Your girls are just darling
in the photos. You are a blessing to each of them.
Sent with love from a great gram!
Hi Anita – I am very touched by your story…thank you for sharing it. Your daughters are beautiful and you are a wonderful Mother!!
Anita,
Thank you so much for being so genuine and sharing your story. As I go along in life, I find most people have some tragic story in their background. I believe God allows these circumstances in order to provide an opportunity for us to run to Him in faith and with complete trust. Sadly, some choose to run from Him and find themselves alone and without hope. You have a beautiful family. God bless you.
Beautiful daughters with a wonderful Mother….very inspiring story!
Thank you, for the courage you have to share your story…it allows me to feel okay with my humaness too.
Thank you so much for sharing your story in spite of having to remember the painful parts. It really is encouraging.
I also have a special needs child. And although our circumstances are different, I encountered the same reactions from people and had the same feelings of complete depression and heartache!!! I felt completely alone… And felt as if everyone else got to go on with their “perfect” lives, and mine had just come to a screeching halt! My Noah is 18 now. Days are good and days are bad-it’s welcoming to hear others’ stories and know we all belong in our special club that others have no understanding of! I enjoy so much your blog and the beautiful pictures you post! But I especially appreciate this personal story of your precious daughter!!! Thank you!!!
I totally get it Marcia. Thanks.
Your girls are beautiful!!
I’m a retired special education teacher, and I worked with many families with children who had special needs. I was always surprised by some of the comments by parents of neurotypical children and even other educators. I always responded that I didn’t know what it was like to care for a child with special needs for 24/7 and that parents do what is best for their families. What was pleasing to me was how accepted and loved most of these children were by their peers. Our school endorsed inclusion and emphasized the importance of community. My students were protected and accepted by students who had been with them since pre-Kindergarten. Typical students learned compassion and empathy for students who didn’t always have a voice. I know my life was changed by the students I taught, and I will be forever grateful for that opportunity. Thank you for sharing some of the hurt and isolation that you felt at the beginning of her life and for voicing your frustration with the reactions of unthinking adults. It is a reminder to me to be thoughtful and caring toward those who may be hurting. Parents like you are my heroes. Happy Birthday to your beautiful daughter.
Thanks Janet. Thankfully I did recover from the depression, although it was a tough first year.
Thank you for sharing your touching story. Bless you Anita! And your beautiful daughters too! How encouraging your story is!
Anita,
Thank you, dear friend, for having the courage to share your story of Elise’s life.
God chose you to be Elise’s Mother, he knew you had enough love to conquer all fear!
May God continue to bless you, Elise and your family as you grow in love together!
Fondly,
Pat
Anita, thank you for sharing your story of heartache, struggle, hope and Love. I wish you and your beautiful Family Many Blessings. Rose
Thank you for sharing your story and your faith!!
Anita, congratulations on being so forthright. It is definitely inspiring, and I hope Elise and your other daughter have both been instilled with that same sense of strength, hope and endurance for life’s trials. Thank you for co-hosting the Scoop, and I look forward to the remainder of the story. Btw, I love your short hair in the photos of the era pictured here.
Rita
You are a strong women, bless you!
You are a very strong woman, bless you!
Anita, I can understand how difficult this must be to put it in print. I worked with special needs children for 18 years in the public school system, all their parents were a special breed. I shared the care of one little girl, wheel chair, feed tube, non verbal. But when she heard my voice smiles giggles and coos even over the phone to prove to that she did know the difference of people. I just about punched the my cohort in the mouth when she admitted that she had point blank asked the Mother what was the little girl’s life expectancy . Some people just don’t have brains let alone commonsense. Happy Birthday to Elise ♥
Oh my Gerri, glad you were there to silence that!
Thanks for sharing. I know it is not always easy to share an emotional life story with the raw emotions it brings alive. I admire you sharing. I stay mostly silent about my own story, maybe because I often can not talk about it….the cat gets my tongue so to speak as I struggle to not cry, to keep the pain pushed down below my throat so I don’t feel that agonizing lump in my throat. The unknown and fear you knew, so did I. Your part about open heart surgery made that pesky lump surface in my throat. I lost my son at the age of 3 at Texas Childrens Hospital to open heart surgery. I was the mom not prepared. The mom who knew we had survived all the other surgeries. The mom who was told to save for college. The mom who was busy calming the nerves of all the other parents in the waiting room, assuring them. I had been in that waiting room multiple times. When they called me to “that” room, I knew. I knew my son was gone. He would not be going home. I am so thankful you did not get called to “that” room. I am so glad your precious daughter is still with you. As much as the pain has at times seemed to be more than I could bear, I am thankful I had my beautiful boy for the 3 years I did. I would not trade 1 second I had with him. I felt really lost in more ways than one when he died. For 3 years my days and nights were spent keeping him alive. Our routine of medicines, machines, and doctors was gone and the not doing that any more amplified the loss. He was mine and I loved him and I miss him very much. He would be turning 20 this month.
oh Pam, how heart-breaking. The loss you suffered. I can still see ‘that room’. I am very, very sorry. I don’t think I have any words to say. I’m sending you a hug virtually.
I am very much a sunbeam person and strive to smile over frowning. September and December bring the heartache to the forefront. His bday is in September and he died 2 weeks before Christmas. Dates can cause us to “feel” the past can’t it! Now too my big smile producer is the little bean coming and that I get to be Mimi to that bean!!! What a sunbeam to warm my heart!
I have a cousin with DS. He is such a beautiful soul. He adores my mom! They have a lovely connection. He also loves Elvis. You should his room! He recently turned 40. I remember my aunt finding out when he went for a checkup.
I really respect you sharing. Hug your girls!
Dearest Pam,
Although 17 years later and even though I’ve never experienced your heartache, I want you to know that as the tears stream down my cheeks,my heart truly aches for you and the loss of your little boy! to say that you were blessed and thankful for the 3 years you had with him, is the GREATEST example of God’s word
( in all things give thanks.
1 Thessalonians 5:18) i will NEVER forget your words. Thank you!
Thank you Lisa. 17 years but sometimes feels like yesterday. He was a blessing and I am so proud he was mine.
Anita,
Thank you for sharing your heart with us. Your girls are so beautiful and I do believe God chooses our children for us. I also had two daughters both born very healthy which was such a blessing, unexpectedly my older daughter Lauren died in her sleep when she was only 12. I’m crying as I share this but feel we are here as mothers to support each other. Every day we have with our children is a gift. I will look forward to reading part III of your lovely story.
Hugs,
Sharon
Sharon, that is so sad. What a sweet spirit you have. Thank you for sharing your story.
Thank you for sharing. There is something from this story that we can all use.
First, Happy Birthday to Elise, and a hug to you both, I can not imagine the heartbreak you have been thru, But it looks like things are going better, for all of you, Are you daughters close in age? they are both adorable. You are a brave strong woman, with talents of motherhood, and fantastic decorating ideas. I look forward in all your post and for you continued story of Elise. Support from family and friends is so important, you are blessed to have that. Not everyone does. Sending you love, and hugs.
Yes things are much, much better Missie.
Anita! Both of your daughters are blessed to have you as their mom. They know that you are in their corner and are their advocate! You didn’t run from the situation, but embraced it, refusing to give up. Hallelujah! I am rejoicing with you. Thank you for sharing your story.. what an encouragement!! (PS. I love your book, it is one of my favorites. I really enjoyed your segment in the Country French magazine as well.) You have a wonderful day!
Thank you Georgia. Life goes on.
Anita….thanks again for sharing your journey….I simply can’t imagine! All that one goes through in this life…..but your journey alone will definitely give strength, hope, and courage to others out there walking theirs!!!!! The pics are wonderful! The one with the three of you is amazing! You look absolutely beautiful and the girls could not be more adorable and precious! And your father!!!! How great to have that protecter of not only his little girl…but his precious little granddaughter!!!!! Love it! ♡ Roxann
Thanks Roxann!
Your daughters are beautiful and I can see how much they love each other. Thanks for sharing
God has BLESSED you with two beautiful children! ♡♡
He gives special children to special people. EVERY child is a gift and a MIRACLE. Thank you for sharing your story and beautiful pictures.
You are truly BLESSED with two beautiful girls. ♡♡
EVERY child is a gift, a miracle! He gives special children to special people 😉
I remember when the doctor’s told me that my son may have down syndrome- I felt as though God trusted me enough to handle one of his precious children with special needs.
Anita, Thank you for sharing your heart with us. My heart hurts for you and all that you and your family have endured. Blessings to you.
The story continues and you continue as a beautiful Mom
Your daughter is beautiful. And this may sound crazy, but the story is beautiful and it’s not over. I had a brother with Down Syndrome. He passed away at the age of 13 and I was 6; many, many years ago. I still remember he was a gentle soul and I loved him dearly.
I am so happy that your story continues – both on paper and in real life. You are blessed to have her as a daughter and she is blessed to have you for her mother.
God bless you both.
Yes Jane, it’s not over yet! Thanks for sharing!!
I am retired now, but when I was working, one of my employees had Downs Syndrome. I learned so much from this beautiful person. He was kind, gentle and dedicated. He didn’t hold grudges; he didn’t gossip; he was enthusiastic; he had not a mean bone in his body; he did a fantastic job in our office. He knew sports stats like nobody else I know. He made up an appropriate and funny nic-name for each of the 65 employees. He remembered everyone’s birthdates. Everyone in the office felt a true bond with him. He had a terrific sense of humor and lifted the spirits of all who knew him. And….he was the most POSITIVE person I have ever met. I would say, “Oh, it’s not a very nice day outside today”. He would say, “It’s all good”. I learned so much and was blessed in so many ways to have had him in my life. I hope this isn’t inappropriate. I just wanted to let you know what his having Downs Syndrome did for others. He was wonderful and we all learned from this beautiful soul.
Bless you for being so open & vulnerable to share your story. I’m sure it will be an encouragement to a struggling mother of a special needs child.
You are one Tough lady. I always think of a Bible quote. ” If he leads you to it he will lead you through it. “
I am so sorry that people can be so cruel. You are so strong and did a beautiful job taking care of your little girl!
Anita, thank you for sharing your story…you have beautiful daughters! Blessings, Pam @ Everyday Lving
I am so touched. I’m glad you shared your story with us. You are a true inspiration. Your children are beautiful, and so are you.
I know this has a happy ending, because we have one with my brother too!
Well, the only way I know to explain certain people is that they are just plain old assholes. I don’t coat the truth! I was married to a doctor. Not all of them have a great or even a good bedside manner. I don’t think they teach that in medical school. Maybe they do now, I don’t know. But your girls are both so beautiful, and I can tell they love each other very much.
Brenda
Thanks Brenda. You do tell it like it is.
Thanks for having the courage and the grace to share your story, and what a beautiful story it is! I know you will be a blessing to those Moms that have children with similar disabilities. We have good friends at our church who has a son with Down Syndrome and what a blessing he is to everyone! I can imagine that your Elise is too! Thanks again for sharing….,.blessings to you and your family!
I just want to say what a brave and wonderful post this was Anita. I have three children and I literally cannot imagine what it must’ve felt like to experience what you did right after her birth. My heart literally aches for you. A young mother, a first time mother. I know that was quite a blow. And I hear how painful it was. But I also see photos of a beautiful (yes, beautiful!) girl, smiling with her sister and her mother and I know that you have been a wonderful mother. Your strength and love got her through. And got you through.
Thank you for sharing this Anita. I love how honest you were, raw though it may be. And I simply cannot understand how ANYONE could comment on your daughter, whether you speak about her or you don’t. This was your story to tell, and you did it extremely well.
I am so glad that I got to meet you at Haven. I thought there that you were an extraordinary person. There was something about the way you spoke, and how excited your were to teach us, that I found so touching. You are a gifted and special person, in many greater ways than just your gorgeous photography and decorating. Thank you for touching me tonight. I cannot remember the last time I was crying while reading a blog….
Sheila
xo
http://www.maisondecinq.blogspot.com
Your daughters are lovely. Thanks again for sharing your story.
Your story broke my heart, but your strength and love are an inspiration. Your daughters are beautiful and the love your family has is a reflection of you. God seems to tug us into shape with trials and his way is always the best way for us to grow. May your blessings continue.
I appreciate you sharing your story of your daughter. I have a daughter close to her age and I can’t imagine having to live through what you lived through! What a story of God given strength!
Stay strong Mama Bear! Your story reminds me of the ups and downs and many blessings my sister had with her son who was born with several disabilities. Today he is a strong, spiritual, and loving man with the beautiful soul of an angel. He is a constant blessing to our family as your girls are and will continue to be. Stay Strong Mama Bear. Stay Strong!
My brother & sister-in-law’s first child, Logan, is Down Syndrome, they were also blind sided and lost when he was born.
Fortunately, they had a great OB who referred them to a caring & understanding pediatrician & genetics specialist who helped them line up different types of theapist that their son would need through the first several years of his life.
Logan also went through open heart surgery, which as I understand is pretty common. He also had numerous sets of tubes for ear issues and various medical problems.
This child is the biggest blessing our family has ever had. But like you, it has not always been easy (for various reasons). I often wondered if we were just being overly protective or over sensitive when people would stare and ask stupid questions. Over time, I came to realize it wasn’t us. People can be so ignorant and insensitive.
Our Logan is now 18. He is and always has been the most loving person I’ve ever known. He has the most amazing memory. He is funny. He is smart. He is headstrong (okay, downright stubborn at times). He is a cutie. He is a great big brother to his two younger sisters. He greets & speaks to every single person he knows. He is a rock star at his high school & at his sister’s sporting events.
Logan is a true blessing to our family. He teaches us all so much each & everyday. He sees the good in people. He could care less what type car someone drives, what brand jeans or shoes someone is wearing or what neighborhood someone lives in.
If we could all live with such an open heart & a great outlook on life…wouldn’t the world be a better place?
Many blessings to you & your lovely family. Thank you for sharing your journey.
Anita, Elsie is so fortunate to have you as a Mom. Thanks for sharing your story.
Thank you so much for sharing your story and that of your beautiful daughter…..and truly she is a beautiful girl! The picture of your 2 daughters, obviously loving on each other, is incredibly touching and beautiful. It shows unconditional love they each have for one another.
I have not had to deal with problems such as these…..but I think we all have tests we have to survive in this life. Your story is one such. I taught Lamaze classes years ago…and I can recall some of my people having to endure well-meaning but horrifying stories of strangers’ insensitivities. In our son’s life, he and his wife lost a baby at 22 weeks gestation due to an accident in utero. And our daughter and her hubby decided to not have children between them once it was discovered that his son from a previous relationship had some very difficult issues to contend with. Both sets of those parents have suffered. But I would like to remind us all that even though these are heartbreaking, heart–wrenching experiences we go through, God is still there. God is still in control. And He doesn’t make mistakes.
What our job is to do is to help console, help others going through these trials by surrounding them with compassion and care.
God bless you for sharing….and may your story help others along their paths.
Thank you for sharing your story. You’re an amazing mother and your daughters are beautiful 🙂
God does all things for a reason though often it is not revealed to our eyes until He is ready. I trust God has placed you where He needed you to be. He is teaching and healing through you. I trust His plan.
Thank you so much for sharing your story. Happy Birthday to your beautiful daughter
Thank you for sharing your story! I have several friends who adopt special needs children, so that all may know that they are loved & have a loving home. I have other friends who have been blessed with (their words, and mine too, as I have gotten to know these incredible children) biological children of their own. The challenges have been many & the rewards have been full for both the parents and the children. Your daughters are each beautiful and incredible people. Thank you (and please thank them) for sharing their & your story.
The pic with the 3 of you is not only beautiful but priceless. Both girls are beautiful. My bf in my 30’s had a DS daughter and said she felt incredibly blessed. My 13 yr old was doing what teens do emotionally, and she added, My daughter won’t ever treat me like that. She loves me unconditionally. I knew what she meant and added, you have daily challenges, mine comes in spurts, but Motherhood never comes unchallenged. That’s why it’s so rewarding.
Thank you for sharing such a heartfelt story. Your daughters are beautiful, as is their mother.
Anita,
A bittersweet story told so beautifully. As a NICU nurse, I spent many years on the other side of your story. It was an honor and privilege to work with families in distress who, like you, never lost hope. It upsets me that you had to listen to the words of the cardiologist’s nurse! Blessings to you and your family. Thank you for sharing your story.
What an amazing journey. Your daughters are both beautiful….just like you. You are a very strong woman and I just bet your daughters will be too!!
Thank you for sharing your heartfelt story. It is one that I will always remember. You never gave up the Faith that God would help you and your daughter through this. You are truly blessed, you have an adorable daughter. Life is never the way anyone of us plans it to go, but God has a plan for all of us. We have to be patient and keep praying. I see you have done a wonderful job with both your daughters. May God Bless you all!
You are an amazing mom and a strong woman. Thank you for sharing. Your daughter is beautiful and so are you.
Anita, thank you for sharing with us. You are proof that strength, family and love can overcome so much. Your story will inspire others struggling with similar issues and give them strength and hope.
We are grateful to you and your beautiful family.
Thank you for sharing your story. Your honesty and bravery shows in each word. As women, we need to be encouraging and lifting each other up during these hard journeys and by telling your story you have shown us how. God leaves no circumstance in our lives unused. Opening our hearts to show those scars helps others that may be walking that hard road right now. The pictures of your beautiful girls shows the mountaintop you reached after the valley. Blessings to you.
Anita,
I always enjoy your notes. Thank you especially for sharing your experience with Elise. I have friends with a “Downs baby” – discovered on prenatal ultrasound, and she had intrauterine heart surgery (I guess it’s called fetal surgery) a month or so (can’t remember exactly), in another state, before she was born. She is a delightful little girl with two older sisters and a go-getter mom and dad. I look forward to more of your experience with Elise! From all I have seen, these precious little ones are a delight and certainly have a lot to teach the rest of the population. Thank you again!
Now that I am more able to leave you a message. I read all replies through a torrent of tears, not in sadness, but thankful that though you may not know them, but they cared so much to reply. I am a mother of three daughters, a retired nurse, and a widow. I write this with admiration, pride and wonder at all the thoughtful, loving and inspirational replies you received.to your story. I noticed only smiles on your face and daughters faces – it appears you are doing many things right in an enormous challenge. I admire you and all of the replies are written so lovingly. Please put me in whatever schedule you may, I enjoy the blog enormously. Much admiration to you and girls.
Thank you Anita for continuing your story. As I said before, we adopted our special needs children The eldest just turned forty eight. Our family endured many heartaches and rough times dealing with their physical, emotional and mental difficulties but I agree each child was a gift. Even now as they each live somewhat independantly, I see them struggle with the fact that others treat them so cruelly at times because their behavior is not the “norm”. My daughter age 46 finds so much to enjoy every day in the simple beauty of nature and God’s wildlife, the seasons as they change or a beautiful new song she hears.
She lives meagerly and does not require much materially to bring her happiness. She continues to suffer medically and cannot eat solid foods, has PTSD from early abuse but still finds joy around her. You are a special mother and know that God chose you for those beautiful daughters. We now have six on the autism spectrum, each one unique and gifted.
I have always been curious to know what families with a DS child have to cope with. In my congregation, there have been 2 children with DS and many are able to offer regular and real help. But, your story helps me understand the challenges so much more! Thank you for sharing, Anita. This is so helpful to so many!
Sharing your story is incredibly valuable & loving for so many. Thank you for doing it. And bless your beautiful daughters & your lives. You give us so much with your writing.
Thank you, Anita. Your daughters are beautiful. As are you. I’m not talking about outward beauty, but the inward beauty that makes us who we really are. Thank you for sharing your story. As I read your story, I cried a few tears. We are all broken but one day we will see Jesus and be physically whole again. I’m thankful that God has a purpose for each of us…. Not necessarily the one we would have carved out for ourselves. His plan is bigger and greater than ours. Your story and your daughter’s story have touched many. Blessings!
God bless your two precious girls. My brother was a DS child and had to be sent away because he began to be a burden on the other children in the family – throwing forks and sharp objects at them. I never knew him. You are so fortunate to be able to keep your daughter living at home surrounded by loving family and friends. You are blessed.
You have a beautiful family. God Bless You.
Anita,
Thank you for sharing your story……..and I thought your decorating was the most interesting and accomplished thing about you . Clearly you are a magnificent/ warrior mother. Your girls are beautiful and so fortunate to have you for a mom.
Your daughters are beautiful. Thank you for sharing your story!
You and your beautiful family are awesome. Thank you so much for sharing❤️
Thank you for sharing! Your daughters are blessed to have you for their mama! May God and his angels always watch over and bless your beautiful family.
It is hard to read your story, but I know so much harder for you to live it. Your courage in sharing it is so touching.
Anita, I commend you on your strength. May you always keep God with you. Blessings, Pat.
I really don’t think people mean to be cruel. If they haven’t dealt with anything in their lives that is out of the norm, then they really don’t know how to react. Your oldest daughter is a beautiful girl and from the time she was very young she seems to be such a happy person. Children with disabilities such as this are special angels. The are so very loving and giving… it is just a part of them that radiates joy to all those around them. Thank you for sharing. Blessings on you all.