“Perhaps he knew, as I did not, that the earth was made round so that we would not see too far down the road.” Karen Blixen
This is a multi-part story.
As a quick recap, my first child, Elise, had been born with Down Syndrome. This is about her birth, open-heart surgery and about that hard first year.
If you are just now joining me, you might want to start at the beginning.
Part I click HERE.
Open-heart surgery I click HERE
Open-heart surgery II click HERE.
Part II click HERE.
Now you are caught up.
When we first found out about the news, friends came by and loved on us and sent many condolences. I was numb. I wasn’t able to absorb that love until I began to heal, many months later. It’s like they had made a deposit I wasn’t able to withdraw until the check cleared. It had about a nine month delay as odd as it sounds. Some didn’t say the right thing, but it was okay. I knew they were there for me. The sad thing as I think back is how rarely someone congratulated me on my beautiful new baby. But still I am grateful for the outpouring of love that was critical as I began to emerge from my fog.
I needed that support from friends, but I also needed to hear from other survivors. I wanted to hear that it would be okay, that Elise could have a happy life. I met many parents. Some had children with a disability, while others had lost their children. These were the most heart-breaking conversations, where tears spilled freely. How could I complain to them? We still had Elise, I could still hold her, something those moms had been robbed of. I began to understand that I was not alone.
One day I was putting away those first cards that had come in when she was first born. I found a note that asked me to get in contact with another mom. She too had a child with Down Syndrome. Gracie was a beautiful girl, with Down Syndrome who developed leukemia. During the treatment, she had no oxygen for some time, and as a result she endured some brain damage. That damage left her with CP like symptoms.
In talking with her mother, I discovered that she (the mom) was a happy person, joy-filled person. They had not given up, but were doing everything they could to help Gracie. They created a foundation to help others. They lived in the country in a charming home. I’m not sure I put everything together at the time, but that was a turning point for me.
When we found out about the Down Syndrome, it felt like the life I had dreamed of was shattered in more ways that one. I love interior design, but began to see it as a trivial matter no longer worthy of my time. I had to focus on doing everything I could to help my daughter live a happy life. I wasn’t taking care of myself, or my home, and had abandoned my dreams. My only thought each day was for my daughter. This appeared to be the right thing. I thought I was doing what I was supposed to be doing, focusing ONLY on my daughter’s care. When I turned my back on my love of creating beautiful spaces, I removed a core part of who I was, who I am. Telling myself I could no longer create beautiful spaces was like telling Taylor Swift she could no longer have music in her life. Okay I’m no Taylor Swift, but the point remains, interior design is something I was born to do, and telling myself I could no longer decorate was creating a second significant loss for me.
Seeing Erin’s beautiful home, made me realize the two could coexist. I could do everything I needed to do for my daughter and still create beautiful spaces. It sounds weird to say it now, but that is how I felt at the time. I felt like any efforts spent on decorating were selfish. But I needed that creativity in life to help the healing along. At some point I understood that denying my passion was not good for me or her. I needed to take care of myself. I needed an outlet so I could be a better mother to her.
The healing had begun. Elise was a beautiful baby and people began to notice how pretty she was. She was happy and got loads of love from us and the grandparents. Things began to feel a bit lighter.
I didn’t really ask God ‘why my child’ but that I wanted something good to come from our suffering. . I wanted God not to explain why, but to redeem the situation. I began to trust that He would use the pain for His good purposes.
I became a new parent contact for the Down Syndrome Association of Houston. I took the calls of new moms who had just found out that their babies had Down Syndrome. I congratulated them on their beautiful babies. (Often no one does.) I waited to see where they were, then came along beside them. If they laughed, I laughed with them. If they cried, I cried with them. And I told them how lovely their children were. (I still ADORE holding babies that have Down Syndrome and think they are ALL BEAUTIFUL.) And I told them, it was going to be okay, and I prayed that it would. I told them to love their babies and treat them like a ‘normal’ baby. I told them all the things I wanted to hear when my daughter was born. We discussed how they found out, and what their doctors said. The Down Syndrome Association of Houston even had at the time an initiative to train doctors on how to give the news in the best way possible. My doctor telling me there was something ‘abnormal’ about my baby is NOT how it should be done.
It didn’t happen overnight, but little by little, the heaviness eroded. I felt lighter, happier. God showed his love to me, in a small ways that only I would notice. I remember wanting some dessert stems that I could not find any where. We didn’t actually entertain at the time so why did I need these formal footed bowls? The answer is that I didn’t need them. It was just something I decided I would use and I wanted them. It was a little luxury I decided to allow myself. Ebay had not been founded yet, so they were difficult to find, and I didn’t have time to shop any way. I looked in a few stores, and didn’t find them. I gave up. I didn’t have time to scourer the city for them, especially for something so unimportant. Then when going for a walk on a brisk Fall Saturday morning a few weeks after I had given up, we stumbled upon a yard sale. You guessed it. They had my little footed stems for a dollar apiece. Was it an answer to prayer? Well not exactly. I didn’t pray for such small things. Still there they were. It felt like a heavenly hug, like God was saying, I’m here, and I still love you.
I began to meet many parents of children with special needs. My daughter began an early intervention program. Slowly the fog began to lift. I began to heal. I found a new purpose, not only loving my daughter, but being her advocate, and helping other parents of kids with special needs.
I began to see how these kids were treated and it was heart-breaking. I became very active at my daughter’s school. Before I avoided people who were hurting, because it was awkward and uncomfortable. Now I embraced them. I talked to people who were staring. I answered questions even if they were rude. I no longer felt like an outcast. I saw that my attitude toward my daughter set the tone for others. When I treated her like she was ‘normal’ others around her took my lead. When I showed that I was proud of her, others felt more comfortable around her. When I invited questions and talked about the Down Syndrome, the elephant in the room disappeared. She was accepted and we could all move on.
Slowly I began to feel strong again, only now my strength was different. I became compassionate, a champion for those on the fringes, someone who knew grief. The strange thing is it doesn’t matter why someone is grieving, I began to feel a connection with them on that shared experience alone. I understood that it is a road you must walk alone. I think the thing I understand now is that for someone who is grieving the best thing you can do is come along beside them and hug them physically, verbally and emotionally. They don’t need advice, or flowery words, they just need you.
Thank you for listening to my story. You are the reason I share these deeply personal stories. I have heard from so many parents and individuals that have endured so much. I can’t express what your support means to me. I hope this encourages someone who is hurting, that there is hope. And if you know of someone who is broken, I hope you reach out to them. Hugs to you!!
This has been such a touching story to read. You are so honest about your feelings and how they developed and changed. Your daughters are both beautiful and special! Thank you for sharing.
How lovingly you told your story..
Know you have a gift to bridge the
Gap …that takes courage…
Bless you all for loving each other
I honor you
My thoughts exactly Edy <3
We have been touched by the journey you have been on & the strength you have gained.
We have a grandson with PTSD & traumatic brain injury. We, as a family, have also been on a journey. We were scared, angry, & finally we gained understanding that it was a new world for us but one that still held joy. He is a new man but a gentle, loving man that we love deeply.
Anita, congratulations you have a beautiful daughter!
With my son who has disabilities , I prayed that God would make things ” ok”. To me, ok meant, surgery, medication, something that would make the disability go away. After more prayers and time, I had an ” aha” moment. Everything was already ” ok”. I just needed to follow God’s lead and everything would be, was, and is OK. My son is an amazing accomplished adult, with a disability. Keep telling your story so that all parents understand what “ok”, really does happen.
The first thing that struck me about all the photos of your girls was how much fun they were having and how much they seem to enjoy each other. The second thing was purely visual- they’re both beautiful! You have both a dark haired beauty and a blond one. I guess because they’re dresses alike, the beauty of that contrast struck me.
I work with learning disabled teens and the hardest, and most important part of my job is to teach them to focus on what they do well. Basically, to convince them that they’re not “broken” or “stupid.” That their value is not based on their abilities, and especially not on their dis-abilities.
Anita, thank you for sharing your story with us. I cannot say that I can relate to what you went through, and I do mean went through, not going through….but I could relate on the pain of not accepting the situation at hand, as hard as it can be. I have experienced a different kind of pain and my whole family was hurting because I tried to hide it and pretend everything was ok but in fact, it wasn’t, not by far. And only until I accepted the situation myself, me, the mom, then the rest of the family could heal including myself….it was ok to cry and to be sad in front of my family now… they could see the pain and we all could shared it and heal together. The first step, as you experienced it, was acceptance and then healing can begin. I am so happy you have two beautiful daughters that are your joys and they have a beautuful mother that loves them unconditionally. You are truly blessed.
Your daughters are so pretty…what a blessing from God! I love that you just stumbled upon the dessert dishes…I believe God loves us in many ways…once late on a Saturday I found a yard sale and found “church shoes” for my then 3 year old. Money was so tight and I had prayed for shoes for her for weeks since she has almost out-grown them…50
Cent shoes that were a gift from God! My whole life I have seen God bless me in always in ways I needed, sometimes in ways I wanted and even when life was impossible! Thank you for the beauty you bring to my life with the Facebook group, your blog, and your books/articles/writings…YOU are a blessing to so many!
Anita,
I love your story and you are an amazing woman. Your daughter is beautiful too. You have been truly blessed with your gift and to be able to help new families with the diagnosis handed to them. You have a great way to look at the positive side of everything. I truly hope many more people are inspired by you, I know I am.
God Bless you and your family,
Terri Stewart
Thank you for sharing your story!!
What lovely girls you have….and i am grateful God blessed you so you could bless others. Our daughter is expecting her third child, and we couldnt be more excited. that will make five lovely grandchildren to hugs and smother with kisses. God is good, and your story is proof of that. Thanks so much for sharing.
Thank you for sharing. Many of us have stories of deep hurts we’ve gone through. While we would all love to never go through them in the first place – I am so very thankful God will use them to help others if we allow Him to. You have allowed Him too and I have been blessed – thank you.
Thank you for letting me share your wonderful story. Your love for your lovely family shows in every word. God bless. Bobbi Wirt
I have never commented before. I’m truly touched by your honesty and graciousness in your writing about your life. It only goes to prove that when we see the surface of another human we should never judge. There always is a story. This blogging community is amazing.
Ali
Your daughters are so precious. The pictures are priceless. Pretty dresses and their smiles are adorable.
Thank you for sharing.
Patricia NC Coast)
Thank you for sharing the story of your beautiful daughter. I’m “only” a stepmom, so I can’t fully understand your feelings, although I love my stepsons dearly. However, I was disabled at age 19 and after a couple of years of depression realized that I was the one in charge. I could choose to be happy or not. I could choose to live a full life or I could sit at home. I have met many disabled people, adult & child, and the happiest are those that try to live life to the fullest. All of the Down’s syndrome children I have met are beautiful happy people! More opportunities are available today including college programs. I have been disabled 41 years now. I know I am a better person than I would have been otherwise. I hope both of your beautiful daughters never learn the words, “I can’t”. From a world traveler who happily plays harp & bowed psaltery and quilts one-handed.
What a touching story. As a grandmother of two beautiful autistic children, I understand your trials and triumphs.
I identified so much with your story. My husband has early onset dementia through a brain disorder called Frontotemperol Degeneration. He is 60, I am 54. A loss does give someone what Pauline Boss says, “a greater humanity,” if we accept and grow through the ambiguousness of it. She has written a book called Ambiguous Loss, which I highly recommend. I realize too, how much my empathy for others pain has grown and want so much to help when I can. I know very few people now who even know about his disease. Maybe someday I can help the way you have reached out to others. You are a gifted lady with a huge heart. Always LOVE your posts!
Both girls are beautiful and you can tell they love each other. Thank you so much for this beautiful journey – explaining everything about Down. You are truly a wonderful person to be helping other parents.
May God bless you, your husband and your beautiful girls.
Hugs,
Mary
I absolutely love the way God finds special and personal ways to bless us. Thank you for sharing your story.
Thank you for sharing your very beautiful and touching story. After reading Part 3 today, I somehow feel changed in a very positive way. I have been grieving the loss of my father for nearly 10 long months. Your words seemed to open my heart back up….and I thank you. God bless you and your beautiful family! Thanks also for your very inspiring work!
Oh that brings me such joy to know it has helped you Kimberly. Sending you a virtual hug.
I love your stories and your loving way of facing challenges. Your daughters are beautiful. You are so talented. I bought your book long before learning about your daughter and treasure it even more now.
God Bless your family.
I think I have just heard the sound of “fluttering angels” as I read your story. . . . .not easy to share, but such an encouragement to the reader, to one who is struggling to accept the “difficult blessing in disguise.” We are enriched by God’s meeting you in your pain and redeeming the ache of your heart. Blessings to you.
Thank you for sharing your story and I must say that both of your daughters are so adorable. I am a Grandmother and Gr. Grandmother so needless to say each and every child is a precious treasure no matter how they arrive into our families and each deserve a loving and special place in which to grow….you’ve provided that need so beautifully. Enjoy every moment and feel blessed to have two pair of sweet arms to hug you every day.♥
A beautifully told story – thank you for touching so many hearts.
Thank you for sharing your beautiful daughters and your story with us! I want to share a short story with you. Some years ago, a former coworker and I met up again when we transferred to a different city, and we became good friends. She single mother, raising her daughter, Brandi, about 8 at the time who had a chromosomal disorder with a missing chromosome. She was a bright, happy girl for the most part, loved music, dancing and singing. Her Mom was a hero to me, treating her daughter as any loving mother would. It came to be where I would take Brandi to church with me on Sunday mornings. Brandi stayed with me for the singing before going to her Sunday school class. And she sang away and raised up her arms and danced in the aisle. That little girl brought God into the services, and I felt that people left church those days knowing Him in a better way. I know that I became a better person when I was with her. When she came to visit she would clap her hands and say ‘Barbie’, lift and arm up and shout ‘Halleluiah!’ Brandi was not supposed to live a long life, but today she is in her 30’s living in a group home and I’m sure still spreading her joy. We may not know the why’s of what God sends us, but we do all have a purpose in our lives. Brandi’s is to share and spread God’s love for all of us.
Your daughters are just beautiful and together you all will bring love and joy to so many. God bless you and keep you.
Beautiful story…my baby sister has downs..she is 56. My brothers and sisters learned so much by having her in our lives…because of her, our family, our children and grandchildren have learned different is okay. She is the most loving person I know. My life is truely better because our mother did not take her doctors advise and put her in a state home…glad to see times are changing so that all children with disabilities are more accepted.
Thank you for sharing your story of your precious daughters.
I believe we are given the people in our lives for a reason; our parents, friends, mates and children. I’m glad yours have been a blessing to you!
Thank you so much for sharing your story, Anita. Having been called to experience grief myself, I especially liked when you said it was important to give physical, emotional and spiritual hugs to those who are hurting. The closest we can get to being wrapped in the arms of our Savior, is being hugged by those who care for us.
Beautiful…told only by a Mother who has touched everyone with her decorating ideas, and now sharing her family.
I feel blessed to read this each week.?
Your girls are beautiful. My grandaughter is non-verbal autistic, I tell my daughter that God only blesses special people with a special needs child. I hope your story will remind people that until you walk in another persons shoes, dont judge. People can be very rude. God Bless.
Thank you for sharing your story about beautiful Elisie. Your story is touching and inspirational. Blessing to your family…
I’m glad you found a way to heal. I’m also glad you learned we must care for ourselves in the midst of life’s realities. Your daughter is beautiful. I’ve always thought Downs Syndrome children were special and beautiful. I’m also glad you have a faith. God truly is what anchors us in the life we live on earth.
Thank you for sharing how you grew and learned from your dear daughter.
I appreciate you sharing the long and winding way..
I admire your strength. You came through the darkness and into the light. And you have made a wonderful life.
Anita, thank you for sharing such an incredible story. You did good work for God by getting involved with the Houston DS Association. Just think how many readers you have helped by writing your story. Down Syndrome children and adults are very special. They have a genuine love and innocence that seems God sent. They humble me. I am sorry you had such a rough beginning but you have grown way beyond the hardest of times to helping others. Both daughters are beautiful and seem to really love each other. My younger brother was born in late fifties extremely premature. He suffered neurological damage.
I laughed when I read how the ” Mama Bear” came out in you once. I ,too, defended my little brother against mean little boys. I was only 7 & quite the tomboy and actually punched one little boy! LOL. My brother grew into adulthood, married, had a family & always worked.
Again, thank you for sharing. You did an amazing job sharing this personal story. Hugs.
Thank you for opening your heart and sharing your story with such grace and love.
It is so easy to ask, “Why me….why my child?” but God in His infinite wisdom knows who is strong enough to raise a special needs child. No doubt, He looked into your heart and just knew you and your husband were ones who could. Never give up the faith. I am reminded of a very old hymn, “Sweet hour of prayer, sweet hour of pray that calls me from a world of care, and bids me at my Father’s throne, make all my wants and wishes known. In seasons of distress and grief, my soul has often found relief. And oft escaped the tempter’s snare, by thy return, sweet hour of prayer”. When discouragement or doubt arises it’s ugly head, remember to pray. He is faithful, my friend.
Not commenting to win anything, just wanted to say how inspiring your story is and to thank you for sharing. It always helps to see how others handle difficult situations and you are an excellent example.
Again, thanks for sharing.
Your opening up in such a personal way has given such encouragement to me. I commented before, but wanted to respond to part 111. The training that Drs were given in delivery if the news should be part of their medical training! Their response to my husband and I was ” we offered you a test”. Closed the curtains , door and walked out! The proper response would have meant so much!
Your story feels like a VERY belated hug. Thank you tremendously for sharing your experiences in such a personal way!
Thank you.
I had two healthy sons so i don’t know how you felt but i do know it is a privilege to know you. Thank you for sharing this experience with me, i was very touched and think both your girls lovely.
Anita, I just read your entire story with tears in my eyes. Elise is beautiful, both of your girls are. I`m so happy she survived the heart surgery and got off the feeding tube and she has a much better quality of life. You and your husband went through so much and I truly feel for you both that you had to go through such a hard time. People can be so rude and callous, although sometimes it`s out of ignorance and not cruelty, and it`s too bad you had to put up with so much of that behaviour , especially from people in the medical community. It`s so wonderful that you are there for new parents of Down Syndrome children to help them get through the stressful time that you and your husband had to navigate on your own. Best wishes to all of your family.
I slowly read your life chapters with great interest,because it was so very evident from the first posting that you were emptying your heart on paper. I truly believe that nothing happens in this life by chance if we are Christians and called according to God’s purpose.
The Lord took your talent and love of beautiful things and transitioned it from objects to people.
You previously had taken objects and created beautiful spaces. Now you are taking broken pieces of people’s lives and from your experiences and love for others who are hurting,you are helping them put the pieces back together to form beautiful lives.
What a precious testimony of faith,love,and service you have shared with us!
May the Lord bless you,your precious,beautiful daughters,and the ministry of hope and healing you have begun.
Thank you for continuing the story of your beautiful girl. It really hurt my heart when you said no one congratulated you on your beautiful baby…I wonder if I have ever been guilty of this…if so may God forgive me.
Anita, Thank you for sharing Elise with us. As hard as it was and maybe still is at times, just think – not only how much God loves you, your husband and Elise but how much more you love, not only your daughter but other mama’s and their babies. As you know, both of your daughters are beautiful. You are beautiful – the more you grow in Jesus the more beautiful you are to all those you come in contact with. Thank you for the reminder of how we can care for and love those who have children who need a little more attention.
Anita, thank you for sharing your story. It truely touched my heart. I had a son that passed away shortly after he was born 22 years ago. He was born with more than one disability, and his lungs didn’t develop very well. The first year was the hardest. Your daughter is such a beautiful girl, and you’re a beautiful person for being a loving mother to her. God bless you Anita and your sweet daughter. I have never commented before, but your story was so inspiring. Take care.
Thank you for sharing so openly…..I lost a son at 5 months from SIDS almost 30 yrs ago. The hole is still there.
I’m so sorry for your loss. I know it never goes away.
Isn’t it amazing how putting your words on paper makes aspects of your life come together.
I was looking forward to reading part 3 today. You didn’t disappoint. ‘
Congrats on your beautiful babies. (they’ll always be your babies). The pictures were a lovely addition.
Please write more about your beautiful girls in the future.
Nancy
Thank goodness the worlds attitude has changed towards Down Syndrome babies, I too admire how beautiful they are, their striking laughing eyes, who could not fall in love. These babies like all are a gift from god.
What precious daughters both are!
Thank you for sharing your story!! I used to substitute teach and my favorite classrooms were the special ones!!! My favorite students were the ones with Downs. I now work as secretary in a middle school. I don’t come in contact with our special kids very often, but when I do they are soooo precious!! They brighten my days!!
Anita, l’m so sorry for all the heartless, ignorant, comments, and stares you received after having your beautiful daughter. Ugh, it makes my heart hurt for your pain, and it’s a good thing l wasn’t around with you when it was happening because l wouldn’t have been as gracious as your darling’s Grandfather. I would have lambasted those wretched bores!
Thank you for Sharing. Hugs and God Bless!
You have told your daughter’s story so well. Your love for her and God’s love for you shines through it all.
Thank you for sharing your story and pictures of your beautiful daughters! Very touching and courageous.
Again, you are a beautiful lady with a beautiful family. Thank you for sharing.
Blessings
Anita,
Thanks for sharing your story…the girls are beautiful!!! Their dresses were gorgeous, in all pictures! I commend you for your big heart, becoming an advocate for DS, and helping the other parents.
And congrats on finding those little footed stems:)
I hope you will continue to write about your daughters, I throughly enjoyed the read!
Susie
Blessings come in small packages, Beautiful girls.
You have a beautiful daughter. Thank you for sharing with such honesty and candor. I have always believed these children are God’s little angels.
Thank you for sharing your beautiful story. I found my self looking forward to more of your story. You have a beautiful family.
Sharing your story in such an open and giving way… and with such love makes me respect and admire you even more Anita… you truly are such an inspiration to all women!
Thank you for bring you.
Victoria
Wow this has been one amazing heart warming story….I have to say your baby is beautiful thanks so much for sharing your heart felt journey with us all…I hint your an amazing and caring person..may God bless you and your Family…
Xo~
Maritza
Thank you for sharing this with all of us Anita. I loved your comment about not wanting God to explaid but to redeem . That is beautiful! As I said again, YOU are quite the woman!!
xo Kathysue
Again thank you for sharing from your heart. You have given us excellent advice on how to react to parents going through the same situation.
Thank you so much for your honesty and frankness. You have two beautiful and loving daughters. Congratulations!
Anita – I am sure you have blessed countless mothers of children with health challenges. You have shared such courage, love, understanding, compassion, etc. that it is contagious. Thanks for the generosity of your spirit!
Thank you for sharing your story. You have a beautiful family, and your family has a beautiful Mom!!
I am rather new to your blog and was blessed to hear your sharing from your heart and to see both of your beautiful daughters’ pictures! We previously lived in Dacula, Georgia where the public high school voted two beautiful, Down syndrome students as King and queen of homecoming. It was a touching, encouraging story of these teens who were beautiful inside and out and what a blessing they were to others. I’m sorry I can’t recall which newspaper carried the article. May God continue to guide you in your life.
Life is indeed a journey and I believe that things happen for a reason. You have probably been a vital lifeline for so many people who desperately needed it at the time. We are all a culmination of our life’s experiences and we all grow in different ways. You have 2 beautiful daughters and they both have a wonderful mom who is true to herself and her family. Bravo, Anita 🙂
Bravo Anita, for raising such beautiful girls, for helping others who learn that their children are all Children of God, and for telling your story. Heartwarming indeed!
thank you so much for the reminder to reach out. we all have a moment when someone reaching out to us is just the thing we need…
Thank you for sharing with us your beautiful story, you are a remarkable women. You have been through so much and it has transformed not only your life but so many others just from hearing it. Your daughters are so beautiful and lucky to have a Mom like you.
Wow what a story. Thanks for sharing. So heartfelt and warm.
Anita, I just wish I lived closer to you and could get together for a chat over a cup of coffee! Since, this is not possible, I’m sending you a big hug.
How I enjoyed reading about your journey with your precious Elise. Thanks, so much, for sharing your heart with us. You and your dear hubby have been through so much. God knows all about this and the struggles that you face and He will continue to love and care for you in a way that only He can! Just keep looking up to Him!
I am a retired nurse and worked with precious older people — many who would never come out of hospital. During this time, I saw my share of Doctors who just seemed to have no “bedside manner”. It always bothered me to see this. I always tried to be there for the family during those difficult times. God always gave me the right words to express my thoughts — and I thank Him for this. People need someone to just come along side of them with a kind word, hug or a smile at these difficult times.
It is so wonderful that you are involved with the Down Syndrome organization. You have so much to offer these dear families who have just learned about their precious child. They all need you, Anita! They are so fortunate to have you working with them. May God Bless you and continue to make you a blessing to all those families that you see. He will give you the strength you need to meet each new day!
Again, Anita, thanks so much for sharing your difficult journey with us. I always look forward to your posts!
That picture of your two precious girls at the “Teddy Bear Tea Party” is so beautiful! Your girls are precious — and so pretty. Hope you can frame this picture for your Dining Room!
Bless you and your hubby, Anita — and those two beautiful gals!
I so enjoyed your at on you’re beautiful daughter. I also have special needs daughter who has grown into a strong, confident women. She has cerebral palsy and a quadriplegic and I am so proud of what she has become with all of obstacles in her life.
Ellen Guyer
Thank you for your beautiful story. I am the mother of a 35 year old son who has cerebral palsy and has been diagnosed as being on the autism spectrum. He is a very articulate young man, with two masters degrees. It amazes me everyday the discrimination handicapped people go through. Our country talks a lot about discrimination, but they don’t realize the pain the handicap go through. We need to continue to educate people about handicaps and telling stories is a very positive and loving way to do this. Thank you for that.
God Bless you and your beautiful family! Thank you for your advocacy. Your strength has and will continue to help others! 🙂
I wept reading your story and your love of God …your faith. Powerful testimony. Yes, God is using you and I pray your heart is filled with joy again. Blessed to know you, if even from afar in a blog.
hugs,
God knew you would be an awesome mother to Elise❤️❤️. Now you also are an inspiration to others, he saw how good you would be with that job too….?
I have enjoyed your story. You daughters are both beautiful! Thank you so much for sharing.
You are amazing, Anita! And both of your daughters are beautiful. I so enjoyed their photos. XO
Interestingly, I have a daughter whose name is Elise. She is my oldest child. She is beautiful. She also carries the special needs label of autism..
Anita your story is inspiring. See my world was shattered almost four years ago. My first grandchild, a boy was born with MECP2. It’s a very rare genetic disorder. We were told he would never walk or talk, in fact we were told by the specialist lots of negative things. But I serve the God who created the DNA that was askew in my grandson. Yes I was angry at first and very very upset. My heart was broken for my son & his wife and for myself and the plans I had for this child. They were fairly young parents but it’s amazing how they’ve loved & cared for this precious child.
Today my grandson can sit up by himself (he couldn’t hold his head up till he was over a year old) and hold his sippy cup. He works very hard in therapy and one day God willing he will walk. But if he don’t it’s ok. He has the sweetest most loving personality, he just melts grandma’s heart. He can say ‘ma-ma’ and ‘da-da’ and something that sounds like ‘gamma’. We think he’s calling me that. It’s amazing he an say those things.
Sometimes I still get down, when I think of what his future holds but God is already there working it out. I just have to wait on Him. Thank you for sharing your story and helping us to see theirs always hope. Please remember my grandson Lane in your prayers.
God has given you another gift beyond your family, your two beautiful daughters: an absolutely beautiful talent ~ that of writing. You express yourself so well, and with such openness, inviting us to know your innermost feelings, your fears. And in this way, God has used you to lead others.
By sharing the pain ~ and the happiness ~ along your road w/Elise, this child who is such a Blessing from God, you are helping us, and many other parents with a special child, to accept as well.
May God continue to Bless you all, Anita …
Thank you for sharing such a personal and heartwarming story, Maybe you should consider making a book from your story and having it published. I am sure it would be comforting to other parents with down syndrome babies.
What a beautiful story. I feel so much love for you and your family. I’m so glad you are out there to teach the adults in this world how to grow respectfully in their own actions. It still amazes me how even the most intelligent of people can be so lost when facing a disability. You are one of God’s soldiers! I thank HIM every day for people like you!! Your daughters are beautiful and so are you.
Thank you for sharing. Go Bless!
Oops! I mean God Bless!! 😉
Anita: What a beautiful person you are inside and out. Thank you for letting God use you and for sharing your story with us, bringing us all great encouragement. I am cheering you on, girl!! Whoo Hoo!!
What a beautiful story and two beautiful girls! My favorite picture is in the garden watering the flower. You are truly blessed.
Again, thank you for sharing. You are so right, we all have to go thru the pain on our own. We all grieve differently. I didn’t need advice when I lost my son, I needed someone to listen, hug me, cry with me, laugh with me…. Listen to me. It’s been 14 years. I remember it like it was yesterday. God has used our pain and we’ve been able to encourage others who’ve lost children. I’m thankful He’s using you so beautifully and lovingly. Your pictures tell a story of a thousand words.
Your daughers are beautiful. Appreciate you sharing such a personal story, but hope that others may draw strength and comfort for your positive attitude. May God continue to bless you and your family.
Thank you so much for sharing your story – it has been heartbreaking, but then uplifting and inspiring! I hope that this will help other people who are in a similar situation to yours. Anita, you are one very special lady! Sending hugs, Gilly xxx (from Cornwall)
Both of your daughters are beautiful! As stated above, it’s apparent the love they share for each other through their smiling faces in the pictures. I wonder if writing this story was difficult for you, forcing you to relive a difficult time but also being therapeutic. I also believe there are guardian angels among us, in all forms of everyday life. God bless you and your beautiful family. Thank you for sharing this story. We never know what another person has experienced in their life.
I read your blog everytime it hits my emails and enjoy everyone of them. But I have never told you that. Today I am doing that. I also want to thank you for your very personal story. There are many of us who are hurting for one reason or another…me…well, my Mom passed away a couple of months ago….and I am struggling….and feel alone. Your openess makes me feel less lonely. I guess I just want you to know that you touched and helped me. And touching someone’s life is HUGE! Thank you. Your daughters are beautiful and obviously loved!
Oh Sharon, sending you a hug over the internet. I am so glad that I was able to help in a small way. I hope you feel alone any more.
I have followed your story from start to finish. Thank you, Anita.
See? I am a stranger but I feel like I know you now 🙂
PS: I went out and bought the magazine to find out more about you and your lovely home. It’s exciting to watch the Lord pour out His Favor upon you.
I’d love to hear more about her life. Have a great week.
Such a beautiful story. Thanks so much for being vulnerable and sharing your heart. Since you have “walked the walk”, I know you are a great comfort to other parents. Your daughter truly is beautiful!
Thank you again for sharing your life’s journey, even through all the heartache and pain, God still has had a greater plan! Healing, wholeness and continuing your gifts and talents as you’ve watched your beautiful girls grow and mature into who they’re meant to be as well.
Blessings,
Charlene
Thank you once again for sharing your journey!!!!! You truly are an inspiration to so many!!!!! All I can say is those little girls could not have been more blessed having you as their mother!!!!! Blessings to you!!!! ♡
Thank you for sharing your heart. You have two beautiful daughters. Many will benefit from your sharing in one way or another. God Bless you and your family. You are such an inspiration to everyone.
Thank you for sharing your story. Your daughters are lovely. I bet they are a joy to be around. I’m sure your strength encourages others to appreciate God’s gifts and know that He is with you always.
I am always so humbled how God shows up in small and big ways in spite of ourselves. He is good to give us Grace beyond what we could ever deserve. Thank you for sharing your heart and your story of your beautiful little girl.
Thank you for sharing what I am sure must have been very difficult to put into words. Very touching and inspirational.
Thank you for sharing this series and giving us a glimpse inside your life Anita. You’ve offered great insight into what a parent of a Down’s Syndrome or any special needs child feels. There is a time to mourn isn’t there, but a mom also wants to hear others say that her child is beautiful and that everything will be okay. I too think that all Down’s children are beautiful and I love their freedom to express joy without hindrance. God bless your sweet family.
Patti
Thank you again for sharing! You’re truly a blessing to your daughters and others! It’s beautiful that you have taken your story and journey to help others on their journey!
God bless you!
”In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans.” Romans 8:26
I so admire you!!
I wish I could reach through this screen and hug you. What a beautiful, touching journey. My BFF has a 32 yr. old son with DS (her first child, too). I can’t understand on a personal level how this truly impacts a family but I have been blessed to witness God’s amazing hand on the life of this precious young man and this family. God is good. ALL the time.
I would not even presume to imagine how your life has been. My prayer for you is that you receive all the love that you have poured into your beautiful and precious daughters many times over. My children and grandchildren have become my dearest and sweetest friends. I admire that you love your girls fiercely, and place such a high premium on their well being. May God richly bless you for your faithfulness. As a grandmother to six as well as having three foster grands, I have learned the intrinsic value of each life, made in the image and likeness of God. Psalm 139.
Thank you for your story and your transparency. Each story is unique. I have found the doctor and the medical staff play a big part in those initial days of birth. My son is 32 and has Down Syndrome and Autism. I would love to hear how your daughter is doing now, if you care to share it. God bless you.
Oh my gosh. What a story Anita, and you told it beautifully. For many years I had the great good fortune to work with children and adults with special needs. Watching them grow and develop and supporting their learning was a joy for me. Your daughter is beautiful, and she is lucky to have you for her Mom. Your story fills my heart with love and peace. Thanks for sharing.
Oh dear Anita, how my heart was beating at every word that I read. Your story touched me and you’ve been on my mind so much since I finished ready your heartfelt story. You are such a strong and remarkable lady! I can feel how blessed your two daughters are to have you as their mom. God blessed them. They are precious little girls and I’m sure beautiful inside and out, like you. All of have done in your life is such an inspiration and I’m in awe of all you do.
God bless you and your sweet and precious family.
We have two special needs grandchildren so your story resonates with me. I’m so glad you have healed so that you can share your story with us. It is inspirational and helps me in my own journey.
Thank you for sharing your story! Your daughter (both) are very beautiful and you give us courage and strength when you share with us! I wish we could live in a world where everyone could be accepted but until then we have people like you to open our eyes and help us along the way! Thank you. Love the beautiful pictures of your daughters, you are very talented!
Thank you for sharing your personal story, it was very inspirational. I have a 17 year old grand daughter with high functioning aspergers. I truly understand the challenges of a special needs child. Even tho we have days that are overwhelming she has enriched our lives in so many positive ways.
I stumbled on to this blog and loved the story. What a blessing when the Lord places a child with special needs into the hands of parents. Although, we do not see or sense them at the time, the blessings are all around us and continue to flow through the little things that bring such joy to one’s heart. What a reminder that the simple things add up and mean so very much to those with special needs. Thank you again and I look forward to reading your blog more often.
I don’t usually comment on blogs. Ever. I just wanted to say…. Congratulations on your baby daughter. She is absolutely beautiful.
Thanks Summer.
Your girls are beautiful! Thanks so much for sharing your story. May God bless you & your family!
Your story is so familiar. My oldest daughter was also born with DS and her middle name is Elise. The hardest thing for me was having people say I’m sorry. I found it very offensive and inappropriate though I knew they did not know what to say. Some of the best advice I received was from a nicu dr who was caring for her when he told me she was a baby first and foremost and that’s what I needed to remember. I have. She is 12 now and most of my fears have gone away and she lives a very happy life with her three sisters and us parents. Thank you for sharing your story.
Excellent advice, and that’s what the neonatologist told me too.
God Bless you and your family. Your story is so touching and honest. You have two beautiful daughters.