January is EA/TEF Awareness Month.Therefore, each Tuesday post at DifferentDream.com in January is dedicated to raising awareness of the birth anomaly that affects our first child and approximately 1 in every 4000 babies born.
10 Reasons to Mark EA/TEF Awareness Month in January
Last week’s Tuesday post listed 10 reasons to mark EA/TEF Awareness Month. Many of you listed your children (and some EA/TEF survivors listed themselves) as more reasons to mark the month. Thank you so much for sharing your stories and reminding all of us that the EA/TEF family is wide and deep.
EA TEF Awareness Is Why I Write
This week’s post gets up close and personal. (Anybody else out there old enough to remember that slogan from the news coverage from the Winter Olympics way back when?) It’s a piece I wrote in December for a guest post for an author friend of mine, Melissa Tagg, an up and coming fiction writer who is on the verge of publication. (When you read her first book, remember you heard about her at DifferentDream.com first!) She asked me to blog about how my past experiences influence my writing. The resulting post, altered slightly, is a perfect fit for EA TEF Awareness Month. See what you think.
Helping Faith Take Root
My husband came home from work a few weeks before Christmas with good news and bad news. The good news was that a co-worker had just become a grandfather. The bad news was that the newborn boy had a heart anomaly and wasn’t doing well.
“Can I give the family copies of your books?” my husband asked.
Now, you would think my answer must have been an immediate yes. But it wasn’t. I didn’t say a thing because I was busy thinking, “I have given so many books away already. Will anybody ever buy them? Will my writing income ever be greater than the expenses?”
A shocking internal reaction, don’t you think?
Thankfully, dollar signs didn’t hold my thoughts hostage for long. I remembered our son’s first December. Allen was seven months old by then and had endured two Lifeflight helicopter rides, two major surgeries, three hospitalizations, and dozens of medical tests and treatments to correct a type C EA/TEF. He’d recently transitioned from tube feeding to using a bottle to take in the breast milk I pumped for him four times a day. My husband and I were exhausted by lack of sleep, constant worry, and frequent trips to the hospital, a 240 mile round trip from the remote South Dakota town where we lived.
What kept us going?
The encouragement of friends and neighbors in the tiny town where we lived. While Allen was hospitalized for three weeks after his birth, they cleaned our house, cared for our garden, and sent notes. Once we brought Allen home, a pastor and his wife came every week to do a Bible study with us and answer our questions about why a loving God would allow a little baby to endure so much. A local fundraiser in November netted over $1500.
For a town with a population of 92 in a county of about 1500, it was big money!
As Christmas drew closer, the familiar story of a baby in a manger held new meaning to me. For the first time, as the parent of a precious child who had experienced great pain, I understood the magnitude of God’s gift to mankind. He sent his Son to a world stained by sin and evil, even though he knew the pain Jesus our Savior would bear. What joy to be loved by a God willing to sacrifice so much to save us from our sin.
My faith and gratitude grew deep roots that Christmas.
Roots that waited more than two decades to bear fruit. The fruit took the form of two books full of resources and encouragement and answers for parents facing the same exhaustion and doubts we once did. Two books for families like the man who works with my husband.
“Of course,” I said. “Take both books to them.”
The little baby had surgery a few days after that. Today we received word that he’s not getting better. The family is stricken, not up to reading anything. But one day they will start looking for encouragement. One day they will ask hard questions. Depending on the answers they find, their faith will either shrivel and die or take root and grow.
I’m praying that these books will help their roots to grow.
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Shana,
First of all, congratulations on the birth of your little boy. From all you’ve said, he is a fighter. To answer your questions, I don’t have feedback for you as my experience is way out of date. But, have you posted your questions on one of the TEF Facebook pages? Many of those parents are right where you are and may have something to say. Try Bridging the Gap at https://www.facebook.com/groups/157730937619916/ or Kids Born with EA/TEF: https://www.facebook.com/groups/192029334173118/. If you need more assistance, please fill out the form on the “Contact Me” page of this website, and I’ll get back to you.
Jolene
Shana,
First of all, congratulations on the birth of your little boy. From all you’ve said, he is a fighter. To answer your questions, I don’t have feedback for you as my experience is way out of date. But, have you posted your questions on one of the TEF Facebook pages? Many of those parents are right where you are and may have something to say. Try Bridging the Gap at https://www.facebook.com/groups/157730937619916/ or Kids Born with EA/TEF: https://www.facebook.com/groups/192029334173118/. If you need more assistance, please fill out the form on the “Contact Me” page of this website, and I’ll get back to you.
Jolene
I have a sweet baby boy that was born 02-08-2012 with Type A isolated long gap EA. He was born 39 weeks gestation and weighed 2.96 (6lb 7oz.) at birth. He has had 3 surgeries so far over the course of 2.5 months. He has been repaired. He is currently recovering to this day in the NICU. He has developed aspirate pneumonia, has fevers, has acid reflux, and is currently being treated for all of this. He is on G-tube feeds. I have tried to nurse him, he latches on and sucks but does not swallow..same goes for bottle. He is currently being seen by speech and occupational therapist. We are all praying that he will learn to suck, swallow, and breathe so he can feed orally. Is anyone here familiar with long gap EA? Any feedback?
I have a sweet baby boy that was born 02-08-2012 with Type A isolated long gap EA. He was born 39 weeks gestation and weighed 2.96 (6lb 7oz.) at birth. He has had 3 surgeries so far over the course of 2.5 months. He has been repaired. He is currently recovering to this day in the NICU. He has developed aspirate pneumonia, has fevers, has acid reflux, and is currently being treated for all of this. He is on G-tube feeds. I have tried to nurse him, he latches on and sucks but does not swallow..same goes for bottle. He is currently being seen by speech and occupational therapist. We are all praying that he will learn to suck, swallow, and breathe so he can feed orally. Is anyone here familiar with long gap EA? Any feedback?
Welcome to DifferentDream.com, Sarah and Toby. He sounds like quite the boy. I remember our son at about age 4 giving a similar explanation to a shoe salesman. The guy looked at me like, “How come this little kid can pronounce ‘esophagus’ correctly?” The memory still makes me smile.
Jolene
Welcome to DifferentDream.com, Sarah and Toby. He sounds like quite the boy. I remember our son at about age 4 giving a similar explanation to a shoe salesman. The guy looked at me like, “How come this little kid can pronounce ‘esophagus’ correctly?” The memory still makes me smile.
Jolene
Another TOF mummy here . We too are in a bubble of life , totally unexpected and I do find myself amazed sometimes at the journey we have been on. At other times I want to burst the bubble and get out!
Our little TOF is our world and I am so proud of all he has achieved. Only yesterday on the way to a hospital appointment Toby was telling the taxi driver all about his oesophagus and how it works. Not bad for a five year old . Not what I had planned 6 1/2 years ago but a miracle none the less!
Another TOF mummy here . We too are in a bubble of life , totally unexpected and I do find myself amazed sometimes at the journey we have been on. At other times I want to burst the bubble and get out!
Our little TOF is our world and I am so proud of all he has achieved. Only yesterday on the way to a hospital appointment Toby was telling the taxi driver all about his oesophagus and how it works. Not bad for a five year old . Not what I had planned 6 1/2 years ago but a miracle none the less!
Amy,
Thank you for sharing your story. We were given much the same advice when our son was dismissed from NICU in 1982. Four years, seven surgeries, and hundreds of procedures later, his problems were fixed. But it sounds like your daughter’s outcome hasn’t been quite so rosy. She is blessed to have you as her family now. As hard as it is for you, it must be doubly hard for her to not be able to trust her body to complete a function as basic as eating.
Are you in a support group?
Jolene
Amy,
Thank you for sharing your story. We were given much the same advice when our son was dismissed from NICU in 1982. Four years, seven surgeries, and hundreds of procedures later, his problems were fixed. But it sounds like your daughter’s outcome hasn’t been quite so rosy. She is blessed to have you as her family now. As hard as it is for you, it must be doubly hard for her to not be able to trust her body to complete a function as basic as eating.
Are you in a support group?
Jolene
oh I forgot to say we adopted and her 4 year old sister when she was 18 months old.
oh I forgot to say we adopted and her 4 year old sister when she was 18 months old.
We got a small little 3Lb 10oz baby girl placed as a foster child with us. They told us she was born with EA/TEF we had no idea what that was but were told by her doctors that she would be fine and out grow all her health problems by the time she was 1. When she turn one and was still in the hospital a lot then they told us by the time she is 2 and then it was 3. They stopped telling us that and after she had 15 surgeries in 18 month. When she was 7-8 they found out when she was about that she has no motility in her esophagus and has to count 100% on fluid and gravity to get things down her esophagus. They have told us many times now that this can not be fixed. She aspirates a lot because of this as well. She will be 11 in a little over a month and we are now told. We have a chronically ill, complicated child as the doctors put it. Answers are not always easy to find in her case, she will be having Surgery again on Jan 26th because she has been having a lot of pain in her ribs,lungs and back. she has been throwing up when ever she tries to eat by moth and has had some blood coming form her GJ tube site. She has been in the hospital hundreds of times..
We got a small little 3Lb 10oz baby girl placed as a foster child with us. They told us she was born with EA/TEF we had no idea what that was but were told by her doctors that she would be fine and out grow all her health problems by the time she was 1. When she turn one and was still in the hospital a lot then they told us by the time she is 2 and then it was 3. They stopped telling us that and after she had 15 surgeries in 18 month. When she was 7-8 they found out when she was about that she has no motility in her esophagus and has to count 100% on fluid and gravity to get things down her esophagus. They have told us many times now that this can not be fixed. She aspirates a lot because of this as well. She will be 11 in a little over a month and we are now told. We have a chronically ill, complicated child as the doctors put it. Answers are not always easy to find in her case, she will be having Surgery again on Jan 26th because she has been having a lot of pain in her ribs,lungs and back. she has been throwing up when ever she tries to eat by moth and has had some blood coming form her GJ tube site. She has been in the hospital hundreds of times..
Hi Emilie,
Thank you for the update on your little guy and for the information about how the docs came to suspect EA/TEF. Very interesting. We had to do baby CPR on our little guy once. SO SCARY! Hang in there…someday he’ll be all grown up, you’ll be even more proud of him than you are now, and you’ll look at life with gratitude and wonder that can only grow from the experiences you’re having now.
Jolene
Hi Emilie,
Thank you for the update on your little guy and for the information about how the docs came to suspect EA/TEF. Very interesting. We had to do baby CPR on our little guy once. SO SCARY! Hang in there…someday he’ll be all grown up, you’ll be even more proud of him than you are now, and you’ll look at life with gratitude and wonder that can only grow from the experiences you’re having now.
Jolene
He is doing okay. I’ve had to do CPR three times on him and pray that he will never have another dying spell. There are daily battles and right now he is having a tough time with his Reflux meds, sleeping, and of course – teething. He is doing so well in other areas though…he is starting to sit unassisted, starting to scoot on his tummy a little bit, babbling…all the fun “typical” baby things you get to experience when you are a parent.
(At my 20 week ultrasound, there were soft markers for downs syndrome, so the perinatal doctors wanted to see me every 4 weeks) At 24 weeks, they didn’t see a stomach and after looking at my amniotic fluid levels, they suspected EA/TEF. I had another ultrasound at 26 weeks and still no stomach and by this point I had so much fluid I was encroaching on the danger zone. I had to have a therapeutic amniocentisis at 29 weeks and another at 33 weeks. Both times I went into pre-mature labor. At 35 weeks, I went into labor on my own and they delivered our beautiful baby boy.
He is doing okay. I’ve had to do CPR three times on him and pray that he will never have another dying spell. There are daily battles and right now he is having a tough time with his Reflux meds, sleeping, and of course – teething. He is doing so well in other areas though…he is starting to sit unassisted, starting to scoot on his tummy a little bit, babbling…all the fun “typical” baby things you get to experience when you are a parent.
(At my 20 week ultrasound, there were soft markers for downs syndrome, so the perinatal doctors wanted to see me every 4 weeks) At 24 weeks, they didn’t see a stomach and after looking at my amniotic fluid levels, they suspected EA/TEF. I had another ultrasound at 26 weeks and still no stomach and by this point I had so much fluid I was encroaching on the danger zone. I had to have a therapeutic amniocentisis at 29 weeks and another at 33 weeks. Both times I went into pre-mature labor. At 35 weeks, I went into labor on my own and they delivered our beautiful baby boy.
Hi Emilie,
Hope is so important. How is your son doing now? And how what made the docs suspect EA/TEF at 24 weeks?
Jolene
Hi Emilie,
Hope is so important. How is your son doing now? And how what made the docs suspect EA/TEF at 24 weeks?
Jolene
When we found out at 24 weeks that our son likely had EA/TEF, all I could think of is…maybe they are wrong. Hope had already become my mantra (at 5 weeks, I was told I would miscarry and hoped the doctor’s were wrong) and I clung to the Hope they would be wrong. We visited NICU, the Neonatologists, the Pediatric Surgeon; all the time…I had Hope. When our son was born, I clung to a new Hope…that he would survive his surgeries and setback and come home from NICU. Since then, Hope is constant in my soul; God blessed us with a wonderful son and although life is now forever changed for our whole family – I know God always had our son in mind for us.
When we found out at 24 weeks that our son likely had EA/TEF, all I could think of is…maybe they are wrong. Hope had already become my mantra (at 5 weeks, I was told I would miscarry and hoped the doctor’s were wrong) and I clung to the Hope they would be wrong. We visited NICU, the Neonatologists, the Pediatric Surgeon; all the time…I had Hope. When our son was born, I clung to a new Hope…that he would survive his surgeries and setback and come home from NICU. Since then, Hope is constant in my soul; God blessed us with a wonderful son and although life is now forever changed for our whole family – I know God always had our son in mind for us.
Amy,
What a wonderful attitude to have. How I wish I’d been as wise 29 years ago!
Jolene
Amy,
What a wonderful attitude to have. How I wish I’d been as wise 29 years ago!
Jolene
Well Alisha, you’re in the drawing now. We’ll see what happens!
Jolene
Well Alisha, you’re in the drawing now. We’ll see what happens!
Jolene
I would love to win a book. 🙂
I would love to win a book. 🙂
Enriched my life in more ways than one. And instead of wondering why me feeling chosen for a truly awesome job
Enriched my life in more ways than one. And instead of wondering why me feeling chosen for a truly awesome job
Becky,
Oh, do I hear you. I worked so hard a year and a half ago not to cry when our TEF bpy watched his bride come down the aisle. He gets exasperated when I go all teary. But there are times when the smallest things bring tears – not from sadness, but from joy and gratitude that these things have come to pass.
Jolene
Becky,
Oh, do I hear you. I worked so hard a year and a half ago not to cry when our TEF bpy watched his bride come down the aisle. He gets exasperated when I go all teary. But there are times when the smallest things bring tears – not from sadness, but from joy and gratitude that these things have come to pass.
Jolene
Well put, Diana.
Increased gratitude for what we normally take for granted and a sense of being on the way toward greater faith are soooo important.
Jolene
Well put, Diana.
Increased gratitude for what we normally take for granted and a sense of being on the way toward greater faith are soooo important.
Jolene
Katie,
Exhaustion is the right word. We were exhausted for 4 years after Allen was born. Our daughter is 6 years younger than him for a reason! We needed time to recover and build our faith, too.
Jolene
Katie,
Exhaustion is the right word. We were exhausted for 4 years after Allen was born. Our daughter is 6 years younger than him for a reason! We needed time to recover and build our faith, too.
Jolene
Hi Valera,
Your spiritual journey sounds similar to mine after our son was born. To this day, God amazes me by revealing more of himself through our parenting journey.
Jolene
Hi Valera,
Your spiritual journey sounds similar to mine after our son was born. To this day, God amazes me by revealing more of himself through our parenting journey.
Jolene
Jolene, thank you for your work and your inspiration and for allowing us to share our experiences here.
I am a parent of a beautiful, just turned, 4 years old girl that was born with Type C EA/TEF. After 12 years of infertility treatments our gift finally arrived. My journey as a EA/TEF parent has been anything but a spiritual journey. Throughout our struggles and very difficult times, I lived Gods words and saw His mercy and miracles happen before my eyes. I have learned that love reigns above anything else. The love I feel for my child is indescribable. The love my child has for me is overwhelmingly genuine and pure. However, the love that God has for me surpasses all above. HE loves me so much, he trusted ME to be this child’s parent and to take care of her with all of her anomalies, complications, and struggles. That alone to me is so powerful that it gives me all the strength I need to go through anything. “I can do all things through God who gives me strength.
Jolene, thank you for your work and your inspiration and for allowing us to share our experiences here.
I am a parent of a beautiful, just turned, 4 years old girl that was born with Type C EA/TEF. After 12 years of infertility treatments our gift finally arrived. My journey as a EA/TEF parent has been anything but a spiritual journey. Throughout our struggles and very difficult times, I lived Gods words and saw His mercy and miracles happen before my eyes. I have learned that love reigns above anything else. The love I feel for my child is indescribable. The love my child has for me is overwhelmingly genuine and pure. However, the love that God has for me surpasses all above. HE loves me so much, he trusted ME to be this child’s parent and to take care of her with all of her anomalies, complications, and struggles. That alone to me is so powerful that it gives me all the strength I need to go through anything. “I can do all things through God who gives me strength.
Thank you for showing hope. Exhaustion and worry have claimed our lives for two years. I thought tonight about those awful first days and unknowns and that we had faith and today we have a miracle.
Thank you for showing hope. Exhaustion and worry have claimed our lives for two years. I thought tonight about those awful first days and unknowns and that we had faith and today we have a miracle.
My son has changed my way of looking at life. He has made me realized that things could have been worse. I have seen babies pass away and heard mothers screaming for their children to live. What if he was born something that was not fixable? Yet we were lucky to have it fixed. I drive around seeing homeless and say my life could be worse. I could be homeless, hungry and on drugs but instead I take strength knowing that both my children need me. I know we are fortunate. I feel like God sent me my son to show me to believe in him more. I don’t think I have gotten their fully yet but I am on my way.
My son has changed my way of looking at life. He has made me realized that things could have been worse. I have seen babies pass away and heard mothers screaming for their children to live. What if he was born something that was not fixable? Yet we were lucky to have it fixed. I drive around seeing homeless and say my life could be worse. I could be homeless, hungry and on drugs but instead I take strength knowing that both my children need me. I know we are fortunate. I feel like God sent me my son to show me to believe in him more. I don’t think I have gotten their fully yet but I am on my way.
I saw a book tonight at the pharmacy on the way home. It was a Veggie Tales book titled something like “God Made Me Special”. It was especially poignant to me because my son was born with EA/TEF and VATER in 1995. Next month he will turn 17. He has developed into a wonderful, self-confident, healthy young man that I am so incredibly proud of. For 17 years he has amazed me and inspired me. He has overcome many surgeries, pneumonias and learning challenges. I have to admit that for all the worrying and sleepless nights, I now find that my son will soon be graduating from high school in 2 years, has many friends, drives a car and is an amazing percussionist. He’s seen me cry when he passed milestones, like shaving, spending the night at a friend’s, dressing up in his first suit and he laughs at me. He always asks why I’m crying and I tell him that every time I watch him mature I realize there where so many times that I thought I’d never see him grow up. God really made him special. I remember how I cried in despair when we discovered his birth defects and how I asked God why he could make a helpless child suffer so. And now I understand. It’s because he knew how special my son would be and what a difference he would make in my life and so many others!
I saw a book tonight at the pharmacy on the way home. It was a Veggie Tales book titled something like “God Made Me Special”. It was especially poignant to me because my son was born with EA/TEF and VATER in 1995. Next month he will turn 17. He has developed into a wonderful, self-confident, healthy young man that I am so incredibly proud of. For 17 years he has amazed me and inspired me. He has overcome many surgeries, pneumonias and learning challenges. I have to admit that for all the worrying and sleepless nights, I now find that my son will soon be graduating from high school in 2 years, has many friends, drives a car and is an amazing percussionist. He’s seen me cry when he passed milestones, like shaving, spending the night at a friend’s, dressing up in his first suit and he laughs at me. He always asks why I’m crying and I tell him that every time I watch him mature I realize there where so many times that I thought I’d never see him grow up. God really made him special. I remember how I cried in despair when we discovered his birth defects and how I asked God why he could make a helpless child suffer so. And now I understand. It’s because he knew how special my son would be and what a difference he would make in my life and so many others!
Thanks for your comments, Emma, Lori, and Patty. Are any of you surprised by what you’ve learned to handle? I certainly was – and am. This is not who I planned to become, but I’m glad it happened.
Jolene
Thanks for your comments, Emma, Lori, and Patty. Are any of you surprised by what you’ve learned to handle? I certainly was – and am. This is not who I planned to become, but I’m glad it happened.
Jolene
Having a child with special needs has changed me in many ways, the first being learning and re-learning that there is much in life I cannot control. I had no control over how my child was born and whether she was healthy and what was going to happen to her medically or even how she would eat. This was hard and still is hard for me. I have also changed because of my profession, I am a special needs preschool teacher. Having first hand knowledge of how my parents are feeling and some of what they are going through has helped me to become a better teacher. I also now have insight into G-tubes, feedings and aversions, asthma, breathing issues and many other things. I too take nothing for granted but also take comfort in all that I have learned from my 3.5 year old and her struggles. I long to help others and am forever grateful to have her in my life. I continue to learn from her and I feel she makes me a better person.
Having a child with special needs has changed me in many ways, the first being learning and re-learning that there is much in life I cannot control. I had no control over how my child was born and whether she was healthy and what was going to happen to her medically or even how she would eat. This was hard and still is hard for me. I have also changed because of my profession, I am a special needs preschool teacher. Having first hand knowledge of how my parents are feeling and some of what they are going through has helped me to become a better teacher. I also now have insight into G-tubes, feedings and aversions, asthma, breathing issues and many other things. I too take nothing for granted but also take comfort in all that I have learned from my 3.5 year old and her struggles. I long to help others and am forever grateful to have her in my life. I continue to learn from her and I feel she makes me a better person.
We tried so hard for child, when I finally fell pregnant I knew our lives were going to change, little did we know how much!
Thys has brought us so much worry, heart ache, frustration, bewilderment, you name an emotion and we have probably felt it, but never have we been so happy, so content, with our little bundle of joy, he keeps us on our toes more than most babies but he is amazing. He has taught us so much, to love, to forgive, to laugh and most of all to live every second, he is my hero x
We tried so hard for child, when I finally fell pregnant I knew our lives were going to change, little did we know how much!
Thys has brought us so much worry, heart ache, frustration, bewilderment, you name an emotion and we have probably felt it, but never have we been so happy, so content, with our little bundle of joy, he keeps us on our toes more than most babies but he is amazing. He has taught us so much, to love, to forgive, to laugh and most of all to live every second, he is my hero x
I also live in a small town but in ND. My baby girl was born with type c Tef/Ea. She also had major surgery and several hospitalizations, we had to drive 8 hours to Minn to her dr. Her condition changed me as a parent, it showed me the importance of health, the things I took for granted as a mother of 3 healthy children. Although people are not able to see her disability I still get looks and sometimes comments when she starts to cough or choke about why I have her out when she sounds like she hA croup. Patience certainly is a virtue with those sort of instances. Patience is has changed with me.
I also live in a small town but in ND. My baby girl was born with type c Tef/Ea. She also had major surgery and several hospitalizations, we had to drive 8 hours to Minn to her dr. Her condition changed me as a parent, it showed me the importance of health, the things I took for granted as a mother of 3 healthy children. Although people are not able to see her disability I still get looks and sometimes comments when she starts to cough or choke about why I have her out when she sounds like she hA croup. Patience certainly is a virtue with those sort of instances. Patience is has changed with me.
I think all three of you, Nancy, Lucy and Denise, have hit upon something important. Raising a child with special needs makes a parent appreciate those small graces we too often take for granted.
Jolene
I think all three of you, Nancy, Lucy and Denise, have hit upon something important. Raising a child with special needs makes a parent appreciate those small graces we too often take for granted.
Jolene
I can echo what Lucy says, Jolene. I have also realized this past month how we must be like Mary, the mother of Jesus, in our response to carrying for our children. She knew her Son would have trails to come, watched Him bear pain, and watched Him die.
If I win the books, I already know to whom I will pass them on.
I can echo what Lucy says, Jolene. I have also realized this past month how we must be like Mary, the mother of Jesus, in our response to carrying for our children. She knew her Son would have trails to come, watched Him bear pain, and watched Him die.
If I win the books, I already know to whom I will pass them on.
Life is so different. It’s changed my outlook on life. Gave me a new appreciation on how precious life is!
Finances, vacations, mortgages…etc., all affected by demands of having a medically Ill/SN kid. He’s our child and love him unconditionally just the same as our typical. Life is different and no matter what it never will be the same!!
Life is so different. It’s changed my outlook on life. Gave me a new appreciation on how precious life is!
Finances, vacations, mortgages…etc., all affected by demands of having a medically Ill/SN kid. He’s our child and love him unconditionally just the same as our typical. Life is different and no matter what it never will be the same!!
My son being diagnosed with TEF/EA has changed us in SO many ways. But the biggest thing we’ve learned from it is not to take anything for granted. We now cherish the little moments and take time out ‘to smell the flowers’. Life is WAY too short.
My son being diagnosed with TEF/EA has changed us in SO many ways. But the biggest thing we’ve learned from it is not to take anything for granted. We now cherish the little moments and take time out ‘to smell the flowers’. Life is WAY too short.