Healthy YouDoes your child have an impairment or disability? This is a heartfelt letter to the mama whose baby wasn’t born “healthy”!
This post is part of the Dear Mom Letters series.
Dear Mom Whose Baby Wasn’t Born Healthy,
First of all, I do not know how you feel. My three children were all born “healthy.” We never spent time in the NICU, and I brought them home two days after birth.
Mamas like me can not even fathom what you have been through. Like us, you had the baby showers. You held the hope…and then saw it dashed when you heard the prognosis.
You may have even had a doctor recommend that you have an abortion…but you bravely carried your baby to term anyway, facing your fears of what your postpartum period would bring–and counting the costs of raising a child with an impairment.
While the rest of us may have struggled through breastfeeding or even dealt with postpartum depression, you may have encountered those things while sleeping on hospital waiting room couches, pumping around-the-clock for your little baby who needed your nourishment but hadn’t even developed the sucking reflex–or waiting tables at night just to pay all the medical bills.
Our own “trials” of early motherhood pale in comparison to yours.
Dear Mama Whose Baby Wasn’t Born Healthy,
You are strong.
When other people may stare at what they deem a deformity in your child, your heart fills with love at his or her beauty. And your heart shatters at the thought that one day this child of yours will know he or she is “different.”
I do not know, Mama. I just do not know why you are having to go through this. You may ask God “why?” and I ask Him that for you.
Moms like you can teach moms like me, though. Help us. Help us learn how to teach our “normal” children that your children are to be respected, are to be loved, are to be treated just like they would want to be treated.
One of the phrases I hated the most yet heard so often while pregnant was this: “It doesn’t matter if it’s a boy or a girl–as long as it’s healthy.”
But what if it’s NOT healthy? What if it’s NOT?! I always wanted to counter back.
Did that signify less blessings? Did that mean we would want to send the baby back?
Absolutely not!
Women in general: Can we just take that little phrase out of our vocabulary and recognize that children are a blessing no matter what?
I read the other day of a dad who was heartbroken when he learned his daughter was to be born with Down Syndrome. He is brutally honest: He even wanted his wife to abort.
But something happened when his little girl was born. She changed his life.
Now her daddy–who is head-over-heels in love with his baby girl, is a champion for other children like her.
Watch his story and be encouraged. It’s worth a few minutes of your time.
Gabrielle@MamaGab
Our baby seemed healthy at birth, but at 5 weeks, he was struggling to breathe and a trip to the ER showed that he had a rare lung defect. Hours later, we were flown to a children’s hospital where half of one lung was removed immediately to save his life (the doctors said he was hours or minutes away from death). It was terrifying and hard to deal with. For a time, we weren’t sure if he would be normal, though the amazing thing is that somehow, he is.
I can’t pretend I know what it’s like to have a special needs child, day in and day out, but I can tell you a little about ways to minister to moms in my situation. I cringe inside, as a Christian, anytime someone says “We’ve been blessed to have all healthy babies.” I was blessed, so immensely, by my completely unhealthy baby boy. God worked mightily and did some amazing things in my baby’s body and in his mama’s heart through that trial. I wouldn’t change a thing.
Jessica
Gabby, I didn’t know this about you! I’d love to see a link to a post if you’ve blogged about this! Thanks for sharing here…
Nancy
I have been the Momma in the NICU. With my 4th son. I think sometimes people think if you have other “healthy” children, you should just be happy, and that makes your “unhealthy” child easy to handle. My youngest doesn’t have as many struggles as he could have, but he definitely has a huge amount of them. He was born by emergency c-section prematurely because his heart rate was dropping. As a result, he gets sick very easily, and is a severe asthmatic. (He just got pneumonia this past month and he’s 8 years old now, and is finally recovering from that) He gets frustrated because he is excluded from some things his brothers can do. In fact, when his older brothers feel he gets all this special treatment and attention, they are reminded at all the things they get to do that he can’t. They were allowed to go outside last week and play with the basketball hoop and neighborhood kids, while he had to stay stuck inside, away from the cold air. They get to go to A LOT of fun activities, he can’t go to. During the cold/flu season, he is usually excluded from his Awanas and other children’s ministry activities because he might get sick, and getting even a cold for him, often results in tons of medications just to keep his lungs open. The older boys don’t get to miss a thing. So yes, I am thankful I have other healthy kids, but I think other parents need to realize, that doesn’t even remotely take away the pain of having one that’s “not healthy.” It doesn’t take away the worry every time you hear a cough or find a fever in that child. It doesn’t take away that child’s extreme anxiety issues because of all the doctors he has had to see. So that would be one bit of advice….don’t think everything is ok just because the person has other healthy kids. Also, take it seriously and don’t criticize the parents. I’ve had to put a note on my door asking people who are sick, to not visit and come when they are well. I’ve been accused of not being a “true Christian” because I’ve closed my home to those who are sick. I’ve heard the comments how it’s the sick who need Jesus the most……I agree. But my primary job is is to be Jesus to my sick child, then Jesus to others afterwards. I need to look out for him first, and foremost as Titus 2 states. Along those lines, don’t get offended when my child is with me in the sanctuary because half his church class is coughing and sick and we can’t expose him to the illnesses. Don’t get offended when you shake our hands and we have to use hand sanitizer afterwards. We’re doing only what we have been instructed to do by specialists and doctors. It has nothing to do with you…..think about all the handles, hands, etc you touched before touching our hands. It doesn’t mean you are a dirty person. It just means germs are everywhere and our hands can become a hazard to our child if we pick up illnesses on them. It also might mean that our child may have (as our son did) battled influenza B and almost didn’t make it because the virus came from contact with someone else. I guess the biggest advice that would sum all of that up, is, don’t judge the parent or the child. You may not understand, especially when the child looks “normal.” Most people find it easier to accept a visible disability, rather than one that can’t be seen (unless you see us pull out his inhalers because he’s in a coughing fit). Don’t judge the parent and think the child is in a dsyfunctional home just because he has severe anxiety…..that child might have been like mine who was hospitalized from the Waldo Canyon Fire, and had to have his blood drawn every 3 hours around the clock, even at night, because the smoke in the air made his blood toxic. He might have then moved to a brand new house a couple months later, only to have another tragic, massive fire start (the Black Forest Fire which destroyed hundreds of homes) practically in his backyard less than a year later, with the flames visible from his home’s windows. Then, when he tried to focus on the positive aspect that his grandma was going to fly out to see him, and focused on counting down the days for more than a month until she was going to fly in……he might have gotten a call that she had to cancel her flight because his great grandma suddenly was diagnosed with stage 4 cancer. Basically, don’t judge, because you have no idea what that child, or his/her family, has been through. Judgement and critical comments only make the situation that much harder for the parents and the child to deal with. Act in love, and know that not all “disabilities” are visible. That being said, I wouldn’t change my son for the world because he is the most loving child, who absolutely loves God and recently decided he was going to be brave enough and face his fears of being pushed under water, to get baptized. Just because it was that important to him. 🙂
Eryn
I too have a son who was born prematurely. He had to be on oxygen, antibiotics, and had severe jaundice. This meant that I couldn’t bring him home right away like I was able to do with my girls.
It took 2 1/2 years of doctors and me advocating for him to finally get diagnosed with severe asthma. Heaven forbid they give him a correct diagnosis because he was considered too young. We spent so much time in hospitals with my sweet baby boy. I have spent countless nights up doing breathing treatments and respiratory illnesses. He would get ear infections and then end up back in the hospital. He gets sick so easily and has had to be excluded from so much because of it.
People really don’t understand how scary it is to know that if your son catches a common cold he could not be able to breathe! It’s terrifying to wake up at night and run to make sure you’re son is breathing okay, because in all reality he could stop breathing.
Thank you for sharing your story. As a single mom of 3 it is nice to know that my family isn’t the only one who struggles with this.
Thank you!
Andrea
Through the last 4 years since my sons birth I have struggled with highs and lows. With him in and out of the hospital, therapies, feeding issues, people’s crazy comments, insurance companies and schooling. But, through it all there has been one solid constant to help me see the bigger picture, Jesus!! He has a plan and purpose through it all, I cling to His promises and His word… He is my comfort and sustainer!!!! I too wish people would choose their words better but I can choose to give them grace when they don’t! I love my son with all my heart and he is the biggest blessing to us!!!
Kim
Yes, Erin! Thank you for not forgetting us. My first child is typcial, but my second son has a genetic syndrome and is on the autism spectrum. We knew right from the start, as he collapsed after a C-section because he was breech. The genetic testing confirmed his syndrome.
No, I did not think he would be special needs, and yes, I took my vitamins, got off all medications and caffeine before I became pregnant. I probably had an occasional caramel chocolate or two, but hey, I was pregnant;-) I wouldn’t eat that way now, but yes, I never imagined I would have a special needs child; it was as if I thought we could dodge the bullet. But, don’t we all think that?
Being a special needs mom can isolate us, because our children need so much from us, and others tend to be busy with the “normal” life. It also isolates our typical children, whose wants can tend to get pushed to the side with their siblings’ needs. Some moms are just plain angry about their life as a special needs mom, and need your understanding and compassion, while they work through their daily issues. They love their children too.
I know some special needs moms don’t always feel this way, but I know without a doubt that my special needs son was a gift from God. I stand wholeheartedly on John 9:1-3. My son was created by God for a purpose. There are some special needs children who have one or two addicted parents, but that is not true of all special needs children. I go back to the fact that it is a God thing.
The Lord’s blessings to all~Kim
Sharla
My third pregnancy was a twin pregnancy with a surprise birth diagnosis of down syndrome in one of my boys. Both having twins and having one of those twins have special needs was not something I would have ever imagined for myself.
I have always encouraged all my friends to ask me any questions they want about my son. I want people to feel comfortable around him and not feel that his down syndrome is a taboo topic.
We are 2 years in and honestly.. This boy is the love of my life and has changed my heart and the hearts of so many others already! And so far he has been the easiest of all my children!
Edie
I became this momma six months ago when our daughter, our sixth child, was diagnosed prenatally with a severe heart defect HLHS (hypoplastic left heart syndrome). The single most important thing others can do for us is …pray. Pray that the Lord will give us and our caregivers wisdom. Pray that He would grant us peace in our storm. Pray that He would grant us joy even in the midst of grief. Pray that He would send encouragers to us when we feel we can’t go on. Pray that He would grant us strength so that we do not become weary. Just pray. And let us know that you are praying and mean it when you tell us.
You can read our story at www.wraymomma.blogspot.com
Anne
My son was born healthy, but my niece was born 5 1/2 weeks early and spent almost 2 weeks in the NICU. Although my niece struggled a bit with breathing and eating, her journey to health was nothing compared to what other NICU families were going through. I will never forget the baby next to my niece – one of triplets – the only one to survive. He had undergone many, many surgeries in the 5 months he was in the NICU and wasn’t even close to going home by the time my niece was leaving.
His story, and those parents struggle, has never left me. When I was opening my own business, I wanted to be sure to include preemie Baptismal gowns in my product line. I keep an inventory on hand to be sure I can respond to a family in need of a Baptism gown or romper in our local NICU’s.
God Bless all those babies and the parents that are blessed to have such special babies…
Eleasha
Thank you. That was very beautifully put. My third baby appeared healthy at birth, but then at 8 days, he started going blue. Through almost 3 weeks of hospitals stays, and dozens of tests, we never did discover what it was that was causing the problem. He was placed on oxygen, and that corrected the problem. I had some who suggested that we were just making it up. However, you don’t do the hospital stays, and not being able to sleep at night for fear that they’ll stop breathing just for attention. He is off the oxygen, but still developmentally delayed. He is making progress and doing wonderfully.
Jennifer Curry
Sammy is our “rainbow” baby. After loosing our middle son Logan, my husband and I were not in any hurry to have another baby. Not yet. But God had other plans for our family. After a long and difficult 8 months, God blessed us with another beautiful baby boy. After delivery the doctor heard a murmur, so she took Samuel to get an ultrasound of his heart and sent it to Riley to read. After a few hours of waiting the Doctor came back to tell us that Sammy had a sever heart defect called Tetralogy of Fallot. My husband Jason and I just looked at each other. We had no idea what that was and had never heard of it. The way the doctor explained it to us was that there are 4 different things wrong with his heart.Tetralogy of Fallot is a rare, complex heart defect. It occurs in about 5 out of every 10,000 babies. The defect affects boys and girls equally.Tetralogy of Fallot involves four heart defects:
A large ventricular septal defect ,Pulmonary stenosis, Right ventricular hypertrophy and an overriding aorta. Sammy started having problems with his oxygen. His oxygen level continued to drop, so on January 31st 2013, Sammy went in for his first heart surgery. The doctors placed a BT shunt in hopes for a temporary fix until he was a little older and bigger for the “repair” surgery. The shunt lasted for a while but then his oxygen level started dropping again. So we decided that on July 1st 2013 he would go in for his TOF Repair. Sammy did great that day. The surgery lasted 8 or 9 hours. The nurse finally came and got us and told us they were taking Sammy to PICU and he was doing great. The were able to extubate him right away and we could go back to see him. He looked really good. On July 2nd 2013 we went in to see Sammy and he was still doing really good. He was a little fussy, so the doctors let me feed him some pedialite. He did really well with that and so an hour later they let me try giving him some formula. He was so hungry that he sucked down 3 ounces in 5 minutes. I was so scared that he would aspirate from drinking so fast that I took the bottle away and gave him his passy. The nurse noticed his arterial line was going bad and needed to be removed, so she started to take it out and that’s where this nightmare truly begins. Alarms started going off so I looked up and looked back down at Sammy and he was a very dark grey color almost black and his eyes were dead looking at me. It was the scariest sight of my life. Doctors and nurses rushed in and all I remember is screaming for them to save my baby. I can not believe this was happening again. God please don’t take my baby!!! Save him!! As they are doing chest compressions, my husband takes off running looking for our favorite nurse who has been by our side since we took our Logan off life support, I hear some one yell “clear”! My heart is breaking. I can’t breathe, my legs feel like noodles, I feel like I’m about to pass out. I hear “clear” again and again and again. Finally I hear “we have a rhythm” ‘get him to the OR”. As they start to wheel Sammy to the OR I was able to sneak a little kiss. I remember asking Sammy to stay with me. Fight Sammy, fight for Mommy. Five or six hours later they bring him back to the PICU. He was hooked up to an ECHMO machine. An ECHMO machine is a heart and lung bypass. They wanted to give his heart and lungs a break and give them a chance to rest and recover. While on this machine, Sammy started having seizures. The doctors had Sam on several seizure medications but he was still having them. After 5 days of being on the ECHMO machine he was finally able to come off. Things were starting to get better. Sammy was starting to get better. Finally we were able to get an MRI to see how much brain damage was done from the lack of blood flow during the event. The results came back that Sammy suffered traumatic brain damage. This is not news that we wanted to hear. Sammy was able to go to the heart center. The step before home. Sam had to have a g-tube placed because he is on so much medication and he was not eating enough by mouth. On August 7th 2013 we got to bring our Sammy home. Sammy
is not out of the woods yet. We have a lot of doctors appointments and a very long road ahead of us. We are overcoming obstacles and Sammy is doing things that the doctors said he may not ever do. The eye doctor said that Sammy was not seeing, now he is seeing. He’s baring weight on his legs, he has stared rolling on to his side, he is smiling and laughing and babbling. He says dadada and mamama, he gives kisses and loves to cuddle. There was a time in the hospital that Sammy did not like or want to be held. Its the complete opposite now. As of right now, Sammy has had several ear infections and we are waiting for our appointment with ENT in November to schedule a time to get tubes placed. He has stopped eating by mouth, so we have to tube feed all of his feedings for a while, he is on a special formula, one that is partially digested called Pregestimil. We are hoping this will help. Sammy has started physical therapy and occupational therapy and is doing great! He has surely come a long way. We want to thank all of you for your love, prayers and support. Please continue to pray for Sammy as he faces more challenges in life. He has lots of doctors appointments and a long road ahead.
Nichole
I am so glad you posted a link to the “Confession Letter” video. I, too, watched the video this past week. His honesty is just so touching. And his conviction to show his pride of his daughter is encouraging.
And, I love that you ask us to get rid of the “as long as he/she is healthy” in our language to mothers. You are so right to point that out. A child, no matter what challenges he/she shall face, is a blessing and should not be thought of otherwise.
Amy @ Tiny Blessings
I had two preemies… both born by emergency c-sections after high-risk pregnancies. Recovering from my own resulting health issues while sleeping in a courtesy hospital room with my tiny baby (twice) down the hall was one of the toughest things I’ve ever done, and it forever changed the way I deal with medical professionals. (Or, as my husband and I like to joke, it awakened the “mama bear” instinct in me.) Both of my kids have challenges (health issues, learning disability) but neither has a physical sign of all they’ve been through– to look at them, you’d assume they were “normal”.
One thing I would say: allow these moms time to grieve. It is perfectly normal and acceptable for them to feel some sadness, especially in the first few weeks and months. Just because you know ahead of time that your child won’t be typical, doesn’t mean that your heart doesn’t break a little every time another doctor, another specialist, tells you something else about your child’s future. Moms might even fluctuate between seeing this child as an amazing blessing and grieving the challenges… I did!
Monica
I too had a baby was not born “healthy”. In Sept 2009 my husband and I were told we’d never be able to have another child without extreme medical intervention, and even then it wasn’t a guaranteed success. We were disappointed, but decided to be happy and blessed with our one child, who was 4 at the time. God had other plans, however, and in late April 2010 discovered we were indeed pregnant! My husband and I were elated and terrified at the same time. I was working a part time job, and my husband was unemployed after a company-wide layoff. We decided to trust God, and chose to hold onto the faith that the Lord wouldn’t bless us with a child we could not provide for. We went for our first ultrasound in May and immediately knew something was wrong based on the reaction of the sonographer. Before we knew it, we found ourselves sitting in a geneticist’s office, listening to an explanation of Turner Syndrome–a random genetic disorder–and being advised to abort immediately. We were told 99% of Turner babies die before the 3rd trimester. We were devastated. That evening though, we decided to go speak to our church family at the Wednesday night service, and that evening they laid hands on us and prayed with all their might following James 5:14-15. My husband and I decided to accept whatever the Lord had in store for us. If we were able to carry our baby to term we would love her no matter what, and if in His infinite wisdom He chose to call her home early we would accept it in faith and the assurance that He had a greater plan.
We DID carry her to term and the following December our precious baby girl entered the world and was immediately whisked to the NICU where she would remain for a week. Because of our faith, that week was joyous. We were elated to have her with us and knew in our hearts that she would be coming home. We were correct.
Today our pumpkin is just a few months shy of turning 3. She has a heart defect that must be monitored. She has a team of 12 specialists who evaluate her yearly. She’s had 2 surgeries for an extremely rare lymphatic malformation in her foot, and she receives weekly therapy for sensory processing disorder. She’s the size of a 22 month old but we wouldn’t have her any other way. She’s our ray of sunshine. Our spunky little go-getter who has taught us countless life lessons. She’s bright, extremely intelligent, and a joy to everyone who comes in contact with her. We are so blessed to have her, despite the odd quirks and minor physical differences here and there.
The hard part, for me, is knowing what’s coming down the pike. As she ages, her lack of growth will become more and more noticeable. For now, we are refusing growth hormone as we feel God made her just the height He designed her to be, and she’s projected to still be 4’10 without GH. That’s okay. Not everyone in this world has to be 5 foot tall. When the time comes to explain to her that she’ll never be able to carry or conceive a child (barring a direct miracle from God) it will be difficult and heartbreaking. We plan to always teach her that not all children come from our own bellies and that’s not what determines whether a woman is a mom or not. God decides who is a mom–it’s just that sometimes He choose another woman to carry the child, and the God-chosen mom to adopt that child to complete His great plan. That will be hard and I’m not sure how she’ll receive it.
Still, I don’t regret not choosing abortion. I don’t regret the rollar coaster ride of pregnancy, the weeks of constant therapies and specialist visits, the endless medical bills. I’d do it all over again.
Coincidentally, her name is Eliana Grace. (Ellie-AH-Nah). It’s Hebrew and means, “My God has answered”. 🙂 Her name quite literally translates to “My God has answered with grace”. His grace is sufficient. Always.
Lily
I too had a preemie about 3 1/2 years ago and he has been the joy and sometimes heartache of my life. He was born at only 25 weeks and was in the NICU for the first 4 months of his life. He was recently diagnosed with CP, which basically means his muscles and nerves don’t communicate as well as they are suppose to. By Gods amazing grace he is able to see, hear and laugh; all things the doctors told us would not happen. He has learned to crawl and learning to walk now, but speech has been a bigger challenge so far. One thing we have learned so far is don’t put your hope in what the dr.s say because your hope can ONLY come from your Father who us!
To answer the questions, I would say look for ways to help those special mamas out there because we get very weary of having to ask for it all the time. Simple acts of kindness mean a lot to us. Be ok with asking questions, I too want people to understand my son and what he can do, not just what you can see is different. As for other children, just allowing them to be kids around my son is great, he loves it! I’m ok with them wanting to check out his wheelchair and give him a spin. Even if he can’t do everything your children can, just let them figure out how to interact with him. He absolutely loves when kids run around him 🙂 I know this may not be true for all special needs children, but I believe they all just want to know that they are noticed and not shunned just because they act differently than you expect. If your child can read, I think most children would love to hear a story read to them 🙂 every child is different ( typical or not), so just praying as you interact with them so you can find out what makes them smile will make a huge difference!
Jaci
Thank you for this!
My oldest son (almost 7) has Down syndrome and was born a bit early. He had intestinal surgery at 2 days old. And as if that werent enough he also struggles with something called Global APraxia, and CAS or Childhood Apraxia of Speech. WHich basically means he doesn’t speak well at all. Even though he’s 7 he speaks more like a 12-18 month old. And the real kicker? I’m a speech therapist!! SO yes, God knew what he was doing but ya gotta admit He also has a sense of humor!
I’m so glad that someone “outside the club” is encouraging others to help and pray and encourage their children to interact with ours. I can’t tell you how many times I’ve had parents say to me or near me without knowing my son was mine, some snide comment about “those kids” One of the daycares my sons were in had lots of special needs kids b/c most daycares find a way to refuse them. I heard a few parents say “why are there so many of “those kids” here?” or “I hope my kids don’t learn bad behavior from “those kids”!” We need other parents to stop worrying about what your kids our learning from ours! Because I promise its ALL GOOD! Your child will learn compassion, how to be encouraging, how to be helpful, how not to feel entitled! Those are lessons they probably won’t learn anywhere else!
WE also need to end the “Oh i’m sorry” or the “sad sigh” when we tell you about our kids diasnosis. Our kids are a joy and a blessing a new baby is nothing to be sorry for! Tell us congratulations, or I bet he’s adorable or something positive!
And please stop saying “God gives special babies to special people” or “I couldn’t do what you do” Yes God knows what each of us can handle and gives us trials and blessings accordingly. But my child would be just as special with or without his extra chromosome! ANd if you had a kid with special needs you could do…you wouldnt’ have a choice but to do it JUST LIKE ME!
I’m sorry if this sounded like a rant but these are the tings that you guys can help us with!
Cindy
That was an awesome comment! Isn’t that the truth?
Sam
We struggled through four years of infertility before we finally became pregnant with our second child. My pregnancy was uneventful for the first 6 months and then everything started to slowly fall apart. Each little setback was disheartening but I was happy to finally be pregnant and i knew i would do anything to keep myself healthy and to finally get to hold my baby. I was diagnosed with diabetes, and then there were concerns that my baby wasn’t growing correctly, and then I had pre-eclampsia, and then I had to leave my 6 year old autistic son for an entire month while I was on bedrest only to deliver prematurely after a long labor that nearly killed us both.
My son, Toby, was born 4lbs 8oz and not breathing, they were able to revive him and immediately took him to the NICU, where i could not follow because I was still on medication to treat my preeclampsia and was unable to get out of bed for another 36 hours. He was in the NICU for a week, struggling to regulate his breathing, and then to fight jaundice. A small surgery, countless injections, and several days under bili lights and they finally let us take him home.
He is 3 and today he is slightly asthmatic, but otherwise physically healthy. He is also severely autistic and non verbal.
We have gotten pregnant again since then. When I was pregnant people would ask if i really wanted a girl after having two little boys, and i could honestly tell them that I didn’t care, so long as it was healthy.
What if my baby wasn’t healthy, you ask? I wouldn’t be disappointed. I could never be disappointed with the beautiful blessings I have been given but my heart would break. Being the mother of a child with special needs is hard. It is so physically and emotionally draining and can be such a struggle to balance simple household duties with doctors appointments and therapy appointments, and meetings with the school district to coordinate services, but the hardest part is to watch your child struggle. My heart breaks a hundred thousand times as I watch my boys struggle. Their lives are SO hard, they struggle to understand the world they live in and are frequently in a state of anxiety and inner turmoil. I don’t wish that they were “normal” (whatever that means) but i wish that their lives weren’t so hard.
Its okay to not want that for your children.
As hard as it is, I can tell you without reservation that I love my children. I love them so much it feels like my heart will burst. Every single thing they do is an amazing accomplishment and they have brought so much joy into my life, more joy than I could have ever thought possible.
After years of infertility, followed by the birth of a severely disabled child, I can tell you with all honesty: I’d rather have full hands than empty arms
Cindy
I have a son with an autistic spectrum disorder and my daughter has spina bifida, clubbed feet, cranial stenosis and was extremely premature-25 weeks. Thanks for your post. I keep a blog about our decision to choose life. www.wechoselife.blogspot.com
Erin
I’m so glad you chose life. Thank you for sharing your story!
amanda
Just wanted to say thank you for this. Both of my children were born severely premature for no known reason. One at 26 weeks (1 pound 12 ounces) and one at 23 weeks (1 pound 3 ounces). Between the 2 of them they have spent 8.5 months in intensive care, 6 hospitalizations, 10 surgeries and years of OT, PT and speech therapies. They are now 8 and 4 and healthy (besides significant delays in my younger one). It can be so isolating to have such a different mothering experience than the vast majority of women. Sometimes all I could do was leave the hospital, get in the car and scream at the top of my lungs. You hit the nail on the head with the frustration over the phrase about just wanting a healthy baby. I heard so many times how blessed others are with their kid’s health. What does that make me?? I struggled with that for a long time. But then I was pointed to the beatitudes. Blessed isn’t about the “good” things that happen to you. It’s state of being in relationship with a God that holds you in his grip no matter what. Even when you kick and scream and curse him. A God who knows what it’s like to watch his son suffer, and even die because his love is just that strong. I have now reclaimed the word blessed, even tatooing it in greek on the nape of my neck to always remember I am a loved child of God and nothing can ever change that.
Samantha
I have three children, and all three were NICU babies. My first was born by emergency c-section after a difficult pregnancy. They thought I would miscarry for the first 4 months, then at month 6 I was in a car accident. In month 7 I went into pre-term labor, but they were able to stop it. It happened again at 8 months. At 36 weeks my son stopped moving due to a cord accident. We were able to get to the hospital in time to save him and he was born 14 min after the doctor said it was time. He was not breathing and unresponsive at birth. He only spent 8 hours in the NICU and came home with us within the regular allotted time. 3 weeks later he was rushed to the ER and told if we had waited 30 more minutes, he would have died. He was in the hospital for a week for RSV and was diagnosed with Asthma and requires breathing treatments.
The pregnancy with my second child went perfectly. I had a VBAC and all looked good until the normal blood tests came back. Her direct bilirubin was too high and she was transferred to a NICU at 4 days old. She had surgery to save her life at 11 days old. The surgery was deemed a failure minutes after recovery. She was rushed to a new hospital 16 hours away and as a family, we had to move. She was diagnosed with an extremely rare genetic disease that affects 1-3 newborns a YEAR. She has pediatric liver disease, wolf-parkinson-white syndrome, pulmonary artery stenosis, and she had a hole in her heart. The hole was corrected, but she now has to be monitored once a month for her liver and every 6 months for her heart. She has developmental delays and the chance of infection is always on our mind. I was tested and it was confirmed I also have the disease, though not at the same level. We were not going to have any more children, but of course that wasn’t in God’s plans.
My third pregnancy went great. My doctors were supportive, even though she had a 50 percent chance of having the same disease as my second child. At week 37 I developed preeclempsia and had another emergency c-section. My daughter had breathing troubles and was in the NICU for 11 days total. Today she is happy and healthy.
My middle child is the only one that looks different. She is small, has bumps (xanthomas) all over her body, she is jaundiced and struggles physically. She was only supposed to live 30 days and she is now 4 years old. I encourage people to ask questions as it is a very rare disease. She is my miracle and she is such a sweet girl.
Shonda Toms
We thought our son was a healthy little boy. When he was 2 we noticed he had some developmental delays and that he had trouble climbing stairs. We started speech therapy for him and then physical therapy. Then came his 4 year check-up. The pediatrician told us with all of the services he was getting that we needed a diagnosis. We went to a Neurologist and month later we were given the news that our 4 year old little boy had Duchenne Muscular Dystrophy. A disease with no cure and no approved viable treatment. We were devastated and heartbroken. Didn’t know what to do except pray and hold on to our faith in Jesus Christ as hard as we could. People would try to comfort us but they didn’t understand. Someone told me that God wanted to get to know me better, which did not help me in my devastation. Someone said God showed them I was strong enough to handle and I said I don’t want to be so strong, I came to realize that God gives me the strength to get through this and that I am too weak in my flesh to handle this. The kicker was God gives special kids to special parents, but this isn’t true either because their are a lot of parents who choose not to parent their children either through abortion, giving children up for adoption, or spouses leaving the family because they just can’t deal with it. I’m not special I just love my son and intend to do whatever I have to do for him. The best way to minister to parents in this situation is to just listen to them and to pray for them and to just love on them. We need to teach children that God creates each one of us uniquely and that God has a purpose for each and everyone of us. With my son I have seen children treat him like the other kids and when they ask questions I just answer them.
Cindy
I hate it when people say God doesn’t give you challenges you can’t handle. That is not true, it was then why do so many people terminate when they find out something is wrong with their baby.
Erin
So true–what a ministry you have for teaching others to CHOOSE LIFE!!
Cindy
My daughter was born with Spina Bifida, clubbed feet and later we found out cranial stenosis. We tried fetal surgery for Spina Bifida and because of a very rare complication with the surgery she was born at 25 weeks, in fact even though Children’s Hospital of Philadelphia has done over a 1,000 surgeries, we are the only time they had this complication. She was delivered to save her life. She has shown that miracles do exist. She should not be alive and yet she thrives. She has shown us the meaning of true happiness, but my heart does break for the day she finds out she is different. She is so happy now, but she has no idea she is different. She is less than two years old. She has had 11 surgeries and is brave each time. We don’t have to be healthy to have a wonderful life. I keep a blog called www.wechoselife.blogspot.com
Erin
Amen–she sounds like a wonderful child. Praise God for her life!
Miranda
this. what if they aren’t healthy?! what then?! That spoke to me. I lived that. My daughter was born 5 weeks early, but had NO complications. She was perfect and came right home. But the next two weeks would be devastating to me. The state called our pediatrician and told them she had Glutaric Aciduria Type 1 which is a rare metabolic disorder which can result in irreversible brain damage or death. I was beside myself.
GA-1 can be treated, so we dove head-first into the special needs life and never really looked back. She is 5 now, on a strict diet and hospitalized for the tiniest of illnesses.
But we always wanted a big family… 6 kids and a dog and everything!! So now what?! my dreams were shattered.
Maggie was 2.5 when I had Henry by c-section. Henry had a 25% chance of having GA-1 too. Never once did I ever even think about the whole “as long as he’s healthy” thing. I wanted that boy from the moment I knew he was in my belly. He also has GA-1 and his resulted in macrocephaly on top of the metabolic disorder. He had to have brain surgery to drain a hematoma which was putting pressure on his brain. He was delayed in walking and just started speech therapy this year. When that boy said “I love you, mom” I about broke down and stopped breathing. They are my heroes!!
What you can do for people like me? Teach your kids to love us no matter what. Teach them that just like God makes boys and girls different and everyone has a different shade of skin, hair, eyes… God makes some kids who can’t eat protein, who have to be hospitalized for the sniffles, and who are extra cautious because their mommy had to make sure they didn’t bump their head when they were learning to toddle, because brain surgery was the result of that bump.
And for me, care for me. Don’t leave me stranded here on my island. I don’t expect you to understand. I think that’s one thing people don’t get… like you think you need to understand my place in God’s plan and have answers for why I have to live this life (which I have learned to accept). You don’t have to have answers. Don’t put that pressure on yourself… it’s not your place to have answers. Just be my friend. Be there for me. Love me. When I’m feeling happy, love me. When I’m sad, love me. When I feel low, defeated, overwhelmed, scared, alone, LOVE ME. You will NEVER understand unless you live my life. But you can be my friend anyway because we are all different with different paths and lessons and lives to live (for a REASON).
So many people just walk out of our lives… because they don’t know what to do or how to help or what to say. Just stay. Love me. Be there for me even if it’s hard for you to understand. Even if you feel awkward because you can’t even imagine what I’m bawling about. And believe me when I tell you what is on my mind. Don’t just assume I’m overexaggerating because my kids seem fine most of the time but when it gets bad, it’s really bad really fast. Sometimes things don’t happen like you expect them to.
And pray for me.
Erin
Oh Miranda! Your comment made me cry–on a “this message SO needs to be heard sort of way!” I am sharing this on my Facebook page. My best friend/college rookie’s son was born with a genetic disorder where his blood doesn’t clot. He looks perfectly normal, but I am sure she had felt the same as you in many instances. Take heart, dear sister! And thank you for sharing with our community! Much love and praise GOD for your babies!!
Tristan
Eight children call me mom. My oldest is just 12 years old and my youngest 5 months. My seventh child, Mason, was born with multiple medical issues, the biggest of which at first was spina bifida. His spinal cord was literally outside his body on a portion of his back. Mason will be 2 next month. He is paralyzed from the waist down, uses a wheelchair, and has had 11 surgeries already, six of which were brain surgeries, with more surgeries coming up. That is not what I see though. I see my redheaded firecracker who laughs, loves, and plays wholeheartedly.
katie
I found this post today: http://liferearranged.com/2014/01/why-it-matters-when-we-rub-our-bellies-and-say-so-long-as-its-healthy/
I thought back to your post and thought you might like to read it.
Allison H.
I admit to expecting Christian saccharine platitudes but am so, so honored to have read this. Our firstborn was diagnosed with cystic fibrosis before he was one. It is a recessive genetic condition, meaning that every pregnancy carries a 1:4 chance of having the 2 mutated genes that cause CF. We decided (after a long 2 years of realizing that our “lack of faith” was not “holding back God’s healing” that we didn’t want Rees (our son) to think that his life and care was so awful, so burdensome, that we didn’t want anymore children. So we had more. All the way up to 7 kids, and our 7th has CF too. We have this weird, “I dare you to tell me that my kids are second-best” mentality! No one is guaranteed tomorrow. My friend had a son within a year of us, 19 years ago, perfectly healthy, and I fought jealousy. He was killed in a car wreck last month. You get the time you get. Then heaven. Our job is to love and care for people. Well, I’ll stop now! Again, you did a wonderful, beautiful job, and I’m pleased to share it!
Miranda
I LOVE your comment!
Erin
Allison, I am so honored that you liked this post. I will always remember watching a movie and reading a book about a girl with cystic fibrosis when I was a child. It was called Alex: The Life of a Child. My parents let me watch it when I was really young (I’m thinking 5 or 6?), and it touched me so much. (I read the book when I was older.) Even then, I was struck by how meaningful she made her short life of 8 years. Have a wonderful night!
Becky
Very well written, thank you. My third son was born with a rare heart effect, he died when he was 6 days old. We knew ahead of time that he had heart problems. After he was born they discovered it was worse than expected. When I realized and finally accepted that I was never going to know why, never going to have a reason why one baby lives and one dies I was able to heal with Jesus’ love and grace. Helpful people didn’t ask what I needed or tell me to call if I needed them, they just did it, showed up with meals, and yard work, and listening ears. Telling me it was meant to be did not help. My child was meant to die? I can say I became a better person having gone through it, I am thankful for the lessons and know I will see my son again some day.
Erin
Thank you for these tips–and thank you for sharing about your precious son. I am so, so sorry for your loss.
Cindy
This was difficult for me to wrap my head around. Our daughter survived a cord accident related to the fetal surgery we tried for Soina Bifida. It was so rare of a complication that even though CHOP has done over 1,000 fetal surgeries we are the only time it happened at that hospital. Really she should not be alive, they have seen that kind of accident at other hospitals but the babies died. Ezri is a completely miracle. It was hard to see other babies die for whatever reason when truly without a miracle my little girl would not be here. I saw five families within a year deal with the kids of a baby. I had to put it in God’s healing hands too and not question it and just be happy that our sweet girl is here and showing forth God’s power as she overcomes challenges. She has taught me so much. I have learned from the families who lost their babies too. They have been my inspiration especially my friend Stacy who I met because our babies were in the hospital at the same time. I remind her that her daughter taught me to be brave and have courage and to be grateful that even though our sweet girl has many challenges she is here. I live as positive as I can each day in her memory. Your courage has probably taught people more than you know.
Cindy
This was difficult for me to wrap my head around. Our daughter survived a cord accident related to the fetal surgery we tried for Soina Bifida. It was so rare of a complication that even though CHOP has done over 1,000 fetal surgeries we are the only time it happened at that hospital. Really she should not be alive, they have seen that kind of accident at other hospitals but the babies died. Ezri was born at 25 weeks and just proved everyone wrong. Ezri is a completely miracle. It was hard to see other babies die for whatever reason when truly without a miracle my little girl would not be here. I saw five families within a year deal with the loss of a baby. I had to put it in God’s healing hands too and not question it and just be happy that our sweet girl is here and showing forth God’s power as she overcomes challenges. She has taught me so much. I have learned from the families who lost their babies too. They have been my inspiration especially my friend Stacy who I met because our babies were in the hospital at the same time. I remind her that her daughter taught me to be brave and have courage and to be grateful that even though our sweet girl has many challenges she is here. I live as positive as I can each day in her memory. Your courage has probably taught people more than you know.
Erin
Thank you for sharing your story. Praise God for saving your daughter!
Nicole
thank you. I found your blog this morning & read both this post & the one about stillbirth/miscarriage. I am a mom who has spent long hours sitting in the NICU & prayerfully waiting for news of how my infant son fared in surgery (thankfully he is fine now). I have carried a pregnancy to term even though I knew that my daughter would not live due to anencephaly. I live daily caring for a son with severe, nonverbal autism. Each of our “unhealthy” children was just as much of a blessing to us as our healthy ones. Our son was considered a miracle baby in the NICU & every nurse & Dr knew him. Our daughter lived for only 28 hours yet touched more people in her short life than many people do in 90 years. Our autistic son can be exhausting at times but he is a true blessing. Thank you for being able to see them as blessings
Erin
Oh Nicole–thank you so much for sharing! Before I began blogging, I wrote for my local newspaper.I was honored to write about a family who lost their daughter to anencephaly. It was incredibly heart wrenching, but the family ministered to so many through their daughter. Thank you again for sharing.
Connie
I love this article. It really touched my heart because one of my four children was born with polydactyl hands and feet that required multiple surgeries to correct the extra fingers and toes. But that wouldn’t be all because at four months after noticing she was not lifting her head, she was discovered to have an arachnoid cyst on her brain stem that was making the fluid build in her head. She required immediate surgery then and later again at three years old to put a shunt in. Sadly, on Christmas Eve just another month later, she needed another emergency to remove the shunt that had fallen out of her skull and was weeping brain fluid from the wound on the back of her head.
After those surgeries things have remained stable but still require monitoring. She has some differences in her brain also. White matter is where grey matter should be and vice versa.
She is thirteen now and knows she is different. She sometimes wants to know why her hands and feet are not the same as other kids. We have always taught her that she is special. She may never be totally mature or self sufficient but we would not have Amber be any other way than the way God gave us her.
I still remember the day the doctor wanted to know if I wanted an amnio but I said no because we would be blessed and have the baby regardless.
I truly believe God gives special children to us for a reason.
Erin
Thank you for sharing your story, Connie!
Beth
First of all, thank you. My sweetheart was diagnosed prenatally. Abortion was recommended. Our NICU months were hard. Hard on me. Hard on my husband. Hard on my older daughter, who had never been away from me. Hard on our brand new baby, who is now a beautiful two year old.
What can you do for us? How can you teach your kids? My best answer is allow the kids their curiosity. I wrote a few months ago here: http://joyfulcatholicmom.blogspot.com/2013/09/open-letter.html
Open letter to parents:
Dear Moms and Dads,
I want to talk about something uncomfortable. It has come to my attention that many of the best among you are making a big mistake. I understand. I was too, two years ago.
My daughter has a rare genetic syndrome, called Apert syndrome. When she was a baby, the plates in her skull fused together. That meant that there was no room for her brain to grow, and she needed surgery right away to relieve pressure. Her head is larger than average. When she was born, her fingers and toes were fused together. She has had the first surgery to separate her fingers, so now her thumb and pinkie are released. She has a tracheotomy, so she cannot talk yet. Because of various complications, she has spent a significant portion of her young life in the hospital. She is developing muscles that she needs to sit up on her own and to walk. She will do these things, but for now she is in an adaptive chair. My beautiful girl stands out.
I already have to teach my girls that some people are just mean and you cannot let it bother you. I already have to teach my girls that loving people who are mean is part of what it means to be Christian. I am trying to teach them that most people are good, and that is where you come in.
When I take my little girl out, we see all kinds of reactions, but the most natural, the most genuine, the most common, is the reaction we see from most kids. They look. Some are puzzled. Some worried. The most adventurous of them ask questions. Almost all are curious.
Staring is rude. Pointing is rude. You know this. You are embarrassed by your child because they are pointing or staring. You shush your child and pull them away quickly, and I know you are doing it to save my feelings, but my feelings are not so fragile and your action is doing real damage. You are teaching your child to be afraid of what they do not understand. I bet that most of you have a short conversation about diversity and not staring later; you are good parents after all. I would like to challenge you to have the conversation right there. Put a smile on. Say hello. Introduce yourself and your child. I will introduce myself and my children. Your child will ask questions. Likely the same questions you would want to ask, but you feel rude highlighting the differences, even when they are obvious.
Here is the thing: kids categorize. They need your help, and maybe mine, to make sure Sarah gets into the right category. They ask questions to figure out how things fit in their world. When you don’t let them ask their “rude” questions, you confirm my daughter as “other.” Believe it or not, every kid I have met who was allowed to ask as many “rude” questions as they liked, learned in just minutes to see my daughter as I see her. She is just a kid.
She loves lollipops. She laughs at her granddad. She has favorite music. She is going to school this year. Her favorite color changes all the time. Today it was green. She has a younger sister and an older sister. Her favorite TV show is Veggie Tales. She is Daddy’s punkin and Mommy’s sweet pea. She will absolutely charm you with her wide, blue eyes.
Imagine what my daughter sees. A sweet little face unable to look away from her. Pointing. Then an adult pulls the child away, consciously avoiding looking at her. Now imagine that this happens over and over again. She is a bright little girl, and this is very hurtful.
At the very least you can model the behavior you wish your child had shown. Make eye contact with her and smile. Anything less and it won’t matter what you say about diversity later. Your kid and my kid both got the same message from your embarrassment: She is “other.” She is something, not someone. The initial fear was confirmed. I will take rude questions over that hurt any day.
I am not accusing. I know it is hard.
There are nasty bullies in the world. We will get over that. We will get over the stares and the pointing from people who should know better. We will get over the nasty comments. We will get over the name calling. We will get over it all because, as I told my older daughter, no matter how many people cannot see past her differences Sarah is surrounded by people who love her. People who see her. And she is amazing.
Kids are not mini adults. They are astounding little people. They are curious and open and full of wonder. You can teach them to see a child like them when the see my precious girl who looks different and rides in a wheelchair. You can teach them to see her as a potential friend. Or, you can teach them to be afraid. It is your choice. I won’t judge. Like I said, I was you and I did not know how to act either. You don’t have to be one of the people who love her- though honestly, you absolutely will if you give yourself half a chance- but please, be one of the people who see her. Teach your kids to see her. Please.
-Beth
For more of our story, feel free to visit my blog.
Beth
Sorry for the length.
Erin
Thank you so, so much for sharing your story, Beth. We need moms like you to help us to empathize–to help build compassion–to help love you & your children better. Thank you so, so much.
kristy
Our first was born with a cleft lip and palate although he has been generally healthy we struggled with weight loss and feeding him properly. He endured many doctors visitsin his first few months. He wore a mouth piece for two months. Has had two surgery to repair his clefts. We still have a long road ahead of us. We have been stared at and heard many comments about his looks when he had his cleft lip still. My advice to those with “normal” babies is to not just stare and wonder what’s wrong. Ask!! I love sharing my sons journey with others! I admire his strength! I would rather other ask me what his story is than stare at him and never know. For family and friends… They are our biggest strength! Be there for your friend of family with the sick child! Don’t ignore them because you don’t know what to do. Bring them meals or care packages for the hospital. Take them out on a date. Watch their other kids so they can get out alone. The best kind of service is the kind you don’t have to ask for! Don’t ask them how you can help just do it! Never let a prompting go undone. 🙂
Cindy
Beth,
Thanks for sharing! My blog is about our choice to not terminate even though it was offered to us at least three times. We chose to do fetal surgery instead and my daughter is doing great. She has her struggles with Spina Bifida, but who knew she would defy the odds. I guess I believed she could. She was born at 25 weeks to save her life. She spent 21/2 months in the NICU which is almost unheard of for a baby born so early. We hear all the time that she defied the odds. I remember when she was born I kept having the scripture John 9:1-3 come to my head. It is about when Jesus’s apostles ask him who sinned that this man was born blind and Jesus answered Neither, but that the works of God made be made manifest in him. Ezri is living proof of God’s miracles. Even though we had a bit of a rough start she has brought so much joy to our lives. My blog encourages those who get a prenatal diagnosis to choose life.
Tamara Mantlo
This is a beautiful article, I’m an adult with a rare syndrome and a congenital heart defect.. I wasn’t born healthy and the one thing that makes me upset is when people who are healthy or have healthy children use the word “normal”… It’s bad enough when I have to got to a new doctor or the emergency room and I say I was born with Carpenter’s Syndrome and they look at me like I’m an alien from outer space… Just because I have differences doesn’t mean I’m not normal.. “NORMAL” is a setting on a washer or dryer….
Erin
“NORMAL” is a setting on a washer or dryer….
AMEN.
Thanks for sharing your story, Tamara!
Rachel R.
Maybe it’s just me, but I always understood “as long as he’s healthy” to mean, “as long as he’s strong enough to survive so we get to keep him.” And, frankly, I *would* care if I didn’t. God is God and He can do whatever He wants, but that does not mean I would be “okay” with not getting to keep my baby; it would definitely be a whole separate category from whether I’d prefer a girl or a boy. But also – at least in my mind – a totally different category from, say, whether he had Down Syndrome or autism.
I know there are readers/commenters here who have lived through *both* scenarios, though, my heart hurts – and rejoices, as appropriate – with/for all of you.
Anonymama
Oh, dear. It’s a little upsetting to see how popular it’s becoming to bash that “as long as it’s healthy” phrase. People do like to pick one random thing to rally against. I know I’m not going to be in popular opinion here, but this is a little crazy. Do you know why women say that? Because they are being put on the spot and can’t think of anything else to say!! They are the ones being victimized. A random stranger can walk up to you and say, “Do you hope it’s a boy or a girl?” This only leaves the mom scrambling to come up with a decent response to a stupid question. So they pick the one thing that used to be a perfectly agreeable response: “It don’t matter, as long as it’s healthy! *huge, cheesy grin*” Maybe it’s not the best response, and I think women have started to realize that, but so often bloggers are attacking the moms that say that response. The real “baddies” here are the ones who initiate the awkward response, the ones who ask, “What’s better — a boy or a girl?” Instead of having some super long, overly emotional blog post about why we shouldn’t want our babies to be healthy, how about we encourage moms to respond a different way instead of making an issue out of nothing? We all want our babies to be healthy; that’s a given. But we would NOT love our babies any less just because they weren’t born “healthy”. That’s about as ridiculous as asking if you prefer a boy or girl.
I’m all for encouraging the moms struggling with an unhealthy child, whatever that may look like for them. But let’s not start bullying the moms who are already being bullied by stupid questions. Trying to be polite when you’re pregnant is hard enough as it is.
Danielle
I had two healthy children. Then I had a twin pregnancy. I was so excited and scared the thought of twins wow! Then at 19 weeks I had an ultra sound and my dr called me a few days later to tell me there was something not quite right at sent me to another gyno who told me that this was above her head. At this point I was so scared what was wrong with one of my babies we were sent to the city to see a dr there we spent the Hole day having tests done and waiting for all the other parents to talk to des to find out what was wrong with there babies. It went in order from best case to worst case sinarrio we were second last. We went into a tiny room filled with dr’s as they started to tell us all that was wrong with one of our babies. She had hydrocephalus (fluid on her brain) and Arnold chiari malformation is where the brain pulls down into the back of her neck and spina bifida. We were told that they usually would give a person the abourtion option but because she was a twin they could not. I wouldn’t have done it anyways. Over the next few months we were at the hospital every week monitoring the size of her ventricles if they had to much fluid they would have to take the babies early. There were so many tests and so many drs. I went into labour at 32 weeks that they were able to stop I was on bed rest till 37 weeks. They took them via c section. And took Adisin away right away. She had to have breathing tubes and be stable before her surgery that happened at a couple hours old that lasted 10 hours they had to close her back and try not to cut to many nerves. I didn’t get to see her till she was 36 hours old. At 5 days she had to have a shunt placed she spent 2 weeks in PCCU and then moved to the children’s floor where she spent a week” then we got to come home with a long list of appts. My daughter is a walker. They told us she never would walk. You would never know she was any different from any other child she has delays and that’s to be expected. She has a lot of bowel and bladder problems and is going to have surgery for that in the coming months she is almost 6 years old and has had 5 surgeries and many sedated MRIs my biggest thing I could say to other parents is to ask questions if you want to know something we will tell you as most of the time we want to share as most ppl don’t know all the different things children can be born with. Nd be mind full. Specially if you are family. I think it’s fantastic that you have potty trained you child at 2 but pleas know that it breaks my heart that my child is 6 and is not even close to being out of diapers so tell me once and I don’t want to hear it again cause while I appear happy for you my heart is breaking for my child.
Kristin
First of all, take “normal” out of your vocabulary with regards to children’s health. Try “typical” instead. Saying one child is “normal” and the other isn’t because they have a genetic issue or disease is polarizing.
My son was born 8 weeks early and spent 29 days in the hospital. He came home a mere 6 lbs and was on oxygen for four months. I had children staring at me when we’d go to the grocery store. Other mothers whispering “she must have smoked or done something wrong.” I even had an eight year old baby come up to me and say ” you’re baby is a freak and I bet they die.”
He is 2.5 now. While he is still a little small for his age, he is a typical child. No visible issues, no ticks or deformities. Yet when I needed grace and understanding from people we were harshly judged. Other mothers didn’t commend me for dealing with the NICU. They judged. They blamed me. Quite a few said I “cheated” by having an emergency c-section. While I appreciate your letter for what it’s intended, many “good Christian ” women treated me like a disease. Not a struggling first time mom to a preemie.
Janet
Our fourth (and unexpected) child was born with Prader Willi Syndrome. Her geneticist painted a bleak picture. Her first (and fired by me) endocrinologist told me to accept that she was special needs and to stop trying so hard and expecting too much. We did not listen. Ayden Jane has taken on the spirit of incredible optimism and has an uncanny confidence. Our friends rallied and just treat Ayden Jane as they do any typical child. Their patience to repeat things she didn’t catch the first time. Or to stop and answer detailed questions about whatever has caught her mind is such a blessing. Her stop and smell the roses personality is contagious and her view of the world unique. When my friends ask what they can do my answer is always to just include AJ and not be afraid of a diagnosis. Just enjoy her.
Lynn Wirth
As a mother who has had 5 children and 4 miscarriages, I have had to deal with some things seen and unseen. After getting through the 3rd month of my 3rd pregnancy in which I had started to bleed and have labor pains, it then stopped and it seemed we were in the clear. But at 4 1/2 months, my doctor did an ultrasound and found our son to be an anencephalic. I was told I could abort him but refused because I loved him regardless of his condition and could never kill my own child no matter what was wrong with him. I only wanted to be able to hold him, kiss him and tell him I love him before he died. Unfortunately he died 2 weeks before I finally went into labor and never got that chance. My 2nd child was a text book pregnancy, where a beautiful baby girl was born. The amniocentesis said she was perfect. Now 30, she suffers from fibromyalgia, OCPD and Celiac disease. My 3rd child suffers from bipolar disorder. Her amniocentesis said she was perfect as well. My 4th child is an epileptic and my 5th child is also an epileptic and has Asperger’s Syndrome. So you see most problems don’t surface until after a child is born. My point is, God gives us His special ones because he needs us to care for his children in all their different aspects of life and health. None of us will escape this life without trials. It’s up to us to decide how we plan to deal with them. I am grateful for every last one of my children, all “9” of them. Is life easy? No. Would I trade my trials with someone else who seems to have it easier than I. No. Be grateful for your children no matter what their physical or mental problems are. We can find joy each day in serving our families no matter how small or large that act is. Some day we will stand before our Maker and will be given thanks for caring for one of His special children.
Erin
Thanks so much for sharing your story, Lynn! It sounds like your children are beautiful and that they have a very special mother!
Jill
I was the mom that said as long as he was healthy…in fact now that phrase still doesn’t bother me, because I can relate even more to it. My son had meningitis and was in nicu for a month. He is now 4 months and we love him irregardless of any trials we may face ahead because of the brain damage.
I do not ask God why…because why not? At our stay at children’s, there were thousands of sick kids going in and out. I knew it wasn’t God but sin in this world.
We moms united together during our storm, praying for each other’s children.
Yes, there are days I still have weak moments but I pray for God to let that go and trust in Him.
As for advice… Don’t worry about looking at my child.
Don’t advert your eyes for fear your staring.
Don’t avoid coming near him for fear of seeing anything wrong.
Look at him as I look at him.
A beautiful ginger baby that was a blessing from God.
Don’t hush your children but explain to them that you don’t know what’s wrong but isn’t he cute?
He is no different then your child..because they are BOTH Gods children.
I dont say why me God, but thank you for him being here with me today.
cherise
Our son was born healthy but at age 8 was diagnosed with chronic pancreatitis and a carrier of cf.
He quickly became very ill and we nearly lost him. He had many operations, 9 in 9 months culminating in major surgery. An operation to by pass his pancreas, this had only been done twice before. When they opened him up his pancreas was calcified and like that of an 80 year old!
Thankfully the operation worked but he will always have this condition.
However this changed us forever. Our faith grew so much stronger. James is so on fire for God now. Someone asked us, knowing what you know now would you go through it again. You know what, yes I would. We learnt to appreciate the good days and pray through the bad.
If you know someone going through anything, just be there. I can still remember my countless phone calls to a friend from church when I couldn’t even speak, just cry …but knowing she was there was enough.
Kassy
a good article. Always something I cringed at. But there is a couple thoughts missing here. Some babies aren’t born. They are miscarried.
Some babies begin to grow but incorrectly and moms choose to carry their fatal pregnancy. They know that baby won’t be healthy and they also know that baby won’t be alive.
Crista Witherspoon
Thank you! I am a mom of 2 special needs children and I appreciate the words spoken here!
Kathryn Grainger
Being a mom is the hardest job I have ever tried. Being a mom to a special needs kid defies description. There are days when I just survive, days when it’s all I can do to give the bare minimum to my chronically-ill daughter and my healthy daughter. Other days, all the extras seem completely mundane, because we don’t know any differently. It’s just our family’ normal routine.
I think when you know someone with a special needs kid, you don’t need to say anything in particular. Just be there. Cry with them. Hug them and offer tissues. Words won’t help heal what’s broken, but friendship can help boost us when we are down.
Please check out my blog about having a special needs kid.
www.masterofnoneblog.com
Beyonka Holliday
Hi I have a child who is considered not born healthy. She was born with amniotic banding and that cut off the development of her hands and foot. It’s been alot for us with two surgeries and I had her 15 weeks early so God has definitely humbled my husband and I through all of this. I became a Christian in college and I lived a rough life sometimes I think it is my fault. But I’m reminded of the scripture where it says our God is not a God who paybacks sin. He redeemed it through Jesus Christ. I never really thought of how other people can minister to me. I think by encouraging me and not treating my child like she is weird and for some people who has a different worldview its hard for them to understand that my child was still made in His image. Im a young wife and mother so I even had people who calls themselves friends distant themselves from me because of my daughter’s condition. I would just love to have the courage to respond lovingly and understanding when I come across people and possibly children who doesnt know how to respond to seeing different people. Thank you for writing this. God has used you to encourage me.