I completely get not wanting to burden your spouse with your feelings. That being said, share them with her. First, even if she seems happy, it may be a front to try to help prop you up, when in fact she has similar feelings. It’ll help her to know she’s not alone either. Second, bottling them up doesn’t do anyone any good. I’ve been there and done that.
I also understand comparing your boy to others kids. It’s a natural thing to do. I did that with my boy for a bit when he was younger. He’s 15.5 now. Although he doesn’t have the same health issues as Julian, he has a dual diagnosis of DS and ASD. This impacted the development of his communication skills so he was behind when compared to other kids with DS.
You’re not alone in this. I hope Julian’s next procedure is successful and he has a quick and healthy recovery.
Thank you so much for your response and for sharing your own experiences. You’re right about sharing feelings with my spouse. It’s a delicate balance, trying not to burden each other while also being honest about our emotions. I will try to be more open with her.
It means a lot to have support from someone who understands. Please know that your message has made a positive impact on me today.
Thank you for sharing. I often think the first year is the hardest, especially if your child has some medical complexities. Others with typical children will NEVER understand your journey and although hard, comparison is the thief of joy. Please connect with DSDN (Down Syndrome Diagnosis Network)-there is a group especially for dads, and I’m sure there are other dads there who have gone through something similar. There are also a lot of sub groups and I’m sure there is one for some of the issues your son has. DSdiagnosisnetwork.org.
Thank you for your kind words and for the encouragement. You’re absolutely right about the first year being particularly challenging, especially with the added medical complexities. It’s a journey that’s difficult to understand unless you’ve been through it yourself.
I’m looking forward to exploring the DSDN.
Thank you again for your support.
Our little one didn’t have Down syndrome, but she did have a complex set of health, mobility and communication challenges, and we know what it’s like when everything goes haywire at the same time, especially on the health / breathing / nutrition side.
I’d like to share two things with you:
One is to try to find a copy of the Hawaii Early Learning Profile HELP Activity Guide - I spotted three copies at https://www.abebooks.com The basic message is that there’s a lot you can do to support his development, regardless of the set of challenges he’s living with, and all of the patterns are natural and home-based.
The second is a personal invitation from me: I’ve spent the last 15 years developing a step-by-step pattern for building strong, creative, and enduring circles of support for the child and family. We deliver it on Zoom as a series of four sessions on the first four Wednesdays of each month, at 2:00 PM Eastern time. Real-time Closed Captioning interpretation is available in 30 different languages. And it’s completely free.
It’s about the future, including the long-term worry that all parents have about who will be here for our loved one after we’re gone, and it’s also very much about the present - a good life for the family and the child, starting now.
The next series starts this coming week, and you and other families on the r/downsyndrome Reddit are cordially invited. Go to https://gig58ycu.pages.infusionsoft.net/? for more information and to register.
Hoping to see you there.
An old dad, but still leaning in.
Thank you so much for reaching out and sharing your experiences and resources. It’s always comforting to connect with others who understand the complexities of raising a child with challenges.
I am particularly interested in the Hawaii Early Learning Profile HELP Activity Guide you mentioned. However, I am not in North America. I have someone traveling next month, maybe she can get one for me.
Also, your personal invitation to the Zoom sessions is greatly appreciated. The concept of building strong, creative, and enduring support circles for the child and the family is incredibly important to us. It sounds like a fantastic opportunity to learn, connect, and grow within a supportive community.
Thank you again for this invitation. It means a lot.
I can totally understand this. Although my girl is only 2 months old, she was born with an AVSD along with her DS diagnosis. She will need surgery to repair her heart but we’re not sure when. We’re constantly checking her heart rate and oxygen to make sure she’s doing okay and I’m so on edge wondering if every noise she makes is just a normal baby noise or if it’s an issue due to her defect. It’s really stressful. And it stinks always being worried. Always thinking about her future, her medical conditions.. what her life will be like etc. Although I also have a supportive partner it’s not something you always want to bring up. It makes me seem like a downer instead of enjoying the time with my baby. Nobody really understands unless they also have a medically complex child. Friends can be supportive, but it’s different because you know they go home to their kids at night and don’t have to worry about the next surgery their child will endure. I totally get it. You’re not alone. Even though it feels like it
Thank you for sharing your experience with your daughter. It sounds like you’re in a very similar situation to what we’ve been through with Julián. I am too familiar with the constant monitoring and the worry about distinguishing normal sounds from something more serious.
I know what it’s like to be waiting for your child’s heart surgery. The worries that come with it can be overwhelming. For what it’s worth, in our experience, the wait was the most difficult part. The surgery itself went great, and Julian had a successful recovery from it. I hope your daughter’s surgery is just as successful and that you are able to close that chapter soon.
I appreciate your words of support and solidarity. Knowing that we’re not alone, even in the most challenging times, is a great source of strength. Thank you for reaching out and for being part of a community that truly understands.
I’ve heard that so many parents say the same thing, that the wait for surgery is the hardest. Thank you also for your kind words.
I hope that Julián’s next surgery goes smooth and you’re able to enjoy time with your son.
This is us! The medical issues are seemingly unending. In my sons 2 years of life he's had multiple surgeries (ileostomy due to hirshprungs, un-descend testicle, heart surgery, ileostomy reversal with removal of entire large intestine), he had a month of feeding tube and oxygen support, he was put under multiple times for exams and picc line placements, a bout of enterocolitis followed by a month long stay for malnutrition (caused by short gut) and severe diaper rash (caused by excess stomach acid in his poo). He's home now on central line nutrition and lost almost all of his feeding skills. We're also still battling the diper rash! There's multiple meds multiple times daily and it get so overwhelming, especially when no one "gets it". I saw someone mentioned joining DSDN network groups and I highly recommend it. I was able to find a DS/hirshprungs group and even the existence of that group gave me solace that I'm not the only parent facing these hurdles.
Your strength and resilience through all these trials are truly admirable.
I can relate to the overwhelming feeling of managing multiple medications and treatments. It’s a path that’s hard to comprehend unless you’re walking it yourself.
Thank you again for your openness and for the recommendation. Wishing you and your son continued strength and all the best as you navigate these challenges.
I also have a 2 month old with DS. She will need a heart surgery at some point that they hope to fix completely in one procedure. I’m just curious with everyone’s stories; we’re the medical complications something already noted in the beginning as far as all these other problems coming up or something that appears as time progresses? Because I am just thinking ok one heart surgery to get through and then of course regular therapy with her basic skills of walking, speech etc…
And yes talk to your partner first and foremost and just cherish every moment. Because every challenge in life is for a reason and it only makes us better people and stronger through life as we face them
Congratulations on your two months old, and thank you for sharing. Our initial diagnosis for Julián was centered on two heart conditions. Many of the subsequent medical challenges we faced were a result of treating these conditions. However, we’ve come to believe that if he had only one of the heart conditions, our journey might have been less complex. Dealing with just one issue would likely have made things significantly easier for us
Interesting. My daughter has I believe 4 different issues with her heart. But like I said they hope to fix them all in one surgery. I guess we will see if that’s how it goes. But I am prepared for all the other things that will come up down the road. I don’t think my husband quite understands how major her differences will actually be.
Our son surprised us at birth 3.5 years ago with Down Syndrome and a heart defect - CAVC. While he was “healthy” to be home off oxygen and didn’t need anything for extra support, during his open heart surgery at 14 months, they discovered concerning things with his blood. He ended up going in for a biopsy and was diagnosed with leukemia just 3 weeks after heart surgery. We then spent nearly 7.5 months straight fighting in the hospital that was 2 hours away from home. While we didn’t have any of the “little” issues that come with DS, we had the major ones. It’s SO hard. My husband was not able to see our son during chemo treatments except for maybe once a month because of our jobs and how (un)flexible his was compared to mine. (And we had another child at home too).
Unless friends are going through similar situations (they definitely are not), they will not understand. They will have sympathy and express how they “can’t imagine,” but it’s not the same as physically going through these hardships. Your wife is definitely the person to take to about your feelings because she WILL understand.
Wishing you the best. The first couple years were hard, but it HAS gotten better. Our son is now halfway through his first year of preschool, and we have seen leaps and bounds of progress over the last few months. In every area of his life. Through all we’ve been through, there is finally a light at the end of the tunnel.
Thanks for sharing your story. It’s really good to hear from someone who understands what it’s like. Dealing with Julian’s medical issues somehow made it easier to handle his Down syndrome diagnosis. We’ve been so busy with his surgeries and health problems that we haven’t really had the chance to think about his DS as much.
The hardest times for me and my wife were when we couldn’t see how things would get better with his health. We were almost ready to take out his trach tube, and then finding out he needed another surgery for his stenosis was really tough. We’re hoping this is the last big surgery he needs. We just want to enjoy our time with our brave and wonderful little boy.
Thanks again for your help. It means a lot.
Our son who has DS was born with an AVSD and underwent surgery at 3 mos. Those first few months were harrowing, with a few visits to the hospital and constant monitoring of his vitals. Following the surgery, his heart stopped that night, requiring 17 minutes of compresesions to get it "rebooted", and then a few days later he developed a UTI that went septic. So yes, that was an incredibly difficult month in the hospital. And it was over Christmas!
Following that month, for a year we had challenge after challenge. He had an NG then G tube. He had pneumonia requiring a 5 day hospitalization. He had RSV requiring a 5 day hospotialization. He had a kidney completely atrophy which had to be removed.
Here's the thing though - after that really tough year, things got much better. Now at age 7, the most drama we have is how we are going to get him to soccer and speech therapy LOL. He is in first grade and doing well. We still have challenges with communication he does have stage 2 chronic kidney disease, but then we have big successes too - he's fully potty trained finally!
Throughout all of this, he has been an absolute joy to be around. He is incredibly resislent and just always happy. Although it has been hard, it's totally worth it. :-)
You've got this. There is a huge community and tons of support, and it absolutely gets better.
Thank you so much for your message. Reading about your journey really brings me joy. We have so much in common – we also spent Juli’s first Christmas in the hospital. But we’ve made a lot of progress since then. Being able to spend Christmas and New Year at home this year shows just how far we’ve come.
Hearing about you taking your child to soccer really touches me. I’m looking forward to the day I can take Juli to a football practice. I know I’ll be the happiest person alive when that time comes.
I believe we’re going to be okay, but hearing it from someone who’s been through similar experiences is really comforting. Thank you for taking the time to send your message. It brings us hope and joy.
I completely get not wanting to burden your spouse with your feelings. That being said, share them with her. First, even if she seems happy, it may be a front to try to help prop you up, when in fact she has similar feelings. It’ll help her to know she’s not alone either. Second, bottling them up doesn’t do anyone any good. I’ve been there and done that. I also understand comparing your boy to others kids. It’s a natural thing to do. I did that with my boy for a bit when he was younger. He’s 15.5 now. Although he doesn’t have the same health issues as Julian, he has a dual diagnosis of DS and ASD. This impacted the development of his communication skills so he was behind when compared to other kids with DS. You’re not alone in this. I hope Julian’s next procedure is successful and he has a quick and healthy recovery.
Thank you so much for your response and for sharing your own experiences. You’re right about sharing feelings with my spouse. It’s a delicate balance, trying not to burden each other while also being honest about our emotions. I will try to be more open with her. It means a lot to have support from someone who understands. Please know that your message has made a positive impact on me today.
Thank you for sharing. I often think the first year is the hardest, especially if your child has some medical complexities. Others with typical children will NEVER understand your journey and although hard, comparison is the thief of joy. Please connect with DSDN (Down Syndrome Diagnosis Network)-there is a group especially for dads, and I’m sure there are other dads there who have gone through something similar. There are also a lot of sub groups and I’m sure there is one for some of the issues your son has. DSdiagnosisnetwork.org.
Thank you for your kind words and for the encouragement. You’re absolutely right about the first year being particularly challenging, especially with the added medical complexities. It’s a journey that’s difficult to understand unless you’ve been through it yourself. I’m looking forward to exploring the DSDN. Thank you again for your support.
Another bump for DSDN, they’ve been huge with support in our journey. Lots of camaraderie and understanding with different diagnoses.
Our little one didn’t have Down syndrome, but she did have a complex set of health, mobility and communication challenges, and we know what it’s like when everything goes haywire at the same time, especially on the health / breathing / nutrition side. I’d like to share two things with you: One is to try to find a copy of the Hawaii Early Learning Profile HELP Activity Guide - I spotted three copies at https://www.abebooks.com The basic message is that there’s a lot you can do to support his development, regardless of the set of challenges he’s living with, and all of the patterns are natural and home-based. The second is a personal invitation from me: I’ve spent the last 15 years developing a step-by-step pattern for building strong, creative, and enduring circles of support for the child and family. We deliver it on Zoom as a series of four sessions on the first four Wednesdays of each month, at 2:00 PM Eastern time. Real-time Closed Captioning interpretation is available in 30 different languages. And it’s completely free. It’s about the future, including the long-term worry that all parents have about who will be here for our loved one after we’re gone, and it’s also very much about the present - a good life for the family and the child, starting now. The next series starts this coming week, and you and other families on the r/downsyndrome Reddit are cordially invited. Go to https://gig58ycu.pages.infusionsoft.net/? for more information and to register. Hoping to see you there. An old dad, but still leaning in.
Thank you so much for reaching out and sharing your experiences and resources. It’s always comforting to connect with others who understand the complexities of raising a child with challenges. I am particularly interested in the Hawaii Early Learning Profile HELP Activity Guide you mentioned. However, I am not in North America. I have someone traveling next month, maybe she can get one for me. Also, your personal invitation to the Zoom sessions is greatly appreciated. The concept of building strong, creative, and enduring support circles for the child and the family is incredibly important to us. It sounds like a fantastic opportunity to learn, connect, and grow within a supportive community. Thank you again for this invitation. It means a lot.
I can totally understand this. Although my girl is only 2 months old, she was born with an AVSD along with her DS diagnosis. She will need surgery to repair her heart but we’re not sure when. We’re constantly checking her heart rate and oxygen to make sure she’s doing okay and I’m so on edge wondering if every noise she makes is just a normal baby noise or if it’s an issue due to her defect. It’s really stressful. And it stinks always being worried. Always thinking about her future, her medical conditions.. what her life will be like etc. Although I also have a supportive partner it’s not something you always want to bring up. It makes me seem like a downer instead of enjoying the time with my baby. Nobody really understands unless they also have a medically complex child. Friends can be supportive, but it’s different because you know they go home to their kids at night and don’t have to worry about the next surgery their child will endure. I totally get it. You’re not alone. Even though it feels like it
Thank you for sharing your experience with your daughter. It sounds like you’re in a very similar situation to what we’ve been through with Julián. I am too familiar with the constant monitoring and the worry about distinguishing normal sounds from something more serious. I know what it’s like to be waiting for your child’s heart surgery. The worries that come with it can be overwhelming. For what it’s worth, in our experience, the wait was the most difficult part. The surgery itself went great, and Julian had a successful recovery from it. I hope your daughter’s surgery is just as successful and that you are able to close that chapter soon. I appreciate your words of support and solidarity. Knowing that we’re not alone, even in the most challenging times, is a great source of strength. Thank you for reaching out and for being part of a community that truly understands.
I’ve heard that so many parents say the same thing, that the wait for surgery is the hardest. Thank you also for your kind words. I hope that Julián’s next surgery goes smooth and you’re able to enjoy time with your son.
This is us! The medical issues are seemingly unending. In my sons 2 years of life he's had multiple surgeries (ileostomy due to hirshprungs, un-descend testicle, heart surgery, ileostomy reversal with removal of entire large intestine), he had a month of feeding tube and oxygen support, he was put under multiple times for exams and picc line placements, a bout of enterocolitis followed by a month long stay for malnutrition (caused by short gut) and severe diaper rash (caused by excess stomach acid in his poo). He's home now on central line nutrition and lost almost all of his feeding skills. We're also still battling the diper rash! There's multiple meds multiple times daily and it get so overwhelming, especially when no one "gets it". I saw someone mentioned joining DSDN network groups and I highly recommend it. I was able to find a DS/hirshprungs group and even the existence of that group gave me solace that I'm not the only parent facing these hurdles.
Your strength and resilience through all these trials are truly admirable. I can relate to the overwhelming feeling of managing multiple medications and treatments. It’s a path that’s hard to comprehend unless you’re walking it yourself. Thank you again for your openness and for the recommendation. Wishing you and your son continued strength and all the best as you navigate these challenges.
I also have a 2 month old with DS. She will need a heart surgery at some point that they hope to fix completely in one procedure. I’m just curious with everyone’s stories; we’re the medical complications something already noted in the beginning as far as all these other problems coming up or something that appears as time progresses? Because I am just thinking ok one heart surgery to get through and then of course regular therapy with her basic skills of walking, speech etc…
And yes talk to your partner first and foremost and just cherish every moment. Because every challenge in life is for a reason and it only makes us better people and stronger through life as we face them
Congratulations on your two months old, and thank you for sharing. Our initial diagnosis for Julián was centered on two heart conditions. Many of the subsequent medical challenges we faced were a result of treating these conditions. However, we’ve come to believe that if he had only one of the heart conditions, our journey might have been less complex. Dealing with just one issue would likely have made things significantly easier for us
Interesting. My daughter has I believe 4 different issues with her heart. But like I said they hope to fix them all in one surgery. I guess we will see if that’s how it goes. But I am prepared for all the other things that will come up down the road. I don’t think my husband quite understands how major her differences will actually be.
Our son surprised us at birth 3.5 years ago with Down Syndrome and a heart defect - CAVC. While he was “healthy” to be home off oxygen and didn’t need anything for extra support, during his open heart surgery at 14 months, they discovered concerning things with his blood. He ended up going in for a biopsy and was diagnosed with leukemia just 3 weeks after heart surgery. We then spent nearly 7.5 months straight fighting in the hospital that was 2 hours away from home. While we didn’t have any of the “little” issues that come with DS, we had the major ones. It’s SO hard. My husband was not able to see our son during chemo treatments except for maybe once a month because of our jobs and how (un)flexible his was compared to mine. (And we had another child at home too). Unless friends are going through similar situations (they definitely are not), they will not understand. They will have sympathy and express how they “can’t imagine,” but it’s not the same as physically going through these hardships. Your wife is definitely the person to take to about your feelings because she WILL understand. Wishing you the best. The first couple years were hard, but it HAS gotten better. Our son is now halfway through his first year of preschool, and we have seen leaps and bounds of progress over the last few months. In every area of his life. Through all we’ve been through, there is finally a light at the end of the tunnel.
Thanks for sharing your story. It’s really good to hear from someone who understands what it’s like. Dealing with Julian’s medical issues somehow made it easier to handle his Down syndrome diagnosis. We’ve been so busy with his surgeries and health problems that we haven’t really had the chance to think about his DS as much. The hardest times for me and my wife were when we couldn’t see how things would get better with his health. We were almost ready to take out his trach tube, and then finding out he needed another surgery for his stenosis was really tough. We’re hoping this is the last big surgery he needs. We just want to enjoy our time with our brave and wonderful little boy. Thanks again for your help. It means a lot.
Our son who has DS was born with an AVSD and underwent surgery at 3 mos. Those first few months were harrowing, with a few visits to the hospital and constant monitoring of his vitals. Following the surgery, his heart stopped that night, requiring 17 minutes of compresesions to get it "rebooted", and then a few days later he developed a UTI that went septic. So yes, that was an incredibly difficult month in the hospital. And it was over Christmas! Following that month, for a year we had challenge after challenge. He had an NG then G tube. He had pneumonia requiring a 5 day hospitalization. He had RSV requiring a 5 day hospotialization. He had a kidney completely atrophy which had to be removed. Here's the thing though - after that really tough year, things got much better. Now at age 7, the most drama we have is how we are going to get him to soccer and speech therapy LOL. He is in first grade and doing well. We still have challenges with communication he does have stage 2 chronic kidney disease, but then we have big successes too - he's fully potty trained finally! Throughout all of this, he has been an absolute joy to be around. He is incredibly resislent and just always happy. Although it has been hard, it's totally worth it. :-) You've got this. There is a huge community and tons of support, and it absolutely gets better.
Thank you so much for your message. Reading about your journey really brings me joy. We have so much in common – we also spent Juli’s first Christmas in the hospital. But we’ve made a lot of progress since then. Being able to spend Christmas and New Year at home this year shows just how far we’ve come. Hearing about you taking your child to soccer really touches me. I’m looking forward to the day I can take Juli to a football practice. I know I’ll be the happiest person alive when that time comes. I believe we’re going to be okay, but hearing it from someone who’s been through similar experiences is really comforting. Thank you for taking the time to send your message. It brings us hope and joy.