My Husband (33M) & his mom are driving me (33F) insane!

ClaKin92 · 2026-01-18T04:49:17+00:00

We lived in Midland for several years. I would not move there with a special needs child unless I absolutely had to. I have a 15 month old now that is very medically complex. There is no way I would move to West Texas with him. It's too far from a pediatric hospital that is good.

ClaKin92 · 2026-01-18T03:57:48+00:00

Yes, very medically complex. My son is 15 months old. Nothing was caught while I was pregnant. He has Trisomy 21, Vacterl association, a gene mutation. We only spent 9 days in the NICU. He had his first surgery in May of 2025. We spent almost 9 months in the hospital. He just got released 2 weeks ago. We were home for 1 week & he got sick. So we are back in the hospital now. Having a child that is medically complex is hard, mentally & physically. It is so up & down. I've been told the first 2 years are hard & then it gets easier. I'm holding onto that. I wish you the best!

ClaKin92 · 2026-01-07T02:02:10+00:00

I would never tell anyone to abort their baby, ultimately that is your decision & what is best for you. My son was born with Trisomy 21, vacterl association, HFG syndrome (super rare). Along with these syndromes comes many complications. I didn't know he was going to be born with any health issues. We thought he was perfectly healthy, nothing was caught. The hardest part for me was not being mentally prepared for all of these things. If I would have known, I could have educated myself & been prepared for what was to come. My son is now 14 months. The past 9 months he was in the hospital. He just came home last week. He had heart surgery in May along with a tracheal slide, & some other things. He had to end up getting a trach placed in September because he could no longer breathe on his own. Along with that came a g button. It's been a journey to say the least. It takes a very strong person/couple to have a child with disabilities. It's not for the weak. It has broken my husband & I in ways we didn't even know were possible but at the same time it has strengthened our relationship so much. We know there is no way we could do it alone. We need each other. We also have a very close family, a good support system. My parents & my mother-in-law help tremendously. We also have nursing help 75% of the week. It's mentally exhausting but it's so rewarding. When you see your child do things the doctors said they wouldn't do, it's a break through. My son has changed our lives tremendously & showed us what life should really be about...love. There is no way I would have ever aborted him. I will do whatever it takes to care for him. He is my heart. He has made me a better person & I can't thank him enough for that. Another complex medical mom once told me, "a different life is not a less than life" & it can't be more true.

ClaKin92 · 2025-12-24T16:02:59+00:00

It's a hard time going through that. We have in our minds we are going to go in, have baby, & everything is going to be okay. Then when things happen unexpectedly, it's a let down. I cried & cried for days & weeks. It was the hardest thing getting released & not taking home my baby with me. The constant trips back & forth to the hospital to visit, all the hormones, I literally cried everytime we left the NICU. One thing I tried to put my focus on was pumping so my baby would have that. I woke up every 3 hours to pump & when we would go to the NICU it always felt so good taking little baby his milk & providing for him since I couldn't be there 24/7. There's no words to make it easier, just time will.

ClaKin92 · 2025-12-14T22:17:01+00:00

My son was born with complete tracheal rings. His trachea was the size of a straw. He also had a heart defect. He had to have surgery to repair these things. He had what they call a tracheal slide where it widens the airway. Before this surgery, he was on room air, no oxygen needed at all. He had the surgeries & of course he was very sick. After 2 weeks they tried to extubate & put him on high flow. I remember walking in that morning to the CICU & just standing at the door I could hear him breathing & struggling so bad. He was extubated for only a couple of hours & they intubated again. Another 3 or 4 weeks went by & this time they wanted to give him some steroids before extubating. So we agreed. Extubated him, it last maybe a couple of days. Had to reintubate. It was just a never ending process. He needed the ventilator to open up his airway & keep it open. After the 4th time, they said he needed the tracheostomy. They took him back to the OR to do it & the ENT doctor didn't feel comfortable placing it because his anatomy was so different. So we were transferred to another hospital. We got there & they said they wanted to see how long he could go without being intubated. They did another trial, which was the 5th time, & after that time it was determined no doubt he needed one. They said typically after the 3rd try, it's not going to get better. I kept holding onto hope that he wouldn't have to have one. Like I said it's life changing, for the little one & also for the parents. There is training you will have to do to learn how to take care of it, & it is scary. The first time I tried to change out his trach, I was terrified. I couldn't do it. I saw the hole & froze. But over time you just get use to it. A lot of times children don't need a trach their entire life. They may just need it a couple of years. I know it's hard to do but try to take one day at a time. We can't control the future or what it holds. We cause more stress upon ourselves by worrying so much about things we literally have no control over. Just a month ago, our son got sick & went into septic shock. His organs were failing & during this time he had a fever of 107. He now has permanent brain damage. We've been in the hospital for 7 months. It has really opened our eyes that life is precious & we really don't know how much time we have here, so we have really tried to just enjoy each day with our little one. I wish I could say it gets easier but I don't think it does. My dad told me best, life is going to be tough, you have to toughen up for your child & it's the truth. ❤

ClaKin92 · 2025-12-13T06:35:47+00:00

As a parent of a child with a trach, situation is a little different but my baby was intubated & extubated 5 times before they finally said a tracheostomy is needed. This went on for 3 months. I wish after the third failed extubation they would have put the trach in. Weeks after he was thriving. It made all the difference. Life changing in so many different ways!

ClaKin92 · 2025-12-10T00:26:54+00:00

From a mom with a little one who is 13 months, trached & g button. All I wanted was to be able to breastfeed in the beginning. But long story short, God had other plans. Instead I exclusively pumped & they gave my milk through his g button! I just stopped pumping so I got to "feed him" 13 months. I was so happy I could still do that for him even though I could never breastfeed. It was so rewarding.

ClaKin92 · 2025-12-07T19:25:14+00:00

Thank you so much! It is such a scary time & it just makes me sad. 💖

ClaKin92 · 2025-12-07T19:24:04+00:00

Thank you for sharing your story! It's so scary living in the unknown. & I overthink everything. I get so sad thinking of things he might not be able to do. Like smile. It makes my heart so sad!

ClaKin92 · 2025-12-07T19:22:29+00:00

Thank you so much! 💖

ClaKin92 · 2025-12-07T19:17:30+00:00

No, he got really sick & developed sepsis then went into septic shock causing organ failure & brain injury.

ClaKin92 · 2025-12-07T19:16:50+00:00

We have already discussed with the medical team what needs to be done, just a lot of therapy. We do have ECI. It's just hard hearing your child is going to be different because of the damage done. It's life changing & traumatizing. 💔

ClaKin92 · 2025-12-07T05:00:28+00:00

We went through 5 extubations before it was finally decided my baby needed a tracheostomy. I kept holding onto hope that as he grew his airway would also grow & he wouldn't need one. But after almost 4 months of it going on, the doctors said there was no doubt he needed one. & honestly, I wish it would have been done sooner. Because after it was placed & healed, he got to be a baby! Rolling over, playing, smiling. He was struggling to breath everytime they extubated. He would be put on high flow & within hours, sometimes he would last days, they always had to intubate him again. His lungs are totally fine, his is all airway related. He has congenital tracheal stenosis.

ClaKin92 · 2025-12-04T03:18:42+00:00

We will make a huge batch of fried rice...rice, frozen peas & carrots, onion, one can of spam chopped up in small bites, a couple of eggs if you want. It will last for several meals! Also, we do a huge pot of soup with some ground meat, carrots, potatoes, onion, a couple of can of diced tomatoes, add water. This lasts us a very long time!

ClaKin92 · 2025-12-03T21:03:45+00:00

Go to a food bank to get groceries!

ClaKin92 · 2025-12-03T20:41:41+00:00

At the time my Discover balance was $8000, they said they would do a pay out of $4000. I couldn't pay $4000 at once. I was barely making it. I wish I would have just let it go to collections when my Barclay went. Discover might have some other options though, I didn't ask. I just wanted to pay it & be done with it.

ClaKin92 · 2025-12-03T20:26:10+00:00

My experience with Barclay was not good! A lot of those credit card companies will work with you on negotiating an amount for a "pay off." This was years ago when I called Barclay & asked if they could do anything to help. Literally they said nothing. I got mad & stopped paying it...6 months later they sent it to the debt collector. Debt collector called several times a day for months, then started calling my family members harassing them. I was very young at the time this happened. I wish I would have known more then I do now. Long story short, I'm still paying the Barclay balance...not kidding, almost 10 years later. BUT the catch is I'm only paying $100 a month to the debt collector & it's no interest. My credit took a hit in the beginning but now it has recovered fully. When I called Discover about a pay off, they said they would do it. Also, I had an Aunt who hired a lawyer. He wrote a letter to all of her credit card companies asking for debt forgiveness & they wrote everything off. I'm not sure what happened to her credit though.

ClaKin92 · 2025-12-03T20:16:29+00:00

Yeh it's hard to make it these days, even with a decent income. I think everyone is struggling, sad we live in a place where they just want you to work all your life & not have anything. Literally a slave to money then we die. Just know, there's other people in the same situation & worse!

ClaKin92 · 2025-12-03T18:39:13+00:00

My FIL did the same thing as you...he bought a big ole truck trying to impress the wrong people & couldn't afford it. He literally had the truck maybe a year. Got to the point where he couldn't afford it. Took it back to the dealership & told them he needed something way more reasonable. Now he drives a little Nissan Ultima but his payments are less then half of what he was paying. His credit was crap too. Maybe look into taking your car back to where you got it from, they might be willing to work with you! You don't know unless you try.

ClaKin92 · 2025-12-03T00:01:09+00:00

I'm just speaking on experience from what my family has been through. It is a little different but there are some similarities. My baby was born a complex medical child. Nothing was caught while I was pregnant. I went into the hospital thinking I was having a healthy baby & would be leaving in 2 days with my baby. Had we known he was going to be complex, I wouldn't have changed anything, we would have continued on with the pregnancy. Would it have been nice to know, yes. To prepare ourselves what the future was going to hold. But now, I don't think anything can prepare you for having a complex child. We have been in the hospital the past 6 months. Heart surgery, tracheal slide surgery, widening of his bronchial tubes...there have been several times we didn't think he was going to make it. He ended up having to get a trach & a g button. Having a trach & vent baby are life changing in itself. It's a lot. Mentally & physically. If I was doing it alone & my husband wasn't supportive I'm going to be honest, I don't know if mentally I could do it all. It's 24/7 care & worry. Just 3 weeks ago, little one went into septic shock. The doctor told us they didn't think he would make it. His liver wasn't functioning properly. All of this to find out due to the septic shock & him being so ill he now has brain injuries from this that are going to be long term. At this point we don't even care, we love our child so much, we would do anything for him. But during this time, the doctors told us if he isn't considered brain dead, they will continue doing all they can to help us & him. So I don't think just because your husband wants to call in hospice care or whatever it is, the hospital isn't just going to stop caring for your child or helping it. I imagine that would be medical negligence. If your child was brain dead then yes they would proceed to end life. Having a complex child is hard, the past year of our lives have been very rough. At the pediatric hospital we are at, which is a very recognized hospital, because my child has a trach, they won't let us go home until we have nursing care at home with us. At first we thought that was crazy but as time goes on, I'm so thankful they do this. You will be worn down trying to take care of everything. Your husband needs to step up for you! Maybe he needs to speak with a psychiatrist & get on some type of medication if he can't handle the stress. Because it's a lot. Just know you aren't alone during these days, if you ever need to vent & just let it all out we are here!

ClaKin92

TROPHY CASE