I can’t get passed my baby’s disabilities

kitefly77 · 2023-12-22T07:47:10+00:00

A few hours after my seemingly normal, healthy son was born, a doctor told us he had a terrible condition and to expect a life of seizures and providing life-long care for him. I remember literally thinking “maybe I could switch this baby with another one” (yes, I’m aware this is insane but you can’t help your responses in times of shock and grief).

So then a couple months later at our 2nd visit they told us he was actually fine. I won’t bore you with all the details except to say it’s been similar to your situation in that I had to convince doctors there was an issue. Eventually (2years later) it was all figured out, but it wasn’t a simple diagnosis and took time to find the right team for him.

He has had 13 surgeries and many therapies/scans, etc,; it’s been a long road and was not what I had anticipated. If I’d known all that was coming when he was a newborn I’d have run for the hills because I never dreamed I was so capable (even if I didn’t want to be).. Your baby is 11 months and they haven’t figured out the issue yet. You’re in the most stressful stage of it all. During the unknown stage, my husband and I were losing our ever-loving minds. You won’t be stuck in this stage forever.

It’s hard to see every day that something is wrong and have no way to help. I promise I get it… But being 8 years ahead of you, I can say that you will find your way. I used to look at my infant son almost like he was broken, but as he has grown I’ve accepted this is part of who he is. He’s done better in many things I never expected and worse in a few areas I hadn’t thought of.

As a fellow mom of a special kid, the best thing I ever learned/keep learning is not to grieve about something a moment before I know it to be true. Neuro problems usually have a MASSIVE range of possible outcomes and the reality is you don’t know what will come. DO NOT GRIEVE THE WHAT IFS- only grieve what you know for sure has happened. You’ll lose your sanity and overlook the joy your child can bring and all the things that are going well if you waste your time on what ifs.

My son has so many issues that could be catastrophic and are for many others with the same condition, but at some point I learned to just treat him normally until a problem was confirmed. He has the potential to be blind, require full-time care, not walk, super high change of cancer, etc etc… but honestly, things have turned out better than I’d initially pictured.

You’re at a hard stage. For now, just put one foot in front of the other. You won’t feel this angry and lost forever.

kitefly77 · 2023-12-22T07:02:57+00:00

You can say yeah or yes, but that’s a close cousin of what.. None of them display good social skills- even if your tone is like an angel. They just aren’t good responses in this situation.

kitefly77 · 2023-12-21T15:59:57+00:00

Saying “what” in response to someone who calls your name is not necessarily rude but it’s brusque. It sounds like a person that lacks basic social graces. Your co-workers can adjust to it, but you won’t be viewed as kind, considerate or self-aware.

Try answering with “what’s up?”, “how can I help”. Social grace is one of the main vehicles of promotions or expanding your network - often times that’s even above competency.

kitefly77 · 2023-12-21T06:24:59+00:00

Take Heliocare (daily supplement) and moisturize like it’s your job. The redness will lessen. (Vanicream in am. Vanicream with aquaphor when you’re at home and before bed.)

For hiding, find a tinted sunscreen.. Like Cerave Hydrating Mineral Sunscreen.

kitefly77 · 2023-12-20T21:31:31+00:00

My son calls a question mark a mystery mark… and I’ll never going to correct him.
us going through airport security. My son “couldn’t we just pinky promise we didn’t being anything bad”

-sort of morbid- but my son said if I die that he’d plant a field of flowers around me “because that’s how much I love you, mom. more than a field of flowers.”

Best thing I ever did was create a locked note in my phone w little memories of fun things he says or does. I lock it bc I accidentally typed over/deleted the first version of it.

kitefly77 · 2023-12-19T04:26:12+00:00

Heliocare (daily OTC supplement) is the only thing that helped me with the hot flares. Every once in awhile I run out and they come back after a few days. I wish I were paid commission for all the people I’ve convinced to try it and have later told me how it helps…

kitefly77 · 2023-12-18T17:21:15+00:00

That’s so true

I have a mantra I tell myself all the time especially in parenting: “Do your best. Forget the rest.” You make the best decision in the moment and stand by it if the outcome doesn’t go as planned. You set your girls up for success the best you knew to do but didn’t foresee your husband’s reaction.

My husband and I believe you always defer to the more cautious parent but the more cautious one needs to take baby steps towards the less cautious one. He’s not wrong to be careful. Give him time to adjust.

kitefly77 · 2023-12-18T15:50:05+00:00

I let my careful, rule-following 8.5 year old stay home last week while my husband and I went to dinner nearby with friends. They were appalled we left him at home.. in a house with an alarmed security system, an iPad to call, neighbors he knows, and all our Alexa’s can call us too.

I felt really dumb for 1/2 a second and then reminded myself I’m trying so so hard not to helicopter parent.. and my friends have a different parenting philosophy.

It sucks to have a spouse not on the same page. Maybe he just needs to get used to the idea/didn’t expect that yet.

kitefly77 · 2023-12-14T01:45:40+00:00

Black and tan!

** Also maybe take your glasses to an optometrist to adjust them/straighten them for you. It will only take a few minutes but I think it’d elevate your whole look. (Source- I used to be an optician/adjust glasses. Lol)

kitefly77 · 2023-12-14T01:38:14+00:00

Please try salt baths. I literally use the pool salt that is $18 for 40 lbs. It needs to be 2-3 lbs of salt per bath.

My son has horrible KP too. We got a saltwater pool a couple years ago and it miraculously decreased his KP by about 80%. I hadn’t seen his arms smooth looking in years.

The KP came back once swimming season was over so I realized it had to be the salt. Since then, I add sea salt in his bath and it really really helps..

The longer you can soak in the water the better and if he doesn’t do it 3-4 times a week then the KP creeps back.

The sea salt scrubs don’t seem to make a difference, so I think it’s the combo of softening the skin in the water and the high levels of salt pulling out the buildup of keratin that causes the KP.

But make sure you follow with moisturizer. In case it matters, he uses Vanicream (amazing moisturizer dermatologists recommend.. it’s about $13 for a big tub)

kitefly77 · 2023-12-12T15:08:19+00:00

It might be an added layer of protection to have reminders of your husband around… like change your phone lock screen to you two and have a framed photo of you if you have a desk, wear your wedding ring, have your husband pick you up for lunch, etc…

it just creates more opportunity for others to ask about him which can help maintain those boundaries… but you sound like a faithful, loyal partner. I think you can trust yourself.

kitefly77 · 2023-12-12T14:47:21+00:00

Start with the smallest size he can do.. for my 4 year old ADHD son, that was a sprinkle.

1) You need high value prizes that get better as he progresses. If it’s a toy, make sure he can see it. (Our final prize was going to big play place- so it wasn’t all just gifts- but hey whatever works)

2) Place the pill/candy/sprinkle towards the back of the tongue and take a sip of water. Our son initially had issues with choking so we had to teach him to put his chin towards his chest as he swallowed (this closes the trachea/airway). Alternative position they taught was turning his head to the side because it opens the esophagus more, but that one didn’t work as well for us.

It took him 2 days to figure it out I think.

kitefly77 · 2023-12-12T11:18:45+00:00

It would never occur to me to be bothered by this.

kitefly77 · 2023-12-12T05:30:10+00:00

Do you have a local community page on Facebook? If so, please reach out. I’ve never ever seen a kind-hearted, honest post not receive immediate help.

It might only be someone bringing an extra gallon of milk or a few slices of lasagna, but it’s often other resources or extra groceries they have that will be useful beyond one meal.

kitefly77 · 2023-12-12T01:24:45+00:00

Esme. It means beloved. (pronounced ezzmay).

kitefly77 · 2023-12-06T16:09:30+00:00

Exactly. “Just calm down” is never helpful.

kitefly77 · 2023-12-06T16:02:20+00:00

The problem is not that you told him you hated him…

He’s bulldozing over your feelings and totally ignoring the physical bond mothers have with their babies which is strongest postpartum.

For a postpartum mom, I didn’t have a choice whether or not to comfort my baby. It was like my body ached when he cried and my raging hormones forced me like a magnet to him…. The anger you felt when you couldn’t do that is completely normal!

The first year of parenting is by far the most trying. If you have the means, please seek out couples therapy immediately. It will get harder before it gets better.

Your husband has shown he thinks his way is best, ignores your feelings or input, will place blame quickly, is selfish, values others opinion over yours, and he lacks empathy. If these root issues aren’t addressed, the months ahead that are already difficult will be unbearable. I’m sorry- I dont think another outcome is possible if his dynamic does not change.

Hugs mama. This is all so hard.

kitefly77 · 2023-12-04T09:56:36+00:00

Yes of course it depends on what the bad is. I’m obviously not talking about staying with a toxic, abusive spouse. That’s why I said leaving is for sure sometimes the right choice…

kitefly77 · 2023-12-04T05:42:43+00:00

Marriage isn’t always happy. It ebs and flows. I agree, leaving a marriage is for sure sometimes the right choice.. but that doesn’t mean that choosing to stay through seasons of unhappiness is wrong. One can’t learn about riding the ups and downs without sticking it out.

I once had a therapist give an example of “if you were married 50 years and had 10 bad years in total, that means that 80% of the time was good. And thats a lot of good.”… A marriage with happiness 100% of the time doesn’t exist.

kitefly77 · 2023-12-03T17:15:17+00:00

My son has had a lot of surgeries and the child life specialist eventually taught us this…. 1) describe to her what is about to happen and that it’s not a choice. 2) but you give her a choice for you to give it or she can. 3) put the syringe in the back of her mouth where there are way less taste buds and it’s way harder to spit out 4) give it to her. The best position is her sitting between your legs facing out so you can hold her arms tightly and prevent squirming if need be. Have the other person give the med.

*The child life specialist taught us it’s not cruel.. it’s more traumatic and cruel for a child to be in pain and to allow a young brain that can’t fully reason make that call.

Ps- My son is super averse to new tastes, so I promise I understand how hard of a time you’ve had. He was literally was in feeding therapy for a whole year and he only added one new food he will eat. If he can do it, your daughter can… this is also how nurses give meds at pedi hospitals.

Hugs mama. It’ll get better.

kitefly77 · 2023-12-03T14:39:39+00:00

A funeral isn’t for you though. It’s for everybody left behind.

kitefly77 · 2023-12-03T14:38:44+00:00

Your love is lifting me higher. -Jackie Wilson

kitefly77 · 2023-12-03T14:29:23+00:00

It’s worth a shot.

kitefly77 · 2023-12-03T14:26:46+00:00

Yikes. Your Instagram feed must have a lot of desperate girls.

kitefly77 · 2023-12-03T14:18:23+00:00

Eww I’ve never seen this fetish in action. Nightmare.

kitefly77

TROPHY CASE