u/blondebijou

I will try to keep this as short as possible because I feel as though there is just too much to say but here goes— my journey to motherhood has been nothing less than a nightmare. Very healthy pregnancy which led to a surprising traumatic delivery where I hemorrhaged and my son stopped breathing. We were transferred to a NICU due to a suspected case of HIE. There he was given an MRI that showed no brain damage, however it did show markers for a rare genetic disorder. He was then hooked up to an EEG where we discovered he was having subclinical (silent) seizures. This is when we were transferred to yet another NICU three hours away where we stayed for a month while the doctors were able to successfully find the right cocktail of medication to make his brain calm down.

Once home we began our developmental journey that I knew we were already behind on as the first few weeks of his life he was hooked up to a million wires and I was barely allowed to even hold him. The disorder he has ranges from mild enough people don’t know they have it all the way to severe enough that people are very impacted and unable to live an independent life. I’ll never forget the doctor telling me that my son “could be absolutely normal or very mentally retarded, but won’t be able to tell until he’s at least 4”. This disorder automatically qualified him for Early Intervention and we began PT at just 3 months old followed by OT and Speech. He was able to progress, though slowly, and hit all his milestones. At our 12 month check in with his developmental pediatrician we were told he was “age appropriate” and I’ll never forget how happy I was leaving that appointment.

Fast forward to today— he is 18 months old and significantly delayed. Gross motor wise, he began to walk about two weeks ago but still prefers to crawl. Fine motor is, well, fine. But speech….. speech is horrible and he does not say a single word outside of the occasional “mama” that he babbles. Receptive is just as bad. We went for his 18 month visit yesterday with the same developmental ped and she agreed that he has basically shown no progress in speech since our last visit nearly 6 months ago. When I brought up the idea of autism, she agreed he has some traits but said that it would be “malpractice” for her to diagnose him because he is so socially receptive and engaged (eye contact, doing things and looking for a response, responsive, etc). While it felt good to hear she did not believe he was autistic, I was left with mixed feelings because if he were to be autistic I would much rather know now and be able to get him into ABA rather than wait for a diagnosis down the road.

My heart is just so heavy and I can’t remember a time where I felt happiness without it quickly being overshadowed by sadness and fear. I know everyone prays for a healthy baby, but I went above and beyond. I begged the doctors for extra scans, just to be SURE, if there was a show on tv that had anything to do with a disabled child I would quickly turn it off because I didn’t want to “jinx” it….this has always, and I mean ALWAYS been the biggest fear of mine after growing up with a severely disabled aunt. After seeing everything first hand, I vowed to never have children if that was a possibility…. Clearly I went back on that vow and it is hard to feel as though I am not being punished for it.

All my son’s therapists say he is progressing and doing great, but his “great” is nothing compared to other kids his age. I am well aware how horrible I sound saying all of this and that plays into my misery as well. I don’t feel as though I am half the mom I thought I would be and that breaks my heart.

I just want to know there is hope for my son to still live a normal life. To still catch up. Hell, I don’t care if I need to get him extra help or pay for extra services, I really don’t. I’ll go to hell and back. I just need to know he has a chance.

I will try to keep this as short as possible because I feel as though there is just too much to say but here goes— my journey to motherhood has been nothing less than a nightmare. Very healthy pregnancy which led to a surprising traumatic delivery where I hemorrhaged and my son stopped breathing. We were transferred to a NICU due to a suspected case of HIE. There he was given an MRI that showed no brain damage, however it did show markers for a rare genetic disorder. He was then hooked up to an EEG where we discovered he was having subclinical (silent) seizures. This is when we were transferred to yet another NICU three hours away where we stayed for a month while the doctors were able to successfully find the right cocktail of medication to make his brain calm down.

Once home we began our developmental journey that I knew we were already behind on as the first few weeks of his life he was hooked up to a million wires and I was barely allowed to even hold him. The disorder he has ranges from mild enough people don’t know they have it all the way to severe enough that people are very impacted and unable to live an independent life. I’ll never forget the doctor telling me that my son “could be absolutely normal or very mentally retarded, but won’t be able to tell until he’s at least 4”. This disorder automatically qualified him for Early Intervention and we began PT at just 3 months old followed by OT and Speech. He was able to progress, though slowly, and hit all his milestones. At our 12 month check in with his developmental pediatrician we were told he was “age appropriate” and I’ll never forget how happy I was leaving that appointment.

Fast forward to today— he is 18 months old and significantly delayed. Gross motor wise, he began to walk about two weeks ago but still prefers to crawl. Fine motor is, well, fine. But speech….. speech is horrible and he does not say a single word outside of the occasional “mama” that he babbles. Receptive is just as bad. We went for his 18 month visit yesterday with the same developmental ped and she agreed that he has basically shown no progress in speech since our last visit nearly 6 months ago. When I brought up the idea of autism, she agreed he has some traits but said that it would be “malpractice” for her to diagnose him because he is so socially receptive and engaged (eye contact, doing things and looking for a response, responsive, etc). While it felt good to hear she did not believe he was autistic, I was left with mixed feelings because if he were to be autistic I would much rather know now and be able to get him into ABA rather than wait for a diagnosis down the road.

My heart is just so heavy and I can’t remember a time where I felt happiness without it quickly being overshadowed by sadness and fear. I know everyone prays for a healthy baby, but I went above and beyond. I begged the doctors for extra scans, just to be SURE, if there was a show on tv that had anything to do with a disabled child I would quickly turn it off because I didn’t want to “jinx” it….this has always, and I mean ALWAYS been the biggest fear of mine after growing up with a severely disabled aunt. After seeing everything first hand, I vowed to never have children if that was a possibility…. Clearly I went back on that vow and it is hard to feel as though I am not being punished for it.

All my son’s therapists say he is progressing and doing great, but his “great” is nothing compared to other kids his age. I am well aware how horrible I sound saying all of this and that plays into my misery as well. I don’t feel as though I am half the mom I thought I would be and that breaks my heart.

I just want to know there is hope for my son to still live a normal life. To still catch up. Hell, I don’t care if I need to get him extra help or pay for extra services, I really don’t. I’ll go to hell and back. I just need to know he has a chance.