When your child is discharged after long-term health issues

amother

Wed, May 15 2024, 12:38 pm

Wonder if anyone can relate to this, the fear when your child has been ill for a long time, then finally discharged. I thought I'd be thrilled, and I was, but I was scared without the medical teams for support. Then one day you suddenly realise 'hey, it really does end, this fear!'

My dd, now 8, had many medical issues from birth. We were literally busy night and day with hospitalisations, both long and short. Some close to home, some not so. We dealt with umpteen appointments and specialists, PICC lines, IV medications, NGs and PEGs, feeding pumps, broncoscopies, colonoscopies and all sorts of other 'oscopies'. Blood tests, x-rays and MRIs. We had middle of the night emergencies with low oxygen, medications and dehydration.
But somehow, we coped. During every Yom tov, holiday, and Simcha, even our own son's bar-mitzvah and daughter's chasuna we had to be prepared for all eventualities. We had a great team of doctors (thank you Dr. S!), specialists and nurses both at home and at the hospital who were there for us 'round the clock.

Then BH, as our daughter got older and stronger, we realised that Be'H we are going to be discharged and we couldn't wait for the day. We knew that she will always have more needs then the average child, but we would no longer be in a constant state of business and emergency. But to our surprise, it wasn't easy. We found we were very nervous about every little thing, but no longer had the security blanket of calling for advice. It was hard to rely on ourselves when we had expert care for so long. (Again, thank you Dr. S. for always being on the end of the phone, and never making me feel like 'one of those nudgy mothers'!). And of course we felt guilty, after all, shouldn't we be grateful that our child was better and we were finally back to normal.
But, like everything in life, with time, we got there. Both with our confidence as 'parent carers' of our child, and in gratitude to The One Above.

Hope you are still following...

But then it happens! I finally realised that we're in a 'normal' place, when her needs are just part and parcel of life, not all encompassing anymore.
This struck me the other day when I asked my boss , the principal of the school where I work, if I can leave early as I had an appointment for said DD. She asked me if everything was ok as I'd had a couple of appointments recently for which I'd had to get cover for. (She was in the know as I had kids in the school when things were at their hardest). I said Yeah, nothing more then a week in the life of my Sari!
If I were to put it poetically, it would be like this,
-Raizy (my oldest DD) calls to ask if it's normal for her baby to have fever when teething,
-Shloimy calls to let us know when his son's opsherin is,
-Don't forget to call the Shadchan back for Rivky,
-Esti's out of bed AGAIN!
-Zevi needs a shirt ironed for tomorrow,
-Pick up Malki and Yitzy early from school for their dentist apps,
and
-OH! Sari's blood tests are in, and her oxygen is a little low, but no action needed. It's just 'another thing to deal with.

A long ramble, I know, but wonder if anyone can relate to the 'three stages'?

amother

Blue

Wed, May 15 2024, 1:10 pm

I absolutely can relate.

When we were *finally* discharged after a 3 month hospitalization I was so panicked being in charge that I drove him back to the hospital on shabbos and had him admitted. In hindsight there were some concerns, but nothing that couldn't have waited for clinic on Monday.

Integrating back to normal life was weird. It took a few years to stop feeling like the other shoe was about to drop.

It's 9 years later now and honestly I still feel lost at times. I wish there was someone coordinating his care instead of me having to be on top of everything myself.

Oh, and I still never leave things for erev shabbos or yt. What if someone's gonna need and ER visit?

amother

Ballota

Wed, May 15 2024, 1:16 pm

I could honestly cry. Someone really understands me!? I’m so protective over her. After everything, we woke up to behavioral issues and developmental delays. It’s painful. Now we’re working on this end.

amother

Wed, May 15 2024, 1:20 pm

amother Blue wrote:

I wonder if this is more common then I thought. Seems so, although it hit me by surprise. I also found I'd kind of lost my identity. For 3 years I was either in, on the way to or just discharged from hospital... when I met anyone it was always 'how's Sari'. Everything else was an afterthought! It also became my full time 'job', I was a SAHospitalM for that period.

amother

Wed, May 15 2024, 1:29 pm

amother Ballota wrote:

This was another thing I found hard 'after'. She was used to lots of time alone and attention. During the long hospital stays she had either me or dh to herself and found it hard to be 'one of the gang' afterwards.

But with time that eased, and I actually find she has very healthy attachments, maybe even more then my other kids. Possibly due to all the one-on-one care!

amother

Wed, May 15 2024, 1:31 pm

amother Ballota wrote:

But hugs. That's hard, especially when you expect things to be normal finally.

amother

Pistachio

Wed, May 15 2024, 1:41 pm

OMG!!!

Did I just write the op and the subsequent posts here???

Relating to EVERYTHING I can cry.

Can we like have our own support group?
No kidding!!

amother

Pistachio

Wed, May 15 2024, 1:42 pm

amother OP wrote:

Haha!
So much so and I I love your SAHM interpretation!

amother

Ballota

Wed, May 15 2024, 1:44 pm

amother OP wrote:

But hugs. That's hard, especially when you expect things to be normal finally.

Thanks, this means a lot to me.

She was too young not to be part of the gang at home b”h. But I do see that emotionally people see her as stunted but those who take that one on one time, see so much depth in her.

amother

Ballota

Wed, May 15 2024, 1:46 pm

amother OP wrote:

Our special children. They change us for the better and light up this world. Do you think about shidduchim/sharing this information/ how they’ll manage as adults? I worry, especially now with delays and ADD and we’re still in lower grade school!

amother

Wed, May 15 2024, 3:04 pm

amother Pistachio wrote:

Haha!
So much so and I I love your SAHM interpretation!

Thanks, literally made it up as I was writing my OP, I like it too!

amother

Wed, May 15 2024, 3:27 pm

amother Ballota wrote:

At one point I was worried about Shidduchim for her, in a passive sense tho, she's only 8! But I've matured and learned to 'let go and let G-D'.
My oldest started shidduchim shortly after dd was discharged, and I can't say I was worried, but it did cross my mind whether we would be considered dysfunctional... but BH H-Shem was very good to us and we have wonderful sons and daughters in law.
It was very public at the time, as the whole Parsha took place over 3 years and we have Ka'h a large family, who attended almost every Moisad in town (and out of town!).

But we were very open, and gave the Shadchanim our Doctors number. It wasn't hereditary, she was a preemie, and didn't seem to affect shidduchim. Although we don't know who turned us down, but does it matter?

My older kids are better for it. As teenagers, they would do night-nursing for very special needs kids and adultd. Pump feeding and oxygen, meds via NG tubes was easy for them. And this without any training besides for the in-house training...

amother

Wed, May 15 2024, 5:15 pm

amother Pistachio wrote:

OMG!!!

Did I just write the op and the subsequent posts here???

Relating to EVERYTHING I can cry.

Can we like have our own support group?
No kidding!!

I had a great support group during, we met at the hospital, at the doctor and at Camp Simcha. However different our lives were, we connected on a deep level.
I wouldn't have coped without them. there's a limit to how much you can say to friends not going thru it. And I wanted to keep my regular friends as things were, and for be'H when things returned to normal.

Whatever 'normal' is!