Sleep Talk!

Sleep, sleep, sleep….couldn’t we all use more sleep.

I wish the sandman and I were best friends cause man I wish he could hook me up!!

As soon as I lay down something is either psychological or physically pulling at me…and I wish I could wear an eye mask to block it out BUT that is not an option.

After Theodore’s second sleep study this past week, and losing much sleep…sleep has been on my mind!!

I know when I wake up most morning I feel like my head just hit the pillow, but sadly it is 7-8 ours later and time to get up.

Yes, I try to get at least 8 hours of sleep a night, because I do believe in beauty rest BUT let me tell you I think the only person getting that much sleep is Oliver.

Thank the heavens above for his consistent sleep patterns!!

HOWEVER…Theodore not so much!!

Since he was born we have struggled with sleep. I kid you not I asked the doctor at four months if he had an issue and his genetic neurologist told me it was to be expected with his condition. So from then on we have endured and have done what WE, thought was the best.

I understand some people don’t get it or probably even judge our sleeping patterns but it’s a real situation to us.

Since he has been born he has had MAJOR sleep issues. Clinically he has severe obstructed sleep apnea but that diagnosis is more than just a sleep machine to fix a good nights sleep.

Theodore has issues with tempurature while he sleeps, it must not be too hot or too cold or else he can’t sleep or it affects his asthma. He has yet to completely get rid of his aspiration reflux, so when he gets sick we have to monitor him so doesn’t throw up and choke. He does not sleep well in new places, he hates his baby bed and will only sleep in a Pak-n-play. So usually this all leads to him sleeping with us.

Is this against so many of those parental judgers……YES, do we care NO!!

At first I cared and even now it hurts my feelings bit when people assume we have not tried everything, or think they could do better.

Well…I guess they can keep assuming because we all know where that leads…

We have to worry about so much and no I am not making excuses for us but DANG it… we have to get sleep too. We have to have sleep so we can be our best selves to take care of him. To take care of both Theodore AND Oliver.

When Theodore wakes up in the middle of the night he will sleep with us…

When he is aspirating on his own puke while refusing to throw up because he thinks it’s easier to swallow, I want him next to us. When his oxygen levels are dropping too low I want him next to us so I can keep my hand on his chest and count his breaths and feel his heart beating. When his body temperatures is fluctuating I want him next to us so I have a plan. When he is so scared about a new space that he cries so much he works himself into a physical meltdown, I want him next to us.

Theodore is extreme, he is unexpected and for us this is our plan, this is what works. Many special needs children, or just children are the same and many are not. Some routine work and others do not. We do what is best for us, and I want him next to us. This helps in aiding us on our plan of attack, it gives us good reading so we know what to do either at home or if it’s time to head to the hospital.

Believe me, when he is not sick and he won’t sleep in his bed in his room we rack our brains and we try it all. We want him to sleep in his own space, we want him to grow independence.

When we think we have a good routine and he sleeps through the night something changes and we have to start all over.

I won’t lie it is exhausting and many nights I have cried ….no bawled while he is screaming over the monitor because I am at loss of any plan or perspective. I have lashed out in anger at Keith (sorry it’s either you or the dogs) because Theodore is screaming and we can’t figure out why.

Usually we have to run through the list…..we either forgot his music, the music is too soft or too loud, his sleep sack wasn’t clean, his Z vibe is lost, Nemo( his light up stuffed animal) is not working, we put him down at the wrong time, the ceiling fan is too fast or going to slow, or we forgot something else tiny BUT to Theodore those tiny things are HUGE.

I tell you it could all drive a person mad… but we try AND we always give it another try the next night.

So if I look I haven’t rested, I probably haven’t. If I say I had no sleep but I went to bed early, know I probably wrestled with a toddler half a night. If I don’t always offer to take trips, or spend the night know it may not be possible. If my kid is still sleeping in a Pak-n-play at five know I don’t care because at least he is sleeping. If that pak-n-play is still in our bedroom at that time know I have tried but for us it is what works.

Well I better make this quick, because as I am writing he is napping. Which mean it could be a 20 minute nap or it could be an 1 hour and 20 minute nap…..always rolling the dice 🎲 😉

I will be, Reporting to Duty, as a mom who does best for her special needs family. I will work on getting the rest we all need to be happy, and healthy!! I hope you all can commit do doing the same!!

Until Next Time,

Reporting to Duty

Xoxo

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4 thoughts on “Sleep Talk!

  1. Hi. I have been reading your post. Thank you so much for sharing. I am pregnant and my little babygirl has 7p22.1 deletion. Can I contact you on email?

    Kind regards
    A.Farah

    Like

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