Hope for HIE – Hypoxic Ischemic Encephalopathy Hope for HIE – Hypoxic Ischemic Encephalopathy


Missing Noah's Hammock in the time of COVID

Life chillaxing on the hammock was beautiful... feet extended ...free floating in pure air. Breeze at my back. Of all the things I miss about life before quarantine. I miss Noah’s hammock the most. He was never without it. Most never have taken any note of it. It took me 15 years to weave it. I picked each strand of rope carefully and worked tirelessly... day & night making all the right connections ... until one day, it had just the perfect amount of support to lift Noah up. Then, I placed him in it & he smiled.

Most never realize how extensive & important community services are for individuals like Noah. Whenever you have met Noah in the past, you may have not realized how supported he was. You just saw him ... his smile but in reality ... Everywhere Noah goes... He never travels alone. He is supported by a hammock of community services intricately woven by me.

Each strand of rope in his hammock is essential to his well being. If you remove even one. The whole hammock is less supportive. It can work but the integrity of the whole structure is compromised. If you remove too many strands in the hammock of services, it can be dangerous. Someone can get hurt. Noah could get hurt. I could get hurt. It could hurt our family.


The Coronavirus impacted everyone uniquely. When the Coronavirus reached Noah, it attacked Noah by posing a risk to his health but it also attacked his hammock ... his hammock of services. It began pulling at the threads. It was heartbreaking... gut wrenching. I tried desperately to hold the strands together... but the strands of services begin to slip ... Some broke. Some services were rewoven differently ... with different thread... thinner thread. The hammock that took me fifteen years to create was different. It is scary. I lose sleep at night over it.

For most an example of missing thread would be school . School is beyond important for individuals like Noah. It is not just learning. It is a life line... a touch stone. However, that is not the only strand missing in his hammock. If that were the case, the other strands ... might could bear the weight. Yet, with so many different strands, I just don’t know.

I will give you example of how a missing strand impacts everything . Noah gets Botox every six months. That is an elective surgical procedure. We were past due for Botox when the Coronavirus hit. All surgical procedures were canceled & quite honestly, I am thankful. I would have been nervous to bring him into a hospital. However, without Botox.... Noah’s Muscles are tight. No, I mean ... really stiff... like a board . He is one of the tightest I have ever seen. This makes lifting Noah ... challenging.

No worries, School or therapies can assist with this . Wait that strand has been rewoven too. Oh my.... what to do. Oh wait... I can speak to his doctor. No, that strand has been rewoven too. I can go get equipment to assist. That is next to impossible now because equipment, therapies, supplies & services are reliant on paperwork. I cannot call a physician in a crisis & ask for .... paperwork.

I think the scariest thing of all is ... Every service he has is knotted together. I have watched those knots become increasingly frayed with each passing day. When you remove one service, the lack of communication between the other services begins to become compromised. It affects the other ropes. I must prove through documentation I have certain amount of therapies at school ... privately... to hold everything together. I cannot do that with places closed. Part of me says ...My hammock will hold until I can fix it. Until all of this is over. It is not broken. Part of me loses sleep worried ... Someone is going to get hurt. Sometimes, I worry that somebody is someone I love.

I guess... I was sitting here thinking how much I miss Noah’s hammock... free floating lifted in pure air. Breeze at my back. Those were some good days. When this is over, I will have to begin weaving another hammock again... making sure it is strong enough to hold up a 15 year old over 76 lb. non mobile boy with cerebral palsy... That the knots are tight. Yet, tonight ... I am tired of holding onto frayed rope.

  • Melissa Waller Longshore
    published this page in Resource Blog 2020-04-28 14:11:24 -0400

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