Taking cues from our life with Sweet Pea, our heart for Everly’s Angels’ purpose is to use our family’s experience, our life together to ease the challenges of others who have a similar path to follow: as a special needs family and, more specifically, those parents who receive a diagnosis their baby has a life-limiting condition.
We have been raising two typically developing boys, one 8 and one 16, so the idea of “special needs” really didn’t impact us any. We were on the outside.
Until February 20, 2014. Then we get a true insider’s view.
I don’t think it is sufficiently possible for us with typical children to fully appreciate the challenges that those families go through.
Really there isn’t. But to give some perspective, consider the following:
o There are numerous and an overabundance of doctor’s appointments, waiting in a germy waiting room for an over-booked doctor.
o A house full of medical equipment that we neither want as home décor but at the same time value as it saves our children’s lives.
o The difficulty in going anywhere with all your “stuff.”
o The constant worry that this next bug or illness will land your child in the hospital.
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| Our PICU |
o Parents who earn honorary medical degrees in record time.
o Adding the constant use of acronyms (NG, G-tube, PICC to your daily speech so much so that it seems to lay people (aka non-special needs parents) that you are talking in code.
o Many, many, many FUN conversations and phone calls with and to insurance and DME companies. {insert sarcasm here}
o “Loss” of parent in a sense for the siblings in the family.
o The pain of watching your child have procedure after procedure.
o Not being able to have any “down” time because without a clone of yourself, the complexities of your child are so much so that you aren’t able to leave him/her with just anyone.
The other side for us, aside from the special needs aspect, was knowing our daughter’s genetic condition was life-limiting. That is a mighty emotional road. I mean really…to know your newborn baby statistically would not live to see her first birthday? And in some cases of babies who are diagnosed, not only with Trisomy 18, but with a variety of other medical complexities making sustaining life all but impossible through the end of the pregnancy or very shortly after birth.
What then?
Honestly, I think society has it ALL wrong. Superheroes aren’t costumed and have superpowers. Superheroes are parents choose to give all of themselves knowing what is to come, knowing the pain that will ensue and doing it anyway. Those are true superheroes.
Here’s a glimpse into that world:
o Parents learn more about the medical world than one would want outside of being a medical professional.
o The anxiety that is always present worrying about germs and life-threatening illnesses.
o The constant fear that the doctors weren’t telling you the “whole” story or weren’t in your child’s corner when being advised.
o Most are on hospice or a palliative care of some sort and ALL that comes with that very difficult and emotional idea.
o The complex stress and prolonged grief of not knowing when your child’s last breath will be.
o The complex stress and prolonged grief of not knowing when your child’s last breath will be.
o Trying to parent a whole lifetime for this child, soaking in every
moment for fear of the time when there will be no more. |
| Too much CO2 in her body. Can't get rid of it, even with BiPap. Told it might be the end (this was our 5th time hearing this in her life up to this point and that creates it's own kind of living hell.) |
o Feeling torn constantly between the time you need to give the siblings and the abundance of time you want and need to give this special baby.
o Watching your child grapple through their varying medical complexities, not knowing the right path or answer to issues.
o Watching your child day in and day knowing that one day in the not so distant future, you will have to say goodbye.
We also hope that in both cases the foundation can uplift and encourage not only the parents, but also any siblings in the family. It’s a tough job for any adult but for a child, it’s even harder. We pray that we can provide a bit of cheer and happiness to their life as well.
We created a bucket list for Everly and for our family, making memories and living life together. Ever focused on the present, we were intent about our time together every single day. No moment was wasted, no time slipped by unused.
With Everly’s Angels Foundation, we desire to encourage all people to be purposeful with their time, living live with intention and making the most of every day, just as we did with our precious baby girl.
Because of Everly, our eyes and our hearts have been opened to a new world…
challenges and needs of special needs families
the hearts of families who will lose a child
siblings of families in difficult, life-altering situations
a sincere appreciation for the simple moments each day
the value of living life to its fullest and with intention
Foundation Purpose
Everly’s Angels
The specific purpose for which the corporation is formed is to promote education, provide assistance and advance public awareness about Trisomy 18, a rare and life-limiting genetic condition.
Mission Statement
Everly’s Angels Foundation is a 501 (c) (3) non-profit charity striving to provide encouragement and support to special needs families, parents who receive a devastating prenatal diagnosis and families who have experienced the tragedy that is child loss. It is the foundations desire to encourage others to live with intention and purpose, despite a diagnosis, ailment or circumstance, and to make the most of every day.
Everly Marie Hopkins (2.20.14 – 1.26.15)
It is my personal hope, desire and mission that
Everly’s Angels Foundation seeks to carry on the
legacy left by my daughter.
Everly’s Angels Foundation seeks to carry on the
legacy left by my daughter.
Everly Marie Hopkins (2.20.14 – 1.26.15)
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