ALL ABOUT LILY

Sarah Portillo - 8 Apr 15

I grew up wanting a family.  I knew eventually that I wanted to have four children.  I don’t recall why I chose that number, but it did happen!

Today I’m married to my wonderful husband Luis, and we have four kids in our blended family.  Justina is 17, Lily 11, Leo 8 and Marcelo, 4.  They are each dynamic, funny, sassy, silly and full of life.  Our home is never boring, and if it appears that way, you’ve come to the wrong house!  I’m really not kidding.

My daughter Lily has a rare metabolic condition and disability.  We have nurses and nursing assistants in our home all day and night to help lift her, move her, bathe her, dress her, medicate her, change her, everything that anyone who needs full time support would need.  She has a wheelchair, stander, 02 machine, CPT vest machine, pulsox, Bi-pap and lots more.

I could go into all of her medicines, but let’s just say it takes up a third of one of our kitchen cabinets.  Lily has a complex condition, but beyond all of that, once you take time to connect with her, the intimidation of her needs will dissipate.  She has a kind way with people and it resonates with them for years.

Lily is more than her little body, that won’t work right.

If we were to back up to the day I knew I was having her, I never would have imagined that she would spice up my life as she has.  I would be withheld, afraid, and unsure after her diagnosis.

I wouldn’t know that she would make me a stronger, more stubborn advocate for what I believe is right – not just for her, but for everyone I love.  I wouldn’t be able to predict that despite her inability to talk, her eyes would be “barometer” (as a dear friend has said) and she can tell us ANYTHING with them.  If her eyes are dark, something is wrong.  If they are sparkly and sassy, we’ve no reason to worry much!

There are times where the constant flow of medical personnel and therapists in our home can be exhausting.  I still try, and never completely succeed, at being the best hostess I can be to them, while still running a home and caring for the family.  My boys love having them to interact with.  Leo can often be caught sitting at Lily’s side in her bed, or making the nurses attend dutifully as he performs a magic trick.

It’s not unusual to find both boys in Lily’s room, eating a picnic lunch or dinner on her bedroom floor.  This can free up my time to work on my lists, or do the other “Mommy” things that need to be accomplished.  Their presence is meaningful, especially so when Lily is ill.  They carry the load and stress with me, and help when things are bad or good, at my side.

There have been very difficult times where Lily has had a traumatic injury, or surprising illness that has separated our family as she stays at the hospital.  Sometimes it’s a few days, or can last a little more than a month.  I’m usually with Lily while my husband stays with the other kiddos.  It’s miserable.

I remember when Lily’s femur had broken and we took a trip to Children’s Hospital, Marcelo was inconsolable.  I couldn’t calm him as Luis was with her.  I suddenly looked at him and said, “You know what?  I HATE the hospital! Don’t you Marcelo?  I HATE being here.  It really, really stinks!  Tell me you hate it too little man!”  And his eyes grew wide and he stopped crying.  (We don’t say “hate” in our house).  He started to say it with me, and was punching the air.  Eventually his tears turned into giggles.  He wiped his face once he calmed, and ran to play with some of the toys available nearby.

Our family and life is not predictable, not typical, not understood at times.  But it’s also magical in it’s own right.  Our ups and downs are not to the degree of some, and can be much more defined than others.  We are stronger each day.  As a Mama, I cry at night for worries and guilt, just like every Mom.

I love fiercely, and to a fault.  I am so grateful however, that I am not alone in this journey – and that I have dear friends and family who lift our hearts and support us whenever we need, without even having to ask!  I only wish this for every Mom, in every situation they are in, to have those connections that make a difference in their lives as a parent.

Sarah is fundraising for an event she’s created called ‘A Lily & Zach Attack’ taking place on US Mother’s Day in May. She’ll be surprising mothers with gifts who are staying with their children at Children’s Hospital Colorado. Because they need a little love! Help the cause and visit:  Facebook.com/groups/MD2015LZAttack

Motherhood is different for all of us… if you’d like to share your thoughts, why not join our Network & start posting?

Sarah Portillo

Sarah is the Mother of four and lives in Loveland, Colorado USA. Her hobbies include reading, blog-writing, errand-running, multi-tasking, running her home, loving her husband and kids and taking on volunteer opportunities that match her heart. Before kids and family, she took some college and travelled, while taking time to discover herself -which inevitably led to great discoveries and failures, then to her currently abundant life. There isn't a lot of money to be had, but there is much crazy happiness in each day!

View profile for posts, events and more info