For Those Extra Special Moms

To the mom who didn’t get “just a healthy one”:

A healthy baby .
That’s what you want.

Boy or girl? Doesn’t matter.
Just a healthy one.

With ten perfect fingers and ten perfect toes.
A tiny smile and button noes.

A brain that works as mine and yours.
Tests coming back with perfect scores.

A heart that beats strong—the rhythm of drums.
And the in and out breath of healthy lungs.

But then you find out it won’t be so.
An unhealthy child— so much unknown.

A journey full of winding roads.
Ups and downs. Such highs and lows.

A little one fighting for their life—
And you, strong beside them in perfect stride.

Just pushing them forward with all that you are— a mother who hasn’t backed down thus far.

This motherhood it will indeed be hard.
The heartbreak will leave inevitable scars.

Not a motherhood you had ever planned for—
But it won’t be less. It will be more.

More love needed and more to give.
An understanding compassion that is so so big.

More strength than you had ever known.
A faith in God and Him alone.

You’ll learn to hope beyond all reason.
And lay down burdens in every season.

You’ll fight and give up and fight some more.
You won’t be stopped by seemingly closed doors.

You’ll give more than you knew you could.
And though you’ll grow weary you’ll still see the good.

Yes this child— unhealthy as they may be.
This child has allowed you so much to see.

Joy and beauty.
Pain and sorrow.
A gratitude for every single tomorrow.

This child is adored— a gift from above.
A newfound passion full of motherhood love.

So this is to the mother of an unhealthy child.
Who holds up her head, moves forward and smiles.

Your motherhood was not the way that you planned.
But today you love more— and stronger you stand.

I’m not sure who wrote this but it was shared with me by another MLD Mom. And it is so true. To all my other extra special Moms, a very Happy Mother’s Day to you! ❤

Olivia’s Wish

Since getting Olivia’s diagnosis, I have heard other MLD families talk about Make a Wish. I was familiar with the organization from being on the committee for their annual Wish Ball one year, which helps raise vital funds to grant wishes for all of the kiddos. Never once did I think my kiddo would be one of them.

But here we are. So, naturally, I started thinking about what Olivia’s wish would be since she can’t tell me herself. Most of the families seem to do trips somewhere but with how much we have traveled in the past year alone I didn’t think that would be at the top of her wish list. Not to mention I thought it would just make the destination this sad place where we once went for this sad purpose. And would we ever go back there?

So as I brainstormed other options over the last few months, we were also in the midst of looking for a swing set and playhouse for the girls. But how could we make it more accessible for Livvy?

Then it hit me. That could be her wish!Her two most favorite things in the world (aside from Mom and Dad of course) are “playing” with her sisters and being outside to watch the birds and planes go by. So I asked her, do you want a special swing set just for you and your sissies? She got the biggest smile and laughed. That was it!

Dave wasn’t at home when I got this epiphany so I immediately texted him and he loved the idea.

Thankfully, one of my friends and mentors was on the board for Make a Wish of Arizona so I asked if she would be so kind as to make an introduction. She did, and we got a referral from Livvy’s neurologist, and within a week we were meeting with the wish granters to discuss Livvy’s wish.

They asked all about Livvy’s favorite things (sisters and outdoors aside). To which I answered birds (the theme of her upcoming 3rd birthday), dogs, Minnie Mouse, and her fave bands, Maroon 5 and The Beatles.

Within two days Make a Wish had sent her a little bird house with stuffed animal birds that tweet (she and Keira both love it), and a Minnie Mouse with a dog on a leash. She was so excited! While she can’t make them move herself, the Minnie actually walks the dog and talks (which actually scares Keira 😆) and we help her out with the birds.

We are so grateful to have Make a Wish be a part of her life and bring even more smiles to her face. Within the next few weeks her wish of a play set will be granted and we’ll be sure to share pics!

The Interview: School for Livvy

Schooling was not something we considered would be possible for Livvy given all of her limitations. However, our coordinator with the Arizona Early Intervention Program urged us to look into it and apply so that she is in the system whether we decide to move forward or not. I figured how hard could it be to apply her to school?

Well, it has been a process.

After a zoom call with someone from her school district, an in-person evaluation was planned for a month later. Of course this fell the week after her surgery in Utah (that caused the CSF leak she had) so she was not in the best of moods but I had canceled once before and just wanted to get it over with.

Assuming we would be meeting with that same person, we walked into the room and were surprised to see 6 additional people sitting in chairs bordering the room, each spaced 6 feet apart and wearing their face masks. Woah. This truly caught me off guard and left a bad taste in my mouth upon leaving. They grilled us with questions about her abilities (or lack there of), one question after another.

Can she sit upright on her own? No.

Can she crawl or roll? No.

Can she feed herself? No.

Can she point to what she wants? No.

The list goes on and on. It was essentially an ugly reminder for us of everything she has lost from this terrible disease – all just within the past year.

While they understandably needed to get to know her if she would be in a classroom, it was a rough hour.

Weeks later we had a zoom call with everyone that was at the in-person meeting to determine eligibility together (insert eye roll here).

At this zoom meeting they proceeded to tell us that she has severe delays in each area. Please tell us something we don’t already know, I thought. But that she does in fact meet eligibility for schooling in their special needs program.

“Would you like to know what this looks like?”, they asked? Why not, Dave and I thought. They then proceeded to tell us that if she starts in the fall, it would be a three-hour day beginning at 9am where she would have both time in her stroller and being held by a teacher for more interactive “play” with other students. Snack time would include food brought from home. There would be one teacher and two assistants in the classroom who would all learn her medical needs to care for her properly and keep her comfortable.

Prior to all this, Livvy was in so much pain each day, and so irritable, that we thought there was no way she would be able to attend “school.” But since her last surgery which removed the internal port she has been so much more comfortable, and happy! While it pains me to think that thing caused her unnecessary pain this whole time, now that it’s out and she’s more stable I could potentially see this as being an option for her. Being around her sisters makes her so happy that I think being around other kids would make her just as happy.

So, I asked Livvy if she wanted to go to school with other kids and she smiled the biggest smile and laughed. So that takes care of that! We are now beginning the process to enroll her at the school down the street from our house and come August will see how she is doing and if she is still up for a change of scenery. 😊