Everything Was Going So Well....

A day ago, my biggest complaint was that I missed my patio. The kids' spring sports and year-end school activities have had us busy most nights and weekends. I shouldn't complain, it's our own doing and everyone else I know has been busy doing the same.

But still, I was salivating over the glass of white wine I wanted to enjoy sitting on my patio as the kids played nicely in the yard. Gosh, how I wish that was my biggest problem today.

Our "normal" includes four beautiful children, each with their own gifts. That includes our Ellie, who is quite unique (the only known living case in the world with her chromosomal difference).

We have adjusted to the fact that she is developmentally delayed (big time), that she is non-verbal and wears diapers, and that she has the “no-sleep” gene. We are okay with that, especially since she's also a beautiful girl that would hug you and kiss you and clap hands all day long if she could.

She also forces her type-A Mom to sit down and relax, brings smiles to others, and was brought to us as a gift to teach me - and everyone that takes the time to know Ellie - about unconditional love. It's all good, right? If only I had a night to relax on that patio.

But then along comes a wrinkle. Ellie had a big appointment yesterday with a favorite doctor at CHOP, one with whom I have a love/hate relationship. Her doctor is both a great physician and a really nice guy, but over the years he has pounded us with bad news at our appointments. Yesterday was one of those days.

Anyone that has followed Ellie knows her left hip has had a history of severe dysplasia. She has endured many surgeries, braces and the dreaded spica cast. Yesterday at the appointment her doctor wanted me to see what he was doing to her hip to see if I could see or hear the hip clunking in and out of the socket.

I started to point out that he was looking at the wrong hip - her right hip - and then I realized what was happening. Ellie’s right hip is doing all sorts of strange things, much as her left used to do.

And, long story short, she will need her first surgery - a big one - on her right hip. I can handle tough surgeries, but the spica cast again? Anyone that has cared for a child in a spica cast can relate. Basically, it is a full body cast, from the chest down to the toes with the hips in a froggy position (legs spread). With a cut-out for the diaper area and a bar between the knees.

My sweet Ellie has been in spica casts for 10 months of her life so far, not to mention all of the time in braces after surgeries.  Now, at age 5-and-a-half, she is finally learning to walk. She has started to balance and has even taken a few steps. Finally the mobility is coming, and now it will be taken away from her again.

I actually took the news okay with the doctor, but on the car ride home it was like driving through a rainstorm, as I cried for her. I hate the fact that she will wake up from surgery and want to say (if she could), “Mom, why the heck did you put this back on me? I thought we were done with this!" Or the awful pain she will be in, because it really is a painful surgery cutting into the pelvis and inserting bones and plates and screws, etc. Or the fact that we just found an awesome school for kindergarten, but she will miss a chunk of school just after she starts because of the surgery.

I have often learned on this journey called life, however, that it really is like a wild roller coaster ride. We just happened to hit another low yesterday, and that's okay. It will make me appreciate my daughter’s legs all that much more while they are out of the cast. It will make me work that much harder to build the muscles in her legs so they don’t atrophy (as much). It makes me appreciate the simple problems, such as running kids to sports and school functions, being super busy with Baby Be Hip, and worrying about my baby destroying the house like a healthy 10-month-old should.

I got my good cry out yesterday and I am preparing for the future and appreciating the present. I will not look ahead with dread, but rather enjoy each day with my family. I will keep life in perspective, I will hug my kids more and I do realize it is not the end of the world. I am being tested once again, but I am strong and I have a great network of family and friends that will help us through our next challenge. I do wonder though why the hardest thing we have to deal with with Ellie keeps resurrecting itself. Many, many spica casts ago, I had a great business idea that went pretty far but we decided not to move forward, maybe it is a sign that I need to do it for all the other Moms and Dads out there to make life a little easier. I guess I just keep looking for the silver lining.

We will make it and we will be okay and Ellie will get past it. We will embrace it like we have every other challenge we’ve had with her. We’ve had cast-signing parties where the kids have their friends over and we celebrate Ellie in her fun cast. Who knows? Time will tell.

After the kids came home yesterday and saw the X-rays in the car, they knew. “Oh no, not again!” They sympathize with Ellie. Molly said, “Mom, I feel so bad for Ellie, her life is so tough." And then Gavin said to me, “Mom, I’ll take care of Ellie when you can’t take care of her anymore. I will work lots of jobs to help her." Can I ask for any more? I am blessed.

Off to have my glass of wine on my patio. Ah, the simple pleasures!