Wait and See

Wait and See

Because I am so open about Chloe’s conditions via blogging, Facebook, Instagram, at the store, at restaurants, you name it… many people reach out to me when they have a new diagnosis for their child, or no diagnosis for that matter. Friends of friends have been referred to me for questions and support on occasion. I’m glad to be of any help I can, though it’s very limited. One time in particular, I remember corresponding quite a bit with one mother whose experiences with her child reminded me a lot of our experiences of first learning about Chloe’s condition and all the frustrations we had during that process. This sweet mom kept asking me what to expect. “Will she do this? Will she do that? Will I be able to do this with her? What will people think? You don’t think she’ll need a wheelchair, do you?” I found myself giving the response that used to make me cringe. “You’ll just have to wait and see.” Ugh, I remember thinking that was such a cop-out answer from doctors. I thought for sure they knew and they just didn’t want to tell me the grim truth or were afraid to give me the hope I was seeking. But with a few years of wisdom (provided by Chloe) and motherly experience under my belt, I realize it’s the truth. You just don’t know. No mother really knows those things about each of their children, but especially those children with special needs. And so here I am seven years later echoing those words I used to dread yet heard so often. “Wait and see.” To which I...
Are We Out of the Woods Yet?

Are We Out of the Woods Yet?

It has been over 7 years now of asking the question, “Are we out of the woods yet?” To doctors, to my spouse, and as an internal struggle I’ve kept hidden at times, I have had this constant nagging question. When can we just get settled in to what our life is and not have something we are trying to figure out, fix, and/or deal with? She was 13 months old when I read the official diagnosis of cerebral palsy. I saw it on a consultation report from one specialist to another. That probably isn’t the greatest way to receive a diagnosis like that about your child, who also happens to be the center of your universe. But that was how it happened. I’m sure the report also included her history of infantile spasms, a debilitating type of seizure that had been controlled after 6 weeks of steroid treatment. The report likely indicated that she had global developmental delays (non-mobile and poor fine motor skills) and bilateral exotropia (wandering of both eyes). Those are her main diagnoses. However, no report could sum up or label who she really is and what the world is like with her in it! So let me attempt to do so now. Chloe was born just 10 days early. They induced labor because I had gestational hypertension. Nothing appeared to be out of the ordinary with my beautiful little newborn. In fact, the pediatrician told me she appeared to be the healthiest baby in the nursery! She sure looked perfect to me! She was my first child so I wasn’t in tune with what a “normal” newborn looked...
Be welcoming of special needs.

Be welcoming of special needs.

A little while ago I posted about my experience in church. Dylan wasn’t terribly quiet and I had a choices, stop going for fear of what other people thought, go but take her out, or go, forget what everyone else thought, and make it work. You can read my post here. The truth is, women in church are leaving in droves because they don’t feel like there is a place for them and their children. This is a problem. An amazing special needs mother and friend of mine, Jodi, posted her thoughts on what people can do to make these moms feel welcome. She is LDS but her lesson applies to every religion. This is what she said. I am having more and more of my friends that are parents children with special needs that are deciding to take a break from their church services. The reason? They feel unaccepted. These friends are from the same religion as me, and from different religions. It seems to be happening everywhere. We have always been blessed to be in wards that have been so supportive of my boys. When I hear these HORRIBLE experiences from my friends, I want to help them fight for the rights of their children, and I want to hold on to them, and tell them not to let others decide if they go to church or not… But then I can see exactly where they are. I know from personal experience that advocating for you child can be overwhelming and sometimes you just have no more to give. Again, my experience has been in different areas,...
Our normal (and totally disruptive) behavior…

Our normal (and totally disruptive) behavior…

My daughter is kind of noisy… okay, really noisy. She yells and laughs and if you give her any attention for it, she ups it a notch and gets MORE yelly and MORE happy! This is particularly true when we are somewhere where she should be quiet… or maybe it just seems that way. We were visiting a church this weekend that wasn’t one that we usually go to. Dylan was in prime form on her dad’s lap. Happy as can be, yelling, cheering. Can you say disruptive? This loud behaviour in a normally peaceful, calm, somewhat quiet environment? There are families and children there so of course the noise level can fluctuate but it’s not out of the norm for parents to take disruptive youngsters out in the hall if they get a little too crazy. Well, there she was, going and going, and my husband looked over at me and whispered “Should I take her out? I whispered, insisted, “no!” (Mind you, I don’t even like to take my typical children out when they are misbehaving because I don’t want them to realize they can go run in the halls if they are a little loud and naughty first!) This begs the question… how do you balance your special needs child (or adult) being loud and, under typical circumstances, disruptive with providing exposure about special needs to the community? And, not helping but, of course the child, like many toddlers, is completely oblivious to this “expected” behavior and the peaceful environment. This goes for any setting, restaurant, malls, plays, music events… Of course with church there is...
A Note From a Stranger

A Note From a Stranger

I simply LOVE to share great examples of acceptance from the community and boy did I hear about a great one recently. Prior to eating a couple at an Italian restaurant desired to pray to bless their food. They asked their waitress, my friend Emily, if she had anything that she would like them to include in their prayers. In the four years she has worked there she has only been asked this a handful of times, maybe 3 or 4, and this was the first since her daughter Kinley’s birth in January. Kinley has brain malformation. Her future is unknown but, like many special needs mothers, Emily has learned to celebrate Kinley’s successes and take things a day at a time. Emily saw this as a great opportunity to spread awareness. She briefly shared Kinley’s story and thanked them for the offer. Extra prayers never hurt anyone. After they left she returned to the table and found this note. It reads: Emily, We don’t always understand why such precious, innocent children have to suffer in this life but I can tell you that God loves you both so much. I pray that you and Kinley will have a blessed full life together. Our daughters also has a medical condition and yet God is so faithful & continues to provide. Never lose hope – the doctors are limited but God is not. Jesus died for our sins – that doesn’t mea our current lives will be easy – only that our future is secure in Him. *God bless* What a beautiful note from a couple who had been strangers to...