Stacey's and Jordana story shares their experience, joys and grief with other special needs families

tour special needs family

I have 2 beautiful daughters, age 3 and 5. Being a mom is the best thing I've ever done. Not a day goes by that my girls don't make me laugh. They help me remember what it is to be a child, what it is to be truly happy and content. They are my rainbows above what is sometimes a very muddy pond.

My younger daughter is disabled. Having her has changed my life so incredibly that I feel compelled to share my story to anyone who will listen.

Jordana Grace was born full term, normal delivery, and healthy 8-pound baby girl. When I first saw her I knew immediately that something wasn't quite right, but when all those around me told me how beautiful she was I dismissed my brief thoughts of worry.

Now looking back, all the signs were there that Jordana was not like other babies. She slept all the time and was very lethargic and weak. Even en utero I experienced very little movement. I had to wake her to feed her and had I let her, she would have slept through the night even as a tiny infant. I attempted to breast feed her but she couldn't latch on and was a very weak suckler. When I finally switched to bottle-feeding I had to cut the nipple openings to make them big enough so that the formula could drip into her mouth. She would tire very easily and would usually fall asleep after only drinking an ounce.

I used denial as a way of coping, stating to concerned family members that Jordana was just very “laid back”. I attributed her lethargy to her personality. I pointed out how she smiled all the time and what a happy, content baby she was.

staceyMy first vivid memory of finally realizing that something was wrong was when I took Jordana to the studio to have her 6-month portrait taken. I wanted her posed the same her sister was at that age, on her tummy, up on her arms with her head held high. Well, not only could Jordana not hold herself up on her arms, she could barely hold her head up off the fluffy rug she lay on and not for more than a few seconds. I remember the confused and heartbroken expression on the photographer's face; even though she didn't truly understand the tormented breakthrough I was experiencing.

I was devastated and worried and her pediatrician confirmed that he too had been concerned with Jordana's progress and had been taking a “wait and see” approach. He ordered lab tests and an MRI and referred Jordana to all kind of specialists. I was so scared. I didn't want to lose my baby girl. I thought she must be dying and awaited the impending bad news.

Things got worse before they got better and we almost had to put Jordana on a feeding tube. Because of her low tone she could not swallow properly and although I tried my best to feed her, she continued to lose weight and gag on her baby food. With the help of a nutritionist and an occupational therapist we were able to finally teach her how to eat and she now eats on her own. Jordana was and is an angel baby. She has known nothing but being poked and prodded and held down after test after invasive test is performed on her. She has frequent infections and is often hospitalized. Despite all this she remains very good-natured and loving and rarely complains.

staceyShe is now 3 years old and we still do not have a diagnosis for her. But she's alive and she's here and that is the most wonderful news. Her main symptom is benign congenital hypotonia, which means muscle weakness for an unknown reason. She has a history of kidney problems, metabolic issues, heart murmur, and bone weakness, to name a few. She has just recently taken her first wobbly steps, but still uses a walker for support. She talks, but uses sign language to communicate her wants, as she is very hard to understand because of her low tone. She has gone from being a very shy introverted baby to an outgoing showoff and performs “tricks” for any interested or disinterested audience. She loves to put her hands on her head or spread her stance daringly and smiles proudly at her amazing feat, waiting for applause. I usually have to explain her “tricks” but we think she is amazing nonetheless. She has surprised us, and all her doctors, with her progress.

I am to a point in my life where I realize the true blessing she is and I am grateful for how she has changed my life. I still struggle with not getting defensive when people turn away and pretend they don't see her, but I try to remember at those times that I reacted the same way before I had Jordana in my life.

As a society, we see someone in a wheelchair, or with a deformity and we think we are being polite by not staring and go so overboard in our politeness that we stare over his or her head or look away as if they don't exist. And that is why I try to use every opportunity that I can to educate people that what those with a disability want is to be recognized as a contributing member of society, to be spoken to and respected the same as everyone, not to be felt sorry for, and not to be laughed at, just to be taken for who they are and who they want to be.

My daughter will always have her differences, her limitations, but she is also a sweet loving little girl who would love to have an elderly lady fuss over her in the grocery store, or a child ask her if she wants to play without being ushered away by their parents as if what she has is catching.

But it wasn't until after I spoke to and found other parents of children also undiagnosed that I realized there were others who understood my pain and yet didn't feel sorry for me. To have someone say, “I understand” and know they mean it is such a joyous occasion when for so long you have felt so alone with your sorrow and frustrations.

And then you find that there is a time to stop the poking and prodding and endless doctor appointments. At one point my daughter had 6 therapy sessions per week. She would wake up each day and say “doctor?” wanting to know where she was headed that day. You have to find a balance between finding an answer, trying to cure your child, and enjoying your little girl.

And when you come to terms with what having a child with a disability means, you then have to find your place in the world in relation to that. For me, it started out by reaching out to others and sharing my voice in the fact that life continues after the birth of a child with a disability. That yes, there is a time to feel sorry for yourself, feel sorry for your baby, and then you must move on. Whatever moving on means to you and your family...

My personal therapy was being there for others like others were there for me. This started out as having professionals and parent liaisons giving my phone number to parents and helping them by just being that listening ear. I also researched their child's syndrome for them so that they could make informed decisions. I now am fortunate to have found a career in helping others, and come to work each day surrounded by co-workers that share my same passion.

Not that this is a selfless act. This is what works for me. It's not the right path for everyone. Doing what I do helps me get through the day. I still get down sometimes, but helping others keeps me sane and in touch. Being able to help others through those harder stages of grief and pain that I have already experienced is so rewarding and so worth the time it takes to be that shoulder to cry on.

However, your mission statement will be and should be different than mine. Finding your path is so important in healing the wounds that having a child with special needs creates. And also know that sometimes there are sidewalks leading off the main trail. Veering off the path is sometimes necessary to keep things in perspective. Life is not easy in any sense. I don't mean to imply that at all. But as Will Rogers put it so well “Even if you're on the right track, you'll get run over if you just sit there”.

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