She may never speak....but she may never have to.

At 27 months old, Lilly doesn't babble, or imitate language. At this point, developmentally, she should be stringing words together to create small sentences. My Lilly is still using an immature system of open vowel sounds and various inflections of squealing and moaning. Although, she has a deaf teacher that she sees twice a week and various other therapists that sign to her during their sessions, she has yet to create a word, use American sign language or even form a consonant sound.

Unfortunately, being non-verbal is very common in children with genetic diseases. No one is able to pinpoint an exact reason. But it seems to be that the speech portion of the brain is often left underdeveloped due to the complications of the disorder. 

What's interesting is that I often forget that she doesn't speak. I forget that this is one of her many (very) delayed areas of development. We have so many obstacles that we face on any given day that this usually ranks near the bottom of the list. Often, I don't even realize it until we cross paths with another young child. Or when someone speaks directly to her and waits for a response.

You see, her and I have a way that allows us to connect without the use of language. Since the first moment I have been able to communicate with her in a way that defies science or reason. She does not make eye contact. She does not point. But I always seem to get the message she is sending.

I have learned to listen to the changes in her breathing. The rapid movement of her body. I can sense her mood based on her posture or muscle tone at the moment. 

I know the purr of her breathing when she has finally drifted off to sleep. 

I know the exact pitch of her cry when she is angry/bratty/hungry. 

Her soft bounce means she is excited. 

I know that her slouch means that she is feeling lazy or under the weather. 

Her head tilt means that she is not happy with something.  

I know that she drags her fingernails over the floorboards when she is bored or ready to move on to some other task. 

She slams her fists into the mattress repetitively when she wants to get up from her nap. 

I know that she mouths her keys when she is content. 

When she wants something, she pants excitedly upon sight of said object. 

Our connection is based solely on instinct and observation. 

There is no way to know for sure if she will ever speak. We can't be sure if this is just a significant delay and she will eventually grow to have some, if any, language skills. (It doesn't seem impossible.) 

She may never speak...but she may never have to. 

"Life has no other discipline to impose, if we would but realize it, than to accept life unquestioningly."

'When I'm doubtful or worried, I think of you and everything floats away like a cloud.'

"Everything I have ever done has been for you. Everything in me is you." -Great Expectations

"Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It's about understanding that he is exactly the person he is supposed to be. And that, if you're lucky, he just might be the teacher that turns you into the person you are supposed to be." 

The Lucky One

Most people probably don't think of my life as lucky.

I can usually see it in the eyes of friends and family. Sometimes even strangers. They look at Lilly's hearing aides, her glasses. Overhear me making more appointments. Scheduling more therapies. Bear witness to my pill crushing, and medicine mixing. They take notice that she doesn't walk. Or talk. They hear the latest story about another sleepless night. Or another meal that has gone uneaten. Pretend not to see me wiping away a roque tear while I sit stiffly in front of my computer at work, hoping no one has noticed. Or when I share the most recent diagnosis, yet another doctor has now added to her increasingly long list. 

THE LOOK. 

With the soft tilt of the head. The downward gaze that doesn't meet mine. There sits the look of sweet relief that whispers. "Thank God that's not me".  

The funny thing is, I actually do consider myself incredibly lucky. Every morning, I rise slowly. Pile  my hair up on top of my head. And before my feet even touch the ground, my mind starts to turn. I look over and see her chest rise and fall. Hear the soft snore from her tiny open mouth. I thank God. As if she knows I am staring. Her eyes slowly open. She rolls away, hoping I haven't seen her. I thank God. She wriggles away from my often insistent kisses. I thank God. 

She flashes a sly smile as I scoop her to get her ready for the day. I thank God. She twists and turns. Eludes my grasp as I try and wipe the sleep from her heavy hazel eyes. I thank God. She sits when I want her to lay. She goes left when I go right. I thank God. She kicks madly through the air as I carry her down the stairs toward her first (of many) in-home therapy sessions of the day. I thank God.

My tired eyes manage to whip and slice, chop and puree her purely liquid diet. My clumsy hands work against the childproof medicine caps, the syrups and syringes. I thank God.

I carry her on my hip through the grocery store while other children her age scurry through the aisles. 

She focuses on the overhead lights while her peers hold their sippy cups, and feed themselves savory snacks. She sits silently, while they ask for more. We sit side by side on the porch while the other children champion the neighborhood playground. I thank God. 

Throughout the day I watch her skid by in her walker, hop in tune with the Fresh Beat Band, squeal with delight when a sudden whisper of wind blows through her hair. I watch her hum, sway, scoot when she is playing with her iPad. I watch her swing, toss, and knock over every single toy she owns. Eagerly turn each and every one of the pages in her book. I thank God. 

And in the early hours of the evening, before the sun has even completely set.  I slip her into her pajamas with the penguins on the back. And I settle down with her in her chair. We begin our often rocky nightly routine. I say a little prayer that I get another chance to do all of this with her tomorrow. And I thank God. Yes, I thank God that I am so incredibly lucky.

Being Lilly's Mom

Being Lilly's mom is such a roller coaster ride of emotions. We have our sad days, our stressed-out days, our busy days, and lots of days filled with nothing but pure chaos.

There are moments when her disabilities completely overwhelm me. Moments when I cannot breathe at the thought of having to care for her every need, every single day, for the rest of my life. The idea that she may never go to college, or get married or ever live on her own, paralyzes me with sheer sorrow. 

However, there are other times, sometimes, early in the morning before anyone is awake or late at night when everything is quiet. As I peel back the curtains that face out over the  smoky grey mountains, I find an honest moment that allows me to remember just how amazing it is to be in her life. I am struck with a feeling of just how privileged I am to be sharing each of her days here on earth. 

Here are just some of the reason's it is really cool to be Lilly's mom.

She is innocent. She does not know what it means to manipulate, coerse, lie or deceive. She is absolute honesty, always. 

She has no ego. She is never embarrassed or uneasy with herself. She stims, rocks and giggles at will. She sees no reason to hold back. 

She doesn't have the capacity for envy or jealousy. These are emotions that serve her no purpose. She doesn't know that she is different, therefore, she has no motive to envy her peers. She is content with who she is. She knows no other way to be. 

She is humble. She is happy with a paper towel roll,  an out dated magazine or even an empty shoe  box. "Things" mean nothing to her.  

She lives in the moment. She doesn't worry about the past or fret about the future. She is fully engaged in the moment she is in.

She is pure happiness. A curtain blowing, a fleeting shadow, a simple breeze can bring her endless enjoyment. She can cry and laugh in the very same moment. 

She doesn't hold grudges. Or stay angry. 

She is a love machine. Her hugs are so magical, I am pretty sure they could solve the majority of the world's largest problems. And that soft spot hidden between her neck and her ear....yeah, I am pretty sure that is the eighth wonder of the world.

According to her she has the coolest life ever. She is adored, cared for and has access to endless amounts of cartoons. Coolest-life-ever.

6 Things You Don't Know About Special Needs Parents....

Written by Marla Lin


1. I am tired. Parenting is already an exhausting endeavor. But parenting a special needs child takes things to another level of fatigue. Even if I've gotten a good night's sleep, or have had some time off, there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of tending to those needs. Hospital and doctors' visits are not just a few times a year, they may be a few times a month. Therapies may be daily. Paperwork and bills stack up, spare time is spent researching new treatments, positioning him to sit a certain way, advocating for him in the medical and educational system. This is not to mention the emotional toll of raising a special needs child, since the peaks and valleys seem so much more extreme for us. I am always appreciative of any amount of grace or help from friends to make my life easier, no matter how small, from arranging plans around my schedule and location, to watching my son while I am eating.

2. I am jealous. It's a hard one for me to come out and say, but it's true. When I see a 1 year-old baby do what my son can't at 4 years-old (like walk), I feel a pang of jealousy. It hurts when I see my son struggling so hard to learn to do something that comes naturally to a typical kid, like chewing or pointing. It can be hard to hear about the accomplishments of my friend's kids. Sometimes, I just mourn inside for Jacob, "It's not fair." Weirdly enough, I can even feel jealous of other special needs kids who seem to have an easier time than Jacob, or who have certain disorders like Downs, or autism, which are more mainstream and understood by the public, and seem to offer more support and resources than Jacob's rare condition. It sounds petty, and it doesn't diminish all my joy and pride in my son's accomplishments. But often it's very hard for me to be around typical kids with him. Which leads me to the next point...

3. I feel alone. It's lonely parenting a special needs child. I can feel like an outsider around moms of typical kids. While I want to be happy for them, I feel terrible hearing them brag about how their 2 year-old has 100 words, or already knows their ABCs (or hey, even poops in the potty). Good for them, but it's so not what my world looks like (check out Shut Up About Your Perfect Kid). It's been a sanity saver to connect with other special needs moms, with whom it's not uncomfortable or shocking to swap stories about medications, feeding tubes, communication devices and therapies. Even within this community, though, there is such variation in how every child is affected. Only I understand Jacob's unique makeup and challenges. With this honor of caring for him comes the solitude of the role. I often feel really lonely in raising him.

4. I wish you would stop saying, "retarded," "short bus," "as long as it's healthy... " I know people usually don't mean to be rude by these comments, and I probably made them myself before Jacob. But now whenever I hear them, I feel a pang of hurt. Please stop saying these things. It's disrespectful and hurtful to those who love and raise the kids you're mocking (not to mention the kids themselves). As for the last comment, "as long as it's healthy," I hear a lot of pregnant women say this. Don't get me wrong, I understand and share their wishes for healthy babies in every birth, but it's become such a thoughtless mantra during pregnancy that it can feel like a wish against what my son is. "And what if it's not healthy?" I want to ask. (My response: you will be OK. You and your child will still have a great, great life.)

5. I am human. I have been challenged and pushed beyond my limits in raising my son. I've grown tremendously as a person, and developed a soft heart and empathy for others in a way I never would have without him. But I'm just like the next mom in some ways. Sometimes I get cranky, my son irritates me, and sometimes I just want to flee to the spa or go shopping (and, um, I often do). I still have dreams and aspirations of my own. I travel, dance, am working on a novel, love good food, talk about dating. I watch Mad Men, and like a good cashmere sweater. Sometimes it's nice to escape and talk about all these other things. And if it seems that the rest of my life is all I talk about sometimes, it's because it can be hard to talk about my son. Which leads me to the final point...

6. I want to talk about my son/It's hard to talk about about son. My son is the most awe-inspiring thing to happen to my life. Some days I want to shout from the top of the Empire State Building how funny and cute he is, or how he accomplished something in school (he was recently voted class president!). Sometimes, when I'm having a rough day, or have been made aware of yet another health or developmental issue, I might not say much. I don't often share with others, even close friends and family, the depths of what I go through when it comes to Jacob. But it doesn't mean that I don't want to learn how to share our life with others. One thing I always appreciate is whenever people ask me a more specific question about my son, like "How did Jacob like the zoo?" or "How's Jacob's sign language coming along?" rather than a more generalized "How's Jacob?" which can make me feel so overwhelmed that I usually just respond, "Good." Starting with the small things gives me a chance to start sharing. And if I'm not sharing, don't think that there isn't a lot going on underneath, or that I don't want to.

Raising a special needs child has changed my life. I was raised in a family that valued performance and perfection above all else, and unconsciously I'd come to judge myself and others through this lens. Nothing breaks this lens more than having a sweet, innocent child who is born with impairments that make ordinary living and ordinary "performance" difficult or even impossible.

It has helped me understand that true love is meeting someone (child or adult, special needs or not) exactly where he or she is -- no matter how they stack up against what "should be." Raising a special needs child shatters all the "should bes" that we idolize and build our lives around, and puts something else at the core: love and understanding. So maybe that leads me to the last thing you don't know about a special needs parent... I may have it tough, but in many ways I feel really blessed.

I am a parent....

I am a parent of a child with special needs. The world outside can seem big and scary sometimes, especially when I watch the news about my childs diagnosis. Times like these I turn my face towards the sun and whisper a prayer of strength, wisdom, and faith to lead my family to the safest place.

Lilly.

You are a sweet song I know 

everysingleword to.

You are tiny graham cracker hands. 

You are the whirr of smooth wheels

sliding over the the slick hardwood floors.

You are two soft pink cheeks.

You are a milky dribble. 

You are a tender giggle. 

You are a tiny spoon.

You are eternal innocence.

You are God's masterpiece. 

You are an indomitable will.

You are an open vowel. 

You are a delightful dream 

come true.

You are hope. 

You are inspiration.

You are faith.

You are my own personal 

miracle.

You are two mismatched socks. 

You are a gentle midnight sway.

You are a heart shaped moon. 

You are

the very 

moment

my life began. 

Excerpt From....Message from Archbishop Chaput: The disabled and the sanctity of life

Parents of children with special needs, special education teachers and therapists, and pediatricians who have treated children with disabilities often have a hugely life-affirming perspective.

Unlike prenatal caregivers, these professionals have direct knowledge of persons with special needs. They know their potential. They’ve seen their accomplishments. They can testify to the benefits – often miraculous – of parental love and faith.

Expectant parents deserve to know that a child with special needs can love, laugh, learn, work, feel hope and excitement, make friends and create joy for others. These things are beautiful precisely because they transcend what we expect. They witness to the truth that every child with special needs has a value that matters eternally.

Raising a child with special needs can be demanding. It always involves some degree of suffering. Parents grow up very fast. None of my friends who has a daughter or son with a serious disability is melodramatic, or self-conscious, or even especially pious about it. They speak about their special child with an unsentimental realism.

It’s a realism flowing out of love – real love, the kind that forces its way through fear and suffering to a decision, finally, to surround the child with their heart and trust in the goodness of God. And that decision to trust, of course, demands not just real love, but also real courage.

The real choice in accepting or rejecting a child with special needs is never between some imaginary perfection or imperfection. None of us is perfect. No child is perfect. The real choice in accepting or rejecting a child with special needs is between love and unlove; between courage and cowardice; between trust and fear.

That’s the choice we face when it happens in our personal experience. And that’s the choice we face as a society in deciding which human lives we will treat as valuable, and which we will not.

This Sunday, January 22, marks the 39th anniversary of Roe v. Wade, the Supreme Court decision that legitimized permissive abortion around the country. More than 45 million abortions later, the damage of that decision continues to grow — undermining our reverence for the life not just of unborn children but of the mentally and physically disabled as well.

We need to understand that if some lives are regarded as unworthy, respect for all life is at risk. We should pray that Amelia Rivera gets the help she needs, and that God surrounds her parents with the support they need.

And especially this week, more than ever, we should recommit ourselves to defending the dignity of all human life, no matter how “flawed” it may seem in the eyes of the world.

I Still Would Have Chosen You

I STILL WOULD HAVE CHOSEN YOU
If before you were born, I could have gone to heaven and saw all the beautiful souls, I still would have chosen you... ...

... If God had told me, "This soul would one day need extra care and needs", I still would have chosen you
If He had told me, "This soul may make your heart bleed", I still would have chosen you
If He had told me, "This soul would make you question the depth of your faith", I still would have chosen you
If He had told me, "This soul would make tears flow from your eyes that could fill a river", I still would have chosen you
If He had told me, "This soul may one day make you witness overbearing suffering", I still would have chosen you
If He had told me, "All that you know to be normal would drastically change", I still would have chosen you

Of course, even though I would have chosen you, Lillian, I know it was God who chose me for you.

Lilly's Story. 23 months.

Well, my sweet Lilly is turning two next month.

Looks like she's getting a party. And I'm getting a good old fashioned breakdown.

It seems, that every time a birthday, special occasion, or milestone marker comes around, I go all crazy. I panic. I question myself. I question her progress and development. Am I doing enough for her? Did I push her enough this year? Should I have sought less traditional therapies? Seen more specialists? Will she ever walk? Will she ever talk? Will she ever eat normally? Is she okay where she is right now? Am I okay where we are right now? Will I be okay if these things never change? Because with a rare disease like hers, that is a strong possibility.

We spent this entire year hospital-free and are officially on maintenance appointments for all of her doctors. She is finally on well-baby only visits with her pediatrician. She had previously seen her every 4 weeks for weigh-in's.

We've added a few medicines, like Vitamin D supplements, and Sodium Citrate to control her acidosis. (acidosis of the blood can cause your body to create kidney stones) Her potassium has remained at the high end of normal without increasing the Fludrocortisone that she takes to control it. .(she is currently only taking 1/2 tablet a day---eventually she will take the whole pill)

Her kidneys are still very small. Her left kidney is only in the 13 percentile for size. Her right is smaller than her left and functioning okay for now. But they will keep an eye on this because having one small kidney can eventually lead to high blood pressure. If that were to happen, she would need to have the right kidney removed. There is also some significant scarring on her kidney's from all of last year's infections. Only time will tell on this.

She is now 23 months old and wears 12mo-18mo clothing. Weighs in at 20lbs and is about 31 inches tall. She wears a size 4 shoe. She is now the size of a small 1 year old. Just recently we were able to finally turn her car seat around to face forward. That was a BIG day for all of us!

She has been considered disabled by the state of NY and now receives special assistance on a Medicaid Care At Home Waiver. This is a program, where if you qualify, they assist you in effort to help keep your child at home and out of a group home or other full time care facility. This is a true blessing to our family. I cannot imagine her being anywhere but here with us.

She still sees her therapists through the state funded Early Intervention service. Her OT, PT, Speech/Feeding, Special Instruction, Deaf Teacher all come each week. Every weeks she has at least 12 hours of therapy. And although, her doctor's appointments have spread out, we still see a lot of specialists for check ups, ultrasounds and blood work on a weekly basis. She currently has 13+ doctor's.

She now has a gait trainer otherwise known as a medical walker. She is running in it now, from one end of the house to the other. Moving from room to room. Plopping down in front of her favorite tv shoes. Other than the fact that we are going to have to spackle and paint every single corner....we are ecstatic to see her getting around!!

She loves books and is learning to turn the page to see the next picture. She takes pieces out of puzzles, and shapes our of shape sorters. She loves spinning toys and pushing the buttons to create sounds and lights. We just got her a Hello Kitty karaoke machine, because she dances (sways) when the music is turned on...making us think she really likes it! She pops bubbles and shakes rattles now. She lifts her arms to say 'pick me up'. And although she doesn't crawl, she has learned to turn herself away toys, games, people she doesn't like.

We have brought in an OT that specialized in sensory therapy. Helping to connect/organize some of the neurological pathways to function better. She has recommended a weighted blanket to help her sleep better, an indoor swing to stimulate her, and shown us many activities that we can do with her to increase input for a non-mobile child. I am looking into animal therapy (horse, dog, etc) to see if that will help to move her development along and fighting my 1st appeal with Cigna to get her approved for an intensive feeding program at the children's hospital. (at the moment -they are only willing to approve her for 3 feeding sessions per LIFETIME!)

Because the Early Intervention program only lasts until your child is 3, at the end of this year we will start to discuss the special needs pre-school program. They will conduct an evaluation of her cognitive and developmental level. We will then visit and research our school options and eventually decide where to send her. Her therapists will then see her at school instead of in our home. All of this is both exciting and incredibly terrifying. You see, when you have a child that cannot speak, it is difficult to know exactly what has happened throughout her day. What if someone is mean to her? What if she is left alone? What if someone makes fun of her? Or worse, hurts her? Ahhhhh! I can't even THINK of this without tear's coming to my eyes!

This year I feel like we have graduated to the next level of being a special needs family. Although we have a long way to go, we are no longer rookies! We made it!!!!

The R Word

‎"re·tard n. Offensive Slang
1. Used as a disparaging term.
2. A person considered to be foolish or socially inept."

By definition, if you are using this word, the only person you are defining, is YOURSELF.

Do not use this word. As a joke, or not. In reference to those who are or are not, developmentally delayed. To their faces, or behind their backs. Do not use this word. Ever.

Remember, that first of all she is my child.....

Remember that she is, first of all, my child.

Let me see her smiling in her sleep and let me think about how beautiful she is...

and not about how delayed that smile was in coming.

Help me not lose sight of my daughter in the shadow of her limitations...

I know that you care for my child and that you work hard with her.

I need your expertise to help her become all that she is capable of being.

You need my help in understanding who she really is and in following through at home with things that are important.

Remember, though, that you send her home at night and have weekends off and paid vacations.

Let me have the luxury of having a vacation, sometimes physically,

sometimes just emotionally, for a day, a week, a month, without your judging me.

I will be there for her when you are long gone.

I love my child with an intensity that you can only imagine.

If on a given day I am tired or cross with her, listen to me, lighten my burden, but do not judge me.

Celebrate with me, rejoice in who she is and who she will become...

but forgive me if from time to time I shed a tear for who she might have been.

Why The World Needs Special Needs Children

How many times have you heard an expectant mom say, “I don’t care if it is a boy or a girl, as long as the baby is healthy?” But what happens when the baby isn’t healthy? How does one’s world change when a child is diagnosed with major health issues, either before or soon after birth? Is it worth having a child diagnosed with severe special needs in utero if he won’t live long or will have a poor quality of life?

For the contributors to A Special Mother is Born, edited by Leticia Velasquez, the answer to that last question is a resounding “yes.” As a result of her daughter Christina being born with Down Syndrome, Velasquez has become a pro-life crusader, determined to change the statistic that 90 % of children with Down Syndrome are killed via abortion. The parents who share their stories in this book want to educate others about the value and joy of special needs children.

In his inaugural address, Pope Benedict XVI stated that “Each of us is the result of a thought of God. Each of us is willed, each of us is loved, each of us is necessary.” The children profiled in A Special Mother is Born have Down Syndrome, Trisomy 18, autism, brain abnormalities, epilepsy, deafness, blindness, and other challenges. Yet, they have touched the lives of their families and the world around them immeasurably. Some of the children died at very young ages – their parents speak of them as saints in heaven. These are children who never sinned. They are with God interceding for their family members. As Colleen McGuire writes of her daughter Rita who died of Trisomy 18 soon after birth, “I don’t regret one moment of her life. My daughter lived a novena: nine days of love.”

These parents acknowledge the suffering and difficulties involved in raising a special needs child. No parent ever wants to see their child suffer or struggle through life. Yet, the experience has brought them to greater trust in God. Diane Grover writes, “We realized we must surrender it all to God; we must humbly hand it all over to Him. He created this child for His purpose. He created this child for His plans. Whatever comes will happen in His time and in His way.”

Lisa Barker has learned to endure great suffering watching her daughter die. “I’d like to write that everything is going to be okay. It will be, but there is suffering to embrace that I cannot run from. Without Jesus’ life, example and presence, it is impossible to do. But with Him, it can be done, and there can be a sense of peace and joy even in the midst of sorrow.”

Most often, it is fear of the unknown that causes women to abort their special-needs children. Eileen Haupt states, “If only a mother expecting a special needs child could know who her child really is. If only she could feel the joy and the love that she will feel for her baby if she welcomes her into the world. If only she knew how many hearts would be changed by her special baby’s presence. If only she knew, she would never abort.”

There is currently a war going on against special needs children. While those with Down Syndrome have been the primary targets to date due to pre-natal testing, it is only a matter of time before other abnormalities are also targeted. While there are certainly exceptions, the majority of doctors are far too quick to suggest abortion when something is wrong with the baby. They fail to see the blessings and lessons that these children can bring to the world. They fail to acknowledge the inherent worth of every person created by God. We must fight for life for those who cannot speak for themselves.

Grab a box of tissues and read A Special Mother is Born. Whether you are the parent of a special needs child or not, these stories will open your eyes and your heart and help you to appreciate the value of every child God sends to this world.

11 Things I Have Learned Since Becoming A Special Needs Parent

1. Not knowing is a lot harder than knowing. Yes, there is a lot we can do via therapy to help our children walk, talk, learn, etc. But the hardest thing to admit is that most of it is simply up to their brain and its wiring. There are no certain predictors that a special needs child will develop speech, be able to read, be potty-trained, or become self-sufficient . Good signs, yes. But nothing is certain. The not knowing can drive you crazy if you let it.

2. The internet is a blessing and a curse. On one hand, there is valuable information out there. Yet, information overload can get you stuck. You end up reading too many awful things — that often don’t apply to your child at all — and it can deplete your hope and make you paranoid.

3. Connecting to the special-needs community (whether it be acquaintances, support groups, or the internet) can be both a lifesaver and bummer. It is vital to find people who know what you are going through. Yet, sometimes it can produce even more negative feelings. Since there is always someone who has it worse than you, it can make you feel guilty for complaining. And, since there is always someone else who has it much better, you can sometimes forget that, when it comes to parenting, stress and worry are relative. Those people are just as immersed in their concern over their children as you are and, understandably, aren’t grateful simply because it could be worse. It can always be worse.

4. Holidays and special events magnify the situation. Birthday parties are no longer joyful events. Your special needs child is in an unfamiliar setting, one with all kinds of new dangers. You actually have to observe typical children alongside your child, so his delays and social difficulties are painfully obvious. People naturally want to know what to buy your child. And you might not know. He might not play with toys. And you will have to endure the present opening and cake cutting that your child is tuning out in front of everyone present. No matter what is said and done, there is an air of sadness. Ditto for Christmas.

5. Well-intentioned people will silence you and add to your frustration. They don’t mean to, but it is human nature to comfort and soothe. Invariably, they will attempt to do so in awful ways. Some will deny there is a problem and say that everything will be just fine. By denying there is even a problem, they effectively silence you and leave you isolated in your own mind. Some will try to remind you how grateful you should feel. And, while gratitude is a great thing, being reminded that you aren’t just makes you feel worse.

6. Picking your battles will take on a whole new meaning. A lot of folks will look at you like you are crazy for “giving in” to a 24/7 diet consisting of nothing but chicken nuggets and crackers. Even more will judge you for “giving in” to what they view as tantrums and being spoiled. You, however, know that therapy, joint attention activities, and getting to school are the real nonnegotiables.

7. People will surprise you. Causal acquaintances will step up to be better friends than the friends you most believed you could count on. There is nothing like becoming a special needs parent to give one clarity.

8. Doctors and other experts really don’t know everything. Your pediatrician and other persons doing behavioral screening may not see what you are so worried about and may try to convince you nothing is wrong. They may encourage you to wait and see. You will want to believe them and may forget that childhood development really isn’t their speciality.

9. If you aren’t a naturally assertive person, you will have to become one. People ranging from loved ones to Early Steps to the school system will give you a lot of reasons why they can’t meet your child’s needs. Even if it goes against your nature, you will have to fight for him. You will have to insist — which is both harder and easier than you might expect.

10. It’s easy to neglect others when you are caught up with the needs of one child. You can forget the importance of date night with your spouse. You might forget a friend or loved one’s birthday. You might realize that your typically developing children aren’t getting enough attention from you. And you might realize you are not taking care of yourself and are about to fall apart. You will have to figure out a way to stay both connected and together. This is hardest thing to learn and do of all.

11. You will develop an appreciation for the little things. There are moments of interaction and progress that will steal your breath. Hugs and kisses are unbelievably precious. And you will understand why this little soul was given to you. It’s because you are a perfect match for one another. And that is what sustains you through everything else.

What they didnt tell me about my childs disabilities....

Here are some things you will not find in your research:
You will not learn how this diagnosis will affect your marriage or other members of your family. You will not be told how it may fundamentally alter your perceptions of what is "normal," how it may change your view of human beings, how it can force you to question small talk and why we behave the way we do, how it will transform your outlook on life, how it will change you, how your life and everything you assumed to be true, is no longer what you thought.

Having a child with disabilities may cause you to feel things you never dreamed possible. You may know moments of joy and moments of despair you could not have imagined. You may find yourself going to untold lengths in the hope of helping your child. You may feel distracted, unable to concentrate. Your work and career may suffer. You may learn what it is to be sleep deprived. You will come to know what it means to feel desperation. You will know sorrow in a way no one can prepare you for. You will know happiness in a way no one can prepare you for. Sometimes you may feel both sorrow and happiness within the same day, within the same hour, within the same minute.

You may spend money you do not have on yet another treatment, yet another doctor, yet another specialist, yet another therapy, yet another intervention, all the while rationalizing that if it helps, it will all be worth it. You may contemplate doing things you would have scoffed at before your child was diagnosed. You may find yourself trying things that defy logic and have no medical basis. You may listen to implausible, anecdotal stories and think -- we will try that next. You may dream your child is speaking to you in full, complex, beautifully self aware and revealing sentences. You may wake from those dreams believing for a few seconds they were real and not a dream. You will pray that you might dream again. You will welcome sleep, as you never believed possible. You may ache with sadness because your child is crying and in pain and your presence brings them no solace. That ache may become unbearable when your child hits themselves in the face, bites their own arm or hand, punches their own legs or stomach. You may question every maternal instinct you have.

You may feel ecstasy from being hugged, unprompted. You may feel the exquisite joy from having your child reach for you, ask for you or look at you. You may know the joy that comes from seeing your child work so hard at something that does not come easily to them. You may celebrate when they use the bathroom unaided, drink from a cup, sleep for more than a few hours without waking you, try a new food or simply acknowledge your presence. You may feel a gratitude you would not have believed possible. You may cry from happiness when they say a word, any word, even if you are the only person who can understand what the word is. You will know what it is to appreciate commonplace things -- eye contact, the correct use of the word "me," "you" and "I," physical contact initiated by your child, a word, any word spoken or a smile.

You will feel a fierce love for your child that seems to come from a place that is not of this world. You will know what it is to love unconditionally and you will understand what that really means

Potential

On December 26th, Lilly will have been hospital-free for a full year. There are still quite a few dr.'s appointments that loiter, stalk, linger on our calendars each and every week. And some that always will.  But things are manageable now. We have a routine. And strangely enough, I enjoy it. 

We are looking forward to spending Christmas in our our home this year. For so long, it has seemed that our 'real life' has been on hold.  Quite frankly, we have been robbed of so many occasions, traditions, and milestones. Until now. We are ready to create our own traditions. Enjoy being just a regular family. I can't wait to leave the medical jargon, prescription refills, and therapy appointments behind, for just a few days.  I simply cannot wait to see her face when we light the tree and start to tear into all of those gifts. She is going to love it! 

Being so close to the action, it is difficult to see all that Lilly has accomplished this year. Too often, I forget to acknowledge just how far she has come. How incredibly hard she works. At everything. When we left the hospital, she was 10mos. She did not sit up, was still drinking from a bottle. Had little or no gross or fine motor skills. The looks in most of her doctor's eyes were not hopeful for her future. They were uncertain she had much potential and did not encourage us to expect  her to do much more than what she was already doing. 

At 21 months, she is now 19.5lbs and stands over 30". She has waving now, both into mirrors at herself, and in response to us waving at her. She sits up on her own. Beautifully, I might add.  She bears weight, stands and walks assisted.  She can take shapes out of a shape sorter, and puzzles. She turns pages in books to see the next picture. She drinks from an open cup and wears size 12 month clothes. She even sits facing forward in her carseat. Which she thinks is absolutely hilarious. 

Recently, we have purchased a gait trainer for her. Otherwise known as a (medical) walker. She has only been using it for about 2 weeks and is already getting into trouble. It is the first time I have ever found myself telling her 'no'. Funny thought for mother's of typically developing children, I'm sure. The first time she went for a light socket, I wept. It was just a tiny, tiny glimpse at a very, very typical experience. But I wept. Silently. Alone, in my kitchen. For one minute, I was just like every other mother of a toddler. And for just one minute she was a typical 21 month old, doing something she wasn't supposed to. It was life altering. 

Over the weekend, for the first time ever, she walked with intent toward a toy we held out for her. We scared the daylights out of her with our cheering and hooray's. It was another moment, another glimpse at her potential.