Category: Special Needs

Categories
Kids Parenting Special Needs

Bye-Bye, Baba

This morning, Blythe and I watched the slide show I made for her first birthday.

I pointed out how big she is becoming, how tall and smart.  We talked about how big girls drink milk from a cup, and babies drink milk from a bottle.

I pointed to the Blythe on the screen, baby Blythe.  I pointed to the Blythe on my lap, Big Girl Blythe.  We talked about how there are babies out there who could really use her bottles.

So, I made her one last bottle.  She asked that it be a BIG ONE.



And then we emptied the contents of her bottle cabinet into a box, and sealed it up with miles of packing tape.  I think all kids love tape. 



Blythe decided to send her bottles to Baby A.  She knows he could use them.

She carried the package out to the front porch all by herself, and set it on the bench for the mail lady to pick up.

She said good-bye to the box, good-bye to her baba’s.

And then, as we read books and got ready for nap, she began to cry.  She missed her baba’s.  She loved her baba’s.  She didn’t want them back – in her mind, they already belonged to Baby A. 

But she was grieving.  She was so very, very sad.  She doesn’t want to be a big girl anymore, she said.

I lay there in the dark with her, rubbing her back and feeling the tears fall down my cheeks and I mourned with her.  For a kid with Sensory Processing Disorder, there aren’t a lot of sure-fire options when it comes to soothing. 

Baba’s were her thing.  If she got overwhelmed and her senses felt like they were going out of control, a baba would calm her right down.  It’s hard for both of us to let them go.

But it’s time.  Recently she was very, very sick for two full weeks.  During that time, she developed a bad habit of “needing” a bottle to get her back to sleep every time she woke up in the night.

Now that she’s better, she continues to wake up every 2-3 hours, asking for one.  There are at least a dozen reasons I want to nip that habit right in the bud.  And the only way I can think of to do that, is to make bottles completely unavailable.

I know she’ll be alright.  She’ll find another way to soothe herself, and I’ll help her every step of the way.  This is a good thing.  It is.

But walking away from that package, from the last thing that kept her in “baby” status?  It was hard.  She’ll always be my baby. 

But it’s time for me to let her be a big girl.  My big girl.

Categories
Parenting Special Needs

Stages

Blythe has a raging double ear infection and a nasty, wet cough.  

I haven’t slept more than a few minutes at a time for 4 nights in a row, because she cries out, in pain, constantly throughout the night.  I lay next to her, and never fall completely asleep.

To say that I’m exhausted doesn’t begin to cover it.

Tonight, at bedtime, I lay there beside her and cried silently as she fidgeted for an hour before falling asleep.  The antibiotics contain traces of corn.  It’s the lesser of all the other corn-infused choices. 

For now, in the beginning, she’ll just be hyperactive.  Soon, though, the effects of corn exposure will start to manifest in a million different ways.  It’s hard to say how far this will knock her back, when all is said and done.

I’ve been thinking a lot lately about the parent I used to be, before Blythe was born.  The mother Alison had for her first 3 and a half years of life.  That woman was exactly the parent I always hoped I would become.

I love my daughters, both of them, with the kind of passion I never thought would be possible.  I wouldn’t trade them for anything.

But sometimes I wonder what our life would be like, if Blythe didn’t have special needs.  If I could only be the parent I used to be…

If I could run in to Rite Aid for cough drops like a normal person – without having to kick myself for letting my baby girl rest her cheek against the counter for a split second.

Her face started to swell immediately.  She was fine, after a speedy dose of Zyrtec.  But it rattled me.

What would life be like if I could relax?  How would things be different if I didn’t worry constantly?  What kind of mother would I be now, if I hadn’t had only a dozen restful nights of sleep in the past three years?

Would I let my kids have corn dogs?  I ran up to the store the other night, alone, and felt an unexpected pang of jealousy when I overheard a dad tell his two boys to pick something – anything, really – from the deli for dinner. 

I’ll never, ever be able to do that.

I mourn the loss of what could have been, sometimes.  On nights like these, when I’m exhausted and worried and tearful.  It makes no sense to pine for a life that won’t ever happen… especially when, for the most part, I am so incredibly happy with the life I already have.

Today, Alison lost her first tooth.  What a huge milestone it was.  I wish we could have celebrated, but instead we spent the afternoon at Urgent Care, with Blythe’s needs once again taking the front seat while Alison’s lesser needs are pushed to the back. 

Will she come to resent her sister, if I’m not careful?  Will she wish for a life that could have been?

I hope not.

Categories
Parenting Special Needs

Big Papa

Baby A is two days old.  Five pounds, five ounces, with the most adorable baby cheeks.



From the nursery window, he looks like any other baby.  But Baby A is different.

The woman who gave birth to him is a meth addict, and a smoker.  Child Protective Services took him from her as soon as he entered this world, and thank goodness. 

Without her, he has a fighting chance.



Our friend Jesse was informed just today that he gets to take Baby A home – parental rights have been signed over to him.

It was a scramble to put together everything a new, first time daddy might need.  In the baby section of Wal.Mart, I threw diapers, wipes, blankets, bottles, formula, baby soap and teeny-tiny nail clippers into his basket.  From my garage – a car seat, a crib mattress. 

That is enough to get them through the first few days.*

Jesse knows that taking care of Baby A will be difficult.  Meth babies face horrific challenges, ones that can last a lifetime.  But everything Baby A needs rests in Jesse’s hands, in his heart.  He will be the most amazing Big Papa – dedicated, careful, informed. 

Everything his birth mother was not.

After today, life for the two of them will never be the same.  And I, for one, can’t wait to see this beautiful family grow.

———

*Offers to help Jesse and Baby A have been pouring in.  Can I just say, again, how much I love this community?  The two of them could use just about anything you might think of, and donations of any kind are appreciated.  Email me at Jerdre53 (at) aol (dot) com or dm me @Sweet_Life on twitter if you are interested in helping.  Thank you!*

Categories
Kids Special Needs

Decisions, Decisions: Choosing a Preschool for my Special Needs Child

Blythe will be turning three this May, and it’s important to me that I find a suitable preschool for her before her birthday.

With Alison, I started looking for preschools right around her first birthday (anal retentive, much?) and I toured dozens before I found the right one for her to attend at age three.  I assumed Blythe would attend the same school, and even began working there a few months ago, in an attempt to get the staff ready for dealing with Blythe’s food allergies.

But then, I stopped being in denial about the fact that Blythe has Special Needs.  The truth of the matter is, most preschools – even amazing, incredible ones – aren’t prepared to handle kids with Special Needs, and when those needs are life threatening, as in Blythe’s case, there just isn’t room for error.

With Alison, I did all the researching, touring, and deciding without her input.  With Blythe’s Sensory Processing Disorder, I knew she would have to be involved in the search.  I don’t see, hear, or smell things the way she does, so I am pretty much unqualified to choose a preschool for her on my own.

Today, Blythe and I spent an hour auditing a small, in-home preschool run by a sweet German lady, whom I’ll call Frau.  The school isn’t specifically for Special Needs kids, but Frau has a lot of experience with Autism and food allergies, so she will have no problem accommodating Blythe.

Random bonus?  Jeremy and I have been teaching the kids German and Spanish (what little our addled brains can recall, that is) since they were in the womb, so Blythe may end up being bilingual, after all.

I’ve made a list of “Pro’s and Con’s” to file away and compare to other preschools when the time comes to make a decision, but so far, the list of “Pro’s” is a mile long.  At the top, in big block letters, is the fact that Blythe was instantly comfortable in the environment.  

I also really like the way Frau has coordinated the curriculum.  They study one subject per week (math, science, reading, social studies) so that even kids who only attend one day a week – as Blythe would, to start out – get a well rounded learning experience. 

Another huge “Pro” is that while Frau’s preschool is structured, she also allows for individuality.  Case in point: one of the kids today was having a hard time concentrating on the task at hand, and so she gave him the option of either participating or playing elsewhere, quietly.  

And because of that, none of the other kids got distracted and the child in question didn’t have a melt-down.  Blythe needs that kind of environment – at least at this stage, and definitely at this age.

And?  It’s clean, organized, and child friendly.  Frau’s kids are all grown and one of her grandkids (who calls her Oma, cue flashback to my childhood in Germany!) attends the preschool.  Frau looks like a Grandma, which I think is one of the reasons Blythe was so immediately comfortable with her.

I’m excited about Blythe’s prospects.  I’m excited about our meeting with Frau and her assistant, about focusing on the next step in Blythe’s development, about continuing to tour schools that have been recommended by the parents of other Special Needs kids.  I’m excited about it all.

My baby is growing up!  And for now, that thought doesn’t terrify me one bit.

Categories
Allergies Health and Nutrition Kids Special Needs

Blythe in the Hospital – Day One

*We are home, and Blythe is well on her way to good health.  But I need to write about this.  I have to get it out of my head.*

Blythe woke up happy and playful, peeking up at me with her huge smile and sparkling eyes.

We snuggled her in our bed, breathing in her smell and giggling as she tickled us.

Suddenly, she got sick.  One moment she was laughing, and the next, she said she “had to spit”.

At first, she wanted to play between vomit sessions.  She didn’t understand why I wouldn’t let her go outside.  Soon, she just wanted to be held. 



Within four hours, she had stopped responding when I spoke to her.

As they drew Blythe’s blood and put in her IV line, I held her head in my hands and whispered to her that I was right there with her, that she would be well soon.  She stared blankly at the wall, never acknowledging the nurses as they worked above her.  She made no sound as the poked and prodded her. 

She just lay there like a sack of potatoes, the sparkle long gone from her eyes.

Before too long, we were lying in Blythe’s hospital bed, waiting for her dextrose-free IV fluid to arrive.  The staff scrambled to find corn free medication, tape, everything.  Severe corn allergy was a complete unknown to them.

I studied my baby girl as she watched the cartoons I’d turned on for her.  Occasionally, her eyes would flicker, the only indication that she was actually seeing the images on the screen.



I wanted so badly to see her smile, to hear her laugh.  To see her do anything besides vomit and stare.

I squeezed her hand, and she squeezed mine back, the first response I’d gotten in hours.  My baby girl was in there somewhere, fighting to come back.

Her Daddy came to see her, and she smiled the faintest smile.  He held her limp body and rocked her back and forth, back and forth.



We felt so powerless to help her.

She slept easily that first night.  The nurses came in frequently, but she would open her eyes for a moment and fall quickly back to sleep.



I lay in the fold-out bed next to her, waking each half hour to kiss her, to feel her, to see for myself that she was breathing, monitors be damned.

Once, twice, three times, her fever spiked.

Her body was riding a roller coaster of sickness, and we were holding on for dear life.

Just before daylight, I was sitting on her bed, caressing her leg.  

Her eyelids fluttered, and she looked right at me. 

Right into my eyes.

And spoke. 

“Mommy, go to your bed.  I’m sleeping.” 

I cried, and silently cheered, and my heart finally broke free of fear’s terrifying grip.

My girl was coming back to me.