Sunshine and Flowers

When people comment about this blog, the thing they comment about the most is my ability to share my feelings.

Like it’s something special.

This has me curious.

Why is it unique that I can voice my feelings?

Should I keep them quiet?

Do others keep their emotions to themselves?

Why?

Being a parent of a child with a disability is a very tough job. It can be, “all sunshine and flowers,” but sometimes it’s not.

I have friends who are experiencing this whole parenting thing for the very first time and won the Ds lottery.

I have friends who are experiencing this whole parenting thing for the very first time and won the Ds adoption lottery.

I am one who is experiencing this whole parenting thing for the fifth time but this is my first lotto win…

…and it’s hard!

So why keep it to myself. It’s not like I keep the good things to myself; I share them everywhere I can.

We have to own our feelings.

We have to accept them.

Very few of us really want our children to have a disability.

We don’t want to see them struggle.

We don’t want to have to fight for them.

We don’t want people to stare and whisper.

We don’t want people to feel sorry for us.

We don’t want to ask, “Why?”

But it all happens, and it’s tough.

Regardless of if you are a first time parent, adoptive parent, or a parent of multiple kids, you are a parent first. Your emotions are valid. You deserve to acknowledge them. You deserve to feel them and to work through them.

And so do your kids…

Saying that, “Sometimes being a parent of a child with special needs is not fun,” is being honest. But that doesn’t mean that you love your kids any less then any other parent. It is tough. It’s rough. I wish that I didn’t have to do it.

BUT…

I love being a parent to Leah and yes, there is a difference.

Leah is amazing and beautiful.

She is smart and silly.

She makes me proud.

Dealing with all the stuff that is thrown at me because of Down syndrome, stinks. But
I gotta do it because I love her and she needs me to.

That doesn’t mean I have to like it though…

Stupid emotions!

Yesterday, I attended a baby shower for my sweet cousin. It was beautiful really. The décor was welcoming, the food was great, (thank you grandmas for your amazing Italian cookies! ;) the people were friendly, the service was wonderful, and the presents! Oh my, the presents!

Oh yeah, I got a pretty cool prize too!

Within 10 minutes of being there though, I had to go to the restroom because I was in tears.

UGH!

Stupid emotions.

When babies are born (well I guess we can add getting ready to be born too, now) it all comes back.

The memories of that horrible/beautiful time when Leah was brought into this world.

My heart just aches and aches.

When I sat down I remembered that it was about exactly one year ago that the shower was for me.

It was a beautiful shower too.

I was getting ready for my “perfect” little princess.

The “tie-breaker.”

The next to last baby because I certainly couldn’t have an odd number.

We had never been so prepared for anything before(I didn’t have to buy diapers for about 6 months! :))

We had no idea what was ahead.

The sonograms were fabulous. My health was perfect (I only gained 5 lbs!). We were SO ready. I loved my pregnancy with Leah.

I don’t think I wish I knew.

I would’ve worried too much.

I was lying in bed thinking, and talking with Steven, about it all last night.

I wish…

The Doctors were a little nicer when breaking the news. Not that they were mean just a little too matter-of-fact.

I had a better understanding what Down syndrome was (I pictured people who were institutionalized).

I didn’t have to be away from my other kids for so long.

I didn’t feel so much sorrow.

I wasn’t so scared.

The pain wasn’t so hard to bear.

I knew more about it all.

I wouldn’t change…

Leah, of course!

The time Steven and I had to grow together.

The knowledge I’ve learned.

The advocacy spirit I have been given.

The gentleness Leah’s siblings have towards her.

The knowledge I’ve been able to share.

That we were so prepared…

There are just too many things that I wouldn’t change, to list them all.

My cousin’s baby shower was very eye opening. Maybe I needed those tears to help me cope just a little more with it all. I do feel better today and it helped me put things a little more in perspective.

Leah’s birth has been such a blessing for us. We have so many things to be grateful for because of it.

Even if it started as a nightmare.

"All Done!"

Yesterday Leah said, “All Done!”

Seriously, she did!

If her physical therapist didn’t hear it too, I wouldn’t have believed it. I would have passed it off as some cute babbling.

But that’s not what it was.

What 10 month old says, “All done?”

What 10 month old with Down syndrome says, “All done?”

Mine Does! :)

I’m not bragging though; I’m just proud.

These are the type of accomplishments I really never would’ve thought twice about with Leah’s siblings. They just did them.

I have no idea when they rolled over, sat up, waved bye-bye, or said, “All done.”

Things are different with Leah. She is sort of under a microscope. Each and every milestone is a miracle, not just a milestone.

When she reaches them on time it’s as if the Heavens open up to show us what God is made of.

When she falls behind there are a million rationales and excuses why.

“Every baby is different.”

“Some kids do things in a different order.”

“Well, look at what she CAN do though.”

“She’s working so hard on mastering this; she’ll make it to that.”

Why can’t I ever use the reason, “She has Down syndrome so things will take longer?”

It’s like I still can’t admit it.

I can’t see it.

Or do I just not want to?

I feel like I have to prove to the world that MY baby is different.

She will not have any delay. She will develop normally. She won’t need special ed. She will live with her husband. She will have babies. She will be successful.

Probably not though…

Or maybe?

Celestial Soul

We belong to The Church of Jesus Christ of Latter-Day Saints.

You know the one, with all of those warm and fuzzy commercials.

We’re Mormon.

We converted to the church about exactly 6 years ago.

I grew up Catholic and Steven grew up with not much religion.

So when you are Mormon, there are certain things you kinda take for granted. One of which I find myself pretty guilty of lately.

Our church teaches that children who are born with a disability are unique children of our Heavenly Father. They are valiant warriors and strong souls. They proved their loyalty and love for Heavenly Father‘s plan in the preexistence in a way which grants them esteemed status.

Their disability is a shield from the temptations and workings of Satan.

Heavenly Father loves them so much that they are protected in this life from making really dumb choices which may stop them from returning to Him.

He wants that for all of us, but those spirits have already proved that they deserve it.

Here’s what I have taken for granted...

I have this celestial being in my midst.

She is a real-life angel.

She is as close to Heaven on Earth as you can get.

Heavenly Father trusts HER to ME!

That just doesn’t seem possible!

I’m not really that good of a person.

I’m not quite sure He thought this one out very well.

But I guess He is Heavenly Father and he really doesn’t make mistakes, right?

So how do you handle THAT?

How do I become worthy to be her parent?

How do I believe that I am worthy?

How do I make sure I follow along in her footsteps?

This is a pretty big challenge He has for me.

I am entrusted to raise this celestial child in a way which He sees fit.

I’m sure He’s watching my every move.

No pressure... :)

Yeah, she's mine!

Some days I think,

Look at my baby, don’t you wish yours was as cute as mine?

Other days I hope no one notices.

Why does it matter so much?

Why do I even care?

Is it because I don’t want the sympathy?

-Probably a little. Why would I want sympathy for this little miracle I am tugging around?

Is it because I don’t want to answer the million questions I get?

-Probably a little too. It really is no one’s business.

Is it because I don’t want to see THAT look from everyone? You know the, Oh, I am so sorry, look of shock everyone gets when they find out.

-Most definitely that.

I wonder if I am shamed, but I know that’s not right. I really am proud of Leah, just as I am with all of my other kids. If anything I am more protective and gentle with her then the others.

I wonder why any of this even matters.

Leah is beautiful, after all.

She is unique.

She is smart.

She is strong.

She brings out the best in us all.

She is mine!

So, who cares about everyone else, right?

Why does it matter anyway?

I wonder when it will begin?

That inevitable time when Leah will become delayed.

Or is it inevitable?

I feel like I am still in the “honeymoon” phase of this whole Down syndrome thing.

Leah is slightly delayed physically but not yet in any other category.

I am assured it will happen though.

So why do I have high hopes for her future when I have been told time and time again that Leah will need massive amounts of help just to live in her own apartment?

I feel naïve.

I am also told not to limit her potential.

How can I not limit her potential?

I have all of the “experts” around me reminding me that the delay will begin, it’s just a matter of time.

When will I get past this phase?

When will it not bother me that I have a child with Down syndrome who will need a lot of assistance?

Why does it still seem like it’s not true?

This is a crazy thing, this Down syndrome stuff…

That was EARLY for a Saturday!

Today was our first ever Down syndrome conference.

I learned some pretty interesting things.

Don’t ever put money in your child’s name; use a trust.

Be very prepared for your child’s IEP meeting because most of the time their recommendations do NOT fall in line with your desires for your child.

Keep lists and records.

And other stuff, but those are what stick out in my head.

The keynote speaker was Carrie Bergeron-Desai. She is 33 and has Down syndrome. She was very articulate and inspiring. I was extremely impressed with how well she answered questions. She was quick on her feet and very knowledgeable.

She has her learner’s permit but has chosen not to get her license. She doesn’t like to drive in the busy traffic of Rome, NY so she just drives with her dad.

She is married but in January her husband’s parents separated them.

That broke my heart.

I reconnected with some parents I have met briefly before and met some in person who I only knew through Facebook.

I made a few new friendships and was able to meet two amazing grandparents who I have heard so much about.

All in all it was a good day, even if it started at 6am!