Monday, October 18, 2010

31 for T21: Harder Than I Thought....

Well, I have debated and debated about whether or not I should blog about the documentary I referred to in the last post. I am intentionally not going to put the name of the movie in this post because I don't want my blog to bring people looking for the movie..... because I do not want anything I write to be taken the wrong way or to be offensive in the least.

But, if I were to be completely honest I had a harder time watching some parts of the documentary than I thought I would. I think because I have "arrived" so to speak in the baby and toddlerhood aspect of parenting a child with special needs...."arrived" in that I am here and it is not scary like I once feared while laying in that hospital bed post diagnosis. It took me awhile to get my legs about me but I did and I am here and it is all good. However, I realized while watching the documentary that I am still a little nervous about Reid's future. That surprised me. I guess while watching I was reminded that we will always have hills to climb and that made me a little sad. Not that I didn't already know that but it hit me in a very soft spot....the spot where moms ferociously want to protect their children and ferociously want to ensure that their child has every opportunity to live out their dreams.

Honestly most days I forget Reid has Down syndrome, it is really quite a non issue over here and when I look to Reid's future I guess I subconsciously have expectations of him being able to hold a job and able to live on his own with buddies and I would love for him to find someone special to share his life with, that is a definite prayer of mine...all of those are. But, while watching the documentary I saw a very real reality for two families that was a little bit different from what I imagined and I had to come to terms with that may be our reality as well. Maybe, maybe not. But I had to sit with my feelings for a bit and I kind of felt like I was back in that new place again of processing what all this means for us, for our family, for Reid, and for his future as I did in the early stages.

What if he does always live with us...what kind of living arrangements will we need? What if he is able to live on his own, could we afford to buy him a place to live in? He can always work with Toby in the coffee roasting facility, Toby would love it, but what if he doesn't want to? Will he question why he doesn't have his own family? ...and all the other "what ifs" began to rest heavy on me. But, I know what the truth is and the truth is one day I will have "arrived" in that future stage as well and I will look around at my surroundings and I will say the same as I do now..."I am here and it is all good". But, it is a process mentally and emotionally and sometimes things weigh more heavily on your heart than other times. This happened to be one of those times.

Then the very next day, as life does these things sometimes... a song came on the radio that I had not heard in a long time. The very song that played in the car ride home on New Year's Eve 2006 as we were bringing our newborn home from the hospital for the first time... a song called "Take My Hand" by The Kry. As I sat and listened to the song my mind went right to the vision of all of us strapped in the car that New Year's afternoon, quietly pulling out of the parking structure and hearing the words being sung on the radio... I remember asking Toby if he was listening but I knew he was as I saw the streams of tears running down his cheeks. So, here I was now almost 4 years later sitting in my car mulling over the movie and up comes that very song again. I had to smile because it was such perfect timing for a perfect reminder that no matter what, no. matter. what. the future holds it will indeed be okay, we'll figure it out.

This was an appropriate song for our initial car ride home to start our new life back in 06... and it was an appropriate song for me to hear again this week.... (pause the music at the bottom of the blog before clicking on the song Take My Hand)

Take My Hand (Lyrics)

I know there are times
your dreams turn to dust
you wonder as you cry
why it has to hurt so much
give Me all your sadness
someday you will know the reason why
wih a child-like heart
simply put your hope in Me

take My hand and walk where I lead
keep your eyes on Me alone
don't you say why were the old days' better
just because you're scared of the unknown
take My hand and walk

don't live in the past
cause yesterday's gone
wishing memories would last
you're afraid to carry on
you don't know what's comin'
but you know the one who holds tomorrow
I will be your guide
take you through the night
if you keep your eyes on Me

take My hand and walk where I lead
keep your eyes on me alone
don't you say why were the old days better
just because you're scared of the unknown
take My hand and walk where I lead
you will never be alone
faith is to be sure of what you hope for
and the evidence of things unseen
so take My hand and walk

just like a child
holding daddy's hand
don't let go of mine
you know you can't stand on your own



Summers Family said...

Hi - my name is Nicole and I was turned onto your blog by Erin Moland. I've checked it out a few times and wanted to finally introduce myself. Your kids are adorable! I have enjoyed reading about Reid and your journey these last 4 years. We are only 1 year into our journey but each day gets better and better. Our daughter Annabelle has Spina Bifida and Hydrocephalus. She has had 6 surgeries but is doing very well.

I wanted to let you know about a morning of prayer that will be taking place this Wednesday. Here's the link:

Although this day of prayer or movement as we are now calling it was inspired because so many unborn babies diagnosed with SB are being aborted, sadly the same could be said for many medical conditions diagnosed in the womb. I hope it's ok that I am passing this information along. I just can tell from your blog that you love Reid and much as I love my Annabelle and the thought of someone opting to not bring them into the world is heartbreaking.

On Wednesday morning I will be praying for ALL unborn babies, their mother's and the Dr.'s I hope you will consider joining us.

Thank you for sharing your stories on your blog.

Mom to Jack (5), Benjamin (3 1/2) and Annabelle (14 months)

Philip May said...

Cheri, I can SO relate to your feelings about the future. My own view of the future moves around a lot depending on the day and my mood.

I am torn between my desire to retire to some place exotic and the desire to make sure Jonathan is surrounded by people who know and love him. On our little island, I am always amazed at all the little kids we run into who say Hi to him. He is known and accepted here. How cool would it be for him to be an adult here and continue to be surrounded by this community?

Lately I am OK being "stuck" here. I enjoy time with Jonathan so much that being close to him forever (physically and in a support role) doesn't seem like such a bad fate.

I haven't seen the movie yet--its on our DVR. I'm not in a hurry to see it because what if it is not "our story." I know some who have ordered Deedah and have put it on the shelf for the same reason. Its tough to describe; we come to peace with our own situation and its hard to muster the energy for another's situation.

So we seek the positive in each day.

Thanks for letting me prattle on.

Becca said...

I had similar thoughts after watching it, but just keep in mind, that was a different age, many years ago, when parents could do little more than protect their children, and there was little or no structure in place to prepare their children for the real world. I think independence may have come more readily to them had they been born now...

Heidi said...

I just LOVED that song Cheri - thanks so much for sharing it! Brought tears to my eyes as I remember all of the times God has helped me see that he is always with me and that his plans are perfect - not always easy but perfect!

I have not seen the documentary yet but I can relate to your feelings about the future. I have high hopes for Joel and sometimes don't even want to think about some of the difficult issues that we will probably face. I know though that God will be there in the future just like he is here in the present now.

Kelly said...

That documentary sure took me some time to process. I will be posting on it too, hopefully soon! I share your thoughts too, but you are so right, we will make "each stage" work. I also agree with Becca, there are so many more services available to our children know that will help them in being independent. And if they are not, that's OK too.

One of the things that I had a tough time with was the lack of understanding what Ds is. It is my hope that Landon will be a self-advocate someday, and he can only do that if he truly knows who he is, inside and out. And I am quite confident that he will.

There is some truth to the statement that sometimes it is "us" who places limits on our kiddos. It's tough, but us mama bears always do what's best in the interest of our children.

GREAT SONG by the way=)

Nan P. said...

“the spot where moms ferociously want to protect their children and ferociously want to ensure that their child has every opportunity to live out their dreams.” That spot never fades Cheri, never ever! No matter how old your child or children are.

I felt that spot oh so strongly when Cathal’s parents were given the very first diagnosis (the very sick little heart one) and I heard my daughter wail on the other side of the door… this is engrained not only in my heart and in my mind, but in the deepest recesses of my physical being.

Yet it is this very spot that makes us good mothers. And I now realise I have that very same spot where Cathal is concerned… I cherish that “spot” ;-)

Lisa said...

Cheri, thank you for this honest post. There hasn't been a whole lot of talk about the documentary in the Ds blogging community, which has surprised me a little. I've been curious how other parents of little ones with Ds reacted to it. I can relate to a lot of your feelings, though some of mine are different. But the movie definitely hit me in a raw, soft spot.

Mel said...

Haven't even heard of the movie here, but have read lots of blog posts about it, and I think I will seek it out. The future is something I worry about, and try hard not to. Luke gets a child disability allowance over here- about $40 a week. Strange amount, but there it is. We have been putting it aside since Luke was born, as a just in case fund for surgery etc if needed. He now has nearly $6000, which we will use to buy a rental property at some stage, which will pay it's own mortgage, and then we will be able to afford a house for Luke should he wish to live independently. Anyway, just thought I'd share our plan :)

Katie said...

Loved, loved this post. You're so right, things aren't as scary now as I imagined!!! And, I certainly hope that's true for the future.

Still debating seeing the documentary, but I appreciate your honest opinion of it.

And, LOVED the song that you heard on the way home, both times. How inspiring!!

Thanks so much for sharing

Kele@ said...

Cheri, I actually loved the movie... but yes, I had the same worries and thoughts. But just as you, I came to the same conclusion...
The Lord has never failed me... He is not here just today to help me, and Presley... He will ALWAYs be here to guide us.
If Pres does marry, I just pray it is to another Ds person who has a loving and supportive family like all the ones we have met in blog land.

P.S. That song... OMG, did they write that especially for us? So perfect for your ride home, and how kind of the Lord to show you that sign... the one reassuring you He will always be there for Reid and your family, 'simply put your hope in Him'