Ups and downs

Sometimes I can't help feeling a little blue about things.  It just happens.  I'm human after all.  

Today I was in Cary Lynn's room organizing her multiple medical supplies.  I was counting feeding bags, trying to figure out what I did with some wraps to help with skin growth around her g-site, cleaning up her feeding pole and thinking that if her medical scissors wandered off one more time I was gonna have a bird.  

It hit me.  When did this become my normal?  When did I get so used to these things?  When did the novel become commonplace?  Most parents are busy picking up dolls and blocks.  I place medical bags that feed my daughter through a hole in her stomach in a pretty bin.  

It hit me hard.  Like a punch in the gut.  I had to sit down for a little while and take it in.  Have a little cry.  

It just isn't fair.  It isn't fair what happened to my child.  She should be going to ballet classes, telling me NO in a loud little voice, shoving crayons up her nose, and doing all the stuff that used to drive me crazy with Marvin.  Funny how much I would kill to see that behavior now.  How much I took it for granted. 

But life is rarely "fair".  If it was I would be 5'8", blond, and a size two on a "bad day".  But that's not the way it works.  I'm 5'2", a brunette (alright, I went gray in my 20s and have been coloring it, but I did used to be a brunette, I swear!!),  and have a love affair with baked goods so the only 2 in my house is my daughter. I may have to have a talk with the gene fairy about this when I'm done with this post!  

Even though there are intense moments like today there is so much that I find to be grateful for.  Thanks to that awful hole in her stomach Cary Lynn has gone from 19 pounds and failure to thrive to 23 pounds and making it on the growth chart.  Her legs are getting stronger and have more range of motion.  She continues to do a bit more every day.  

I can't have fair so I will take what I can have.  A very happy little girl who continues to surprise and amaze me.  And come to think of it, I don't really miss having things shoved up noses.  Not one bit at all:).  

Tough Choices

When I was heading to an appointment with Cary Lynn the other day I was stopped by a hello baby girl aren't you getting so big?  I had to take a second look cause I was pretty sure it wasn't me they were talking about (and if it was they might be getting yelled at).

It was actually Cary's biological brother and his adoptive mom.  Cary Lynn has two bio brothers.  Both are older.  Both are adopted to separate families.  The bio parents have no rights on any of them.

After a hello we made small talk.  For me it is awkward.  There is no Peggy Post on how to handle this. Cary's bio brothers are adorable.  The oldest has multiple special needs as well.  He looked happy in his walker and spent time trying to bop Cary Lynn on the legs while I was talking.

I enjoy talking with both families.  I like seeing them proudly show off their children.  The children are flourishing and growing with their families.  But we adults have had to make some tough choices.

The toughest one has been what do we do with sibling relationships?  For Marvin it was cut and dried. The bio family is out of the picture and due to the severe abuse it is for the best.  But Cary Lynn's siblings are in good places.  They are loved and cared for.  When we see each other at appointments they seem so glad to see her.  They talk about how well she is growing and how much she can do.  We chat and talk about what our kids are up to.  We share how much they look alike.  How they are joyful happy kids.

It is a dance.  We are careful not to step on toes and I am careful not to share too much.  I see them looking at her and the wheels turning.  There are unspoken words that hang around as we are careful not to overstep boundaries that we lay down.

For me I am torn.  Being adopted I know what it is like to have all sorts of questions that have no answers. To wonder, to question.  To think about things.  I don't want Cary Lynn to feel resentful that I have taken something away from her.  I know the other families feel that as well.  We have often voiced it.  I feel guilty after these meetings often.  Did I give her enough time?  Was I supportive of her feelings?  Did her bio brother have to hit her that hard?

We watch.  But so far the children are all little.  They don't understand that the person who is right next to them is a blood relative.  So for now we have decided not to force relationships. Someday Cary Lynn will be older and if she wants to form new relationships with her bio brothers we will support her.  She will be ready for it then.  I speak from experience on this one.  It is better to wait for now.  Until she is old enough and ready for the truth.

 Cary Lynn's world is our family.  Her brother's aren't the ones out there.  Marvin is the one she calls "brub".  I'm Mama and Shannon is Dah.  We have become a strong unit and an amazing and dynamic family. And I am blessed to have them all in my life:).  

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Paying it forward

We have been really busy around here.  I love to blog and keep people in the loop, but the last few weeks I am lucky if I have time to tie my own shoes let alone post.  With two kids running to appointments. therapies, and our inbound services it really can get crazy.

The last couple of posts were kind of downers.  But life tends to go a hurricane 5 category speed for me so I just don't have time to weep into my lace handkerchiefs and lay on the sofa and moan (really, plus we are getting our house painted so I can't even find the sofa!)

But I have been up to something.  Well several somethings.  I tend to go full throttle:).

When we visited Dr. Roman a few months ago Cary Lynn got to experience a LightAide for the first time.  She loved it!  I really wanted to get her one, but the price just threw me.  Special needs stuff doesn't come cheap.  Then I got to thinking about the other visually impaired children in our area.  How LightAide could help them as well.  I also wanted to find a way to thank two very special places near and dear to our heart.  The Virginia School for the Deaf and Blind (VSDB) and Children's Hospital of Brooke Road.  Both places have gone above and beyond the call of duty for our little girl.  When we were handed our little bundle of pink joy she came with (and now has even more) labels than a pickle bottle.  It was like being told to drive to Wisconsin with no map or gps.  I had a general idea of how to get there, but with no map there was no way I could do it.

VSDB and Children's became my map for my daughter.  Sometimes I still take shortcuts and senic detours, but for the most part my map has been pretty darn good.  So I set out with the lofty goal of not one, but three LightAides.  Thanks to fundraising and some really generous people and a very generous discount from LightAide I was able to get three LightAides, a carrying case, and switch for everyone.  VSDB has theirs, Brooke Road gets theirs Monday if all goes well, and we have had the chance to use ours and share with several families in the area!

Sorry, I do have pictures other than the boxed one, but my camera has gone awol with the painting!  I will post some of Cary playing with it soon!

So while this was going on some mama blogging friends of mine in different states have had children hospitalized.  One of the mom's blogs has really gotten hold of my heart.  Mostly because her little boy mirrors so many of my daughter's complex needs.  Her blog is here. Caden and many other children have so much going on.  Their families live in the hospital.  The things that mean the most to me when I am there is the hot meals delivered, the company (it is boring sitting there), and the little gifts that just lift your spirits and say hey I'm thinking of you!  So I have been sending out care packages.  Shhhh, don't tell.  

These are just some of the things that I enjoy when I take my "vacations" to VCU.  Haha. Anyway, a few of these boxes have been dispatched and the recipients should get them by next week.  I have really enjoyed doing this.

So many people have done amazing things for our family.  After a while the thank you just seemed so shallow and empty.  Life is bumpy and sometimes the going is hard for our family. For me.  But I always hold on to the good that happens and we always make it through:).  It's past time for us to spread it on and I'm so ready to pay it forward!