Thursday, July 31, 2014

As long as they are healthy

I love seeing pregnant mamas.  I loved being pregnant.  One of the things I got asked when I was pregnant was whether the baby was a boy or a girl, and if I had preferences.  I hear this question asked to other people all the time, and you know what the most common response is, "as long as they are healthy, we don't care what the sex is".  I'm not judging people who say that, I know that I have said the same thing in the past. 

But here's the thing.  What does healthy mean?  I have three children with Down Syndrome.   One of them has no health concerns at all.  One has things we need to be watchful for, but is what I would consider healthy.  One of them has a heart condition, but only need yearly monitoring at this point.  So, all of them "I" would consider healthy.  We don't have daily hospital or doctor runs, no equipment needed in the home, no oxygen, no feeding tubes, no trachs, nothing. 

So what do we (including myself bc I used to give the same answer) really mean when we say "as long as they are healthy".  Does it really mean as long as they are typical?  As long as they are normal?  Are children who have disabilities automatically considered not healthy?  Are we really saying we will be happy as long as they are like everyone else? 

And then I wonder, what kind of message does it send to parents of children who have disabilities, to say, we will be happy if they are healthy?  Does that mean they should be unhappy bc their child is not typical, not healthy?  Does it mean that child won't bring them the same joy as a typical child?  Does it mean they won't get into trouble, climb onto tables and out of cribs? Does it mean they won't fill our hearts with such joy that it physically hurts?  Nope.  Pretty sure I have that feeling with all my children, including those with a little something extra.  Does it mean there won't be heartache?  No, but there is that with typical children also. 


I sat with a new friend today, and I saw the heartache that can go with an unexpected diagnosis.  But what I really saw?  I saw beautiful almond shaped eyes.  I saw a contagious grin.  I saw a beautiful baby.  I saw baseball games and friends and staying up late to eat ice cream sandwiches when i stared in his perfect face.  I saw acceptance in his mamas eyes, along with the sadness and I thought, he is perfect.  He is an amazing creation.  He was made exactly the way he was intended to be. 

I hear from parents all the time who had biological babies with down syndrome or other diagnosis, that when their babies were born, people didn't know what to say, or said, "i'm sorry", or things along those line.  Being on the other side, the side who sees what a joy these children can bring, now I think and say, "congratulations!  He/she is beautiful".  Just some things to think about the next time a family member or friends gets an unexpected diagnosis!




Because all children deserve some excitement when they come into the world :)

Thursday, June 12, 2014

All on her own

There is a little one who has stolen my heart in another country yet again.  No, this isn't an announcement.  I would give much to call this precious girl my own, but we cannot leap again right now. 

She has a terrible, sad little referral picture, much like our own Jojo did.  She is non mobile, non-verbal, doesn't feed herself, doesn't talk.  She has a long list of things she DOESN'T do.  In fact, a better question might be what does she do.  Sound like anyone else we know? 

Jojo's referral pic and packet were scary.  A long list of things that she couldn't do.  Scary thoughts of lifelong care and unknowns occasionally filled my head.  But we knew.  We knew Jojo was ours.  We didn't care if she never walked or talked or was a "productive citizen".  And then we met her.  We brought her home.  And oh my this child.  She fills my cup to overflowing everyday.  She loves to be held and cuddled and kissed.  She seeks us out for affections.  She has a ready smile for everyone that makes my heart sing.





I see sometimes where people will tell potential adoptive parents, that these children will change and grow so much when they get home.  That is often true.  Sometimes though, it's not.  We were prepared for Jo to never progress.  Because she was enough, all on her own.  We didn't need to KNOW that she was going to progress or respond or give us back anything. 

I would hate to think my worth as a person was only for what I could do  or how I could change.  I know someone can SEE this little love, see her for the treasure she is and the treasure she will be for the rest of her life.  Please, won't someone see her?  She is worth it, I promise.  She will change your world for the better.  I don't promise that it will be easy everyday, but I promise she is worth it, all on her own. 

https://www.youtube.com/watch?v=-WH36GWyIr4

http://reecesrainbow.org/77203/rita-3

Sunday, June 1, 2014

Progress

Almost no words needed :)  Trying solid food, standing, holding our own bottles! We are making lots of progress!
 
 
 
 
 
 
 
 



Sunday, May 18, 2014

a child of my own

A question I have gotten occasionally is if I love my adopted children like I love my "own" children.  All of my children are "my own" of course, but I know the person asking wants to know if I love them like my biological children.  To be honest, each time we have adopted, I have had this question myself.  Will I love my new child like I love the others?  Course, I remember having those feelings each and every time I was pregnant too sooooo take it with a grain of salt I guess. 

Sometimes when you bring a new child home (at least for me), there isn't an instantaneous connection.  Sometimes it feels like babysitting.  Sometimes you wonder when the kid is going home and then you remember they are home.  I've heard from other adoptive parents that those feelings are all normal.  It can be shocking as a parent to not be immediately overwhelmed with love for that child you have been working for so long, but there it is. 

For me, my aha moment came two weeks ago.  Of course, I "love" the girls, and we have fallen into a good routine so  I don't feel like a completely crazy person anymore, but sometimes those lingering doubts come.  We noticed that Lanie had unusual bruising on her back, and being that she is nonmobile, we were concerned.  Children with DS are much more likely to get leukemia in general.  Our pediatrician didn't seem overly concerned but ran bloodwork just to be on the safe side.

We got the phone call the next day from the pediatrician.  It was early when the doc's number came up on my cell, and I had a sinking feeling.  They never call early if it's nothing.  She told me that Lanie's platelets were low, much lower than they had been previously, and that she was referring us to a hematologist.  I asked her if she was actually worried or just sending us to cover bases.  She told me she was worried, and that she had put a stat referral in.  She wanted us to be seen that next day (fri) or mon at the latest.  Her urgency in wanting us to be seen was not reassuring at all.  The hospital called us themselves an hour later, and that just made me even more nervous.

I called my mom to tell her what the doctor said, as she knew we had taken her to the doc for the bruising.  I thought I was ok, calm even, until I heard her voice.  I broke down and cried like my heart was shattered at the thought of my baby, MY baby having leukemia.  Heartwrenching, ugly sobs that you can't control. 

We took Lanie the next day and they ran bloodwork. Her counts are up so they are just going to watch her every three months, but are not overly concerned.  Which is GREAT and what we wanted of course.  The whole thing was eye opening for me though, in that it really showed me my deep down feelings for my little squishy girl. 

Wednesday, May 7, 2014

Progress for Jojo

Living in the trenches and working through hard stuff with kiddo's who have been institutionalized is a constant work in progress.  I took the girls to get fitted for sure steps today (little braces for their feet) and Jocelyn had a hard time.  She does not like change and usually has a negative reaction to new experiences. 

She cried when the man started to measure her foot.  BUT, two amazing things happened along with the crying.  She cried outLOUD!!  Sounds like a weird thing to be excited about right?  Well, ever since we picked her up, she has cried SILENTLY.  It is heart breaking to find her crying silently on the floor, really truly heart breaking.  I was so excited to HEAR her crying today and not bc she was physically hurt (she cries when they take blood). 

Secondly, she reached for ME today, bypassing the fun, new physical therapist.  This is HUGE.  She is working on attachment, and up until this point would have chosen any random "caregiver".  New people were even better for her honestly, bc in her mind, they might be "better" than us or not require hard things.  We call it mommy shopping here.

 Side note: this is also why we sometimes limit who can hold and hug her.  She needs to know who mama and papa are first.  Anyway....today, today she crawled PAST the fun NEW person, and reached for me, her mama, to comfort her.  It seriously made every single hard moment in the last three months just melt away.

 She knows.  She KNOWS I will protect her.  Forever and ever baby, mama will keep you safe.  Mama will push you to try hard, but she will also be there to catch you and encourage you.  And the glimpse I got today, that she is starting to realize that, made my heart catch.  Of course I don't think she is firmly attached by any means, but she has started the journey, and THAT is exciting!

Oh this pic?  Yeah, she stands and plays at the water table now.  Just like a big girl!

Saturday, March 8, 2014

Home

So, one month ago today, the most awesome thing happened.  Jocelyn and Lanie became American citizens, after tolerating a VERY long day filled with flights and more flights and waiting and more waiting.  The trip was about what I expected ;) 

So much that I could say about the last month.  The dilemma comes when posting things on a public forum, such as a blog.  Do I say everything is great and wonderful?  Do I talk about the struggles we have had?  What do people want to hear?  Before I adopted, I think I wanted to hear that everything was wonderful and all children just slid right into their families, even though I logically knew that wasn't the truth.  I have seen other bloggers open themselves up to lots of criticism and worse, by being honest about the truth that adoption can be hard, the hardest thing you may ever do, and im just not sure i'm ready for it.  But I think, there can be a medium there.  Potential adoptive parents need to know that everything isn't glitter and unicorns after you get these kids home.  We work so hard and so long and fundraise and paperwork and EVERYTHING that goes into getting these kids home, that sometimes I think we forget we will actually have to parent that child we have worked for.

 I think one of the reasons adoptive parents are so reluctant to be REAL, is that there is a mentality that "we asked for this".  Well, of course we choose the girls.  We choose to bring them home even knowing that they had down syndrome and other delays.  We knew it.  We choose them.  We choose life for them.  But does that mean that it is never hard?  Does that mean that I shouldn't be able to complain to a friend or family?  Does that mean that I should struggle in silence?  No, I don't believe it does so here is the truth.

Both of our girls are very delayed.  It wasn't a surprise  as we had read their files before committing and of course Jared met them in September before we were able to bring them home.  Knowing in my head that they were delayed, and even understanding the "why" of it, is not the same thing as caring for them every day.  Neither girl is mobile or verbal, and they both have varying degrees of institutional behaviors such as head banging, rocking, self aggression, eye contact avoidance.  We have one child who is desperate for any kind of kind word or kind touch, and one that would be very happy to lay on the floor and have no contact at all.  One of my children was not treated very kindly, from what we can tell.  We will be dealing with the repercussions from that for many, many years to come. 

Honestly, the days are hard, we all got the flu as soon as we got home, so our beginning was made even harder.  Physically caring for both girls is hard, carrying and changing and hauling them around, feeding and diapers and all that.  Finding a new normal is coming slowly, very slowly.  I hate asking for help, really really hate it, and so I am learning a lesson in humility these days.  I asked for help from other parents to get Eli to school, as I was having to wake up the girls everyday and it was stressful for all of us.  Accepting that my kids are eating a lot of sandwiches and fast food right now, and that is okay too. 

 Laying out the reality of our days to a very few trusted friends and having them assure me, yes, it is normal to be hard.  It is okay to cry.  It is okay to struggle.  Hearing others say those words is SO helpful to me, to feel that I am not alone in all this. 

In fact, I had just poured my heart out to a friend the other night, really telling her everything I was struggling with, and today I opened up my mail to the sweetest letter (from someone I don't even know) telling me how she had been following our adoptions and wanted to bless us with a little surprise.  Dear friend, your note was exactly what I needed today, it lifted my spirits like you cannot even imagine.  Thank you so very much!

Now, I know you only come to read to see the pictures ;)  so here you go!