1

A Nervous Mama

IMG_1265So the day is almost here.  Surgery day!  Peanut will check into the hospital at 6 am on Thursday morning to have her tonsils and adenoids removed.  I know, this is a simple procedure and its not a big deal.  Let me tell you, to a mama of a 2 year old…this is a big deal!!!  We have to hand our baby girl over to strangers and pray that they will return her to us safely.

I just finished reading this article… Anesthesia & Down Syndrome  and now my anxiety is even higher!!  My husbands response was “Stop reading these articles, pray and trust that God will take care of her!”  I know that God loves Peanut even more than I do.  I understand that He has a plan for her far bigger

than I can ever image.  I just need to stop focusing on

myself right now…and remember my job is to rely on Him.

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Please keep us in your thoughts and prayers this Thursday.  We for sure have to stay one night however the Doctor did tell us there is a possibility of a 2-3 night stay.  I will try to keep you posted.

 

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Dear Birth Mama

1-28Dear Birth Mama

I want to first and foremost say thank you.  Thank you for giving your sweet baby life, and trusting in God to find her a home.  We will never meet, we will never share stories, but I promise you, you will always have a special place in my family.  Because of you, today we celebrate the one year anniversary of our Jana’s adoption day.  The day that officially changed her name from Baby Girl…to Jana Lynn.  You were not there to witness this event, but I can tell you, it was a day full of love and excitement.  Your baby girl is cherished more than I can ever explain.  Not just by the 5 of us, but by everyone she meets.  She is a beautiful, strong, loving, intelligent girl and I am so honored to be able to watch her grow.

1-28-1I wish there was a way to share my thanks with you.  So many people are confused at how a mother can walk away from her baby.  I try to explain I don’t believe that is what you did.  I want to believe that you were scared, but that you loved this tiny beautiful girl enough to put her needs before your own.  I cannot imagine the pain you must have experienced while making this decision.  I pray for you.  I pray that you somehow know that Jana is OK.  That you have been blessed for the blessing you have given us.  I pray your heart has healed from this amazing sacrifice you’ve made.

Today I just want to tell you that Jana is doing amazing.  She is growing and developing more and more each day.  She is strong-willed and determined and has not let this disability dictate her life.  I can see already that this girl is going to do amazing things in the future!  You would be so proud of who she is, I know because I truly am!

Again, thank you…(that phrase is just too small for the gift you have given us isn’t it?! ) We are forever grateful for your love and sacrifice and I promise I will strive every day to be the mama Jana deserves.

We are all eternally grateful for your special gift.

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3

Not Just a Picky Eater

jana-1-3When Jana first started eating Gerber solids we were thrilled!  She took to them without any issues or fuss.  She was a huge fan of veggies and would only eat about half the jar of straight fruit.  I was so excited that feeding time seemed to come easy for her.  As she has gotten older she has gotten over eating mushed of up foods.  She sees what we are eating and that’s what she wants.  Which is wonderful!  Now that she has 3 teeth she can actually take pretty decent bites out of things (Including my hand…ouch!).  However, we have noticed she has developed a pretty serious food texture sensitivity.  If she is not comfortable with the way something feels, she instantly spits it out.  This means, most foods, she will not even attempt to try.  Actually, even older foods that I knew she liked (broccoli, pasta, sweet potatoes) she wont give a time of day!  It’s made meal time extremely difficult!  I’ve mentioned before in the past, for the longest time she HAD to have infants oatmeal each morning.  If I changed it up she would throw a fit and refuse to eat anything.  Now, we have moved on from that.  She has added Eggo Waffles to her list of approved breakfast!  Which has helped!  However, now her list of other approved foods has gotten shorter.  So far our go to for sure foods are: french fries, waffles, pancakes, pizza crust, puffs, club crackers, coconut milk ice cream (she’s lactose intolerant) and almost all fresh fruit cut up.  As you can see, there are no veggies, proteins or nutrition in basically all of these!!  As a mama, I am very concerned she is not getting the nutrition she needs on a daily basis.  I am able to still sneak in a jar of Gerber Little Bits foods, but sometimes that ends up in a huge fight.  With most of the food on me, and not in her tummy!

So is this all “normal?”  Yes and No!  A lot of children with DS have some kind of issues with eating.  Most struggle with low muscle tone in their mouths and it is almost impossible for them to chew correctly.  Or they can chew, but struggle swallowing.  Some kids refuse to try anything that is not a liquid form.  Each child is different, and unfortunately I haven’t found much research on Jana’s issues.  She does see a nutritionist when she visits the Down Syndrome Clinic each year, but there is none locally I can consult with.

What can we do?  Keep trying.  Meal times will be dramatic and messy, VERY VERY MESSY!  We are hoping that if we just keep allowing her to try the foods we are eating, some would stick.  We have to try to keep pushing her, but not to the point where she is terrified to try to eat.  Its a very fine line.  It has been very stressful, not only for her but for both mama and daddy!  We know if she just tries, she will love the foods we are giving her.  I’m sure this stage will soon pass…hopefully…and she’ll start us on another battle.  Until then, we are keeping a mop and broom close by for clean up!

1

Standing UP

img_7136It’s be awhile since I posted an update about how Jana’s therapy is going.  Since both crawling and raising herself on her knees are checked off, we are moving on to standing.  So far this transition has gone wonderfully.  Our therapist Betty said 9 out of 10 of her kids pick this up without issue or stress.  At first each time Jana stood, she had this look of pride on her face that was so amazing to see!  Now, I think she’s starting to get more confident in herself to do it, and just knows she can 🙂

Currently, they are teaching her how to stand up from sitting on a small stool.  At first I thought because this would be easier than from her on the floor.  But I was wrong.  Sitting on the floor allows her to shift her weight and get up a little easier.  From the stool, she is forced to use more of her upper thigh muscles.  You can try it yourself, sit on the floor and get yourself back up to standing position.  Then squat down as low as you can, and straighten back up.  Go do it…I’ll wait…

Did you feel the difference?  So basically if Jana can master that, standing from the floor will be even easier.  Actually last night (during game 7…Go Cubs!) she was climbing on me and actually put one of her feet down to shift up to stand.  Unfortunately she wasn’t wearing her shoes so she wasn’t very stable.  But it is still progress!

Yesterday, for her in-home-therapy we met at the local Center for Exceptional Children.  She got a chance to work in the Mobility room.  What’s that?  A room full of bright colored mats, tumbling squares and fun!  This is her second time using this room and each time she has a blast.  She has no clue that she is actually working hard while having fun.  So far this has helped cut back the tantrums and we’ve been having very successful therapy sessions!!

Jana is really working hard at this new stage.  I don’t doubt that any time soon she will master standing and start moving on to moving!  She doesn’t like to stay still all that much, so I am anticipating having my hands full when that happens!!

2

Chasing Dreams

2016-10-16-150553Its been a while since I’ve posted.  Jana is doing amazing!!  Crawling like crazy now and making my days even more interesting 🙂  Currently she is battling a small cold that we are hoping goes away very quickly.  She is getting stronger and even more amazing each day!

Today I wanted to open up a little.  For as long as I can remember, I have never been more confident and comfortable than when I am behind a camera.  When I have a camera in my hands, I feel at peace and stress free regardless  of my environment.  I’ve worked at studios, ran a studio from our garage, taken pictures in fields and been a part of some beautiful weddings.  It has always been a side job and not a full time job the way I’ve dreamed about, until recently.  I have an opportunity to open my own photo studio.  I will be able to run it the way I want it ran, hours will be set by me and I will be able to capture the images I dream about, every single day!  To most people this is a perfect dream come true!  To me, it has been terrifying!!  Don’t get me wrong, I am so excited at this possibility, but so many fears come along with it.  Funny thing is, all the financial responsibilities, stress of running a business, all the planning, none of those things scare me as much as having a dream that doesn’t revolve around Jana.

For the past 16 months, my entire life has revolved around Jana.  I am with her almost 24 hours a day, 7 days a week.  I can probably count how many times we’ve been apart!  I’ve devoted my life to her, to being the best mama and support she could have.  My other kiddos are older and honestly just don’t really need me as much as she does.  And that’s great!!  That’s how it is suppose to be.  But Jana will always be different.  How can I pursue something that she might never have a part of?  I feel selfish, I feel regret for the time I already know I’ll be away, I feel fear that I wont be there when she needs me.

Last night Juan and I talked about this.  I told him, I have no right to chase my dreams, when she needs me.  Juan’s response was, “she might never stop needing you and your support,  But that’s ok…it doesn’t mean that your dreams need to stop because of her.”  I know he want’s me to do this…he believes in me more than anyone else.  But I wasn’t sure if he really got it.  Then today he sent me this: My Reason To Dream  It’s a blog post dealing with almost the exact same situation I am in.  This mama has a beautiful little boy named Jude.  She is a mama of a special needs child, just like I am.  For the past 2 1/2 years, she has put her life on hold as well to be there for her boy.  Now, she is, like me, is scared to start pursuing her dreams.  Turns out there are a ton of mamas out there feeling the exact same way!  All their dreams are different, but the fear is the same, what if our babies need us!?  Having a special needs child is so much different that having a typical one.  Anything can go wrong, anything can happen!  What if me pursing my dream takes away time with her and she doesn’t reach her goals and mile stones like we have planned?  What if me being away holds her back from reaching her dreams?!  2016-10-16-150452

Juan tells me that me doing this will open doors for Jana in the future.  She knows how much I love the camera, since I have one in her face basically every day lol.  I do want her to see that dreams can come true.  That with work, patience and perseverance, she can do whatever it is she dreams to do.  I want to be that example for her, to be the fighter that she is teaching me to be.  Jana has showed me that when things are hard, you just keep going!  You push more and more, and rely on the others around to help us out.  She is my motivation to be better!

So where do I go from here?  Do I allow myself this selfish venture?  Do I chase after my dream…where the possibilities are still unknown?  I think I am starting to learn that as a mother of a special needs child, my dreams will always be a part of hers.

1

Little Miracles

IMG_4045Today while Jana was finishing up her physical therapy, a young mom walked in with her little boy.  At first I couldn’t see him.  She had him in the car seat, but it was very clear to see the oxygen tank that followed him.  She sat down near me and pulled out this sweet, adorable, happy baby boy.  I asked how old he was and she said 9 months.  She asked me a little about Jana, she thought they were the same age 🙂  Little Eli not only had an oxygen tube to help him breath, but his head was obviously “deformed” (I hate using that word!  It was exactly the way God intended him to be!)  She informed me that Eli was born with a genetic disease that basically deteriorated part of his brain.  She was told that Eli would probably not make it to birth, let alone live after it.  She was encouraged to have an abortion at 24 weeks.  She said the night before her scheduled abortion, she cried and felt that it wasn’t her place to take his life.  She would trust God and be prepared to say good-bye to her baby boy at birth.  She told me she didn’t even have anything for him.  She had one outfit, and her priest available to baptize him, because the Doctors insisted he would die instantly.  Well little Eli survived!  9 months old and growing stronger and stronger.  He may never crawl or walk, but he is full of life.  He was very intrigued by his right hand and loved cuddling into his mamas arms.

We talked a little about how people count these kids out.  That they are so much more capable than people give them credit for.  He was her little miracle and she was so proud of the little boy he was.  It didn’t matter what disabilities he had.  She loved him just the way he was!

When I left I couldn’t help but to think of Jana’s birth mom once again.  She had the option to abort her and be done with it.  Instead she gave her life and trusted she would be loved.  I wouldn’t change anything about her and I am so proud of who she is.  I can’t believe how many tiny lives are taken away before they get a chance to prove themselves.  God has a purpose bigger than all of us for this little miracles.  We just need to stop being selfish and ignorant and allow them to be who God created them to be!

0

Trust Your Travel Agent

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Just recently I once again read “Welcome to Holland.”  If you are unfamiliar with this story, it is about having a child with a disability.  Usually it is associated with DS and Autism children.  I’ve attached it to the bottom of the post, but basically its saying having a child with a disability is like planning a trip to Italy.  You have everything set up, you’ve read all the books and you are ready to land in this beautiful country.  However, the plan doesn’t land Italy, it lands is Holland.  Now there isn’t necessary anything wrong with Holland, its just not Italy!  But that is your trip, Italy isn’t an option, and though you know that was the trip that was planned, you now are starting to enjoy Holland even more.

I’m not very sure how I feel about this story.  I understand completely how it ties in.  I know most families have a huge shock and fear when they find out they have a newborn with a disability.  Maybe it is because we picked our trip to Holland.  We didn’t necessary have our trip all set.  Its not like we had our bags packed and the tickets booked.  We just knew that God had our itinerary all set up waiting for us.  He knew exactly where we were headed and exactly what stops we would be taking on our way.  All we had to do was meet Him at the gate and trust that He had it all covered.

But isn’t that how it is with any new child?  You never know what is to come.  He might be a prodigy, might be bouncing off the walls, he might struggle through school for no reason at all.  Each child is different and perfect in every way.  There is never any way to welcome a new child and expect it all to be planned out.  Its OK to dream for our kids.  To want the world for them.  That’s our job as parents.  But that doesn’t have to stop because your child has a disability.  I am constantly dreaming about how Jana will be as she grows.  What new experiences she will have.  Yes, there are times when I freak out and know that it will not be easy.  But it won’t be all that easy for my other 3 kiddos either.

Having a child with a disability doesn’t have to make you settle as a parent.  It just means that God trusted you even more to care for such a special little person.  Take pride in that!  We get to experience a trip that so many never get to travel.  Its exclusive, and has a lot of unexpected and exciting stops.  It is the trip our travel agent knew would be perfect for us!  We just need to sit back and enjoy the ride!!

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Jana, 1 day after she came home to us 🙂

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.