Monday, May 19, 2014

Preparations for our Disney Trip

This summer, we are taking a trip to Disney  World in Florida. Driving many hours, the heat, 5 children, the overstimulation and the $$$$$, it hardly seems like a relaxing vacation. But there are so many other reasons why we want this trip for our family. And we have found many ways to cut down cost (might be another blog post).

Our primary reason for choosing Disney is because of the way they handle children with disabilities. Afua's wheelchair is welcomed everywhere, there are so many things she can participate in and be part of the beauty of Disney. After her eye surgery, she can now see well and I can only imagine how wonderful fireworks will be to her.

We also know there is a window of time that Disney feels "real". Our three youngest children had things happen to them that took away from their childhood. If we can give them a week where they are just kids in a imagination rich place, then it's worth every penny. For my girls to dress in fancy dresses and my boys to battle Darth Vader, no other place will provide quite the same experience. 

It's a lot of planning, a lot of learning and at times overwhelming to plan a vacation at the Happiest Place on Earth. But we found a travel agent specializing in families who have a lived one with a disability. She walked us through obtaining a handicap accessible room, how to navigate the parks and locating all the facilities we will need to take care of any medical needs we may have.

I hope to write more as we experience Disney World through Afua's eyes. It will be fun!!!!

Family Photo Session

After months of medical stuff and a long cold winter, I was finally ready to have our family picture taken. Since we don't do this often, I knew I wanted to find someone special to capture the various personalities in our family. With Afua using a wheelchair, we needed a spot that was accessible. With our various skin tones, the lighting needed to feature all children equally. And the person needed to have the patience to keep up with our energy, melt downs and mealtimes. Tall order, I know.

I found the perfect person for the task, but as we approached our location, it was 48 degrees and raining. Our photographer suggested an indoor location and we went with it. The result? Great pictures and a fun day spent exploring the city and riding public transit.

In this picture, Afua is in her wheelchair but it is not the focus of the image. I love the urban setting, the movement of the train and the way Afua is looking up toward me. So often in pictures, children who use wheelchairs are put to the side but our photographer found a way to have her beauty shine in every picture. 

Her sweetness melts me. How did I get to be her Momma? There are days I feel so unequipped to the task, but she loves me just the same. 

At another transit stop, we found a cool bench and the cloudy day provided the perfect backdrop. All our kids were such troopers as they knew we would get back on the train and ride some more. 

At the same transit stop, there is a covered walkway. We took Afua out of her wheelchair and she loved seeing the raindrops fall on the glass. 

My spunky girl up front, holding onto her brother who wouldn't have it any other way. And no way is my oldest taller than me. Optical illusion. I was holding Afua because we had to lift her wheelchair on and off the train. Lesson in lack of accessibility....but Eric was a trooper doing the heavy lifting.

What a wonderful day and I look forward to seeing lots of other images from our fabulous photographer. I learned that having a family story-telling photo session is the best way to go!

Saturday, May 10, 2014

gait trainer

We have had a prescription for a gait trainer for some time now. We have submitted it to insurance and we are in the process of obtaining one knowing it will be months before anything happens. Our home equipment provider lost the fax, it was re-faxed, then they needed more info from me, then we needed doctor's stuff and then came the first denial. It's just one item on a list of 10 things and we end in this endless loop waiting. I know I've written about it before, but it just keeps happening.

The sad thing was that Afua was ready. So ready and loves to stand upright. They got her a gait trainer at school but it is not quite perfect. But she loves it and wants to be up.

Out of the blue, I got a picture and a message from a friend who works with children with similar conditions as Afua. She asked if we could use a gait trainer for her as they had one that wasn't currently used. Yes!!! And a few days later we made a trip to try it out.

I am constantly amazed how all of Afua's needs are provided for. Each and every need is met so specifically and it is such a blessing.

We took the gait trainer for a trial walk in our drive way and we will have a great summer! We can keep it until our insurance finally approves one, or Afua's needs change.

Go Afua!!!

Birth Mother/First Mother's Day

Today is a day dedicated to first mothers  everywhere. We honor the women who chose life knowing they would not parent their children or who for variety of circumstances no longer parent their children.

Whenever Kofi, Joy or Afua accomplish something I think of their first families. I don't take the responsibility of parenting lightly and I think about their first mothers often. I wish they would all know how loved these children are and how precious they are to us. 

Like when Afua took her first steps with her gait trainer, I wondered if her mother knew this was possible. For the sick malnourished babe to get strong enough to stand and take steps? I wonder if Afua's spunky personality is like hers and who she resembles in her first family. We will not know these things (most likely) but it doesn't stop me from wondering.

I don't pretend know the sacrifice of any birth mother. I don't know the feelings of not knowing if your child is dead or alive, in an orphanage or with a family. But I acknowledge it and it changes me as a mother. And I am a blessed woman who gets to tuck in 5 awesome children, kiss their boo boos and celebrate their victories. They are loved no matter how they joined our family. And maybe that is the best way to honor our first mothers. 

Tuesday, May 6, 2014

Sharing our story

Today, I share our story "I Took a Second Look" on the Full Plate blog. I love reading why people adopt a child with different abilities or a medical diagnosis. So honored to have our story there.  Join me at The Full Plate Blog

Friday, May 2, 2014

9 Months Home

I love celebrating Afua's milestones. I wrote about her 3 months home and 6 months home  accomplishments and now it's time for a 9 months home "brag" post.

Afua is now 14 pounds heavier (yay) than she was 9 months ago. She has also progressed from 3T to 5T clothing size (looooong legs) in that time. On paper, Afua will turn 4 in July, but we feel she is most likely already 4. With no definite answers, we leave things as is. Figuring out a child's true age is common with international adoptions and it's sometimes hard to navigate. We have thought about re-aging Afua but for her, staying younger is definitely a benefit. She is in a great preschool and will get better services longer.

These are some of Afua's recent accomplishments:

~ Using her stander for 1 FULL HOUR!!! We started with 5 minutes and have worked our way to an hour. Twice a day.

~Taking steps either in a gait trainer at school, or walking a few steps when someone holds her hands.

~ Uses sign language to indicate "eat", "more" and "yes". Understands more signs which helps our communication and lowers frustration.

~Although Afua loves to be in motion, she will wait her turn, sit more patiently and engage in play with toys. HUGE help at Dr offices.

~She participates in play with siblings. Rolling a ball back and forth, putting things in containers, pushing buttons for cause and effect. All such important developmental steps and her preschool has definitely helped her with learning to play.

Afua is working hard at therapy to learn new movement patterns, she is so used to tightening her body in straight planes of motion and the goal is to break those bad habits and teach her how to use her body a different way. It is hard work that pays off in the long run. Afua has athetoid cerebral palsy so she has movements that she does not initiate and sometimes those movements work against her. Learning to work with that is a process and Afua is proving to be determined once again.

We are waiting on insurance to approve various equipment an braces that will make our life easier and improve Afua's quality of life. There is no how-to manual, so we learn from our failures and successes. Afua is opening our eyes to a new world and we feel so blessed by this journey.