The most powerful word

Sharing a post from last year that still applies to my life today....


Afua doesn't walk....yet

Afua isn't communicating with signs....yet

Afua is not drinking from a cup....yet

I find myself  using these phrases at doctor's appointments, school meetings, discussions with friends or relatives. I can't seem to say the first part, without adding the word yet. I wonder if my yet is viewed as a mom who is unhappy with the way things are or if they will truly understand my feelings behind using the word yet. 

 Right now, the word "yet" gives us power to hope for Afua's future. It gives us permission to say that we know more miracles are around the corner. That the hours she works so hard in therapy each week are for a purpose. And we hope that she will get to experience new things as a result of that hard work. 

Yet, if nothing changes, if nothing improves, if life tomorrow is exactly as the days before, she is loved just the same. Her performance is not a measure of her worth. 

So I guess this is really the heart of parenting a child with special needs. We live in the moment, we hope for the future and we constantly worry that our moments with our kids are cut short. Balancing all these feelings is 90% of my journey.

Orphanage

Oh, how I hate the word orphanage.  I hate what they do to children. I often say "children belong in families, not orphanages" and it's more than just a cliche to me.

Raising a child who lived in an institution, an orphanage, lets you in on the devastating truth about what that life does to a child. The effects are long lasting and they are heart breaking. That is why I advocate for children and want orphanages emptied out.

When Afua first joined our family, I could place her in the middle of a large room and she would only move the area equivalent to her crib. She didn't know a world larger  than that existed. She didn't know about toys, music, about tickles or a brother's love. After a short amount of time, she was tired and wanted to be alone.

discovering toys

She wouldn't cry, because in an institution crying does not amount to positive attention, only punishment. Institutionalized children feel little pain, they can shut off their world to block out feelings and they stop experiencing reality. Some rock, some bang their heads, some cause harm to their bodies. That is familiar and that brings comfort. Mother's arms feel scary and unknown. 

It's hard to describe the orphanage experience without exposing what my children went through. And it's just as hard to think other children are living that reality every day.  My children are brave, resilient survivors of a life that no child should endure.

This is why I advocate. Because I went, I saw and I experienced the after effects with my children. I know more children need families. The ones who are hidden in cribs, need voices to share that they exist.Because a picture of a child that is malnourished, neglected, disabled is hard to see. And it's sometimes scary to say "yes" to the unknowns that it brings. But on the other side, a family can be a game changer.

And this can be the result:

experiencing childhood joys

What an October

This month has been different than I ever imagined. Instead of pumpkins and apple orchards, it's been hospitals and surgeries. But that's the way life goes sometimes, especially when you parent a child with medical or special needs.

A few weeks ago, Afua began to have staring spells and we suspected focal seizures. Teachers and therapists all saw them and we made an appointment with our neurologist. they couldn't get us in for 10 days so we waited and documented the seizures.

cutie pie always ready for road trips

Before we could get to that appointment, we had to be rushed to the ER and admitted to the hospital. She was having a hard time, we just didn't know with what....

EEG leads were in and we waited for results

Within an hour, the EEG picked up seizure activity and medication was started.

At the hospital we discovered that Afua had been bleeding in her stomach for weeks and this imbalance was bringing forth the seizures. We were in good hands and a quick procedure was performed under anesthesia. 

most of the days her eyes were closed, this morning i was able to see her eyes

Once we were home, I was sure our cochlear implant surgery would be canceled, but our surgeon was comfortable with us going ahead. Flu season was approaching and the surgery needed to happen before then. We had two weeks of blissful happiness at home before the surgery.

within a day at home, she was happy again

snuggles with daddy

Today, we are home after a successful cochlear implant surgery and Afua is recovering well. In the coming days, I will tell you all about it.

Parenting a child with special needs is unpredictable. I am grateful for the timing of all of this though, we absolutely needed to know about Afua's bleeding before we had the cochlearn implant surgery. Now that it's diagnosed and under control, she is more comfortable and happier than she had been in weeks, even months. 

The sibling of a child who has special needs

We adopted Afua 14 months ago and she is our first child with a visible disability. I often think how our life has changed in the last year, the good and the challenging. Medical equipment, considering wheelchair accessibility of various places, appointments and surgeries have all become a frequent part of our every day life. Our four older kids have gone through the changes along with us and I have worried if they would resent their little sister or our decision to adopt her.

Jake is my compassionate kid and it was no surprise that he became a caring big brother to Afua. Her smile is all he needs to be happy.They have developed a special bond.

Sometimes people assume he is the child most affected by our adoptions. After all, he was the baby of the family and now he finds himself as the second oldest out of 5. Sure, I can't be a room mom at school or come to every class party. I may be at therapy appointments or hospital more than he likes. There are sacrifices that all of us have made to make room for more children in our family. It happens in biological families too as a new baby arrives. But the changes in Jake over the last year have been so evident and I think he is growing into a wonderful young man.

Afua's bus comes first each morning and he comes outside to spend time with her. They play basketball together (she passes the ball and he scores but he always high fives her for a great assist). Last year, when they were in the same school building, he would stop and give her a hug and kiss several times a day. He doesn't have to do any of this, but this is how he wants to spend his time.

I grew up with a younger brother who was hospitalized for weeks at a time. I know how that breaks the familiar family routine, causes parents to be preoccupied and everyone to be worried. I also know the other side, the side that shaped me to choose a helping profession, to care about the people who have a disability, who are different and who are the outcast. I learned to be patient with people who take longer to communicate and I knew the value of friendships with everyone. Jake has learned that at the age of 9. Many adults have not.

After his first day of school this year, Jake excitedly told me that his classroom is across the hall from the "children who are like my sister" (his words). He spent his recess with two students who use wheelchairs and told them he has a sister who uses a wheelchair too. No hesitation, just pure acceptance.  While he has always been a compassionate child, he now knew how to interact with a non-verbal peer and undoubtedly he is teaching his classmates about that too.

Having a child who has a disability can be seen as a tragedy and a burden.  Those unfamiliar with our life can feel sorry for Jake (or our other children). They may feel sorry for Afua because of all that she's been through. But in their pity, they fail to see the beautiful and there is so much beautiful. There is nothing more tender than a little boy's sweet good morning song to his sister. Or the way her face lights up as she sees him returning from school. And while there is so much hard and sad and worry there is the other side too. A little boy who is learning about life right in our home. And his sister, who the world thinks can't contribute much, is the ultimate teacher to all of us.

Vacation Pics

We have been back from our trip to Disney world for some time now. I have most of the blog posts ready to go, but I thought I'd share a few pictures from the trip.

We saw many of our favorite characters, Mulan was one we HAD to see.

And there's the collection of goofy ride pictures. Em knew exactly where they take the picture on space mountain, so we have some hilarious ones from that ride. THIS is why the Memory Maker was a great investment.

There were moments of contemplation and exhaustion. It was hot but we found some great ways to stay cool.

And this was the highlight for my youngest two.


It was a great trip, we drove lots to get there, we saw more than we thought we could and we made memories that will last us a lifetime. Stay tuned for more...

Celebrating Afua

Yesterday was Afua's birthday and the first time this day has been celebrated properly.

Last year, I went to her orphanage and was initially denied my daily visit. It was raining and they deemed it too cold (it was over 70 degrees). I insisted that I wanted to at least wish her happy birthday and they finally have me 15 minutes to visit.

Snuggling with Lucy on her birthday last year. 

This year, I wanted the day to be about Afua. We did soap bubbles, she snuggled in the hammock and we played with new light up toys. She loves when the entire family is gathered around her so we all played with her and surrounded her with our presence and love.

She usually doesn't stay with one activity for long, but she was swinging in the hammock just feeling the breeze. 

Exploring the slip and slide.

Afua is progressing at a rapid pace, we see the sensory processing and integration happening so wonderfully. But most importantly, she is a family girl. She loves knowing her home base and who she can trust. Having experienced a long journey to attachment before, Afua is amazingly, securely attached early on. 

Happy Birthday sweet girl! You are the glue in our family, the one who makes sure we are ALL together. You are a blessing! 

A year ago

Edited to add: I have received emails asking if there were any ethical concerns with our adoption based on this day's events. To clarify, the US Embassy did not suspect that we submitted fraudulent documents. Ultimately all our documents were verified as authentic and we were closely involved in obtaining them. But there had been cases before us with falsified documents and that is why there is an increased concerns with certain adoption professionals. 

365 days ago, I was in Ghana waking up before the sunrise. It was the day of our visa exit interview and by all indications it should have been a day of celebration. Afua had her passport, we had jumped though all the right hoops and all we needed was her visa printed on the passport.

I approached her orphanage with my friend who drove me there. The staff was not in the office so we waited for our power of attorney (POA) to arrive. Once he arrived, he called for someone to get Afua dressed. I had to fill out paperwork promising to bring her back and they sent an auntie with us (as a security guard I guess). I was running out of grace with the orphanage and the way they treated me, but I put on a happy face and scooped my girl up.

Afua sitting with our dear friend

We got to the US Embassy gate and the line wrapped around the building. Along with hearing adoptive cases, this day they also had visa interviews for Ghanaians hoping to come to the US for various reasons. The problem was that I was holding a 30 lb sick child who couldn't as much as hold her head up and the line was going to be looooong. 

I was told I could give money to the security guard to use his chair but I gave my POA a glance that indicated that I would rather stand than pay a bribe. Sorry, the Finnish stubborn side of me rose up as I saw a healthy security guard sit in his plastic chair as he watched me carry and hold a sick girl right next to him....grace...grace...I kept telling myself that over and over again.

Finally another security guard approached me and asked me why I was there. He let me in the Embassy so we could sit. My arms were numb and shaking and I'm not sure how much longer I could have held her. 

Once inside, we dropped off documents at the window for our visa exit interview. I was not aware but our POA submitted a document I had not seen before which would prove to cause a lot of confusion for our case.

As we sat and waited, Afua became increasingly distressed. The auntie sent by the orphanage couldn't tell me anything as she didn't usually care for her. Before long, Afua vomited all over herself, my dress and the chair next to us. The crowded sitting room cleared around us, no one wanted to ruin their clothes:) I don't blame them.

Finally I heard my name called. By the time I approached the window, my POA was already there. They seemed to have a spirited discussion about a previous case and finally the attention turned to me and Afua.

The embassy wanted to verify all documents in our case as there had been fraudulent documents presented previously. Also, the one document our POA submitted had a different age for Afua which raised additional concerns. It was this inattention to detail that was now causing a wait in our case. 

I was devastated to hear that we were not getting a visa that day but we would have to wait until the embassy would call me with their decision. They knew Afua was sick (they could see it as she seized in front of them) and it seemed they would proceed quickly.

365 days ago was a day that ended in many tears. Friends called, texted and messaged encouraging words and truths. Eric and I made long term plans for me to stay in Ghana. And once again, I returned my girl to the orphanage where she would lay in her crib. 

But the story doesn't end here...however devastating that day was, there was a happy ending. You can read about our last days in Ghana HERE...

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!

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. 

Walking With Dinosaurs

It's hard to put into words how excited my family is  to see Walking With Dinosaurs. The video clips we have seen are awesome but I can only imagine  how much more spectacular it will be in person.

The show depicts the dinosaurs with almost cinematic realism. WALKING

WITH DINOSAURS THE ARENA SPECTACULAR has scenes of the interactions between

dinosaurs, how carnivorous dinosaurs evolved to walk on two legs, and how the herbivores

fended off their more agile predators.

The Christian Science Monitor said, “When the dinosaurs start pouring out onto the stage,

if you don’t have to stifle the natural flight response of any living breathing being, then

it’s your pulse that needs checking.” Newsweek called the show, "that rare entertainment

beast that parents and kids can enjoy together."

Walking With Dinosaurs returns to Quicken Loans Arena July 9th-13th. 

Buy your tickets to the Cleveland Show HERE

Opening Night Tickets start at $25

  Disclosure: In exchange for my time and efforts in attending shows and reporting my opinion within this blog, as well as keeping you advised of the latest discount offers, this show has provided me with complimentary tickets and opportunities to attend private pre-Show events. Even though I receive these benefits, I always give an opinion that is 100% mine.