Afua landed on US soil 2 months ago. It has been a joyous, heartbreaking, victorious, frustrating, amazing 2 months. We have celebrated so many milestones from small to big and we have been so incredibly busy.
Medically we are in a good place. Afua has an eye surgery and ENT surgery scheduled in the next month. These are minor procedures but due to her low muscle tone we have to stay overnight for the ENT surgery. She is eating enough calories, so the worry over a feeding tube is gone for now. She has gained 5 pounds in 2 months!
Some of Afua's new skills are:
~ if she wants more of something, she will say "oh" in attempt to say more. this is HUGE in her steps to communicate with us
~ she can now crawl 6 steps and rarely rolls anymore. she crawls and scoots upright most of the time
~ she recognizes members of her family vs. strangers
~ she is starting to play games with her siblings
~ she can stand with assistance for 10 seconds and pull up to her knees while holding on to something
~ she loves music and when someone helps her clap her hands
This week we will have Afua's IEP meeting and fit her for leg braces. I look forward to both appointments and what they bring. We are very proud of Afua and all that she has accomplished.
Tuesday, September 24, 2013
Sunday, September 15, 2013
Marathon vs. Sprint
The fatigue is setting in. For almost 8 weeks we have been referred to more Dr.s than most of my other children have seen in a lifetime. Afua is bravely enduring the appointments, she experiences life with such gentle and joyous spirit that is only a reflection of the way she has survived life thus far.
There are days when we just need to retreat and cocoon (adoption term for staying home to establish a "home base" and family unit for a newly adopted child). I highly recommend cocooning, even in small doses for all adopted children. Kofi and Joy were 6 and 3, but we did not go anywhere for the first few weeks, and then we ventured out slowly. It helped anchor them into our family and we really needed to get to know each other. Afua doesn't have words to tell us how she is doing, so getting to know her is even more crucial. This mean days hanging out on the floor, having her crawl all over me and exploring some of her toys.
I have felt that as more and more medical interventions and appointments come up, that I need to slow down and have a long term view of this. Each week, I look at my calendar and think "next week will be better" but for 8 weeks that has not been the case. Not that any one week is bad, but it's always filled with driving to our Children's Hospital, waiting in various offices, saying the same things over and over again to various medical professionals and then more referrals.
Parenting a child with special needs is a marathon. And in order to avoid burn out, I am quickly realizing we need days that are not medical in any way. I need to set aside all that is to come (surgeries, therapies, procedures, appointments) and simply see her as my little girl.
There are days when we just need to retreat and cocoon (adoption term for staying home to establish a "home base" and family unit for a newly adopted child). I highly recommend cocooning, even in small doses for all adopted children. Kofi and Joy were 6 and 3, but we did not go anywhere for the first few weeks, and then we ventured out slowly. It helped anchor them into our family and we really needed to get to know each other. Afua doesn't have words to tell us how she is doing, so getting to know her is even more crucial. This mean days hanging out on the floor, having her crawl all over me and exploring some of her toys.
I have felt that as more and more medical interventions and appointments come up, that I need to slow down and have a long term view of this. Each week, I look at my calendar and think "next week will be better" but for 8 weeks that has not been the case. Not that any one week is bad, but it's always filled with driving to our Children's Hospital, waiting in various offices, saying the same things over and over again to various medical professionals and then more referrals.
Parenting a child with special needs is a marathon. And in order to avoid burn out, I am quickly realizing we need days that are not medical in any way. I need to set aside all that is to come (surgeries, therapies, procedures, appointments) and simply see her as my little girl.
Tuesday, September 10, 2013
Your child can't be your only black friend
(this blog title started out as a half-joke and as I was discussing it with a friend, I decided to leave it....for better or worse)
I wrote a post a while back about Living as a multicultural family and documented our experiences thus far. I still feel the same way as I did when I wrote that post and we continue to find opportunities to immerse ourselves into all our children's world. But as I have thought about issues of multiracial families and spoken with other (more experienced) adoptive parents, my black friends, my adoptee friends, I came to this conclusion:
Your child cannot be your only black (or Asian or biracial or....) friend.
From very young, children begin to notice skin color and race. It may begin the same way the notice blue eyes and brown eyes, but soon it turns into something else. The book I'm Chocolate, You're Vanilla is an interesting read for anyone who wants to understand how children form racial identities. No child should feel like they are always the only one with their skin color, the only one with white parents, the only one who is adopted. It's a lonely place to be even in the most loving families.
As adoptive parents, we make the choice to adopt and we need to immerse ourselves into our children's culture. Anything less is not acceptable, IMHO. We can't say that we live in a white town or we don't know any minorities or we attend a white church. We chose the neighborhoods, we chose the schools, we chose the churches. That is not a valid excuse. Children long to belong, they don't want to be the odd one out, they need mentors. I say this because I struggle with these issues too, not because I have it all figured out.
If you are thinking about adoption or you are still in the process, this is a perfect time to make sure your life is multicultural and multiracial. Consider your daily activities and how would your adopted child feel living in your world. How many people would they see that are people of color? Are there any adult or teen adoptees in your life that can give you a glimpse into your child's future? Can you plug into a community of people that would provide mentoring or a situation where you are the minority? This could be cultural or racial. This is the time to make connections.
Also consider any barriers you have personally to having friends of different races. Sometimes we have to confront our own feelings of racism (yes, even parent who adopt minority children can be racist...) or superiority. This link contains an explanation of white privilege and how that can impact our parenting or prevent us from acknowledging racism. (I haven't investigated that website for any other content, but the description is good)
While our family has found mentors for our children and frequently visit with adoptive families, I know I can always do more. So I give this challenge to others as much as myself: how can we as adoptive parents immerse ourselves into our children's world and not expect our children just to join in ours?
Your child can't be your only black friend.
I wrote a post a while back about Living as a multicultural family and documented our experiences thus far. I still feel the same way as I did when I wrote that post and we continue to find opportunities to immerse ourselves into all our children's world. But as I have thought about issues of multiracial families and spoken with other (more experienced) adoptive parents, my black friends, my adoptee friends, I came to this conclusion:
Your child cannot be your only black (or Asian or biracial or....) friend.
From very young, children begin to notice skin color and race. It may begin the same way the notice blue eyes and brown eyes, but soon it turns into something else. The book I'm Chocolate, You're Vanilla is an interesting read for anyone who wants to understand how children form racial identities. No child should feel like they are always the only one with their skin color, the only one with white parents, the only one who is adopted. It's a lonely place to be even in the most loving families.
As adoptive parents, we make the choice to adopt and we need to immerse ourselves into our children's culture. Anything less is not acceptable, IMHO. We can't say that we live in a white town or we don't know any minorities or we attend a white church. We chose the neighborhoods, we chose the schools, we chose the churches. That is not a valid excuse. Children long to belong, they don't want to be the odd one out, they need mentors. I say this because I struggle with these issues too, not because I have it all figured out.
If you are thinking about adoption or you are still in the process, this is a perfect time to make sure your life is multicultural and multiracial. Consider your daily activities and how would your adopted child feel living in your world. How many people would they see that are people of color? Are there any adult or teen adoptees in your life that can give you a glimpse into your child's future? Can you plug into a community of people that would provide mentoring or a situation where you are the minority? This could be cultural or racial. This is the time to make connections.
Also consider any barriers you have personally to having friends of different races. Sometimes we have to confront our own feelings of racism (yes, even parent who adopt minority children can be racist...) or superiority. This link contains an explanation of white privilege and how that can impact our parenting or prevent us from acknowledging racism. (I haven't investigated that website for any other content, but the description is good)
While our family has found mentors for our children and frequently visit with adoptive families, I know I can always do more. So I give this challenge to others as much as myself: how can we as adoptive parents immerse ourselves into our children's world and not expect our children just to join in ours?
Your child can't be your only black friend.
Saturday, August 31, 2013
Cerebral Palsy
One of the first things we knew about Afua was that she has Cerebral Palsy. We were not troubled by the diagnosis and we knew that she was perfect just as she was. But once we took her to our first neurologist (I say first because we now have two that follow her) he was not sure if there was another type of neurological disorder going on. We had and MRI and we waited for the results.
Turns out, she does have CP. She had lack of oxygen to her brain either during birth or in utero which caused a part of her brain to be affected. We are following up with neurologist #2 to understand the extent of her injury better. So in some ways I was thankful to know what is going on, but a part of me was so sad that day.
I cried for my little girl and I cried for all that she has been through. I can't understand the magnitude of the rejection and loss she has felt during her first years. I cried for a culture that we love so much that doesn't love our daughter with a disability. I have spent enough time in Ghana to know how people with disabilities are viewed and how limited their opportunities are.
Many therapists that have evaluated her have given us such promise for her mobility and improvement in general. We are starting from the beginning, teaching her the most basic things we would teach our 6-9 month old babies. It's exciting to see her respond to the techniques and all the medical things that are available to her. Right now, sky is the limit and we get to witness her healing as we find more answers.
Turns out, she does have CP. She had lack of oxygen to her brain either during birth or in utero which caused a part of her brain to be affected. We are following up with neurologist #2 to understand the extent of her injury better. So in some ways I was thankful to know what is going on, but a part of me was so sad that day.
I cried for my little girl and I cried for all that she has been through. I can't understand the magnitude of the rejection and loss she has felt during her first years. I cried for a culture that we love so much that doesn't love our daughter with a disability. I have spent enough time in Ghana to know how people with disabilities are viewed and how limited their opportunities are.
Many therapists that have evaluated her have given us such promise for her mobility and improvement in general. We are starting from the beginning, teaching her the most basic things we would teach our 6-9 month old babies. It's exciting to see her respond to the techniques and all the medical things that are available to her. Right now, sky is the limit and we get to witness her healing as we find more answers.
Tuesday, August 20, 2013
You have your hands full...and other things I don't want to hear
We had 3 blissful days cocooning at home. Afua was done with appointments, over stimulating environments and being poked at by various people. And so was I. We needed a few days off knowing that Friday was our MRI that she needed to be sedated for.
During those quiet days at home, I saw huge progress in our attachment, in her physical abilities and in the way she communicated with us. I got to know Afua better as we moved through the day together. She was all over her siblings, engaged in their playing and scooting around to keep up with them. Precious!
Friday, we got up early, before anyone else was up. We went through admissions and into radiology. As we spoke with various people (admissions, nurses, doctor, child life specialist) the question come out inevitably. Because of our skin colors not matching, people know we are related due to adoption or foster care. I tell our story briefly and it leads to more questions. How many other children do you have at home? Do you have any of you "own" children? Really, you have 5 children? Did you know she had a disability when you adopted her? Wow, how do you do it? And then....you MUST have your hands full. I can barely keep up with my (1,2,3) children. When this starts, I smile and take a deep breath....
Yes, our life is busy, but I think life is always busy. We fill our life with busy things no matter how many children we have. I was busy with 2 children, it was just a different kind of busy. Having 5 children is not crazy or impossible. It's sometimes loud, sometimes stretching all of us, but most of the time it's just a lot of love. And is it really a bad thing to have "full hands"?
Dear medical professionals, random deli counter acquaintances, soccer moms and anyone else that we encounter as we venture out: adoption is a fairly intentional way to add to our family. There is no "oops" adoption, it is pretty much all consuming work emotionally, physically, financially to have a child join our family. So please see it as a blessing as we do :)
Love, Me
During those quiet days at home, I saw huge progress in our attachment, in her physical abilities and in the way she communicated with us. I got to know Afua better as we moved through the day together. She was all over her siblings, engaged in their playing and scooting around to keep up with them. Precious!
Friday, we got up early, before anyone else was up. We went through admissions and into radiology. As we spoke with various people (admissions, nurses, doctor, child life specialist) the question come out inevitably. Because of our skin colors not matching, people know we are related due to adoption or foster care. I tell our story briefly and it leads to more questions. How many other children do you have at home? Do you have any of you "own" children? Really, you have 5 children? Did you know she had a disability when you adopted her? Wow, how do you do it? And then....you MUST have your hands full. I can barely keep up with my (1,2,3) children. When this starts, I smile and take a deep breath....
Yes, our life is busy, but I think life is always busy. We fill our life with busy things no matter how many children we have. I was busy with 2 children, it was just a different kind of busy. Having 5 children is not crazy or impossible. It's sometimes loud, sometimes stretching all of us, but most of the time it's just a lot of love. And is it really a bad thing to have "full hands"?
Dear medical professionals, random deli counter acquaintances, soccer moms and anyone else that we encounter as we venture out: adoption is a fairly intentional way to add to our family. There is no "oops" adoption, it is pretty much all consuming work emotionally, physically, financially to have a child join our family. So please see it as a blessing as we do :)
Love, Me
Monday, August 19, 2013
My beautiful butterfly
Today, Joy headed back to preschool. She was so excited to pack her lunch, check and re-check her school supplies and she was ready to go well ahead of time. I couldn't help but reflect on the little girl who joined our family 18 months ago. She was quiet, withdrawn, shy and frightened. Today, she skipped from the car to school, hugged her old teachers and headed to her new classroom.
Joy is the perfect name for her. She is full of energy, full of 5 year old girl happiness. She is my beautiful butterfly.
Joy is the perfect name for her. She is full of energy, full of 5 year old girl happiness. She is my beautiful butterfly.
Friday, August 9, 2013
2 weeks home
It will take some time to post my travel journal, 5 weeks worth of thoughts and adventures. But I wanted to give a quick glimpse into our 2 weeks home so far. I have friends who are considering adopting a child with medical needs and maybe this will help to understand how things are going for us.
Afua was quite sick when she first arrived. Her orphanage did not give us any medications (not sure if she even was on any medications?) and they did not tell us what/how she eats. A child with low muscle tone has usually eating difficulties and we quickly discovered what NOT to do. It was scary to see her refuse to eat, begin to lose weight but we are thankful for quick action from our medical team.
Day after we arrived, we saw our pediatrician. She was able to get us to see a neurologist the next day and he ordered an immediate EEG to monitor any seizure activity. This neurologist has spent time in Africa and was wonderful in giving us further recommendations. The EEG did not show seizures within the hour period of time, but we may go in for a full day monitoring later on.
Our next stop was a swallow evaluation. We were unsure what food consistency was safe for Afua. We knew she coughed and gagged with certain consistencies. We learned that she cannot swallow liquids safely. We received a referral to a feeding clinic and a nutritionist so we can decide if a feeding tube is needed to supplement her nutritional needs.
After all these appointments the first few days, I was glad to have a day off and just spend time at home. Afua was on an antibiotic for awful ear infections that she had for a long time. Finally, she started eating and feeling better as her ear pain was going away. With that has come energy to play, explore and get to know her siblings.
We are thankful that we have stayed out of the hospital and figured everything out from home. We also have an MRI scheduled soon that will give us more insight into Afua's health. Our neurologist is not quite sure if she has cp or another kind of neurological condition that causes her to have low muscle tone.
Our family is doing well and all children are adjusting to many changes. Friends are bringing meals, which frees up time to bond and play. Afua's personality is emerging. She is quite determined, curious and she loves music. We are keeping her world as small as possible. But with 4 siblings and activities, she has been out of the house a bit more than we'd like. We did take a morning to enjoy nature and she loved listening to birds on the nature trails.
Afua right before our first flight takes off
Afua was quite sick when she first arrived. Her orphanage did not give us any medications (not sure if she even was on any medications?) and they did not tell us what/how she eats. A child with low muscle tone has usually eating difficulties and we quickly discovered what NOT to do. It was scary to see her refuse to eat, begin to lose weight but we are thankful for quick action from our medical team.
At our final destination: Afua in her stroller and we escorted another little girl to her family
Day after we arrived, we saw our pediatrician. She was able to get us to see a neurologist the next day and he ordered an immediate EEG to monitor any seizure activity. This neurologist has spent time in Africa and was wonderful in giving us further recommendations. The EEG did not show seizures within the hour period of time, but we may go in for a full day monitoring later on.
Our first family picture
Our next stop was a swallow evaluation. We were unsure what food consistency was safe for Afua. We knew she coughed and gagged with certain consistencies. We learned that she cannot swallow liquids safely. We received a referral to a feeding clinic and a nutritionist so we can decide if a feeding tube is needed to supplement her nutritional needs.
After all these appointments the first few days, I was glad to have a day off and just spend time at home. Afua was on an antibiotic for awful ear infections that she had for a long time. Finally, she started eating and feeling better as her ear pain was going away. With that has come energy to play, explore and get to know her siblings.
Practicing reaching with Joy
We are thankful that we have stayed out of the hospital and figured everything out from home. We also have an MRI scheduled soon that will give us more insight into Afua's health. Our neurologist is not quite sure if she has cp or another kind of neurological condition that causes her to have low muscle tone.
Our family is doing well and all children are adjusting to many changes. Friends are bringing meals, which frees up time to bond and play. Afua's personality is emerging. She is quite determined, curious and she loves music. We are keeping her world as small as possible. But with 4 siblings and activities, she has been out of the house a bit more than we'd like. We did take a morning to enjoy nature and she loved listening to birds on the nature trails.
In the short 2 weeks that we have been home, the most overwhelming part has been paperwork. Our children's hospital makes it as painless as possible, but there are still assessment forms to fill out, applications for medicaid, phone call to arrange various appointments and each referral leads to another referral or five. There is so much we don't know about Afua and we are trying to move slowly with things that can wait. And with urgency the things that cannot. I am her advocate in getting the services started and also letting healthcare professionals know what can wait. Because she needs to have a day off at home. It's hard, but she is such a brave little girl with a joyous spirit. I am one blessed Momma.
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