Is this the confused, WTH face you’re making when you read my posts about laser therapy?! I get it. It’s the same face people use to make 15 years ago when I would explain why I didn’t eat wheat and why I took probiotics. No one even knew what gluten WAS then, about celiacs or intolerances and certainly not about a healthy gut. I was fine with everyone thinking I was wacky then for adhering to a diet that didn’t cause my body to attack its self. Why? Because the proof was in the pudding. It worked.
While I experienced first hand how integrating the reflexes makes your body function as it’s meant to, there is so much I have to learn. I can’t explain to you how it works or why. I’m reading and educating myself and I’m learning tons. I hope one day soon to be able to speak about QRI in a more educated way. But right now I’m learning. I have SO much to learn! You can learn what QRI is and about how the cold laser light therapy integrates reflexes here. If you want to learn more, read this very technical blog post with articles and research referenced.
Hammy really wasn’t into being assessed this afternoon and was pretty adamant no one was to touch him or require anything of him...like you know, laying down. I started to worry this would be a waste of time and money and he just wasn’t going to cooperate. So they gave us some homework...try to get him to hold these metal bars. If he wouldn’t cooperate, I was to hold him while holding them. But he blew me away. There was no throwing, no resistance, no fussing. He simply held them, fiddling with them some but not much.
It’s been a few weeks since I first shared about the QRI Intensive I attended where practitioners worked on me for up to 8 hours a day for 4 days. I’ve been processing everything for weeks now and trying to work through all that happened while I was there. I’ve been trying to get to a place where my thoughts make enough sense to share. That may not happen anytime soon but I have to get it out anyway.
If anyone is new here, let me do a quick recap. My stepson, Will, has Down syndrome. When my husband and I decided to grow our family, Will inspired us to adopt two babies with Down syndrome. They are now 5 and almost 5. One also has an ASD diagnosis.
About a year and half ago I was in a car accident that left me paralyzed below the chest. While I regained some core control and some tactile sensation, doctors, medicine or my progress left little hope that much else would come back. I would never walk again. Last June something happened that no one could explain and I went numb on the left side of my abdomen and lost all the sensation that had returned in my legs. I stopped thinking about what would come back after that and have spent the last year and half laser focused, no pun intended, on mastering life in a wheelchair and getting back to a place where I could mother, work and function independently.
I’ve followed QRI from a distance for several years, wondering if it could help my kids, especially my son with a dual diagnosis. Then in May someone from the QRI Brain Boost Center reached out to me, told me about the June Intensive and that there might be a chance the lasers could help me. I decided to go, to try it, but mostly in hopes of learning more about how it may help my boys. I had no expectations but a very open mind and believed it was certainly possible that I might see some improvements. Acupuncture had yielded some improvements early on and I’ve had enough experience with “alternative medicine” to know anything was possible.
Even if I had allowed my imagination to run wild with expectations, there is no way I could have conjured up anything close to what actually happened over those 4 days. Yes, the lasers and the foot baths and all the fancy lights and zappers and what they did was amazing. But it was the practitioners that made the experience other worldly. I experienced more intense spirituality, kindness, love, hope and healing in those four days than I might ever have before in my life. There was science and research and years of work behind those lasers. But those women were filled with God and healing and made all the difference. For those who already think this may be quack science, I’m sure I’m not helping matters. But I have to be authentic to my experience.
To get to the nitty gritty of if it helped or not with my paralysis...when I arrived I had basically no tactile sensation from the chest down.
Day one: by the end of the day I was able to feel “touch” down the outside of both my legs. I could feel a little bit on my right foot.
Day two: Feeling began to come back in my lower back and across my abdomen. Some of it was greatly distorted, meaning I could feel contact but couldn’t discern it it was a hand or a brush, sharp, light or hard. More feeling was coming back in different places on my right leg. My primitive reflexes were responding more.
Day three: what I was feeling became more accurate. I could tell what I was being touched with and gradually could feel in more places.
Day four: By the end of the intensive I had regained probably 80% of the tactile sensation I lost as a result of my injury. Much of it was strong and accurate, some of it was still distorted but present none the less. I hadn’t realized how profound touch would feel after only being able to experience tactile sensation on 25% of my body for the last year and half.
It also became very apparent something was going on the left side of my abdomen along the bottom of my rib cage. The area was massively swollen (you can see it in pics) and the more I was able to feel the more I realized this is where the numbness started and came from last June when, over the course of 3 days , I lost everything I had regained. It’s likely scar tissue from impact from my accident and I’m working on getting it treated. It feels like it’s blocking future recovery and is going to play a key role in healing. The downside to “feeling” is it’s very uncomfortable. My acupuncturist I saw last week attempted to treat it and the placement of 2 needles caused me to literally come off of the table in pain. If you’ve had acupuncture before you know the needles don’t hurt. So there is definitely something going on.
Post the Intensive: In the first two weeks after the Intensive I began to realize I had core muscle control lower than I had before. I can suck my gut in now!! LOL. Which also means there may be reason to hope one day incontinence may be a thing of the past.
This has been the hardest part. What to do now?! Is there really hope? How much recovery should I hope for? How do I afford this? “Hope” is hard. Hope is harder than I ever imagined it could be. Hacking life in a wheelchair came much easier to me than navigating all the emotions that are coming with this new hope, this new chance at recovery. And what could this mean for my boys?! If these lasers can heal my paralyzed body, a damaged spinal cord, what might they be able to heal for my children.
I’m trying to figure out the financial piece so I can get back for another Intensive, get my boys to an Intensive but first and foremost, to purchase the laser and additional equipment so I continue treatment at home. It’s an expensive endeavor but I have faith we will figure it out. Several people have already suggested a Go Fund me but I just don’t know if I can do that again. I love you all for it and know so many would give what they could but there has already been a life time of generality bestowed upon us. I will happily take though all of the prayers and love and goodwill you can send our way😘
Even after we met him Ukraine, accepted his file, gave him a name and knew he would be ours, I called him “the baby”. I hadn’t spent months envisioning the day we would meet or the day he would be mine. We didn’t know he for sure existed until we were in country. We weren’t sure if we’d call him by his first or middle name, so he was “the baby.”
I wasn’t able to visit him as much as I was able to visit Hammy. The first few weeks he was sick and they wouldn’t let me visit him at all. The time I was able to spend with him was only at one hour intervals and he would sleep most of the time. His breathing was so labored during those visits I had to put up serious emotional walls just to survive handing him back over and walking away after each visit, knowing there was nothing I could do until I was able to get him out of there and home. It was absolute torture.
Facilitators urge you to wait until the very last minute, the day before your flight home, for gotcha day. They are worried the child will become ill and unable to fly. But I wasn’t leaving my babies in those orphanages a second longer than the legal process required. My mom hadn’t arrived yet and my team tried very hard to convince me not to bust him out. But I pushed and pushed and made it clear I was taking my baby out, that day, regardless of what anyone else thought. I wouldn’t be able to get Hamilton for another day or two and beyond the obvious of not wanting my child to spend another day alone, in an orphanage, I wanted those couple of days with just the two of us. I knew we needed that time to continue to bond and where I could give Cadman my undivided attention.
It all happened with little fanfare. There was no seeing his groupa, where he had spent his first 8 months of life. There was no time spent with nannies who had cared for him. There was no dressing him together in the clothes I had brought to change him into. I signed the final papers in the director’s office and passed on his clothes for them to dress him. He was unceremoniously handed to me in the directors office and we were walked to the door. That’s it. There were no pictures. I just wanted out of there. Looking back I realize how spent I was. I had been in Ukraine 6 weeks by that point, most of that time alone save for other adopting families. I will always be grateful for those dear friends who I met and spent so much time with during those long, monotonous weeks. But by the time Cadman’s gotcha day came around I was emotionally drained and just wanted my baby safe in my arms forever.
There were no car seats so I held him on the drive back into Kiev and to my apartment. His smile has always been amazing and dazzled me from day one. It was such a surreal feeling cuddling that precious baby boy and realizing he was mine, forever! I felt like the luckiest momma in the whole world.
Reality quickly slapped me back into survival mode shortly after being back at the apartment. His breathing was seriously labored and he was so congested. The facilitation team’s warnings were echoing in my head and l started questioning if my push to get him out was a mistake after all. I was able to catch my mom just before she left for the airport and send her a video so she could show the pediatrician and pick up meds for him on her way. It was hard to tell how much of the labored breathing I was seeing was from infection and how much was from possible withdrawal from sedation meds he was likely given in the orphanage. He had needle marks but I have no idea what he was given. If he was having withdrawals from sedation meds he only had the physical symptoms and thank god never had some of the more serious issues and emotional distress that is usually seen.
Overall, he didn’t seem bothered by the symptoms causing my medical concerns. He was happy and eating and sleeping. Or that’s what I thought at the time. And compared to others’ experience I had heard about, he was handling the transition well. That’s not the same as being “okay”. I quickly realized he stuck his tongue out when stressed or overwhelmed. Even when “happy” and smiling, his tongue was out quite a bit those first few days. Imagine having never known anything but white walls and silence. You’d think orphanages would be loud places, filled with the noise of the hundreds of toddlers and babies who live there. But no. It’s the eeriest silence you’ll ever experience...and you’ll never forget it. The devastating reality of that silence is simple. The babies learn crying means nothing. No one is ever coming. And they may be punished for making noise in general, so they remain quiet. Or they are simply sedated.
Coming from that atmosphere and that being all he had ever known, I kept our outings to a minimum and we spent most of our first two days together cuddling. I hardly ever put him down, not even while he slept. I slept that first night partially sitting up, him asleep on my chest. I was desperate to make up for the first months he was alone. I wanted him to know what it meant to be loved and cherished and just simply touched. Many children coming out of orphanages are unable to tolerate being held close, even basic touch, having been so deprived of human nurturing. It’s simply too overwhelming and overstimulating for their little bodies to process, having rarely experienced it before. But both my boys were comfortable with being held and cuddled from the very beginning. I was so grateful to be able to hold Cadman close those first few days, that he was comfortable with my touch and from early on even seemed to find comfort in it. Those special hours were just what we needed, as it would never be just the two of us again.
My mother arrived late the following day. The original plan was to pick her up from the airport and go bust Hammy out of the orphanage. But Her flight was delayed and there just wasn’t enough time in the day so Hammy’s gotcha day was pushed another day. Most of that day is a blur. We pretty much just ooooed and ahhed over Cadman, his crazy Mohawk and his glorious smile.
We woke up the next morning, on July 4th, ready to spring Hammy from the orphanage. That it was July 4th, Independence Day, was not lost on me. I tried to prepare my mom best I could for what the next few hours would be like. We would go to the local bank and close Hamilton’s government account. We would donate that cash to the orphanage when we arrived to pick Hamilton up. She would stay with Cadman while I signed the final paperwork and waited for them to invite me back to see Hamilton’s groupa, dress him and let the nannies say goodbye. None of that went as planned.
On my last visit with him in the orphanage, he found the pattern in the couch so funny he was belly laughing. It was the first time I heard him laugh like that. But at the pattern in fabric? I knew then what I had been trying not to think about. My sweet Hammy was dealing with more than just an extra chromosome.
It was a Friday so the orphanage director was on “vacation”. He had known ahead of time we would be picking Hammy up so he instructed the assistant director to expect our arrival. Because he wouldn’t be at the orphanage, we had to go to his house to deliver the cash donation. It’s not that I didn’t have the same thoughts of apprehension my mom did, it’s just that after 6 weeks in county, two days of court and 2 paper-cases, I had accepted the way things work in Ukraine and I just wanted my baby out of that place. We dropped the money off, thanked the director and headed around the corner to the orphanage. And that’s when it all start to unravel.
We arrived to quite halls, shut office doors and nannies who knew nothing about us picking up Hamilton. They said no, to come back next week. By that point there was no way in hell I was leaving my baby there one more second. I sat my mom down on a bench with Cadman and marched back out to the car to get my facilitator. He got on the phone with the director and insisted he come in and handle the situation. In that moment I was glad I didn’t question the orphanage donation. Had I pushed back about that, there is no way he would have come in on his day off. Maybe the Cubans Bill gave him on his last visit helped too. Who knows, but people in Ukraine do not do anything they don’t feel like doing.
What transpired when the director arrived at the orphanage was nothing short of an ass kicking. I do not understand Ukrainian or Russian and have no idea which he was speaking but I am confident he was saying very bad words. Sitting on a bench, taking in the eerie silence, then listening as the director’s ranting and raving echo through the otherwise silent halls was almost enough to send my mother running. But she stayed with me and waited. The director came back out of the office and apologized for the assistant director leaving early and not having everything ready to go. Nothing in Ukraine happens quickly. So we waited and waited and waited for him to prepare the paperwork. I left my mom and Cadman on the bench and went to the director’s office, hoping to speed him along. He had placed a plate of refreshments out and was visiting with my facilitator. They insisted I join them. So I had tea and ate smoked fish and cucumbers with them, smiling and nodding as they chatted while very slowly shuffling papers. It was torture. I walked back down the hall to check on my mom and I could tell she couldn’t take much more. I had spent weeks enduring those quiet halls but to be thrown into that and to just have to sit with it, realizing what the silence means, it’s enough to unnerve anyone. I went back to the office only to find more refreshments I was expected to partake in. To this day I have no idea what I ate. I just wanted my baby and to get my mom and my other baby out of there. A nanny came and took from me the clothes I had brought for Hamilton. Once again there would be no ceremonial tour of his groupa or dressing him together. There would be no tearful goodbyes from nannies that had grown to love him. They handed him to me and we left. Once again, that idea I had in my head of how the day would go and the lifelong memories we would make couldn’t have been further from the reality of the day. My mom was emotionally exhausted, I was just relieved it was over. I would never have to walk away from him again, leaving him in that place to wonder if I’d ever come back.
And that was it. That was gotcha day. It was anticlimactic and at the same time, the second happiest day of my life. I now had my two precious babies in my arms and they would never be alone again. But that’s the way adoption is. It is tragic and beautiful. It is sorrow and joy. It is blessing and loss.
When I look back every year over the course of these three days, I’m awash in gratitude and sorrow, having learned to let my heart ache for all that my boys have lost and all that they went through in those first few months of life, to let it wash over me, to acknowledge it and feel it and to let it transform into deeper gratitude for the gift and privilege of being their mother.
Like all of my friends in Down syndrome (Ds) community, I have struggled over the last week after two stories aired on CBS focusing on the high abortion rates post a prenatal diagnosis in Australia and Iceland. With scientific developments focused on testing to detect genetic conditions as early as 10 weeks, testing is offered in many countries that can determine the statistical probability that a child will be born with Down syndrome. There are different tests with varying degrees of accuracy. In the U.S. women of a certain age are encouraged to have the test. In Iceland all women must be told that the test is available. Many take the test in both counties. Abortion rates in Iceland are reported at a staggering 100%, while in the U.S. the rate is reported to be at 67%.
My friends and fellow advocates in the Down syndrome community did an amazing job last week responding to the news stories and fighting back when some on the internet have made absurd comments about our children's worth, comparing the quality of life of an individual with Down syndrome to that of a dog. If you're not engaged with the Ds community on social media, you may have missed some of this, the original stories that aired and the outrage that followed. Fellow mom and advocate Heather Avis, author of The Lucky Few, hit at the core of the issue for me when she said in her recent blog post, "...the movement toward eliminating Down syndrome or the concept that a person can choose to not give birth to a baby solely based on a Down syndrome in-utero diagnosis is rooted in fear and ignorance." She went on to say, "Here’s the thing, the only people who should have a say as to what life is like with Down syndrome are people who have Down syndrome and those of us who are in intimate relationships with them. That’s it. Not the scientists, not the doctors, not the woman who just found out the baby growing in her womb has an extra chromosome."
Like Heather Avis, I believe the root issue is fear and ignorance. The only way we can change that is through education. Some have made this about the morality of abortion, but I believe there are many factors surrounding this issue that fall beyond the realm of the abortion debate. As the President of a Down Syndrome Association that represents many families, I don't engage publicly in debates about abortion. For me, the core of this issue, no matter what country, rests in the reality that some medical professionals give a diagnosis to expectant parents spouting limited, out of date, incorrect data. Not only are they not educating expectant parents appropriately, they're actually making Down syndrome out to be even more complicated than it truly is. As a society we have become accustomed to trusting doctors and medical experts, assuming they must obviously know more than us about something as complex as the human body. If a specialist tells a patient her baby has a 40% chance of dying by age 3, if she knows nothing about Ds, why wouldn't she believe him? There's the concept of a second option when you're trying to decide on a treatment or surgery but most people don't assume a doctor literally doesn't know what he is talking about when he gives you "facts." Many would sue for malpractice if a doctor advised you on a life or death decision using 30 year old data and flat out made up projections.
But this is happening every single day when it comes to Down syndrome. Why aren't we outraged about this?! Why aren't we beating down the doors to every doctor's office? Why aren't we figuring out how to get to doctors when they're still in medial school? Aren't our babies at least worthy of the truth being told about their lives?
Since my experience in 2015, when a specialist explained he told parents the infant mortality rate was 40% for a child with Down syndrome, I have been haunted by the reality that parents are making the decision to terminate their baby with Ds without the whole picture, or worse, with the wrong facts. Since then I've shared even more about my family in hopes that with more awareness will come less ignorance, less fear. What if one of my followers is sitting across from a geneticist next month being told there is a chance their baby will be born with Ds? Will they remember one of my boys and smile through the tears? Will they have a better picture of what life is like loving a child with Ds? Will they be able to make a truly informed decision? That is my hope. That is why I share. That is why I will keep sharing and that is why I will keep reminding the world that my children are worthy.
But what else can I do? What else can we do beyond social media? How do we get in that room, beside that medical professional delivering a Ds diagnosis? What if that diagnosis came with it a list of Instagram accounts to follow? What if that diagnosis came with contact info so one could reach out to a local parent? What if that neonatal specialist or geneticist had been provided with up to date statistics to use in delivering the news? What if that neonatal specialist or geneticist had been trained on how to deliver the diagnosis in a way that educated expectant parents about the possible medical and intellectual challenges, while also sharing with them how individuals with Down Syndrome positively impact a family and our society? What if parents receiving a diagnosis were given a pamphlet on Ruby's Rainbow so they would know individuals with Ds go to college and there are scholarships available to help with the cost?! What if they were given books like Bloom or The Lucky Few? We have struggled with this locally as a Ds Association and it bothers me I haven't done more locally. But the recent news stories have this on everyone's radar now and many of us are left asking what we can do to make a difference. The Down Syndrome Diagnosis Network has amazing resources available. The IG community does a great job of spreading awareness. Moms all over the country want to advocate for the worth of individuals with Down syndrome. How do we bring all of this together? How do we get in that room? How do we spread their worth?
Those are the questions that have kept me up at night since last week. We have an army of women ready to go to battle for the hearts and minds of our society when it comes the value of our children. Let's harness that and become a voice so loud, the medial professionals have no choice but to listen, but more importantly, to LEARN.
I don't have all of the details worked out yet but here is the plan.
You walk in OBGYN offices, the neonatal specialist's office, the geneticist's office with a basket of muffins or cookies and ask to speak with the office manager. You talk to whoever you can and explain you'd like to leave this info to be given out to patients, to be left in the waiting room, to be reviewed by the staff, nurses and doctors. You leave a copy of Bloom. You ask for a meeting with the doctors so you can go over some of the info. You ask if you can do an in-service for the staff so they can learn more about Ds and meet children with Ds. You take your child with you and introduce them when you introduce yourself. You make sure they know they can contact you with any questions and ask them to be sure to give expectant parents your contact info too. You do as much or as little of that as you're comfortable with. And you make it a point to go back and say hello, to check in and see if they need more handouts, or if they're ready for that in-service.
And you go back again, with more cookies, just to say hello and check in. You keep showing up and you keep reminding them individuals with Ds are worthy.
I get this isn't for everyone. I know there are associations and groups out there already doing this. But I also believe the more voices, the louder the message. And there are so many of us who want to do more to teach the world about our babies and share their worth. Let's take all the emotion these recent news stories have stirred up and let's channel it into a lasting impact. Let's keep showing the world with social media that our children are #worthy, let's get on board with the #lifeisbetterwithyou campaign. But let's also get in that room, beside that doctor. Let's rewrite the story that is being told to expectant parents. Let it be our voice they hear. This is our chance to be the good we wish to see in this world! This is our chance to be the change we wish to see in this world!
Find out more about the #lifeisbetterwithyou campaign here. And you guys...this video!!
Let's continue this trip down memory lane! Someone asked about Hamilton's and Cadman's biological families. Our experience when it comes to each of the boys couldn't be more different. We know very little about Hamilton's biological family. There was some basic history in his orphanage file but nothing more. No one ever visited him in the orphanage and there was no attempt at contact while we were there. I often wonder about them, his twin sister, his older sister, his birth mother. I try not to judge. My heart cannot fathom the loss, the hole, that she lives with every day. I imagine she thinks of him every time she looks into his twin sister's eyes. I imagine she mourns for him as one would for a child who passed away. She is as much a victim of the system as Hamilton was.
Our journey with Cadman's birth family began the moment we walked out of court, just minutes after the judge approving the adoptions. We had barley made it out of the building when our facilitator stopped us to ask if we were available for dinner. She told us Cadman's birth parents wanted to meet us. I panicked. Although the judge had just approved the adoption, the approval began a 10 day waiting period where either adoption could be petitioned. What if this was a test? What if this was to see if they approved of us adopting their son? If we said or did something wrong would they tell the judge they changed their minds? Bill would be leaving for the airport at 4am the next morning to fly back so it had to be that night.
We met at a restaurant just down from our apartment, sitting outside on the patio to enjoy the beautiful evening. They spoke no English and we, of course, spoke no Ukrainian or Russian. One of the drivers for the team came to translate. I was so struck by her beauty, immediately seeing that Cadman gets his big beautiful blue eyes from her. It was the beauty of her spirit that touched me. She was so broken. The long months since Cadman's birth had wrecked her, left her helplessly waiting for a family for her beloved son, a son who society told her she could not keep, raise or support in the ways she wanted for her son. Medical professionals and society in countries like Ukraine do not have any experience with the abilities of children with Down syndrome. They believe our children will never walk or talk, that a child with Down syndrome doesn't feel or think and families are told such at birth when they are told to sign their child over to the state. There are no therapies or supports for children with disabilities there and school is not an option. Day cares will not care for child with special needs. Families left with no hope of support or interventions are left with little choice. Cadman's birth family knew adoption by an American family was his best chance at life and wanted him to have a family as soon as possible. They were very involved with his orphanage, even privately paying for his care there. His bio father would visit several times a week, always calling ahead to see what medical supplies, diapers or formula they were running low on and needed him to bring for all the infants in Cadman's groupa. She couldn't bring herself to visit Cadman in the orphanage. She knew she could never walk out leaving him there if she ever went in. Can you imagine the torture of knowing your child's only hope to thrive, to have a chance in this world was dependent on you abandoning him? That reality will always haunt her and the toll it had taken on her was clear when we met that first night. We spent much of the time hand in hand across from each other, tears steaming down our faces muttering acknowledgements of all that went unspoken between us. It was the first of several meetings. After that the husband insisted that I let him drive me to visits or let them pay a for me a driver so that I didn't have to spend hours going by metro/bus/foot. I enjoyed visiting with him and watching how Cadman interacted with him. Cadman clearly knew him and had a bond with him. I truly believe Cadman made it out of 9 months in an orphanage virtually unscathed in large part to his biological father's frequent presence and dedication to his care. The nannies dotted on him and nurtured him in a way they usually specifically avoid doing with most infants. They're trained to avoid bonding with the children and thus many infants suffer greatly from having no connections during such formative months.
Cadman's birth mother didn't see him until after I took him out of the orphanage. Once he was back at the apartment with me, she came to visit, seeing him for the first time since leaving him at the hospital the day after his birth. I still struggle for the words to adequately convey the experience of those visits. There was such beauty, such love...and so much heart ache. It was brutal to witness and yet so beautiful it felt holy. I'm left in tears every time I think about it, even now. I'm grateful my mother was there with me, although she could hardly stand to watch it. But I'm grateful someone else was there to bare witness to such a special encounter. I don't know if I've ever experienced something so pure, so guttural, before or since.
The morning we flew home we had to leave for the airport around 4am. They insisted on coming, on driving us to the airport. I put Cadman in her arms that morning in the apartment and she held him until the moment we walked through security. She had walked along side us in the line until she couldn't go any farther. I'll never forget her giving him back to me that last time, giving him to me now as my son, knowing she very likely would never again see him. Selfless love on that level is something so pure and fragile and brutal, I've rarely attempted to speak of it, knowing I'd never be able to truly convey the magnitude of the moment.
Three years later we remain in frequent contact. Mostly it's through email via google translate. I send pictures and videos and lots of updates on all the fun, quirky things Cadman does to keep us laughing. At first I sent pictures mainly of Cadman but she quickly let me know she loves Hamilton too and was just as eager to know how he was doing. She always asks about all the boys and every year, in the birthday package they send Cadman, they include gifts for each of the boys. They have an older son who is Will's age so we often talk about how quickly they're growing up, becoming little men. They are like family to us and I hope one day we will all see each other again. But even if we never do, we will remain forever bonded through our shared love for Cadman.
Lots of great questions asked yesterday in response to my post about adopting the boys. So let's start at the beginning...Will.
Will is my husband's biological son, my "stepson", but I dislike that word.
Will was 7 when I met him but very much like a toddler. He was nonverbal and such a tiny little fella. He instantly won my heart and looking back now, we just sorta winged it and figured things out together. We formed a special bond from the very beginning and have a really special relationship. He may not be mine, but I will always be his.
Will's super lucky to have a mom and a dad who have always put him first and make sure he is able to go between two houses seamlessly. He's with his mom during the week when he's in school and with us every weekend and whenever school's out. I also have two stepdaughters, Will's older sisters, in college. It was awesome having everyone here for Father's Day last weekend!
And yes, Will calls me by my first name, Amber. Before he could say my name he called me Bir-Bir and now pretty much everyone from our home town does too. Although Will is most always adamit that I my name be said fully and correctly these days, my husband more often calls me Bir than he does use my full name. The summer he learned to say my name correctly and dropped Bir-Bir was bitter sweet!
And yes, Will is the reason we adopted children with Down syndrome. When we decide to adopt it was just a given. Parenting Will had been one of the greatest joys and blessings of my life. That's not to say it is easy or without challenges, but it's certainly worth every second.
It's really happening!! They came out to take measurements and to let me test the stand up chair in my house! I agree with Will..."it is cool!" Thank you to everyone who helped make this happen!!
I can't even begin to explain how nice it was to be standing AND moving at the same time! I would have rather this posey of gentlemen not have arrived 3 hours early so I could have at least fixed my hair for this monumental occasion but hey, Monday morning bed head or not, I was able to look people in the eye and have a conversation!! And please excuse the parenting moment!
So grateful to those that have worked so hard to put together our upcoming fish fry fundraiser! Channel 13 visited with Bill and the boys today!
Special thank you to Rhonda and Dick for always being there to help and to Great Gains Behavioral Solutions for always working around our crazy schedules! Of course none of this would be happening without the ever determined Ms. Diane Pickett!!
So much I want to tell you guys! I've been so busy and then so exhausted from being so busy that I've not had much time to share. But let's start here...
Did you see it?! I made my legs move! Well sort of! This started happening last Friday. My muscles are so weak so we were pretty sure it was minimal movement coming from somewhere and triggering a spasm that lifted my legs. But I couldn't feel any new muscles so I couldn't tell. I have only been able to feel my upper abs so far. Then yesterday feeling came back in my glutes and it feels like that's what I'm contracting that results in my legs moving. That's huge!!! It's significant muscle control below my injury. Keep praying my friends. Your prayers are working.
I didn't share at the time but about 6 weeks ago I woke up shortly after falling asleep overwhelmed by the intense energy in my legs. I don't know any other way to describe it. But it was almost unbearable. As I teetered on the edge of a full blown panic attack, I begged my Husband to move my legs. Just make them move! It was the only way I knew to try and dissipate the energy. I wept uncontrollably. I slowly began to realize I could feel my legs again, their presence...the weight of them. And it wasn't until then, when I could feel them again, that I truly mourned the loss of them. It got hard. Because when you can't feel your legs, when you don't know that they're there, you don't subconsciously try to move them. But once you feel them again, once your brain knows they're there, you find yourself trying to move them and it's a new shock each time the reality sets in. Dead weight. Stuck in concrete. Nothing. It was psychologically mind warping the first few days. It was honestly the first time I felt paralyzed or dealt with the reality of "I cannot move!" Which probably seems crazy since I'd already been injured a couple months by this time. But the difference was staggering.
Obviously being able to feel my legs again is a sign of healing and much better health wise, as I'm less likely to get pressure sores or wounds if I can feel when something is wrong. But, like with this new leg movement, I was scared to say it out loud. I was scared to read too much into it. I was scared to believe in where it may lead, even more scared that it would lead no where.
I've never prayed to walk again...because what if I don't? I don't want to make the measure of my healing, of being whole, based on walking again. Yet, I weep with the thought of being able to chase my babies through green grass again, a blue sky above. To go for a run. To kneel on the ground and pull the weeds taking over my flower beds. But I spend much, much more time bathed in intense gratitude. I'm alive. I'm here watching my babies grow up. I can't jump out of bed in the mornings and get my boys ready for school but now I get to sit with each of them for an hour each morning, having a little breakfast in bed party. We sing and read books and practice their new words and signs while they eat. Having a hour to sit and hold my babies each morning, being able to give them 100% of my attention? It's an amazing gift. And they love practicing selfies!
As much as I truly miss being able to clean and do laundry and zip around my house doing everything that needs to be done, not being able to do all of that right now gives me much more time to work while the boys are at school.
I'm working more now than ever and am so grateful for the support, kindness and patience my client has shown me during my recovery. It's not every day your dream project falls into your lap and it's certainly not everyday those involved treat you with such compassion and continue to have such faith in your work. That being said, I don't want to write another 30 page grant for a wee little while! But there is certainly a blessing to be found in having the time to dedicate to working and to continuing to be involved with our Down Syndrome Association. I love what I do and I'm finding great satisfaction and reward in being able to still do it. New projects are popping up and I'm trying very hard to make sure I don't over commit. I still have a long way to go before I have the stamina I once had. And there's a blessing in that even. I've never done a good job of taking care of myself, but now? Now I don't have a choice but to, to be aware and genuinely put my health high on the priority list.
There's so much more that's been going on with us that I'm excited to share over the next few days. But I want mostly to again thank you all. Every day something happens or someone reaches out in such a way that leaves me deeply, deeply moved by the good that there is in this world. I feel so blessed to be witness to the kindness, generosity, friendship and love shown by you all. Your love and your prayers are palpable and I've have spent these last 4 months feeling wrapped peacefully in that love. I'll never be able to thank you enough for that.
We're still fundraising for my awesome stand up chair. If you'd like to contribute, just click below! Thank you so much in advance!
With my busy days of therapies and trying to get better and still trying to juggle family responsibilities back at home, I have a little time to blog. Actually, I've had very little time to blog in the two years since bring the boys time! If you'd like to continue to follow our journey, I update regularly my Instagram account theworthythree and on Facebook!
our journey of faith and hope half way across the world to bring home two baby boys
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