Jojo + Papa = BFF {by my dad for Down syndomre Awareness Month}

 

 

 

My first real association with child who had Down syndrome was at the Sportsplex gym. A young, single mom with a son who was about 9 years old named Cary came to the gym at the same time I did. I began to pay attention to Cary and that’s all it took for him to be my friend. He would watch for me at the gym and when he saw me, he would come running and take my hand as if it were understood that “I’m with you”. A glance at the smile on the mom’s face each time indicated approval and appreciation. Carey would follow me around in the gym and “help” me with my workout and he was always sad when it was time to leave. The only time I remember seeing Cary any place other than the gym was at Walmart. When he saw me a from a significant distance across the room he yelled at the top of his voice, ran to me, gave me a hug and took my hand as usual. Even though we hadn’t spent a significant amount of time together, I was sure that he was my friend…my buddy.

I knew for many years that my daughter Jenny wanted to adopt someday, but when she came to my wife Emily and me and explained that God had put it on her heart to adopt a child with Down syndrome, I was apprehensive.  She had already spoken to Aidan and Ella Mae and they were all in as was my wife, but I was concerned. Being in the financial business, one of my main concerns was how she would support another child, especially one with special needs. I was concerned for Aidan and Ella Mae as well because Jenny is a single mom. Since we all lived together at the time, she was determined to have us all “on board” before she moved forward in faith, but it took a while, and a significant amount of stubbornness from Ella Mae (she gets it honest from my sweet mama) to finally get my yes.

Emily and I were waiting at the airport when they brought Josiah (Jojo) home. I didn’t know what to expect or what my role would be. I even wondered if she would let me hold him. She walked through the airport straight to me. She said “here” and handed me that precious baby. At that moment, I knew that my life had changed—I knew that I was the Papa of someone special—a different kind of special than my first two grandchildren.

Over the next five years or so, Jenny, with the help of my wife, Emily, fostered twelve children. Most of them had special needs and/or were medically fragile. I was blessed to be able to help a little. I got lots of hugs in payment.

One day she received a call from Children’s Hospital and was asked to make a visit to consider fostering a baby with incredibly significant medical challenges and he also had Down syndrome. He would require intense medical care and medication for life. His mom could not take care of him. When Jenny arrived at the hospital a team of doctors and nurses were waiting. They asked Jenny if she would possibly, perhaps, maybe somehow consider fostering “Baby Zee” who had spent all 7month of his life at the hospital. At that point, the outlook for Baby Zee was very dim, with no one to take care of him and no good options for a place to live where he could get essential medical care. Who, in their right mind, would take on such a challenging commitment? Jenny and Emily, with the mind of Christ, trained to care for him medically while he was in foster care and eventually Jenny adopted him. The adoption judge said, “he is your child as if he were born into your family”. That statement was correct. Zee has a good place to live, is loved and well taken care of. He is just happy to be alive every day.

 

 

God doesn’t make mistakes when babies are born with Down syndrome. They are born into HIS family the same as everyone else. He created them special…and He created others special to be ministers to care for them. “Do nothing out of selfish ambition or vain conceit, but in humility consider others better than yourselves. Each of you should look not only to your own interests, but also to the interests of others.” Phil 2:3-4.

Jojo and Zee are indeed special to me and I love them very much. I am so thankful to be their Papa and to have the opportunity to serve them. As it turns out, Jojo is not only my grandchild, but we have also become best friends. He is all mine on the weekends (to give Jenny a break) and we have the best time together. Once Zee grows and heals some more I’m sure he will join us on our adventures! I can’t imagine my life without these boys, and I am so thankful that a little 6 year old Ella Mae didn’t give up until she got my “yes”. "For from him and through him and for him are all things. To him be the glory forever! Amen." Romans 11:36. 

Papa

 

 

Down syndrome, drugs and depression and shame.

On this last day of Down syndrome awareness month, I have something I need to share. Writing is like therapy for me, and I need to get this all out in to the open so I can hopefully begin to heal. So that we can all begin to heal.

Jojo has been a hot mess since about age 2. At first, I just assumed he was very "spirited". Then I said "oh this is the terrible two's" and then "terrible three's". And when he was 4 and was still climbing on top of the table while trying to hang from the light fixture I just went with "hot mess". I assumed it was something he would grow out of as he got older.


In January of 2019 when Jojo was five I was at an Endocrine appointment with all 3 of my boys. Jojo spent the entire visit either turning the light that is used to view x-rays off and on and off an on, or turning the room lights off and on, or literally trying (and a couple of time succeeding) to leave the room at lightning speed. Imagine trying to carry on a conversation with a doctor in that room! This is why most of my conversations when Jojo is around are either very quick or don't ever actually happen.

In a lighthearted way, the doctor (who I LOVE) said "Have you ever thought of having him seen by Behavioral Health?". Those words changed me. In an instant I realized that Jojo's behaviors were not just due to him being a hot mess or "spirited" but possibly something else. Something that could be identified. Diagnosed. And treated. I realized that maybe things could get better. And I wanted that. I wanted things to get better for him and for me and for all of us. I realized that I very much needed things to get better because I was slowly but surely falling apart.

Our doctor said that she would make a referral to Behavioral Health, but that it may take a while to actually get in to see someone. She suggested that I give them a call to find out how long the wait would be so I would know what to expect. I called. That day. And 2 weeks later someone called me back. TWO WEEKS. The lady who called me sounded less than thrilled to be speaking with me and informed me that their next available appointment was in November. This was in January. So I said no thank you, assuming that there must be a better way. Parents who have a child with behaviors that warrant seeing a doctor who specializes in behaviors can't be expected to wait NINE MONTHS to get the help they need right? I mean, you literally can grow a human person in that amount of time. I assumed the place I called was just way too popular or understaffed or grumpy and that there must be a better option.

So I did my research, I asked other moms, I talked to our pediatrician and it turns out that there was no better option. This is apparently just how things go when you have a child with behavioral issues. And in my humble opinion that really just sucks.

I waited, and researched, and called, and begged and cried and eventually our doctor called with a possible option. I reached out to the psychologist she recommended and was thrilled to find out they could see us. In July. Which still really sucked but it sucked less than November so I made the appointment.

Let me pause here to give you a bit of insight into what we deal with on a daily basis with Jojo. He is in to EVERYTHING. If he is not supposed to have it, he wants it. I have gates in pretty much every doorway in my house and some type of locks on all interior doors. We have to keep Jojo confined mainly to the living room because that is the only room that is mostly fully Jojo proofed, which means the only things he can reach are the few toys that aren't in toy time-out due to him throwing them at someone in the kitchen, the couch, and a tv table that has literally nothing on it. I had to build a dutch door for my hallway because Jojo can't be around Zee without someone watching his every move due to the fact that he will take toys away from Zee, hit him, kick him and sit on his head. So when we are home, Zee is usually down the hall in the twins bedroom (where neither of them sleep) where he is safe from Jojo but I can still see and hear him over the half door and we can reach over from the other side to lock it and keep Jojo in the living room. I had to change out the deadbolt on our front door to one that has a key on both sides after Jojo figured out how to turn the old deadbolt and straight up left one day (we got him back quickly but still). So now we have a chain lock on the inside, we keep the deadbolt locked from the inside with a key we keep on a hook up high so he cant reach it (yet), and we have a key that stays in the lock on the outside so when one of us goes out we can just lock the door back rather than someone on the inside having to come behind us and lock the door. Side note: this is the system to keep Jojo IN. Luckily I have a Vivint Home Security system to keep the bad guys OUT. ;-)

If I am in the kitchen attempting to do all of the things and Jojo wants something he will stand at the gate and SCREAM "MOM!" with ever increasing volume and insistence until I stop what I am doing and get him whatever he wants. If I am sitting on the couch with him (as he has likely instructed me to do) and he needs something from the kitchen, I have to gather up my phone, the remote and any other items I might have with me because if I leave anything behind he will take and swiftly toss it either behind the couch or through the cat door and down the stairs. We cannot put ANYTHING down that he can reach. No drinks, phones, snacks, nothing is safe. Now that you have that mental picture let's move on.

Jojo does great at school. Partly because he thrives on structure and partly because I am not there. I am like his bad behavior trigger. We finished up round 1 of Kindergarten (he is on round 2 now) and  moved in to the summer. As with all summers, I had great big plans of all the adventures we would have and the fun things we would do together while keeping Jojo busy and hopefully worn out. However, as with all summers, nothing went as planned. The big kids just wanted to either hang out with friends or chill at home. Zee doesn't walk yet and weighs 1,000 pounds so taking Jojo and Zee almost anywhere by myself is practically impossible. He legit needs a body guard to have eyes on him at all times. This resulted in us spending the majority of the summer at home, with no structure and my sanity slowly slipping away.

I called the psychologist office one day and told the secretary that I was at my wits literal end and that if someone cancelled an appointment to PLEASE call me and we would come straight there no matter the circumstances. Praise the Lord someone cancelled and we got our appointment moved up to mid June.

I had high hopes for this appointment, obviously. I needed answers and I needed help and I needed it right then. The doctor saw us and Jojo moved quickly around his desk rearranging computer cords and organizing the doctors cough drops into rows as we talked. The doctor told me that Jojo now had a diagnosis of ADHD, ODD (Oppositional Defiant Disorder) and OCD. Then he informed me that it was their policy not to give any medications until the child had completed 6 months of therapy. I'm not going to lie I was hoping and praying for drugs. I was crushed but still determined so we made our first therapy appointment for the following week.

Ella came with me to this appointment because she is awesome and back up is always good. We were called into a conference room with a big table in the middle and a small box of toys in the corner which was not at all what I had pictured but I decided to trust the process. The process however was not to be trusted. Jojo set out to dumping out all of the toys (not to play with them just to dump them), attempting to pull the curtains from the windows, standing on the table and trying to leave the room. The therapist (who looked a lot like Donna from Parks and Rec now that I think about it) looked stunned and she was clearly not sure what to do with her words or her hands. She said that she had "never worked with a child with Down syndrome before" at which time I pointed to Zee (who was happily playing with something random under the table) and said "this is a child with Down syndrome". Then I pointed to Jojo who was running around the room like a spider monkey on crack and said "this is NOT Down syndrome". Yes, Jojo has Down syndrome, but that is clearly not why we were there. She went on to tell me that with a "typical" 6 year old with behavior issues she would have them sit down and talk about how they feel and how to deal with their feelings and I went on to tell her that that was never going to happen. We agreed that this wasn't going to do anyone any good and could possibly be the end of their conference room and she promised she would try to find a better option for us.

She did try, but unfortunately the better option was the same place I had already called back in January and had also since filled out all of the paperwork for and hand delivered it to their office whilst begging for their mercy since they had still not called me back. Sidenote: whilst is a great and under-used word. Also, as of today they have STILL NOT CALLED ME BACK. So, we were back to square one and I was running out of patience. I called the psychologists office back and begged for help. There must be somewhere else we could go, a medication we could try, something.They said they would try to find a place that offered ABA therapy that could take us, but guess what? Same place we were already waiting on. So after much begging they sent a "medication referral" to a psychiatrist.

While we were waiting for a call back to schedule that appointment (which took a couple more months) we went back to our pediatrician. I told her that the psychologist FINALLY saw us but basically gave us a hand full of diagnosis and absolutely no help in dealing with them. I begged her to start him on a low dose of a common ADHD med while we waited for the psychiatrist appointment and since he was again acting like a spider monkey on crack she agreed.

I felt such a HUGE relief because after 7 months of nothing I finally had something. And I knew plenty of fellow Ds mamas who's kids were on the same med and it had worked great for them so I just knew it would be the answer for us as well. It wasn't. It made him worse. And so did the next med we tried. And all of this happened just as school was starting back and I was terrified that he was going to acting like a nut job at school which was the ONLY place where he actually behaved.

We finally got in to see the psychiatrist who promptly un-diagnosed him with OCD and re-diagnosed him as high functioning on the autism spectrum. She explained that his need to have groups of things that are alike and move them from one place to another was a characteristic of autism whereas with OCD you have to make sure things are in groups etc or else you feel like something bad is going to happen. Did hearing autism feel like a punch in the gut for a second? Yes. Did it change anything at all? No. I didn't really care what she said or what she diagnosed him with as long as she gave us help.

So, she started him on a cocktail of meds, one of which is an anti-psychotic which totally freaked me out at first but again I didn't really care what she gave us as long as whatever she suggested actually helped.

Today, we are a couple of months into what I can only call "figuring this out by trial and error". He is verbal, but not enough to say "mom these meds make me feel super tired" or "mom I feel like I don't want to eat anything". And that is hard. But we forge on. With the help of his teachers at school and doctors we are working to adjust meds, add meds, remove meds and so on until we all collectively feel like he is in a better place. He has had days when he wasn't doing so well at school and that let me know that something was off. He still acts like a fool at home most of the time. They say kids save their worst behaviors for the ones they love the most and if that is true he loves the absolute crap out of me. I have had days of extreme guilt when the enemy tells me that I am the problem. He behaves so well at school and he acts like an angel when he is with Papa so I must be the problem, and I have to fight against that voice every day.

Why tell you this story? I have a few reasons:

1. I am sure there is someone out there who has dealt with, or will deal with something similar. Knowing you are not alone, although it often (very often) feels that way, will hopefully give another family the confidence they need to fight this fight for their child.

2. Something must change. I have no idea how things are in other States (please let me know if you have experience), but here in Alabama the system for kids with behavioral challenges and mental health issues SUCKS. If a child is diagnosed with cancer or pneumonia or a simple thyroid issue, they are almost immediately started on medications and treatments to begin to solve or at least lessen the effects of their illness. It appears that the current answer for all things mental and behavioral health is being added to a waiting list that may go on until Jesus comes back and that is just not good enough. We can and must do better.

3. When I first brought Jojo's behaviors to light in a couple of Down syndrome Facebook groups, I had multiple mom friends who private messaged me and said something along the lines of "Johnny has been on {INSERT NAME OF DRUG HERE} for forever and it has really helped us but I didn't want to say that in the group because I would get mom-shamed by all the crunchy granola oil loving mamas". Hear me here people: I know not one mama who has a child with cancer who would every hesitate to post on Facebook or Instagram or shout from the proverbial rooftops when their child has been approved for a medicine or treatment that could ultimately save their child's life. THIS SHOULD BE NO DIFFERENT.

Bottom line: the shame and stigma surrounding mental health issues must change. I have personally been on anxiety meds for basically forever and now due to SEE ABOVE I am on an anti-depressant as well. Why should that be a big deal? If I broke my leg and had to have surgery I would never feel the need to whisper to a friend that I was on meds for the unbearable physical pain, so why should unbearable mental and emotional pain be any different?

People die due to mental illness y'all. We can't continue acting like that is not the case. So please friends, be bold. Share your stories. I feel that is the only way that we can conquer the stigma and shame.

And if you need help, or your child needs help, get it. No matter how hard long you have to fight. You are worth it. Our kids are worth it.

I would choose Jojo a million times again even knowing what I know now. I firmly believe that God gives us the kids that are meant to be ours, no matter how they come to be ours. Zee has a whole host of medical issues that I battle with zero shame or concern for what anyone might think of me and Jojo's issues should be treated the same way. I love him with every fiber of my being and I always will. He is bossy but he often bosses me to rub his hands or feet when he is sleepy and that melts my heart every time. He says "Da!" instead of yes (I think someone taught him German I am telling y'all he has always been advanced) and I love that. He sleeps in the bed with me every night and I think I will never get married again for the sole purpose of being able to snuggle him every night for all of my days because gosh he is adorable and sweet when he is asleep.

God knew what He was doing when he picked me to be his mama, because He knows how much I love a good fight. ;-)

Blessings,

jennymo

A response to Ruth Marcus and others like her for World Down syndrome Day 2018

I am writing this to Ruth Marcus of the Washington Post in response to her article "I would have aborted a fetus with Down syndrome. Women need that right." from March 9th, 2018, but it could easily be directed to so many across the world who share her same opinions regarding people with Down syndrome.

 

I have written and rewritten this post in my head a hundred times over the last week or so. I could go on and on about prenatal testing or abortion. I could argue so many points in the article, and unfortunately there are a few that I cant argue with. But none of those things would accomplish my goal in writing this. I guess the best thing I can say is

Ruth, you just don't get it.

Bless your heart. 

In a feeble attempt to change that fact, allow me to tell you a little bit about my son Zee.

I was not given the option to abort Zee, because I am not his birth mother. When I met Zee, he was 7 months old in a Intensive Care Unit at a local hospital. A ventilator was helping him breathe. He had a tube in his airway to keep it from collapsing.  He was connected to multiple other machines to give him oxygen and monitor his heart. He was being fed through a tube in his stomach and given countless medicines to keep him alive.

I was a brand new foster parent and I knew not one thing about his care. I was a single mom and I already had two biological children as well as a 1 year old son I adopted at birth who also happens to be blessed with an extra chromosome. I had every single reason in the world to say no. 

But I knew something deep down in my soul that day. I knew without a doubt that if I said no, he would surely die.

You see, I was the last ditch effort for him. Without my yes, he may have never gotten well enough to leave the hospital, and if he had he would have been sent to a nursing home. I knew he was my son when I first laid eyes on him and I have never regretted going to that hospital and giving this sweet boy a chance.

And to quote your article, he was "not the child I wanted".

I never once dreamed of bringing home a child who was ventilator dependent. I never hoped that our living room would be turned into a virtual ICU for months on end. I never "wanted" to have to go through 6 weeks of training with my mom to learn how to care for a medically fragile child.

He was not the child I wanted.....until I met him.

And then he changed my world for the better.


You see Ruth, a perfect child with no scars and no prenatal diagnosis could have never taught me about a love like this.

Every time I feel his heart beat I am thankful, because I was there both times that it stopped and he had to have CPR to be brought back.

Every sound he manages over his trach fills my heart up because for so long he could make no sound at all.

Every time he scoots across my floor I smile with pride because I know that for almost 2 years he couldn't sit up much less crawl.

Every time he wraps his tiny arms around my neck and hugs me I remember the time, not so long ago, when he didn't even know how to be held because it had never happened to him before. It was like holding a rolled up rug instead of a child. He just didn't know what to do with love.

Every time he plays with a toy or laughs at a song I think of the time when he was in the hospital and all he could do to entertain himself was stare at the back of his own hand.

Yes, "Down syndrome is life altering for the entire family"....just as you said.

You just don't understand. It is life altering in a good way.
 
Those of us who love a person with special needs don't think about their IQ's or their future financial security. We are just so very thankful for the beautiful lessons that they teach us every day. We are thankful that they are different because that is what makes them special. They teach us things about ourselves that we could have never learned any other way. They cause us to be more kind and more compassionate. They give us new eyes so to speak to see the overlooked, the vulnerable, the alone and to reach out to them.

And if given the choice to live in your perfect cookie cutter world with the kids and the life you wanted and your "good company" of friends who agree with you, I would choose my hot mess of a life every single time. I don't want to live in your world where everyone has the same abilities and the same IQ and the same chance and financial stability and independent living because that is not a real world. You simply can't abort everyone who doesn't fit the mold that you created.

Loving those who are different than us makes us better people.

I just wish I knew how to make you see that.

Elynn's Celebration of Life

Did you find one of the balloons from Elynn's memorial service?

Please comment here and let us know where you found it!

I just can't say enough thank yous to all of the people who helped to make Elynn's service perfect.

To God be all the glory!

A tribute to Elynn by Gary Clark

Did you find one of the balloons from Elynn's memorial service? Please comment here and let us know where you found it! A personal note from Gary Clark {my sweet dad emailed this to all of his clients and it is just too sweet to not share}

Financial planning and investment management are important. Work is important. Providing for your family…. very important. But we need to check up on a regular basis to make sure we are not neglecting some very important things that money can’t buy. A little more than ten years ago our daughter, Jenny was pregnant with her second child and going through a divorce. So, we agreed to move in together to share expenses and so that my wife, Emily could help with the children. About four years ago Jenny, along with a commitment from Emily, me and the two children, began her ministry of serving special needs children, including those with significant health challenges. I now have two grandchildren who are natural-born and two who are adopted. The two adopted ones have Down Syndrome. JoJo is quite healthy but the other one, not so much…two heart surgeries along with a lung disease are the major challenges for Zee. Zee spent most of his first year of life in the hospital. His future was dim until Jenny brought him home, along with lots of medical equipment. Jenny, along with Emily’s help, has taken loving care of quite a few foster children for various periods of time. About a year ago Jenny agreed to take responsibility for the care of a two-year-old baby with Downs and with very fragile health. Elynn's heart and lung condition was severe, his needs were many and his life expectancy was short. He didn't have much hope for having a family or even for having a good place to live. Jenny brought him home and, along with the help of Emily, gave him a family, a good place to live, good medical care and all the love and affirmation with which any any son could be blessed. He   spent a lot of time in the hospital, including two heart surgeries as well as other surgeries and procedures. He never gained the strength to walk—in fact, he never even crawled. He moved around by rolling and by scooching. However, he didn’t go far because he was attached to oxygen. He never took any food or liquids by mouth. No ice cream, no candy, not even a bottle. Anything swallowed went into his lungs due to a deformity that apparently couldn’t be fixed. Of course, he took food though a tube directly into his stomach. He suffered a lot of pain and discomfort. He struggled to breath. Thursday morning, June 29, Elynn’s frail little body finally gave out. He went to be with our Lord Jesus…. Jesus wiped every tear from his eyes. No more pain, no more discomfort. He doesn’t need extra oxygen, he can breathe just fine now. No more trips to the hospital. No more surgeries or procedures. He can now laugh normally without having to take a breath between every “ha”. I was influenced by Elynn. Even though he was very weak physically, he was mentally strong. When he felt relatively well, he would be smiling, happy and playing as best he could. He was very liberal with throwing kisses to anyone who would give him some attention. What he wanted most was expressions of our love…hugs and kisses. When he felt neglected, he would sometimes be quite vocal about it but all we had to do was to pick him up or lie down beside him on the floor—just look at him and talk to him and be close enough for him to touch us. In human terms, Elynn got a very bad deal in life--but he didn’t do much whining. I often wondered why he didn’t cry more, especially when I would notice a grimace from some internal pain. I have had a very good deal in life but I have spent too much time whining, complaining and feeling sorry for myself. I think I will be a better person due to the influence of my foster-grandson Elynn. His first word that I remember was, Papa. I like that. Someone may say, “he is only a foster child”. But, he is family…I can assure you that we love him accordingly. To everyone who is still reading, I want to thank you for caring. Please show your concern for someone who is less fortunate than you—especially children--especially family. I can assure you that no one wants be alone when death is imminent. Too many times, I have made up an excuses for attending a funeral...I'll bet you have too. Our conditions are terminal too--it's just a matter of time. They need to be remembered and we need to be reminded.  Love must be sincere. Be devoted to one another in brotherly love. Honor one another above yourselves. Be joyful in hope, patient in affliction. Share with God’s people who are in need. Practice hospitality. Rejoice with those who rejoice and mourn with those who mourn. Do not be proud but be willing to associate with people of low position. Romans 12 May God bless you richly, Gary Clark {memorial celebration will be held on Monday July 10th at 1pm at The Church at Brook Hills}

The Story of Brighten Storie

Me, T (birth mom), Jessica and brand new Brighten

I have been trying to write this down since September, but haven't quite been able to find the words.

Now that Mother's Day is upon us again, the time seems right to tell this awesome God orchestrated story.....at least my side of it.

Last Summer I was contacted by Jojo's birth mother. She was expecting a baby and she didn't feel like she was in a good place to parent this child. Jojo would have a full biological sibling very soon.

I can't quite express the range of emotions that I went through when I heard that news! If I'm being totally honest, I actually toyed with the idea of adopting the new baby although I was not prepared to "start over" again so to speak. But gracious this would be Jojo's SIBLING.

I prayed a lot and God made the answer crystal clear. Biology doesn't make family, love does.

With so many families waiting to adopt a baby, I knew helping Jojo's mom find the perfect family for his sister was the right thing to do.

I thought this part would be easy. I attend a really big church and I feel like the families who don't have adoption as part of their story are in the minority! I truly thought that I would toss the info out there to a handful of people and BAM the obvious perfect family that had been right under my nose the whole time would appear. But God....

The baby was due in September....and it was August! So I was tasked with finding a Christ following family that was already paperwork ready to adopt, who lived near me (so Jojo and baby could know each other as they grow up), who was willing and able to up and go to Texas when it was baby time AND stay there for at least 2 weeks. And that was all the easy stuff. It also had to be a family who was wiling to "roll with" the craziness of this particular adoption situation.

Most adoptions take place through an agency and those are the people who walk you through all the paperwork, all the uncertainties, travel plans...everything. Well we didn't have time for all that, plus it would make the adoption significantly more expensive for the family that God chose to parent this baby. So it had to be a family who could find a way to TRUST GOD big time, and in a way to trust me as well.

And of course, God provided just that.

I had a handful of God fearing women who walked with me through these weeks, and I will be forever grateful to them. Because of them, I found my way to Jason and Jessica. We spoke on the phone about the craziness of the situation and they didn't seem too terrified, so we decided to meet for dinner a few days later. I knew after talking to them for a short time over Thai food that they were the ones. And the rest is history {which Brighten's mom has documented beautifully with tons of pictures in the posts below! When she refers to"C" that is me ;-)}


Brighten's Storie: Part One
Brighten's Storie: Part Two
Brighten's Storie: Part Three
Brighten's Storie: Part Four

So, this Mother's Day I feel compelled to tell our birth mom again how much we appreciate her. I can't imagine life without Jojo, and I can't imagine not being Brighten's "Auntie Grandma". You made the most selfless sacrifice not once, but twice, and we are forever changed because of your choice.

This is the letter I wrote to "T" three years ago for Mother's Day:

Dear Birth Mom: Happy Mother's Day

I just love the way God knits families together don't you?

Brighten on left. Jojo on right.

Brighten and Jojo meet.

 

Me, T and Jojo

 

Beauty from Ashes- A review of "The Lucky Few" by Heather Avis

pre order the book now!

In her first book “The Lucky Few”, Heather Avis takes us along on her journey through infertility, adoption and the unexpected gift of having not one but two children with designer chromosomes.

I consider Heather a friend, although we have never met in real life. The Down syndrome community is just awesome that way. So when I was given the opportunity to read her new book before its release I was elated and honored. I expected a book about Down syndrome, but what I read was so much more.

This book takes us on the bumpy but beautiful road that ultimately leads Heather and her husband Josh to the adoption of their seriously gorgeous children Macyn, Truly and August.

I was surprised to find in the first few chapters that this book really reads like a work of fiction, in a “I can’t wait to see what is going to happen next” kind of way. The way that God knit this family together is so crazy, but in a God crazy kind of way, that makes it a page turner from the Introduction to the Acknowledgements. 

This story is not just about Down syndrome any more than it is just about the very real struggle of infertility or the seriously risky business of adoption. It is about a woman who, like me, knew she always wanted to be a mom, and a great big God who she chose to trust, sometimes through tears and gritted teeth, every step of the way.

Change the names, add a few kids, take away the supportive and handsome husband and mix in foster care and this is my story. But the amazing thing about this book? It will become your story too. Because we all have those beauty from the ashes times in our lives. Yes, they all look different, but the end result is the same. If we choose to trust our God (who’s plans are often different than ours, but ALWAYS better) then we can all find ourselves in some of the most beautiful and hard places, where His light can truly shine. This is the place where He will be glorified and we will be blessed in the most unimaginable ways. 

“The Lucky Few” will be released on March 21^st, World Down syndrome Day. Please visit theluckyfewbook.com to read Chapter 1 today! You can also pre-order the book and get access to other fun goodies. Also, be sure to follow @macymakesmyday on Instagram to meet the beautiful family whose journey created this amazing story.