For those of you not on Facebook, I wanted you to have the blessing of hearing my sweet, singing Mattie.
May19
May19
Feeling MUCH Better
Just waiting for rounds tomorrow to see when Mattie will be going home. Should be soon though. As you can see, he’s back to his happy, silly, smiley self!
Thank you all for praying!
May17
Update on Mattie
Mattie’s starting to feel better. It’s been a rough few days, and we truly appreciate your prayers. I’m so grateful that we left for the ER when we did. By the time we got there Monday, Mattie was working very hard to breathe and requiring a significant amount of additional respiratory support. (For those of you who have kiddos with respiratory issues, Mattie was retracting terribly with each breath, nasal flaring, head bobbing, the whole bit. He was on 10 liters of oxygen and only satting in the mid-80′s)
After some additional breathing treatments and switching him to the hospital ventilator on higher settings, he started to settle down. He was a very sick little boy though. They drew labs, did X-rays, started an IV… the whole bit. He was admitted shortly after.
We are GREATLY relieved that Mattie’s heart is doing well, and that the cause of his respiratory issues is NOT hear related.
At this point, they are feeling that it is a viral illness affecting his respiratory system. We’re not really 100% sure on that though. The good news is that he is back on full feeds and on his home ventilator again. I’m praying we go home tomorrow. REALLY PRAYING!
Please continue to pray for his healing and that we can get HOME SOON! We’re all pretty worn out. It has been a 3 week up and down battle with some type of illness or another, so we went into this completely fried. Last night I sat wondering how on early with manage 11 months of hospitalization last year. I know it was ALL GOD.
May15
Prayers for Mattie Please
Mattie’s had a rough few weeks. He has struggled through some infections, viral type illnesses, and is just not doing so hot.
We see Cardiology tomorrow to check on his heart. The way he is acting and looking makes me wonder if things are not so terrific with his heart. His respiratory system is working hard- he’s requiring more oxygen to keep his sats up and he is visibly working harder to breathe.
We’re all super worn out and my own heart is weary too.
Please pray for us and ask God to give each one caring for Mattie wisdom to get to the bottom of this.
Momma and Mattie both pretty worn out.
May13
Happy Mother’s Day to Me
It’s Mother’s Day and I have a lump in my heart this year.
My firstborn son is moving out on his own.
And yes, I cried a big snotty sob when he hugged me to walk out the door last night. And I blubbered out something like, “But I’ve had you your WHOLE LIFE!” to which he responded, “Oh, Mommy, I’m only moving 5 minutes away and I’ll be over a lot, I promise!”
Then to top it all of Elia started sobbing, “I don’t want Nicky to move. I want him to live with us forever!”
How did it even come to this? I’m so confused.
Wasn’t it just yesterday that he was dressing up as Batman, playing with his Playmobile, or out in the backyard shooting his bow and arrows?
I don’t know what happened, but it totally caught me off guard. I wasn’t prepared for this. AT. ALL.
This boy has filled my home with so much joy for nearly 20 years.
Here I am with Nick the day we brought him home from the hospital.
He is my firstborn.
I still marvel that they actually let me out the front door of the hospital with this child. What were they thinking?
This was just before my 24th birthday and I was in love.
Giving birth is one of the most painful, joyful, rewarding experience in this life.
Say goodbye to a child who is leaving home for the first time, might just top that in pain, joy, and reward!
I’m so proud of this amazing boy of mine. He is a wonderful, kind, creative, witty, generous, compassionate, wise young man; and I’m so excited to watch him embark on this new adventure.
I’d like to think I did a pretty good job of being his mom.
Not perfect, but pretty darn good.
Happy Mother’s Day to me.
May12
On the Radio with Randy Bohlender’s “Spirit of Adoption”
The other day I threw on some close, tried to hide the bags under my eyes with some make up, and headed out the door with coffee in hand to do a interview for our friend Randy Bohlender’s radio show “The Spirit of Adoption” only to realize with great relief that I could have showed up in my pajamas and no make up and none of you would have know the difference. But poor Randy…. Glad I spared him the pain.
Here’s the link to the 30 minute interview.
May1
Don’t Forget to Breathe
I don’t really know the song well, but my kids have it on some sort of playlist, “Don’t Forget to Breathe” by Alexi Murdock. (I had to google the few lyrics I did know in order to properly credit the artist. My family of musicians will tell you that my ability to retain music facts is poor, to say the least.)
Sunday morning however, as I sat in the quiet of Mattie’s room, unable to go to church once again; the lyrics, “Don’t Forget to Breathe” began to just play on repeat in my mind.
“So don’t forget to breathe
Don’t forget to breathe
Your whole life is here
No eleventh hour reprieve
So don’t forget to breathe
Keep your head above water
But don’t forget to breathe
Breathe….
Don’t forget to breathe
Don’t forget to breathe
You know you are here
But you find you want to leave
So don’t forget to… breathe
Just breathe….“
I looked at my beautiful son. He was sleeping peacefully surrounded by the whirring sound of the machines that helps him breathe. He takes his own breaths, but the machine gives him an extra dose of support with each breath he takes because of the weakened condition of his lungs. And if he forgets to breathe, it breathes for him.
I’ve seen Mattie panic in fear or pain. I’ve watched him bear down, causing his lungs to tighten up.
I’ve watched him forget to breathe.
Do you ever find your self holding your breath? Whether physically or emotionally, sometimes pain and fear cause us to panic, to tighten up.
We forget to breathe.
I have forgotten to breathe so many times in the past two years.
But He has breathed for me. He steps in with His loving kindness and His gentleness, and He whispers, “Breathe, just breathe….”
And I breathe.
I breathe in all of His strength, His wisdom, His love, and His compassion.
There is a worship chorus from a number of years ago that speaks to this need that each of us have to breathe in the very essence of who Christ is.
This is the air I breathe
This is the air I breathe
Your holy presence
Living in me
This is my daily bread
This is my daily bread
Your very word
Spoken to me
And I … I’m desparate for you
And I … I’m lost without you
I cannot do this. I am simply not strong enough.
I am desperate.
I am lost.
There are days when all I can do is throw my head back and breathe in the strength of who He is.
This is one of those days.
Just breathe….
Apr30
The Blessing of Adopting a Child with Down Syndrome
I have been asked recently to share about my experience in adopting children with Down syndrome.My hope is that with this post, I can share my heart, as well as give some practical insight into what this journey has been like for me and for our family.
Adopting a child with Down syndrome was not something that I had dreamed of all my life or had even been contemplating when we began our adoption journey. It came at me out of the blue one day as I was celebrating with my brother in law and sister in law, Derek and Renee Loux, as they committed to adopting three precious children from Eastern Europe. I was simply on the phone with Renee, and she was talking me through the Reece’s Rainbow website to show me the photos of the three boys they were planning to adopt. At the last moment, she said, “Oh Trace, scroll down to the bottom and look at the photo of the little blonde boy with Down syndrome. I would bring him home too, but Derek said, ‘Only three, Renee!’”.
I scrolled down to the bottom of the page and my eyes landed on the photo of the most beautiful little boy in the world, and I fell in love. From this day on I will always believe in love at first sight. In the deepest part of my heart, I knew that this was my son, and that I would move mountains to bring him into my home and call him my own. With in seconds, I was on the phone with my husband, who came home to check on his crazy wife. My children were in the background asking, “When can we go get him, Mom?”
I didn’t plan this. God did. He knew from before time began that this little blonde-haired, hazel-eyed boy would be my son, and He caused our stories to collide.
Aiden was 3 at the time we adopted him. Our first months/year home with him were filled with so many doctor’s appointments that I eventually lost count. Every specialist under the sun: Cardiology, Infectious Disease, our regular Pediatrician, The Down Syndrome Clinic, Ophthalmology, Dental Clinic, Endocrinology, the list goes on. We had him evaluated through the school district for educational services, physical therapy, occupational therapy, and speech therapy.
I’ve been asked what I expected and what took me by surprise:
I expected to love this child.
I expected him to have developmental delays and possible medical issues.
I expected him to have fear and anger because of a painful past.
I did not expect to be admitted to the hospital within months for a lung biopsy because of a positive TB test, or that he would eat an orange crayon in the dental clinic waiting room, making his exam impossible.
I did not expect to clean up the most horrible poopy messes on the planet from his hands, the walls, and crib rails.
I did not expect that one child could bring so much joy and delight to our family!
And then 2 years later we felt prompted to renew our home study again, this time knowing that we would pursue a domestic adoption of a child with Down syndrome.
We were matched with a birth mom carrying a little boy with Down syndrome. Because of late pre-natal care and diagnosis, we were did not know whether he would have a heart defect or now, but we were prepared to walk through that if needed. We prepared to welcome Mattie into our home the best way we knew how.
Little did we know…
I expected to love this child.
I expected to love this child.
I expected to love this child.
And I knew that we would give him every thing he needed to have the best life possible. I was grateful that we lived near such an amazing medical facility and that we had a wonderful Down Syndrome Guild in our community. I felt ready.
I did not expect to spend the first 11 months of my son’s life in the hospital watching him face life threatening illness, four surgeries (Two open heart surgeries, feeding tube placement, and a tracheostomy). Some of my posts on this journey: “Fix It”, “Love and Machine”, and “Love Heals.”
I did not expect to take home my child on a ventilator needing the support of skilled nursing in order to care for him at home.
I did not expect that one child could change my life, show me how weak and how strong I really am, and bring more joy and love than I could have ever imagined.
Practical tips and things to consider when planning to adopt a child with Down syndrome:
1. Be Prepared: If you are considering the adoption of a baby still in the womb, you will need to be prepared for ANYTHING, because there are a lot of unknowns! Heart defects are common with 40-60% of all children with Down syndrome. These defects can often require surgical correction. Some are detected through ultrasound and some are not. Children with Down syndrome can also face a number of other medical issues: thyroid issues, feeding issues, vision issues, etc… READ HERE FOR A SUMMARY, Get a basic understanding of the diagnosis and read up on the FACTS!
2. Educate Yourselves: Read and get connected! The National Association for Down Syndrome, and The National Association for Child Development are great resources; as well as your local Down Syndrome Guild- here’s a link to ours in Kansas City, as a great example! Read books like ones that are on this TOP 10 LIST. I’m currently reading “Down Syndrome Parenting 101,” so far so good!
3. Insurance: Find out what coverage your insurance has, but also keep in mind that your child will most likely qualify for medicaid due to the diagnosis of Down syndrome. A child being adopted domestically with Down syndrome may also qualify for adoption subsidy to help offset other costs related to their care.
4. Preparing for the Future: A child with Down syndrome can achieve a great deal of independence, but it goes without saying that he/she will need extra support even into the adult years. This is another great reason to tap into your local Down Syndrome Guild- so that you can meet and talk with parents of older children/adults with Ds and glean from their wisdom and years of experience. Think about who will care for your child if you and your spouse should pass away, possibly a family member, an older sibling, or a close family friend. Here’s a link with some great advice on GUARDIANSHIP, and a link on ESTATE PLANNING,
5. Educating Your Child: You will need to look at all of the resources available to educate your child. Early Intervention programs like “First Steps” provide in home training and therapy in areas of Speech, Physical, and Occupational Therapy. Once a child reaches the age of three, those services are available through the local public school system. We were blessed that our children with special needs were able to attend an amazing public pre-school where they received all of their special services. Your child will have an IEP (Individual Education Plan) through the local school district. If you choose not to utilize public school and opt for Christian school or home schooling, you should still be able to have your child evaluated and receive special services through the school district even if not attending full time. Get educated yourselves and find out what your options are. You are your child’s best advocate! (A quick Google search will show you all of the great resources on Homeschooling Your Child with Down Sydrome.)
6. Family and Siblings: Our children with Down syndrome have been fully accepted into our family. The children already in our home have been amazing. They have learned so much, grown, and become stronger, better people because of the impact their siblings with special needs have had on their life. We have been blessed with an incredibly supportive extended family, but there are times when you may have to educate and prepare your family for welcoming a child with Down syndrome.
Here are a few additional websites that might be helpful:
Down Syndrome Education International
National Down Syndrome Congress
National Down Syndrome Society
Praying that this little bit of personal information has been helpful, if you are interested in learning more about adopting a child with Down syndrome, or any other special needs, please email me about our Special Needs Adoption Program, tracie@christianadoptionconsultants.com
Apr20
Woven Together In the Depths of the Earth
“When I was woven together in the depths of the earth, Your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.”
Psalm 139:15,16
Sometimes I feel like my life is a tapestry. Everything feels so connected, so woven together, each experience, relationship, each moment dependent on the other. Nothing feels isolated or singular. Every part of who I am dependent on the rest.
I am creative. I am nurturing. I am determined. I am passionate. I write. I think. I speak. I love. I touch. I breathe.
I am a wife. I am a mother. I am a daughter, a sister, a friend. I am a teacher. I am a leader. I am a giver. I am a writer. I am a voice.
I work with my hands. I live with my heart.
To think of my journey as a straight line or even a winding path, seems so limiting. My journey feels much more like a woven tapestry of colors and textures- of dark and light, of bright and dull, of soft and rough. I don’t leave one moment and move on to the next, I carry each one with me.
I have experienced great joys and incredible tragedies. I have delighted in beautiful, tender moments, and wept over deep, painful ones. I have grown through pain and learned through hardship. I have seen the kindness of God in my life both through the beauty and through the pain.
I recently met an incredible man, Whispering Danny. Meeting him to some could seem like a chance meeting, a “nice to meet you” kind of event. But for me it has caused some of the fibers in that tapestry I call my life to resonate brighter than they ever have before.
During my first meeting with Whispering Danny, I learned that he is a Messianic Jew who was born in Russia and was brought by his mother to the United States in 1975 as a young boy so that he could receive better medical care for a condition in his vocal chords that even to this day requires him to have benign tumors removed every 14 weeks. I learned that he has chosen to leave his tracheostomy open so that he can recover from his surgeries more quickly. We talked about my Mattie and the miracle of his life. He was kind and gentle as we talked about life and Jesus.
In my second meeting, I took a picture of Mattie to Danny, which he promptly tucked in the edge of a picture frame. He told me that he will pray daily for my son. He asked about Mattie’s diagnosis and medical issues. I told the story.
And then Danny began to share more of his story.
I learned that Danny spent the first five years of his life in the confines of a hospital room in a Russian medical ward for critically ill patients. His room had no window. It was his world. For 5 years, he knew nothing of what lay outside those four concrete walls. He was allowed no visitors, including his family. When his mother came for him, 5 years later, he didn’t know her or even trust that she was his mother. He was strong, he had lived through pain, and had learned to take care of himself.
As Danny told me more of his story, tears were streaming down my face. He handed me a tissue and his beautiful, raspy voice, he said, “Oh, please don’t cry, it has a happy ending.” Well, darn if that didn’t make me cry even harder!
He shared with me about his mother, how their relationship grew and healed, and how she never let him become hindered by his disability. In fact she pushed him to do things that others felt he couldn’t do. When neighborhood friends told him he couldn’t be part of their boxing club because of his trach, she showed them that he could take it by knocking him out in front of them. When he complained about not being able to swim in the pool like the big kids because of his trach, she pushed him into the deep end so he could learn to hold his breath and swim. He shared with me how he loves to look into the eyes of young children with similar health issues and encourage them that they can do anything they set their heart to do.
I don’t know if I will ever meet Danny’s 5 foot tall Russian American mother, but I would love to. I would love to look into her eyes and thank her. I would thank her for going back 5 years later and taking her son out of hell, even though he may have despised her. I would thank her for going to the ends of the earth to make sure that her son could achieve all of his dreams. I would thank her for her brave and courageous example of mothering a child with special needs. I think I would like her.
I had little ability to control the tears streaming down my face because it took all of my energy not to burst into heaving sobs. Somehow in the words of Danny’s story, I heard my own children’s stories. I saw Emma and Aiden in an orphanage in Ukraine. I remembered how Emma despised me for coming to rescue her because she didn’t understand my love. I saw their past and was reminded of what could have been. I sat listening to a beautiful, strong man who had forgiven and been healed because of Jesus.
And I felt so much hope.
Hope for my own beautiful ones.
And I felt courage.
Courage to become the very best mom that I can become. To love my children well. To provide them with all of the encouragement and support, and maybe a push in the deep end from time to time, to help them become all that God longs for them to be.
I have two more meetings with Whispering Danny. I will go each time with my ears and my heart open. Not only is Whispering Danny helping me tell my story through the art that he is creating on my back, he is adding to the tapestry that is my life by offering to share his story and his heart with me.
If you’d like to learn more about Whispering Danny’s testimony, I encourage you to watch his video here:
Whispering Danny – I Am Second.
Image “Woven Tapestry” by Claire Jones
Mar30
The Song of Redemption
You may remember the story I shared of my little Preacher Boy Mattie and how his LIFE story shared by a dear friend of mine, Kelly Clinger, saved the LIFE of another. (If you don’t know the story, click HERE and read it before reading any further)
Well, yesterday Mattie and Kelly met for the first time, face to face. Kelly is no stranger to Mattie’s story and has been faithful to love, pray and encourage over the past year and a half. Mattie stole her heart, much like he stole many of your hearts. Kelly is a voice for LIFE, a voice for the UNBORN, and has devoted her life to defending and protecting both children in the womb and talking to women as they consider abortion, sharing her story of deep pain and regret, forgiveness, and offering hope for a better way. This is personal for her. My son’s life is personal for her.
I watched Mattie greet Kelly with great delight and do his little shaky baby dance upon seeing this beautiful visitor come in his room, and my heart welled up with emotions that I hope I can fully express in a few words. Kelly has become a defender. Mattie was one sweet boy whose very life is the result of the prayers of the many defenders of LIFE- Kelly was one of them.
I held Mattie and we talked. I answered some medical questions. Bragged about Mattie’s development and growth, and then I said, “You can hold him.” I place my son in her arms, and he looked up at her and began to sing. Mattie loves music and he loves to sing, but I believe that when I placed my son in “Aunt Kelly’s” arms, there was song in his heart just waiting to come out. And Kelly sang back. They had a moment that was as beautiful as undescribable moments can be. There were few words spoken because sometimes words just don’t come, or if they did the tears would overtake them.
I said to her, “Mattie is saying thank you.” That’s all I could say. What else do you say in a moment like this?
I asked Kelly later in the day to share her thoughts about meeting Mattie.
I read with tear-filled eyes this morning:
“I got to meet Mattie today. It sounds funny to say that because I feel Mattie and I have always known each other.
His room doesn’t look like a nursery. Dressers that should hold clothes and toys are storage for medical supplies. There’s a rocking chair in the corner that should be reserved for Mama Tracie and Mattie’s nighttime snuggles, but instead Erin, a precious nurse who helps to care for him, was sitting in it. Mattie is hooked up to so many tubes…but as we got closer to his crib, he rolled over and looked up as if to say “Well hello!”
Tracie picked him up and he immediately started kicking his feet like he was SO excited. We got a few pictures of the 3 of us together and then sat on the floor with him. To be honest, I wanted to hold him but I didn’t know if that was ok.
I really wanted to ask him questions…tell him how valuable his life is…tell him what happened in the salon that day. I told him one day we would take our story on the road. We talked about Australia and Hawaii and how great it would be. Of course, I spoke with my mouth and his eyes did all the talking.
Tracie did a little something with his tubes to see if he would make some noises for us. She put him in my lap, and he looked up at me and started to SING. I didn’t know what to do. I just started singing with him, and then I started to cry. “He’s thanking you”, Tracie said. I wanted to say something, but I thought I would lose it. We were all crying, but none of us could speak. Mattie’s song was saying it all.
It’s amazing that God can use a child who others might think cannot communicate to speak so loudly. Today he sang a song to my heart, but on a grander scale, Mattie’s life sings a beautiful a redemption song. It is an echo of those made free…and for a moment, I contemplated all of the ones like Mattie who were never given a chance to sing. What a choir we are missing.
Precious Mattie, I will sing your song for you until your lungs are strong enough. I will stand and run until your legs can carry your story. Thank you for reminding me today that God sees. I love you little buddy. ~ Aunt Kelly”
