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Adopting a Child with a Lipomyelomeningocele

April 20, 2015 by nohandsbutours 0 Comments

We knew we felt called to adopt, and called to China, but when we found out we’d need to go through the special focus route, we were afraid…

Special needs? Those words encompass a lot.

Locally we had a friend who had a precious daughter from China with spina bifida. This friend had spent a lot of time with me talking it all out, and give me the 4-1-1 on everything I needed to know. Because of her willingness to share so openly we weren’t afraid of this special need. I know many families who do not share their children’s stories and special needs, I absolutely respect those families but for us, we said yes to Molly and Wills because of the families that had gone before us, and were wiling to share.

In the spring of 2013 we found her file through Annie Hamlin’s site, Wonderful Waiting Kids. She was also listed through our agency as well. We locked her file immediately and began compiling info, asking questions, and praying whether or not she was ours. Y’all it was hard. We begged the Lord for clarity and that we wouldn’t make a decision out of fear. Molly was a 2.5 year old in China who didn’t walk, had clubbed feet and a large, large mass on her, where was it? The picture was so odd that we didn’t know where it was. We assumed her back, but maybe it was her belly? We asked for a better picture and when it came, I had.to.put.the.phone.down. Blown away at how a little one could have such a big mass, and live so long with it.

The Lord did give us clarity, and we said yes to Molly Zhen Zhen Gotbeter. We traveled in January of 2014 to adopt her. I need to be honest and say that when we undressed her for the first time in our hotel room in Kumming China I had to take a deep breath when I saw it. It looked so much bigger than even in the pictures. “Ok Lord, here we are..”  Deep breaths.


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We enjoyed China, and we adored Molly. The trip was wonderful and once home we all got settled and began the journey of more appointments than I thought was possible for one family. Pediatrician, adoption clinic, sedated MRI, urodynamics, blood work, endocrinology, gastroenterology. orthopedic surgeon, neurosurgeon and more.

What was that mass on her back exactly? The words we heard on February 25, 2014 weren’t exactly what we wanted to hear. Molly had an extremely large lipomyelomeningocele. Inside that mass was her spinal cord, an extra boney spike, an incomplete spinal cord fluid pouch, missing vertebrates and more. Deep breaths again. “Lord, you are good, and faithful and although this isn’t what we wanted to hear we are trusting you!”


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After lots of prayer and research, we decided to leave our state and head to Boston Children’s so Molly could see the world renown Dr. Warf, and the number one neurosurgery team in the world. Dr. Warf confirmed that what Molly had was very complicated and would take a long time to repair. He had one case that morning and then after that it would be Molly all day long. The surgery was successful and Molly did well. Afterward though, Molly had many, many complications and we were inpatient for 40 days. Three surgeries total: the initial, a wound clean out from an infection, and a repair of a spinal fluid leak. Many MRIs, ultrasounds, dozens of failed IVs, PICC line, NG tube and more.

We filed all the specialist in one by one to see our precious girl and give us guidance on where to go next.

Although our time at Boston Children’s was incredibly hard, it was also one of the most amazing times of my life. Through all of those trials we saw the Lord time and time again show up, and show out for Molly. I have never been in a place where daily I had to call out to him, read scriptures over her and just cling to his promises. The number 40 is used 146 times in the Bible, it rained for 40 days and 40 nights with the great flood, beginning with Ash Wednesday, we walk towards the cross for 40 days through Lent. The number 40 time and time again symbolizes a period of testing, trial, or probation. Although hard, that time was also sacred. One on one time with Molly, not ever having to share me, or wait, it was the ultimate attachment situation. I literally laid in her bed with her for 40 days. What a journey to reflect on!


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Now, a year post-op Molly is doing well. We now catheterize her every four hours, do a bowel management regiment nightly with a foley catheter, some baby soap, and 300 ml of water. She stays in panties all day and rarely has an issue.

We corrected her feet up in St. Louis with Dr. Mathew Dobbs through the Ponseti method and have returned to Boston Children’s several times for testing and follow-up appointments. We’ve had one big hospital stay the week before Christmas for a bad kidney infection that bought us a week there, and 10 more days of Meropenem with a PICC line at home. Her urine is daily infected, she has reflux in her kidneys, wears tiny SMO braces in her shoes and is super tiny. The size of a 2 year old at 4. Molly walks totally unassisted, and although she’s a little slower than kids her age she keeps up just fine!

Molly is so brave though, and adorable! You would never know when you see her what her little body goes through on a daily basis. She is smart as a whip and feisty. She may be little, but as her surgeon Dr. Stone called her in Boston, she is “tiny but mighty”.


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I know that Molly’s troubles aren’t over, and although I do hope we don’t have another period of 40 days where we are all tested in what seems like the wilderness, we will continue to walk this path with her, praising God for all he has done and what he continues to do in little, Mighty Molly’s life.

We are headed back to China to adopt another little one in a few weeks with spina bifda. I would love to chat with anyone considering this special need. God is able!

– guest post by Brittan

find my family: Brinx

April 20, 2015 by nohandsbutours 0 Comments

Who is needing a bit of sunshine on this Monday morning? We have got a treat for you today. Precious little Brinx.

Brinx was born in November 2012 and his special need is post-operative congenital anal atresia. He has a million dollar smile. He is noted to be “smart, cute and strong”. He entered his orphanage when he was approximately 2 months old. He had already had surgical scars but nothing of his initial surgery is known. He has had additional surgery since his admission.

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Reports from September 2014 share: Brinx was thin and small when admitting to Baobao class. Under the excellent care by the grandmother and nurturer, now he is smart and cute, also he is strong. Now he can walk in the activity room, can squat down and pick up toys on the mat, likes toys with button. He can call “bababa” if seeing the nurturer giving biscuits to other kid, can hold the biscuits with his fingers, will cry if seeing other kid drinking milk; can sit up and drink milk himself, then play toys after drinking.

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His staple food is egg, noodles, porridge and milk, supplemented with biscuits, bread and fruits. He can walk to nurturer for dinner with smiling. He is afraid of bathing, needs comforting. He is not scared if mom at his side.

To read more about Brinx and to request more information visit Waiting Child Info.

The Most Forgotten Habit for Healthy Attachment

April 17, 2015 by nohandsbutours 2 Comments

I set out to share with you how many years later I’m still working on attachment with my most precious children. Forming and maintaining healthy attachment is something as parents we will work a lifetime on with both our adopted and biological children.

I wanted to share with you ways we have little “connection checks” — playing those eye connection games and regular heart to hearts. But for some of you reading this — maybe many — those ideas will just feel overwhelming like you have only more to do and you are just… well, very tired.

I get calls regularly for referrals for attachment therapists and counselors for adoptive parents when they are tired and weary. I can’t recommend having a good family and adoption counselor and resources enough. But. There’s something I think we have put too far down on our list of ways to form healthy attachments to our children and often it’s not on the list at all.

Rest.

Not for them. But for us. As parents.


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Some call this respite. But I don’t love the definition of the word respite for this kind of rest we need as adoptive parents: a short period of time when you are able to stop doing something that is difficult or unpleasant or when something difficult or unpleasant stops or is delayed (Merriam-Webster).

Until healthy attachment is formed — it does feel unpleasant. But because this is such a process, for many it can feel like years before we are deeply connected. Others this deep connection might be from day one. While it IS difficult it isn’t unpleasant; brokenness is always difficult — but for us as parents the healing and connecting during the broken actually carries a holiness to us—so that word “unpleasant” just doesn’t sit with me.

Rest. To be restored.

Some call this retreat — but I don’t love that definition for what we need as parents to help us work on attachment with our precious ones either: an act or process of withdrawing especially from what is difficult, dangerous, or disagreeable; the usually forced withdrawal of troops from an enemy or from an advanced position (Merriam-Webster).

I don’t want to withdraw. While it may feel difficult and disagreeable at times to not have instant attachment — dangerous isn’t the word I’d shoot for and I’m certainly not withdrawing from an enemy when it comes to fighting for connection.

But rest. We forget how much we as parents need rest — to be restored.

I believe we need to move rest and restoration at the forefront of our connection and attachment reminder list of things to regular do as parents for our children.

Restore: to give back (someone or something that was lost or taken) : to return (someone or something): to put or bring back into existence or use: to return to an earlier or original condition by repairing it (Merriam-Webster).

Forming healthy, strong attachment between a parent and child who have missed the formative years together often feels like buying back time — only we all know time can’t be bought back. Forming healthy, strong attachment where so much is lost and broken truly requires so much more energy and often we forget to take care of ourselves — to restore ourselves — so we can continue to pour out, to come up with creative ways to connect, to try so many of the extra suggestions and connect deeply to our children who need this on a deeper level after they come home.

We find ourselves feeling too tired to even remember ways to connect or to even remember that our little ones might need us to take a different approach to something as simple as asking for another snack or making a mess that sends us cross-eyed while we weren’t looking. It’s very often we need our hearts to be repaired and restored so we are able to even respond to that list of ideas of how to connect — only many of us find ourselves unsure of how to even get our our hearts back again to help our little ones heal theirs.

Our children and connecting to their hearts are so worth fighting for — but you must first fight for your own heart before you can fight for anyone else’s. For how can a tired or empty spirit or heart really fight a good fight? We champion and cry that our kids are worth fighting for while we forget that we are, too. We need to put our air masks on first — take a breath… and then take care of our precious ones.

It can feel daunting, difficult or impossible to take care of ourselves after bringing home children who have special needs and need us to be ever present, but I want to encourage you to move the words restore my heart to the top of your attachment list for your children. For everyone that will look different. Make time to rest and take care of yourself whatever that means for you, and make sure you do this regularly — not just when you are in tears, broken and completely depleted.


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To help you remember and get started if it’s been awhile — here are just 3 ways I make sure I am regularly RESTORED:

1. I have one morning a week carved out for me to get a break. Because I’m a homeschool mom to five—I had to get creative. While they are in an elective day at a homeschool co-op—I take care of myself during that time. I rest and only do things that bring REST to my soul.

2. At least twice a year I leave for a weekend to rest. Some times this may be a girls weekend, a weekend by myself or a weekend with my husband. If we can’t find someone to watch the kids—we take turns and I’ll get away even if it’s by myself.

3. When things get hard and I need an emergency break, I have a friend who is my Respite – 9-11. Although I don’t love the definition of respite, there are times when I’ve completely lost sight and I feel like losing it in my responses — when my buttons are pushed. For you this could be a close friend or family member, but I think it’s essential to have someone on your team. For me it is my sister and she understands our needs and special circumstances — that sometimes I need respite so my heart can be restored. My sister has a heart for adoption but this is her family’s call to adoption rather than adopting to grow their family. There have been weekends that we needed to take a step back in order to take two steps forward — and there have been significant gains made in my choosing to be brave enough to say I can’t do it all and I really need their family to run beside us. Some of our biggest attachment achievements have been made after one of my loves having a weekend at their aunt’s house after a hard season and allowing my heart to have time to rest, process and refocus on what to do or where to go next.

It’s after these times of being able to be restored that I can pour out greater, take in more of His love and truth and focus on what we need to do next to go deeper. Too often we fail to see “take care of yourself” or restore your heart regularly any where on the list of forming healthy attachment—and more often we are reading those lists when it feels like things are really hard and we are desperate. But when we approach a situation rest and restored no matter how hard it is — it looks and feels completely different.

It’s my hope and prayer that you — no matter where you are — will remember that before you can bring restoration to others in your home that you have to have it yourself. Taking care of you is a vital part of healthy attachment in your home — and something you will as a parent always have to fight for. But you… sweet reader… are so worth fighting for, too. So I challenge you to fight for your own heart first — and then fight well and hard for the hearts in your home. And I pray that there will be sweet connections to follow.

Running with you,

The Burden of Expectations

April 17, 2015 by nohandsbutours 2 Comments

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I will always remember the first time I made an attachment blunder. My three children had only been home a week. It was a traumatic moment for both my daughter and myself. She was two and I was trying to “set limits” by telling her what she can and cannot do with the toys. She …Read More

a family for Rosie

April 16, 2015 by nohandsbutours 0 Comments

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I first learned about this precious girl on the Down Syndrome Adoption FB group and was immediately smitten. And when you see her picture, I’m sure you’ll agree. Those chubby legs. That black hair. Those pink cheeks. Oh my. Now that we are home with our Clementine, who also has Down syndrome, I have such a huge soft …Read More

find my family: Yanni

April 16, 2015 by nohandsbutours 0 Comments

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Yanni is a 4 year old boy with epilepsy, which is well controlled by medication. He was found abandoned when he was only 10 days old. He has good speech and motor development and no other identified health issues. Yanni lives in a foster family and is very attached to his foster parents. He loves …Read More

Attachment: What’s Worked For Us

April 15, 2015 by nohandsbutours 2 Comments

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I would say we are experienced in attachment but we are by no means experts. After adopting 13 children we have had quite a bit of “on the job” training! Ten of our adoptions have been with children between the ages of 5-11. Our daughter adopted at 11 years 3 months was not prepared to …Read More

Adopting a Child with Tuberous Sclerosis

April 14, 2015 by nohandsbutours 1 Comments

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If you have ever adopted from China before, you remember sitting at the table staring at that dreaded form asking you what special needs you thought you and your family could handle. Filling it out seemed cruel. On the one hand most of them scared me to death and at the same time it filled …Read More

find my family: Brayden

April 14, 2015 by nohandsbutours 0 Comments

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Brayden was born in April 2012 and abandoned when he was 18 months old. After admission to the hospital he was diagnosed with Hemophilia A. His birth parents did leave a note so it is believed that his birth date is known. After spending about 6 months in a Care Center Brayden was transferred to …Read More

to love one

April 13, 2015 by nohandsbutours 1 Comments

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She stands in the middle of the room, children at her feet. Some are fighting each other for her, the rest are begging to be picked up. A little girl with albinism sees me standing in the doorway and runs over, arms spread wide and high. I bend down and pick her up and within …Read More