eXodus Joy: 29

I am turning 40 this month and I have been reflecting on my life. I don’t think it is coincidence that I feel a stronger sense of purpose this year, with the start of Xtraordinary Joy foundation.  Forty is a number that is used many times throughout the bible to signify a period of time, like 40 days or 40 years, and represents a period of testing or judgement and then the fulfillment of promise.

I think, what if, my last 40 years I have been like the Israelites Moses led in the mass Exodus out of Egypt, “wandering the wilderness”.. and now I am seeing the Promised Land for the first time. what if the wandering is the key here. I haven’t exactly stayed the course these 40 years. Like the Israelites, I may not have kept my focus on the joy and instead got lost in grumblings. And like those blessed people, I have gotten to see some pretty significant miracles that have wakened my purpose and direction lately. I would say they felt like burning bush-type of miracles. The kinds that help shift focus to Joy.

I don’t sense that entering my Promised Land nor the next 40 years are going to be restful or easy. I have signed up for a lofty mission. But practicing Joy will definitely help me make the next steps in this journey.

When I looked up “forty” in my bible search field, a few verses actually really spoke to me. In the Message version I like to read, several times in Judges it says, “The land was quiet for forty years.” In other versions that quiet means rest and peace. Then if 40 years is the period of time, then a change is coming this year, right. Less peace and rest and quiet. Now my husband wants to know how I have been quiet ever. Ha ha. But really, if my life has been at rest these last 40 years it is about to rise up and make some noise now. I am thinking Xtraordinary Joy type of loud, like shouting my eXuberant JOYful noise.

Join with me, friends. Let’s shout our joy. Let’s discover this together, what it means to make a Joyful noise in Xtraordinary ways. I know it isn’t easy to show your silly, joyful side sometimes. I know it is out of my comfort zone to ask for help and ask you to join us in spreading joy. But that’s what my 40th birthday plight is. Stretch with me folks. Watch this video and then make your own video of what joy looks and sounds like to you. Make it as silly or loud as you want. And don’t forget to challenge others and share the gofundme site. We need all the help we can get to get this started. Thank you so much, friends.

Please join with me in donating to the start of our foundation.https://www.gofundme.com/xtraordinaryjoy

 

 

 

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Xtraordinary Joy:28

I am excited to write that this journey we have been on is beginning the next phase. I feel like we have run the adoption marathon and now are beginning an Ironman in Combatting rare  chromosome disorder. We know there are going to be blisters along the way but the prize is worth it. We are setting out to fund and find treatment possibilities for our daughter and are blessed to partner with amazing scientists eager to help. We have some great ideas, which of course need propelled by funds. Grants are not going to be readily available for such a rare disease so it is really up to us. So we are working with some of our best friends and community leaders to plan exciting fundraisers and raise awareness and money for this cause. Thank you for supporting us. We will soon have 501c3 status so your donations will be tax deductible. Please share and follow. And God bless these efforts. 

https://www.gofundme.com/xtraordinaryjoy​

Storytelling Joy: 26

Moriah doesn’t talk like a nearly 2 year old usually does. She doesn’t even say, “mama”. She doesn’t mimic me when I repeat sounds and words she should be able to understand by now.

YET.

That is what you all want me to say, right. YET! You all want me to believe she will. You have all been so supportive and keep me looking up. And Moriah Joy certainly keeps me hoping and believing. But I struggle with the scientific realist mind innate in me and the God-breathed strength and faith gifted in me. I struggle with the longing I have to hear my daughter’s voice call for me and the knowledge that there are children living my fear.

I have been blessed by Rare Chromosome Disorder Outreach to be connected with two other moms of girls with similar X chromosome deletions. These beautiful girls are 8 years old. And they are so much like Moriah. In many ways. They have bright happy smiles. They have similar excited hand motions. They don’t speak but use other communication efforts with pictures. They have low muscle tone too. The similarities go on.

These awesome mamas have welcomed me with open arms, so blessed to have another concerned mama that understands the fear of the unknown, the frustration of feeling alone with so few cases of this deletion… They don’t have the privilege of knowing what the future holds but are grateful to share a few years into our future. They have alerted me to the different types of seizures their girls experienced after age 3 and the medicines that they have tried. They have told me about their special educational classes, autism diagnosis challenges, and the anxiety that is characteristic of Fragile X.

What can I say? I have had some wind sucked out me. I feel blessed to have some new companionship and scared I know too much. I go through about every emotion possible everyday. I know I need to stay in the present yet I keep searching for answers to the future. I just want to be real, people. I struggle. I have a hard time just celebrating the victories. And there have been victories! Way more than challenges lately. Despite ear infection and three horrible sinus infections since her surgery 3 months ago, she has progressed very well with play, with eating, making new sounds, and trying to mimic… She is so proud of herself too I think. She has learned some hand gestures to songs and it gives us a great tool to teach her more. But I struggle to stay in the joy. I spend most of my day emailing specialists and scientists and reading papers and thinking of ways to help her. I feel God leading me. I know I am supposed to do this. As long as I remain in her joy and in the present. God has gone before me and he doesn’t need me to sprint out ahead. But everyday, he puts some great opportunities before me. EVERY DAY my to-do list grows. I have to believe this stirring I have is from Him. What if He has created me to be the mom and the scientist for just this need and time? What if the questions that keep driving me for answers are not out of angst and worry but out of PURPOSE and JOY?! And I can’t wait to share more with you in the next month!!! Doors are opening and plans are in place…

He has made me a storyteller. I am her voice (until she gets her own!-that’s my “YET”, friends). I was blessed to share our unique adoption story and now I will continue our story, wherever that leads. (Check out this cool video)

“…With every page that turns I see your faithfulness Oh the mountain where I climbed The valley where I fell You were there all along That’s the story I’ll tell You brought the pieces together Made me this storyteller Now I know it is well, it is well That’s the story I’ll tell There were some nights that felt like They would last forever But you kept me breathing You were with me right then And all that you have done for me I could never hold it in So here’s to me telling this story Over and over again Oh the mountain where I climbed The valley where I fell You were there all along That’s the story I’ll tell You brought the pieces together Made me this storyteller Now I know it is well, it is well That’s the story I’ll tell You hold the broken You hear my every cry, every cry My eyes are open I know that it is well, it is well.”

Boy, these words speak to me. And the video is perfect. God takes our brokenness and makes it part of our story of victory and redemption and joy for His glory. I know the world doesn’t teach us to embrace our brokenness. But what if we let God fill the brokenness with Him? Moriah has a broken chromosome that is actually pretty revealing of what is broken in me.

And wow, when my eyes are open to what God is doing for His good, I can honestly say, “it is well!”

My 9 year old son Sy reminds me that is not about the destination but the journey. He is pretty wise. I am on a journey, my friends, and I am bringing you with me. Thanks for sharing this walk with us. It’s scary. It’s exciting. It’s full of victories and tears. And it is beautiful.

Diagnosing Joy: 25

A month after our courtroom victory, there had been no appeal. We seemed to be in the clear. It felt good to breathe. That stress had been removed. But it was settling in that Moriah had some big challenges. Her physical therapy was progressing well. She was doing exercises to strengthen her muscles. And she had gotten inserts for her shoes to help her keep her balance and was starting to walk. She was so happy to be on the move. Her feeding therapy, even as slow as it was, was helping her keep food down despite bouts of gagging. She was tolerating more foods and textures and the therapists were excellent about trying new tools and techniques. In addition, she had started speech therapy, with the understanding that it may be a long time before she uses words. The whole family was helping. The boys have been so proud to help her with her therapy at home. And her day caregivers were more than happy to help and tell me any progress throughout the day.

And then her genetic tests came back-by email-“abnormal”. There was a detailed explanation of her results in the report.  We had answers.

This is a blessing in itself.  I have met many families since the diagnosis that do not have the privilege of a diagnosis, but struggle with long term delays and many unanswered questions.  So we are very thankful to have some knowledge about the cause of her delays. However, the diagnosis is complex, even for this scientist. And rare. And has no pretty name or awareness events or walk for a cure. But there are a lot of positives despite this. She will live. She does not have a terminal diagnosis. And I know God has big plans for Moriah Joy (please know that I do not mean God does not have plans for those lives that leave this world before we are ready; I merely claim the victory of eternal life for us through Jesus and the promises God has for us and I claim every blessing over my family).

Moriah is missing 46 genes on one of her X chromosomes. This is called a deletion. Actually her literal diagnosis is “x chromosome microdeletion,” although 46 genes seems pretty not-micro to me. Most rare childhood disorders or diseases are caused by 1 gene mutation. 46 seems so daunting.

Here is some background. Girls have 2 x chromosomes and boys have 1x and 1Y. So the next test our geneticist wanted to do measured how much of her “good x” was present in her blood. He called me from vacationing to order those next tests. Turns out she is about 50:50. This means half of her cells make the needed proteins and half of her cells do not. Of the 46 proteins she could not make in those cells, 5 of them are associated with known syndromes and disorders, with mild to severe symptoms.  For example, one of her missing proteins FMR1, Fragile X Mental Retardation, is what is lacking in those with Fragile X Syndrome. While she does not have that diagnosis because she has half of that protein, she has several symptom similarities.  She is missing more than that one protein. It may be years before we know how some of these deleted genes affect Moriah. And in the meantime I am reading as much as I can.

In my reading, I have found that there are other kids that have deletions like Moriah’s, but maybe different genes are missing or a chunk of the same region but not exactly the same. I have been able to find journal publications on children and adults that have very similar deletions so I can gain an understanding to some degree. A publication in 2014 states that only seven girls plus the three girls in that research article had been reported. Again, some deletions included in the study are smaller than Moriah’s deletion and sometimes the X ratio is different for each child. In fact none of the 10 reported girls have the exact same genes missing but have the most similarity. Moriah may be the only girl with that exact deletion. Most studies note any physical anomalies and developmental delays that give me a place to start (mostly comparing and giving me a level of expectation. For instance, most of the girls did not have words until 4 or 5 years old and were delayed to sit, crawl and walk due to muscle weakness.) Others similarly reported gagging, vomitting and reflux among other feeding issues.  These things are helpful even though I understand there are differences.

Definitely the most information available is on the FMR1 gene but I am looking into every single gene. I have been reading anything I can get my hands on. Most things I find with my experience in scientific research. I am sure it is a blessing but some days I read some difficult material and am not sure I can handle it as a mama. Many of the deleted genes are needed to regulate tumor suppressors. Without that regulation, she may be more prone to irregular cell growth (the “c” word). Several of her missing genes (and their absence) are implicated in some organ difficulties, specifically ovary failure. As a mom, I feel heartbroken over the reports of infertility and premature ovarian loss, but also know now is not the time to focus on this. And lacking another of her missing genes has been theorized (but not proven) to be responsible for brain tumors and bipolar disorder. You bet I’m going to learn more about this( but there is next to nothing on it at this time).

So I stay plugged into her developmental delays. And I have joined about every online community I can and continue to advocate for therapy and developmental resources.

I am putting it all together right now. Four months after diagnosis, I am writing specialists and researchers for expertise and gathering as many facts as I can. There is some excitement in X chromosome research that I plan to follow and propel if I can. And there are some biological advances in understanding and possibly treating Fragile X I plan to stay on top of. In the meantime, therapy is the best support I can provide Moriah besides unconditional love and family and stability.

I am attending support groups for special needs families and learning so much about some of the commonalities. I am gaining insight into autism spectrum, sensory processing, apraxia, gastrointestinal issues, ear tube dysfunction, sleep difficulties, anxiety and other behavioral and developmental concerns we are already facing. And most days I get a healthy dose of perspective and gratitude. A lot of parents are going through some battles I just have never allowed my mind to go. But now I am awakened to so much more. I have always had a passion for mamas; I wanted to be an OBGYN or midwife for most of my life. But now I get to connect with mamas in a whole new way, praying for their unique needs and learning from the steps they have taken. I can see God’s blessings in this too. And I am in awe of how good He is.

He IS good. All the time. And I am leaning on Him for strength and wisdom and compassion to be the best mama I can be to all my children.

 

 

 

Justice for Joy: 24

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Justice is something I had to learn about in context of how God sees Justice. And trust was something I was learning to reserve for God and not man. I was desperate for His righteousness to prevail. I knew an injustice had been served to us by a judge that had felt injustice done to him in his past and tainted his own ability to judge with proper discretion. From what we were told, the judgement was unlawful and unique, yet everyone we spoke with knew exactly the kind of terror this judge had brought about in other families. We wanted justice. We wanted to fight him. We wanted to blame him. But we wanted our daughter more. And fighting him would not help us in that battle. Thankfully our spirit-filled agency and attorney had helped us see this. I had to keep trusting them; they were with us all along, even though they were not profiting from our adoption at this point, and they had gone out of their way over and over to get all our paperwork and legal obligations transitioned to another agency and attorney.

While we waited yet again, I sought the Lord’s vision of justice. I read the book of Job. You know the story right, he loses everything but his faith.  Somewhere in the midst of his loss and pain, Job focuses on the wisdom and power of God and forgets his complaints. And then God redeems his life with even more. And so I keep my attention on the goodness and power through Christ, my redeemer. Worship was key. This probably deserves a whole post. But others say it better than me. I sound so cliché. I have just had to practice what I have read–gratitude brings joy.

My prayer warrior Debbie had messaged her friend/college roommate, our adoption attorney, on our behalf. I think it may have prompted the attorney to call us. We had not spoken directly to her in a year, only to her office. What she told us completely caught me off guard. All along I thought we had a chance to end this waiting once and for all at this upcoming hearing, but now the story was different. She insisted we were in good hands with her colleague because she wouldn’t be able to attend the upcoming hearing, but that it didn’t matter too much because it was just a logistical hearing at this point and it would drag on much longer because the opposing family member would “get their day in court”. I rebutted, “[x] has had their day in court and done nothing except show up. How could they be given more time…to do nothing except delay this longer and keep our family in hiatus?” She seemed pretty knowledgeable and insisted that they would have the opportunity to get an attorney and then we would go through months of gathering evidence before more hearings. I think she looked forward to the fight. She had written many of the state’s adoption laws and loved standing up for them. And she believed we were legally in the right. However, I was in dismay about what she was telling me. We had waited so long already. Normally, adoptions are finalized around 90days after placement. We had waited 90days plus one year already and were looking at another grueling, expensive year. But once again I had no control over any of this. We were still not considered a party and therefore could not be in the courtroom to make our plea. I was depending on the adoption attorney and I expressed this to her. I pleaded with her to make the case that this had gone on long enough. She said she would do what she could. I wanted to trust her but I felt so failed by the law at this point and skeptical that her colleague would care as much as I needed him to. I cried and shook and panicked.  But after that, came God’s calm assurance that He would take care of us.

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On August 28, 2015, we got a call we did not expect. The attorney, who had just told us not to expect a miracle, was indeed delivering a message of this very miracle. She did go to court that morning, even though she said she could not. She did plead with the new judge that we had been through enough. And the judge ruled in our favor. Hallelujah! It was the justice we had been praying for. I was shaking uncontrollably and could barely take notes so that I could remember the details. She was excited and talking quickly too. She told me that there was drama that played out like a soap opera in the courtroom. I will likely never know the details, but they don’t matter. A huge mountain had been moved. And we all know the only One who could move that mountain.

We were told that an appeal could occur. And in the forefront of my mind I really expected an appeal. But we couldn’t focus on that now. As the day went on and we shared our news with our family and friends… But it was difficult to celebrate. I can only explain that the devil was again trying to steal our joyous moments and taint Christ-honoring victories with his lies. Less than 24 hours earlier, Moriah’s doctors had spent so much time with us going over her possible diagnosis. The enemy was working hard to distract us from the amazing Win for our family.

But justice. Yeah, that abstract notion that God had been teaching us about through faith. Justice was tangible now. Justice had come. Joy was ours.

 

Endurance and JOY: 23

“And let us run with endurance the race God has set before us.” –Hebrews 12:1

It felt like I was running that kind of a race this last year. It wasn’t long before though that I was training for running half marathons before an injury kept me from pursuing that passion. I thought about the nerve pain that I cursed that prevented me from even running one mile. And I had just built up to 13 miles. You see I felt like I was meant to run a distance. God had given me the desire and the ability to run. And it felt like I had just figured that out with the completion of my first half marathon. And just as quickly, I had to make the call to not push my body in that way anymore.

I was getting the news of being picked by birth mama (yes, I am going back that far for this post) at this very time I was getting physical therapy for the nerve damage and muscle weakness causing my pelvis to come out of alignment, putting pressure on the nerves.  I remember telling the therapist, as I limped around in pain, not understanding why this was happening, “I am on a fast track to heal because I am going to need to lift a baby soon.” Sure enough, he was able to give me some great tools which I still have to use every single day just to put my pelvis and spine back in alignment. And holding my now almost 20 month old in the 95th percentile for height and weight is even possible.

Yes all of these memories and emotions come back when I read this verse. Indeed, both Moriah’s adoption and diagnosis would call for endurance. “We do this by keeping our eyes on Jesus, the champion who initiates and perfects our faith. Because of the joy awaiting him, he endured the cross, disregarding its shame. Now he is seated in the place of honor beside God’s throne.”–Hebrews‬ ‭12:1-2‬ ‭NLT‬‬

It is supposed to be that easy, focusing on Him. And why should it be difficult? He has given me so many promises to hold on to. But the fear would overcome me sometimes. And that is why I so needed the reminder that he is the champion and that he is perfecting my faith in this. He started this and he will finish it and he is with me in the midst. Joy is the prize for the endurance. His peace is my prize for the faith he shapes in me.

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Following Joy: 22

Tony and I took Moriah to see the genetics specialist just days after even realizing she may be dealing with a lifelong diagnosis and the challenges that go with it. The doctor noted some of the common features Moriah displayed with the syndrome characteristic traits, but immediately stated that he did not believe she had that named syndrome. He was thorough and kind, passionate about the children he sees and very knowledgeable, THE expert in that syndrome. Before we left, he sent us off with two orders for genetic tests. One would rule out the syndrome with the happy name with 85% reliability and the other would look for other known syndromes and genetic reasons for developmental delays.

I don’t know exactly why, but I sat on those tests for a while. Just knowing she didn’t have the one syndrome felt like enough for me. And I don’t remember what finally spurred me to take her to get more blood drawn. She had been through so much in such a short time.

Oh yes, I remember now. The new adoption agency was helping us set up the next adoption after the first fell through, and they were asking for so many details about her health and the delays. Their prompting and timeline is what propelled us to keep pushing for a diagnosis.

We waited a month for the results of the tests, all the while, keeping busy with therapies and adoption legalities. It was during this time that we found out that the same family member that had opposed our adoption would oppose this adoption effort again, even though there had been no word from this person for almost a year. Our recent efforts to have dialog with this person went unacknowledged again. It was heart breaking and yet not a huge surprise. We had prayed for peace for this person and a healthy relationship, but we were coming to grips that this would not be the case.

A new hearing was set and all of a sudden our esteemed attorney, the best, was telling us she would not attend herself; she was going to send the next qualified attorney. I was not happy. All of a sudden we were getting emails that things were not expected to go well in court and we should anticipate a longer, drawn out process filled with depositions and evidence hearings and … I was sick. I didn’t know how to deal with this news. I took this news to my prayer warriors, the same ladies that had been with me the moment I heard “adoption” and had prayed numerous times before. It was in my venting to these prayer warriors, that one of these ladies spoke up. She asked me to repeat the attorney’s name. She smiled. “That is my college roommate and good friend. I will make a call,” she said.

It has been like this every step, right! He has eagerly answered our prayers. God is so good. I didn’t have a magic ball to see the future. But I knew God had brought us this far and I would continue to follow where He leads. And it helped to have friends that would remind me of this and help me turn my tears and fears into faith and hope. IMG_9250