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.
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.
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.
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.
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.
“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.
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.
By the time we were celebrating a year with our girl, she had to have tubes put in her ears for chronic infections and hearing loss. After the surgery, we expected her to start making some progress with crawling and eating and sleeping and speech. We had assumed all of her delays were caused by the pressure in her head and the hearing loss. But after the surgery, although she was infection free for the first time without antibiotics, she was also not making the advances we had expected. A friend of mine suggested Early Intervention, a federal program, that had helped her premature twins who had suffered from gagging and oral aversions like Moriah. It took about a month to get assessed and then it took several visits to get told that Moriah indeed qualified for therapies. Moriah failed all of their tests except social. They commented, “she will get far with her dimples alone though.” She definitely won over everyone with her smile and personality but I was in shock at her results. I mean I knew she had some difficulties but some babies don’t crawl, right?! I just needed help with getting her to eat, I thought.
The therapies began, physical and two types of occupational. Immediately, the tools they taught Moriah and I helped with her crawling. They were figuring out sensory and spatial challenges. It seemed that Moriah’s gentle and dainty ways were now being attributed to a hesitancy to touch things. It was and is such a process. Everyday feels like I learn something new. One day she may avoid a certain texture and the next day love it. One day she may let me come close to her with food and the next day cry and avoid anything coming near her mouth. And sleep, well that was a mystery too. She could sleep sound one night (per week maybe) and be inconsolable for unknown reasons throughout the majority of nights.
A couple of months of progress later, the physical therapist told me she would really like Moriah to see a neurologist and get a bigger picture. She wrote up this long justification about Moriah’s reflexes and recommended a referral. Our pediatrician agreed and so we scheduled the visit. I didn’t know what to expect. But it was pretty non-descript. The neurologist ordered some initial bloodwork and asked a lot of pointed questions. I immediately began to look up some of the words he used to describe Moriah’s actions and realized we were probably dealing with something much bigger than I knew.
Now God is so cool! I mean I just get so excited when I think about how He gently provided for me during this time. Everyday He put new information in front of me and in only the ways He could orchestrate.
The day after Moriah’s neurology appointment I got an email about a seminar series. I honestly never open those seminar announcements, because are not in my research area of interest, but I did that day. And then I even looked up one of the topics out of the 12 talks. As I read, I followed a trail right where God was leading me, I believe, a path to genetics and diagnosis for Moriah.
The very next day, I took Moriah to her pediatrician for a routine well visit. He spent a lot of time with us and recommended genetic testing (he didn’t refer us at this time though). He even mentioned the syndrome I had read about the day before. I went home and read more on that syndrome. In the morning on the way to work, I stopped to get gas, and you wouldn’t believe who was at the pump ahead of me in line–the researcher who was presenting on the syndrome that I had only come across in those previous two days. Without much hesitation, I jumped out of my car and introduced myself and asked him about the syndrome. He was so kind and gave me some contacts and positive feedback. As soon as I got to work, I emailed one of the contacts, the founder of the syndrome, who just happened to be two floors down from my lab. He replied immediately and asked to see my daughter the next day.
Now I know that what we were dealing with was scary and complicated and not our plan, but I assure you that God’s hand on it lifted my spirits and gave me strength to face whatever was lying ahead.
We were beginning a new season. If the last season was “joyful expectancy”, this new period was “pained waiting.” In both seasons, we have drawn closer to God than I ever imagined and learned a level of faith and trust as we continued to relinquish control and surrender to God’s plans.
Your love is like radiant diamonds
Bursting inside us we cannot contain
Your love will surely come find us
Like blazing wild fires singing Your name
God of mercy sweet love of mine
I have surrendered to Your design
May this offering stretch across the skies
And these Halleluiahs be multiplied
Yes, we had surrendered our expectations, our plans before, when we accepted God’s invitation to follow him into Adoption. And boy had he delivered, beyond our best dreams. Now we were surrendering our plans again as we waited on His answers to prayerful concerns of losing our girl.
I don’t think it is necessary to go into all the details. But the following months went something like this:
Hearing 1, 2months after birth: We were not invited because we were “not a party”, so we sat nervously waiting for a call to tell us that the opposing member had been given a court appointed attorney and would be able to contest the adoption formally. We just had to accept this and pray.
Before the next hearing we composed a letter of good faith and well-meanings and shared it. We wrote, “…We have prayed for her for years. God has truly answered our prayers, and there is no doubt in our minds that she is the daughter God chose for us. We believe that all of this is God’s plan. Even this, as hard as it is. We know that something great will come of this. Hopefully in the relationship we all have. When we decided to go through the adoption process, our intent was never to remove a child from her biological family. We believe that we are able to provide her with two parents that will give her every opportunity to feel loved and know her worth and identity. We are so thankful that you have made your love and desire for her known. And that we will be able to share your love with her openly.” We went on to offer communication, visitation, photos, family… There was no reply.
Hearing 2, 4months after birth: Again, we were not permitted to attend and discouraged from trying. 1 day before the hearing we were told the court appointed attorney had made some bold moves, changing the hearing to a custody plea. There was little time to gather our thoughts but we called in our prayer warriors. We took the day off with our girl and waited with her, expecting a phone call. Instead our attorney came to our house. Was he going to take her? I had the biggest hold of her as he explained that things did not go well, that he had “never before had an adoption follow the path this one has.” He confessed how scared he was due to details I probably best not retell. But he would later tell us again how unprecedented this was. We nearly lost our girl that day if it had not been for the wonderful action our attorney put into play that day. I would later call other attorneys to start the next horrible phase of fighting for our girl, and they would tell me how, “genius” he was for his quick actions. We know he followed how the Holy Spirit guided him and we believe prayers were being answered.
Soon after: We were put into contact with a new attorney, the best in the state for contested adoptions, we were told. She praised the attorney who saved us days before and set out a plan for the coming trials. The plan: WAIT! We would wait! And then we would try again. The ball was not in our court.
Months and months went by. Nothing. No action by the family member that had contested our adoption. Not a request for visitation or photo, not a reply to our letter. We just kept loving our girl. And praying. And trusting. And then we got the go ahead one month before our daughter turned a year old. We would try to proceed with the adoption again. The ball maybe rolled over to our court slowly. We picked it up. We had to jump through a few more hoops before we could serve the ball. We would have to go through all the background checks and fingerprints and home study again. But we were moving in a positive direction.
We celebrated our girl turning 1 with treasure chests for our treasured girl and pirates and mermaids for all the family and friends that came. We celebrated this milestone, all while we were being clued in that Moriah was not meeting developmental milestones.
While waiting for adoption headway, we were waiting for our girl to crawl and eat without vomiting and… We were beginning yet another trial that had it’s own message of Joy.