Healing isn't coming....but we won't give up

So, let me tell you about how God has been lining up some things for me lately. God and I have argued a lot in the past months. I've been struggling with thoughts of the future with Tyley Sue and I've been praying for answers. If I'm being honest, I would also tell you that there have been times I literally haven't even had words to say to God. Times that I've just sat in silence, desperation, anger and bitterness. During those times, I can't say that I left my "quiet time" with God feeling better or more at peace-just being real with you all. I have instead left those times more angry and desperate. Desperate for what though? I've been desperate for answers and for healing. Desperate for progress. Let me expand on progress too... I don't want just an utterance of a new word that happens one time, not just a good day that maybe looks or feels promising, not just a day where we don't have complete and utter meltdowns or the infamous "poop incidents" that happen at our house; but REAL progress. I want an overnight miracle where we literally wake up one morning and she says "good morning", "I'm hungry", "Momma", and "I love you".

But can I let you in on something that God has revealed? I hope you are ready for it, because I'm still not ready. Y'all.....healing isn't coming to Tyley Sue. Not in the way we like to think, pray, or desire. It's hard for me to say these words out loud. During my times with God in the past week, I feel like I have hit a few breakthrough moments.....like the time had come for Him to really reveal some things to me...or maybe it was the first time that I was ready to listen.

First things first, as desperate as I am for Tyley Sue's healing, I need to be that desperate for Jesus...all the time. Not just when I'm seeking answers or making requests. That's just the way it's got to be. Also, just because the answer is no it doesn't change the fact that I'm going to keep on seeking, asking, knocking, begging, serving, praising, and loving Him.

This past Sunday our middle school group was on their way back from camp, so I joined in on a small group with some other friends. Let me just tell you that it was meant to be for me to be in that room last Sunday. I took some notes that day that I've looked over this week and continued to let God speak to me through them. The message was all about not giving up on your dreams....

1. Even if the journey doesn't start well.  Or, in our case, never seems better.

2. Even if the journey is full of surprises....come on now, anyone who knows our testimony knows that it's been full of surprises! God has constantly been at work. Weaving together a beautiful life and testimony to point back to Himself through us. I don't always do it justice, I don't always do it right, and I fail daily....but He has called me faithful even through my mistakes and has entrusted me to be the mother to this unique, perfectly imperfect, one in a million little girl.

3. Even if it takes a long time to realize it. Habakkuk 2:3 "If it seems slow in coming, wait. It's on it's way. It will be right on time."  So basically, it's going to be slow, but it won't be overdue-not even by a single day. He says to be patient. When I read this, I don't think that healing is coming slow. I think He's telling me that in His time, He's working good and He has a plan for this madness. And that "it" will happen on time. "It" may not be healing or progress. It may just be the moment or moments where He becomes greater and we become less. (I'll get to that in number 5 and tell you what "it" may really be.)

4. Recognize and value the process. "Process"....will we ever really be done with the "process"? I don't know. I think the process is life. Life is our process. We have to value the day to day mundane things and look to find joy even in the trials. 1 Peter 1:6-7 talks about rejoicing even though you've had to endure trials. Sooooo basically he was saying, joy is ahead even though it sucks right now. ( I think God is good with my paraphrase here and I personally don't think he minds the word "sucks").

5. Refuse to let offense stop you. Genesis 50:20....you intended to harm me but God intended it for good. I've told several people before, and I believe I've said it on previous blog posts, I always go back to this point with God.....if this is the road you have for me you better use it for good. Let me glorify your name, praise you when it's bad, and praise you when it's good. Use her, use me, use my family to bring glory to your name...just please don't let it go to waste.

If never bringing healing to her in this lifetime allows our testimony to be strengthened and shown to the people we encounter in order to make Your name bigger.....we accept. If more people will come to know God and his character while watching our life unfold and seeing our continued faith versus seeing a miracle worked, then let it be. 

Just last night at a worship concert I felt God confirm to me that healing won't come in the sense I would like. This wasn't a devastating moment like it sounds. In fact, it's something I think I've felt and quietly known for some time.  I believe that more progress will come. We will still fight for whatever little bit of progress we can gain as we pursue therapy and work with her daily.  But during this process (life) I'm called to praise Him still and find joy in it. Joy shines through even the darkest times because it's not based on our circumstances, but it's based on the One who holds our circumstances in His hands. I'm not a sad person, I won't allow a deleted chromosome to make my family unhappy. We love big around here. We have tickle fights, we act silly, we chase each other around the circle of our living room and kitchen. We play music really loud and dance like most white people dance-with no rhythm! We have family dinners.  We have amazing friends who understand and accept the good, bad and ugly that comes with my family. We have unbelievable support and love from our families. Life is good.  Now, life hurts at times too. Sometimes Tyler and I lay in bed at night and feel the weight, the burden, the heartache, the death of our dreams come down on us. But before we close our eyes we remind each other that life is good....even without healing, it's good and He is good. We have been blessed.

P.S. I would like to put in this little disclaimer, that although I feel confident in God's word to me this past week and last night that healing isn't what it's all about for us, I pray to be wrong. The flesh in me still has a fight and a desire to see a miracle, so, God, if you change your mind....I'm good with that too :) 

Doctor's Appointment and a trip to Holland...and Italy

A lot of people have been asking how Tyley Sue's appointment went last week. I've given most people the generic answer of "it's good, nothing new though". Given the fact that so many have poured into our family through this journey with prayer and encouragement I decided to give you the low down on the appointment.

1. Her head hasn't grown anymore. It hasn't grown since she was a year and a half old. Now she's three years and 8 months old. So, this lets us know that there's not been any more brain growth since then. This also explains why her progress is painfully slow.

2. We discussed her constant activity and how it's difficult for her to be able to focus during therapy sessions, at school, at home, anywhere for that matter. If you've been around Tyley Sue much at all you know she is in constant motion. Running, jumping, clapping, flapping her arms, kicking her feet, twiddling with your shirt, jewelry, whatever she can get her hands on. At this appointment, Dr. Han even noticed how high her activity level was. So, we are looking into trying some new medications to slow her down a bit. Hopefully this will improve her ability to focus and get the most out of her therapy sessions.

Dr. Han also mentioned that it wasn't something she had previously thought much about, but the mice that she involves in her research that are missing the BDNF gene that Tyley Sue is missing, are also in constant motion. They are very hyper active. So the theory of "ADHD" may not be the case, instead the hyper activity may be a symptom of the missing gene. She's curious to see how Tyley Sue responds to the medication though and it's something she will begin to study more herself. So, there's a positive, if nothing else, Tyley Sue is in the forefront of modern medicine, making history and driving the research :)

3. I asked about one of the most worrisome things for me, potty training. Of course a year ago Dr. Han told us that this would be a possibility, but it would take longer. During this visit, Dr. Han confirmed that the other children she sees with similar deletions do not potty train until at least around age 9. These are the children that aren't on the autism spectrum (Tyley Sue is) and that aren't considered ADHD (Tyley Sue is). The children who also fall on the spectrum and are battling ADHD sometimes don't potty train until much later if ever. I'm hopeful that we will be potty trained one day, but if not, I'll just keep on changing diapers.

4. Communication was the other thing we discussed. I was curious as to how the other children with similar deletions were able to communicate. The answer was pretty much the same as the potty training; some communicate on a basic level closer to the age of 9 or 10, while others struggle even longer with their ability to communicate needs.

Overall, the prognosis hasn't changed much...I had allowed myself to become more hopeful prior to this visit about the idea of potty training and communication; however now I feel like I need to redirect my focus and rejoice on the small strides of progress we've made and realize that we will probably only make small strides at a time, with some of the major goals being very long term goals. 

After this appointment I was scrolling through Facebook when I read the status of someone who was wishing that their little one, about the same age as Tyley Sue, would just ask and talk about normal things instead of some really big, adult questions. I said out loud to no one in particular, 
"Yeah, well just be thankful they can talk and tell you what they are thinking or what they need." Tyler asked me what I was talking about and I explained to him what I had just read. He smiled and said, "Ashley, just remember, we are in Holland and they are in Italy. They can't possibly understand."

We say that often around here, referencing the story below...

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.


So, yes, on occasion when people brag about their kids, or when they do the opposite and they complain about how much they talk, or how busy they are with sports and homework, I have a moment of jealousy. Tyler is always there to remind me though that I can't compare Holland to Italy. They are both wonderful places. They both have so much to offer. They both are unique and special. They are just DIFFERENT. Luckily, God decided to let me go to Holland with Tyley Sue and Italy with Elijah. When I stop and see if from a different perspective, it's not that bad. It doesn't mean that the pain goes away completely, or that the hope for her progress goes away, it just means that I have to choose peace, contentment, and joy right where God has us. It means that God's plan for our family will cover multiple opportunities to serve Him and glorify His name between Holland and Italy.

A picture with Dr. Han from our appointment at Le Bonheur last week. 

Sweet boy....my handsome version of Italy

Sweet Sue Sue....My beautiful version of Holland

One year later...

I thought about this right at the turn of the new year; the fact that a year has passed since Tyley Sue was diagnosed with the 11p14.1 deletion. This morning I drove to work, like I do every day, and I passed by the service road that I turned off on about a year ago when Dr. Han called me. Dr. Han is the doctor from NIH that was able to really answer our questions, she's the one working on a cure, and she's the one with the brains of the operation for us! She called me about a year ago right after I left work. When I got the call I was just about to hit the interstate, and instead, I turned off on a service road and parked in a hotel parking lot. I thought it would be a quick talk, but I sat there for over an hour while she poured knowledge into me and allowed me to ask all the questions I wanted. She was extremely patient and kind as she broke some of the most heart breaking news to me. At the end of our conversation, she invited us to come to the NIH for testing so she could further confirm some things for us.

Once we ended our conversation, I continued to sit in that hotel parking lot and I cried. I was so scared and there was so much unknown ahead, but at the same time, I knew enough to completely wreck my world.  So, today, as I passed that service road, a little deja vu hit me. I felt a tinge of sadness as tears welled up in my eyes.

A year has passed, and not much has changed in regards to Tyley Sue's progression. Now, please don't think I take for granted the small advances she has made, because I most certainly do not. Looking back over the past year here are some of the things that she's gained. She is using her PECS book to communicate some. It's very helpful and I think gives her a great sense of accomplishment when she's able to effectively communicate her needs to us. She is now sleeping wonderfully thanks to a weighted blanket and some essential oils. She loves going to school and I think her attention span has improved as a result of it. She does seem to follow some of our instructions better.

As I listed those things that she's doing well at, I also can't help but think of the things she lost and never regained. Those are the things that bother me the most. She used to count to 10, alternating every other number with us, she used to say several different words like  "sassy", "what a daddy", "apple", "hey girl" and "happy". There were some others that I know I've forgotten too. I just thought she was being stubborn in the beginning and that she would say them when she wanted to, but that never happened. A year later and she still hasn't gained those words back that she used to say.

Over the past year I've watched Elijah surpass her in many ways. He feeds himself with a spoon and fork. He says "mama" "dada" "bottle" "snack" "nose" "'Lijah" "cheese" "shoes" "go" "bye bye" and "hey". He plays appropriately with his toys. There are moments where I see him easily master a task that I've pushed her on for a long time and she still can't even attempt to do it on her own.

People say you can't compare one kid to another, but it's impossible not to. It doesn't mean I love her any less or think differently of her because she can't do the things Elijah does, but it's just human nature to see the two and compare. Tyley Sue is unique and Elijah is unique, each in their own ways.

I've tried to think of how things have changed for Tyler and I over the past year. I think we've both come to terms more with how our life is different from our friends and families lives. We know there are limits to what we can and can't do with Tyley Sue. We've learned how to really enjoy the small advances and how to enjoy Elijah's growth without feeling sad for Tyley Sue or ourselves. I love seeing Elijah progress and learn. It's a whole new experience for me. We've also learned that some people can say some really hurtful things, but the people that love and care and encourage far outweigh the few negative comments over this past year.  We have moments where we still question the future and wonder what it holds for Tyley Sue and us all. I still have moments of paralyzing fear over the "what ifs" of her diagnosis since we don't know anyone else with this. But, I have many more moments of peace and acceptance while I try to just worry with today and not the tomorrows.

Life sure has changed from January 2014 to January 2015. We are starting this year off with an appointment this Friday to see Dr. Han again. She's moved from the NIH in Maryland to LeBonheur in Memphis, TN which is a huge blessing for us! So, we will head to Memphis 6 am this Friday to
meet with Dr. Han and discuss Tyley Sue's current status and see if there are any suggestions for us. I'm also curious to know how the research is going on her end and with the team at the NIH. I would ask that you all continue to lift our family up in prayer. We will also be going back to the cardiologist in a couple of months to check back on that abnormality with her heart and see if anything has changed there.

I've said it before and I will say it again; I will be forever thankful that God saw fit for me to be the mother to Tyley Sue. Knowing he orchestrated her birth with another woman and lined things up just right so Tyler and I would become her parents still amazes me. Tyley Sue is literally one in a million and we have been allowed to be a part of this story. He's used us to minister to others and I'm still able to share our story with new people. I pray that He will continue to use us to reach out to others and allow us opportunities to share what He's done and what He's doing in our lives!

Sneaky Grief...Comes up when you least expect it!

Yesterday we had our Trunk or Treat at church. The moments prior to the Trunk or Treat were a little hectic as we quickly realized that Tyley Sue's dress was entirely too big for her little body! So, I got out some scissors, cut a chunk out of the back of the dress and safety pinned it together! I put a cardigan over it, so no one could tell the difference and I  hurried out the door with the Cowardly Lion and Dorothy in tow. There were a lot of people there (really there were a lot of girls dressed like Elsa) which typically doesn't bode too well for Tyley Sue. She usually kind of shuts down in large crowds with lots of noise and just takes it all in. After walking around with me and my parents and eating a hot dog and riding the swings, I decided that maybe, just maybe, she would walk around with her little pumpkin bucket and let people give her some candy. We made it down to 4 other trunks when she started pitching a fit and "melting" as I like to call it, because I was trying to help her hold her pumpkin and because I wouldn't let her dig into the bins of candy people had, so we decided to quit as she started repeating "ma, ma, ma, ma" to me.....which in Tyley Sue's world means she wants her milk. So, I made my way back to our trunk, sat in the chair and rocked her with her "ma". We were surrounded by people; trick or treaters, music, talking, playing, a loud hot air balloon; but suddenly everything was quiet in my head and all I could think about was how different my life is and my child is from every other three and a half year old there.

Typically, I'm so busy with the day to day tasks of life, that I don't slow down enough to think about how different things are. For my family all of the little things that make Tyley Sue, Tyley Sue, have become our normal. My non-verbal kid uses a picture book to point out what she wants *sometimes*.  Other times she just melts down because she can't figure out what she wants, much less commuicate it to us in any way. She sits at the dinner table *sometimes* and eats with her hands, never with a spoon or fork, not knowing when she has too much in her mouth and continues to shove food in despite there being no more room to even chew what she has. Our mornings start a lot with crying from transitioning from sleeping to awake status, and she can't hardly function until she's had adequate time to rock in the chair while being snuggled and drinking her "ma". The thing that happens daily at our house and also one of her favorite things to do, is run around with a wash cloth in her mouth, chewing on it constantly, while watching cartoons as she jumps up and down and occasionally bangs her head on the bed or couch(thankfully she chooses soft surfaces to do this on). When bed time closes in on us, we go through a nightly routine of putting on her pajamas, placing essential oils on her neck an hour before bed and diffusing oils in her room, and then warming her weighted blanket in the dryer for 15 minutes just prior to placing her in her bed. I honestly can't paint an adequate picture of what life is like with my girl, but I can promise you that it is a lot different than what most parents of three and a half year olds are doing.

I wouldn't trade it for anything though and I don't want any other child but Tyley Sue, however, last night for just a moment, I let my mind wander and that part I keep turned off most of the time, clicked on, and the part of my heart that I keep under locks in public, broke free for a second, and I thought about what life would be like if she didn't have so many special needs and quirks. I wondered how fun it would be to walk along with her and trick or treat as she really enjoyed what we were doing. I looked at my friend's two,three, and four year olds and wondered what life would be like if she were like them. I wondered what emotions I would feel if she told me that she loved me, said mommy, or daddy.

I find it strange that I wonder about this imaginary version of my daughter, yet I never wonder about an imaginary version of Elijah. I guess this is just one of those things that we go through with special needs children, and I wonder if it isn't really just a manifestation of the continued cycle of grief we go through for the death of the child we imagined we would have.

Now, I don't want you to think that I'm sad with what I got; because I'm definitely not. I love her more fiercely than I ever thought possible and to me she is perfectly imperfect, like I've said before. She fills my heart with so much love and happiness. She fill my arms and my lap with the best hugs and snuggles I could imagine. Rocking her as her chocolate brown eyes look deeply into mine, is one of my favorite things about my sweet Sue Sue. I guess, there are just moments, and thank God they are fleeting, where I just can't help but wonder who she might be if that little piece of the chromosome appeared in the right spot. As I sat in the dark with her head laid on my shoulder I started to tear up at all of the thoughts flooding my mind when my mom popped up next to me and asked where my dad was. The moment passed, the "ma" ran out, and Tyley Sue was soothed and rejuvenated by the few moments of rocking and drinking she had.

She then sat in my lap laughing at me because I starting coughing after she finished her milk. She thinks it hilarious when anyone coughs or sneezes, which is funny in itself to me that she finds it so funny!! There was a time when we longed to hear Tyley Sue laugh. She didn't really start laughing at things until over the past year, and now she only laughs infrequently and at the most ridiculous and inappropriate things!  But, as she laughed last night, my heart was filled, and that little part that comes out every now and again, the fears, doubts, concerns, wishes, sadness, grief; was put away and locked back up. I moved on, letting it all go (I channeled Elsa from Frozen since there were so many there ha ha ha), because that is just what you do to keep it all together for yourself and your family.

I think God knew in that moment I needed to hear her laugh and I needed to see her really enjoy the night, even if her way of enjoying it was different from the ways of other children. Her sense of enjoyment came at that moment from simply being rocked and held and soothed and then being allowed to run, jump, and clap for herself.  Her enjoyment didn't come from the candy, the costumes, the decorations, the jumpy houses, or hot air balloon; and that's okay and it's what makes her unique and special to me and to most others who know her. I'm thankful for her and that God allowed me to be her mother because this little girl sure is teaching me a lot!!

Right after rocking and drinking her "ma"

My sweet Elijah as the Cowardly Lion! 

Dorothy getting her pig tails fixed up