His Bella

I am grateful for the return of school. The comfort of our tight schedule makes the chaos a little quieter. My online silence has been due to new developments and lots of doctors appointments. That and the harsh reality that I have to sometimes get myself to a better place mentally before I throw up all over my blog.
Newest developments….Bella has officially been diagnosed as having Soto's Syndrome by her geneticist. I thought I would feel immense relief at having a diagnosis…something I could point my finger at in the really tough moments and blame. But I cried. Hot, angry, sad, disappointed tears. Then, as I do, I sniffed, I wiped and I planned. I plan for therapies. I plan for futures. I plan for survival of this madness. I plan to make it feel like I am not spiraling out of control into what some days feel like a rather dark hole. But God is gracious to me and when I cry out He pulls me close to Him and whispers into my mother's heart how much He loves my Bella. That she is His Bella. That He formed her and He alone can plan her future. And then He tells me the same about me. Ahhh, peace.
I have once again been asked to lay her on His altar. We saw an ENT in February and after testing discovered that Bella's eardrums do not vibrate properly. The doctor's first thought was that it was due to trapped fluid so she put Bella on medicine to dry the fluid up for 30 days. We saw the ENT again Wednesday. Bella's left ear shows marginal but still dismal improvement and her right ear shows no change at all. The doctor thinks now that the fluid has been there a very long time….the concern being that if there a long time that the fluid could have destroyed the small bones in the ears that create sound. I asked the doctor if Bella hears like we do….she said Bella does have some hearing in her left ear, possibly some in her right ear….but it is all muffled and garbled much like Charlie Brown's teacher. No wonder when I tell her I love her she says "shoves chu" back. Oh sweet baby girl. Bella will have surgery Friday morning to insert tubes in her ears. The hope is that the tubes will remove any remaining fluid and correct the problem. We will retest her hearing in 30 days after the surgery. If there are no changes then we will walk that road. I can't think anymore on that.
A dear friend reminded me of two things; both much needed changes in my perspective: 1) Though Bella is on the autism spectrum she is loving and snuggly and seeks me out whereas many children on the autism spectrum are much higher functioning in their daily lives than Bella but they don't love on their mommies like Bella loves on me. Oh thank you Jesus that you know me so well to know that I could not survive without her snuggles! 2) That even if we end up with hearing impairments that is most often fixable with hearing aids and the like…thankfully we are not facing something unfixable like blindness. Harsh, but true.
So while this may not be my most personality packed blog post it gets you up to date. Right now that is all I've got to give, everything else goes to Bella.
"He tends His flock like a shepherd: He gathers the lambs in His arms and carries them close to His heart; He gently leads those that have young." Isaiah 40:11 NIV

a.k.a. Warrior Mommy

Today I woke up able to see silver linings. The heavy weight has lessened and in it 's place is gratitude. Last night before bed I was reading a book about praying for your children….and it started talking about learning to release your children to God especially during difficult times when your mommy heart just wants to hold them tighter and protect them. The book kept encouraging me to pray Bella over to God and trust Him to protect her on our difficult journey. No matter the outcome. I did not want to. At all. Not ever. But I felt that soft nudging from Him to trust that He loves her even more than I do and that He does indeed have good plans for her. I told Him in no uncertain terms that I was not going to pray this because it would make me cry and I just could not bear to cry anymore. The soft nudge continued and soon I was praying, pleading, hoping and indeed releasing her over to Him. Trusting as faithfully as I could that it was all under control—not under my control freak OCD micro managed to hold the world together with duck tape control—but under His perfect, peaceful, always on time, always for the best control. The tears dried up and I felt the peace He had been so eagerly waiting to lavish upon our home come and with it came sleep.

So today I woke up to the bigger picture. She is perfectly where she is meant to be. Life will march on and we will be ok. Good things await us. His best awaits us. He will be glorified in her story. And today, be warned, Warrior Mommy is back. There are oodles of things that I am not good at but there is one thing that I KNOW I am good at. And that my friends is battling it out for Bella. Being her voice and her advocate. In the light of where we are and looking back at from where we have come from I know that I know that a strong component of why she is ours and why she is alive at all is because I advocate for her passionately and without apology. When it comes to Bella I rarely if ever doubt myself and I never EVER back down. Maybe that is why He choose me to be her mommy after all. Yesterday this seemed like a cross to bear…today I wear being the oh so blessed mommy of a special needs daughter truly as a badge of honor. While being a mother takes a very special heart and the will to lay yourself and your needs aside minute by minute being a special needs moms takes a fighter. A warrior. A survivior. a.k.a. Warrior Mommy.

Men have a battle stance. They hold firm and guard the door by force. Women….well, we fight in high heels. We can run, dance, tip toe and balance on something smaller than a dime and we will crawl over broken glass for a child we love; all the while looking beautiful and writing stellar thank you notes. We fight with beauty, not always with dignity and not always the way the world thinks that we should but we press forward when men lag back from exhaustion. We march on when everyone else walks away. We take the bullet and sew up the wound all in one step and we never, ever, ever give up.

My prayers today are songs of praise and gratitude that He saw in me the fight she needs. I am humbled and honored He felt me up for the task of being a special needs mommy. I am sincerely grateful for every single painful moment I have ever walked through because every single moment of my life was to make me strong enough, bull headed enough, confident enough, and prayerful enough to be a Warrior Mommy.
So I am sliding on my high heels, fluffing up my tutu and tying on my super hero cape……it's all up up and away from here!

“Paco, we’re not in Kansas anymore….”

I went to the doctor Tuesday. I have a raging ear infection in my left ear. Seems I recall having read somewhere that ear infections are your body's way of saying that you are not happy about something you are hearing. Appropriately enough the doctor said my ear looked very "angry". Ya think? I attended a parent education meeting at Bella's school today and as I sat in the front office I kept fighting back tears. I just don't want to be here. I don't want my precious daughter to be here. I don't want this journey. And I don't want to be strong anymore. Am I truly this vain? This selfish? This self absorbed? Good God I have to remind myself how thankful I am that she is so physically healthy.
I went back to the meeting full of moms. All moms of special needs kids. Surely I don't belong here??? But I do. A whole new definition to "I once was blind but now I see" exists for me. Suddenly I see it all. The delays, how far behind she is, how inappropriate her behavior can be. It's all there. It has been all along I just chose to push through and tried to believe it away. But we are here sliding down this strange and scary rabbit hole neither of us knows how to navigate.
I learned a lot in the meeting about resources that are there for our special needs children. It was uncanny to be in room full of moms whose every days looked like mine….you cannot go to the bathroom with the door closed because you have to listen the whole time, you cannot walk away from your child because they will choke themselves eating, going to the grocery store is exhausting, you never get to sit and do just one thing because part of you is always trying to prevent the land mines from exploding in your child's world and of course, never sleeping. How can that be all of our normals? How can I have convinced myself for the past two years that it was normal? But I did. And I think that is part of what has made it so much harder to accept. Our days have not been normal. I have just been really good at duck taping us together and insulating her. Maybe it was not fair to any of us to have it all come crashing down at one time but that is neither here nor there because we are here now. And now much like a bandage I've got to rip off all this leaky duck tape and rebuild our world. Now life is about pushing her more than insulating her, more about reaching out then putting on the smile, more about honest prayers than happy ones. If the Lord has been determined to break me of my need to be in control He has now succeeded. I have never felt more ill prepared or less like I have it all together than I do right now. And never have I felt like my knowing what to do has mattered more than it does now. This is her life. This is our life. I have to learn how to take care of her and take care of myself, my marriage--my whole world is caddywompus and I need to learn how to right the ship, keep sailing and navigate unchartered waters while cooking dinner, potty training, folding laundry, putting on makeup, etc all at the same time and I feel like I am already two years behind.
Today was a rough day…her world apparently felt caddywompus as well….lots of screaming, lots of frustration, lots of falling down for no reason. All I could do was hold her when she would let me. And pray.
The mom sitting next to me in the meeting today leaned over at one point and said to me, "Oh hun, you are in a whole new world now." Yup, Paco, we are not in Kansas anymore.

Special Needs

It has been 8 months since I posted or have written anything. Today I selfishly write for me alone. To clear my head and to silence all the nagging voices in it. I don't even know if I will publish this post. I just need to write. I need it all out there. I need to see it come together in tiny characters across a page that somehow paint a picture I can understand. That I can grasp. That I can somehow function within.

I don't know how to do this. To state the facts sounds like I am complaining about my precious daughter; like somehow I am disappointed. And it makes her sound like a little monster. But how can that be? She is the most precious, most adorable, most heaven sent little being I have ever seen. I cherish her. I ache for her. I don't know how to give her everything I have and more and to fight for her and advocate for her and survive day in and day out with her. And never sleep. And have anything left over to pour into my husband, my marriage. How to give anything to any other relationship??? It takes all I have to pound out a text message to a friend. How do I email? How do I lead my team at church? How do I mentor? How do I run a business? How do I breathe one day to the next? When do I shower? Will I ever care about what I look like again? I am exhausted. Not just tired from lack of sleep, exhausted from lack of rest. My mind never shuts off. The patience I summon to cope through one tough Bella day is more than I thought was in me. My spirit is tired. Too many midnight prayers begging the Lord to comfort her through a nightmare. Too many tears shed in the car when I am alone. Too many things left unsaid because I don't know who to say them to and am scared they will be real if I say them out loud.

The flip side is that I would die for her. She is what makes the sun come up. She is why I was created. Lord, how do I do this? How can I ever be enough? Am I ruining her? Did I break her? Have I been a bad steward of what you so graciously blessed me with? I am raw with emotions. My edges are in tatters. I am broken. Enter the next flip side…I can't be in tatters. I cannot be on edge. I can't lose it. I can't take a day off. She needs me. She needs me in a way neither of us can process, understand, cope with or explain to anyone else. In the really tough moments when she is hitting me and biting herself, when every attempt to communicate ends in screams and tears in those moments when I want to crumble she needs my strength. When I need to rest she needs me to be strong. When I don't believe in myself I have to believe in her. I am her voice. I am her touch stone. I am who pulls her though the dark. I am her mommy. And I don't know how to do this.

Most of you who know me and Bella must think someone else has hacked into my blog account. How could sweet little spoiled rotten Bella be the above? A few of you think I am just a lousy, selfish friend who no longer works at our relationship. Some of you have watched me and thought if I would just be more firm, if I would push harder, if if if….no one has told me more "if only I would, had, could, should" than myself. The first year when she was late to hit her developmental milestones we attributed it to spending at least a week every month of her first year in the hospital. She would catch up. When she was almost 2 and still not talking or walking we said when she was ready she would do it. By 2 she had weekly speech therapy and occupational therapy. I thought it was a waste of time. She would get there when she got there. At 3 they said she had to go to a special school and I balked. I bitterly went to the orientation and left sobbing because they called her "special needs". They had no idea she was my precious prayed for and prayed over and prayed up Bella Bean. Special? Yes. Special needs? Certainly not.

But somehow that term, that label that I abhor and was terrified of began to free me. Suddenly the tantrums and the aggression and the lack of sleep and the nightmares and the sensory issues, and on and on…had a reason - even if I did not like the reason. I hoped I would explain it all to myself by writing all this out. But I can't. This is experimental on the job training. It is like being thrown out of a plane with no parachute and hoping you can figure out how to fly all while trying to make sure your child does not hit the ground first.

So here we are. It is Monday and we have special needs. I am not longer going to feel guilty for doing what we have to do. I know my daughter. I know when it is a day that we can't leave home. I know when I can't be on the phone or the computer, when she needs me unconditionally for nothing more than holding her hand while she watches a princess movie. She has special needs so I have special needs. We met with the geneticist/developmental specialist Friday. Right now our diagnosis is Pervasive Developmental Disorder Not Otherwise Specified. The doctor is leaning towards a diagnosis of Sotos Syndrome and/or high functioning Aspergers or Autism. We will know more in a few months. We will be adding additional therapists to our days and Bella will continue at her school 3 hours each morning.

God is constant in His mercy. And He adores Bella. He is holding her. And He is holding me. He alone knows what our special needs truly are and He is faithful to meet each one.

A Mommy’s Heart

Today my heart is full of mommy joy….these are words I wrote sometime back to try to explain the wonder of her arrival in our lives, to somehow quantify how beautifully God had fulfilled every desire of my heart….playing with her today only further reminds me how He longs to do the same for each of us.

You are right, there are things that I traded in adoption. But nothing that I was cheated on.

No, I never felt the excitement of telling Jon I was pregnant. Instead I felt the delight of telling him about the baby that we could love.

No, I did not know the exact due date to have my child's nursery ready by. But I did get to decorate and prepare her room with all the joy and enthusiasm of any expectant mother.

No, I did not have a baby shower before my baby was born. I had it when she was two months old and it was all the sweeter.

No, I never felt her stir in my womb. Instead I felt the flutter of my heart when I first laid eyes on her in that hospital crib.

No, I did not go to the hospital with a specially packed bag to check in to Labor & delivery. I went to the hospital with a special bag packed to bring home my baby.

No, I did not stare at her through a nursery window; instead I stared at her in a rocking chair the first time I held her.

No, I did not feel the anxiety and pain of labor. I felt the anxiety and pain of biological visits and a six-hour mediation as I pushed to make her mine.

No, we did not have visitors in the hospital to smile and dote over her the day she was born, but we had a courtroom full of friends to smile and dote over her the day we adopted her.

No, I did not get to send out birth announcements; I got to send out adoption announcements.

No, I never conceived my daughter in my womb, I conceived her in my heart.

Interchangeable Parts

Sitting in the UT Southwestern surgery waiting room I am once again find myself in awe of God. I am honored to be sitting with my family of choice as two friends simultaneously undergo surgery in order for one friend to give the other a kidney.

As we all sit together making small talk the conversation keeps gravitating back to how amazing it is that this type of transaction is even possible. A few hours in the operating room and part of one man becomes part of another forever. There is much to marvel at in this story. Watching both their wives in the waiting room I realize why this swap is even happening. Because these two men, these two wives, these two families walk the talk. They talk big about being family of choice, about being the arms and hands of God extended, about living a life of excellence and honor. And they are doing it, big. They both speak of serving a limitless God and with their heroic actions they are proving His faithfulness. We all clapped when the first surgeon came out to tell us the donor's surgery was complete and successful. The nurse seated down the hall said she knew without seeing that it was our group that had applauded. I smiled knowing we had left a stamp of Jesus…..not just because we were excited that the surgeries were going well but we were all so genuinely joyous about what was taking place.

Beyond the love within this exchange is the sheer logistics of it. I mean really? One doctor cuts a hole big enough for his hand to reach through and plucks out a kidney…then in a nearby O.R. the recipient is waiting and bada bing bada boom in pops his new kidney! Of course there is more to it than that, months of testing and preparation, mountains of medicine, hours of prayer. But I find it fascinating that God made us for this sort of thing. That when He created us it was with this ability to bada boom bada bing various body parts to one another. The bible says we are to be like Christ. In Christ we have life, both physically and spiritually and here are these two men who are truly giving life to another, both physically and spiritually.

How miraculous is it that we have the gift of interchangeable parts? That at a set time and place, under the necessary circumstances one person can save another. That two men can give each other hope on a whole new level. That lives can be transformed. Makes one want to ask is anything truly "ours"? Are we too possessive? Do we think we own/change/have anything? Or are we simply here to share our interchangeable parts? So of course that begs the question—what do you have to share? Maybe your faith has not demanded that you give up a kidney….but perhaps you can share your story? A phone call, a word of encouragement, a meal….it is easy for us to look at the kidney as such a BIG gift but I think in God's eyes there is no big or small no fast or slow….a gift is a gift.

So walk your talk. Find what you have to give that was never truly yours but was all the while intended to be for someone else anyway…..just like Jesus came and gave His life, which was never His own, for you. It was always for you. Go be who you are to be for someone else. Give what is the only thing we truly have of our own to give: love.

Just do it

I've always thought when God spoke the mountains moved. I know now that when I listen, believe, embrace, and act upon what He speaks He helps me to move mountains. I think we all know at some point what we are called to do with our lives. Sometimes we don't like it or more often than not we love it but are scared because it seems so much bigger than what we are capable of. And it is. It's supposed to be bigger than us. It would not be a calling, a dream or a life purpose if we could do it on our own. God sized dreams require God. Period.

Now, I've been pretty good about doing lots of good things. Praying, serving, leading…and I've been sort of good at looking like I was working on my calling. I have written a few published articles and I started this blog. Good right? God sized? Hardly.

So here is the straight and the narrow of it, if we know what we are called to do and we don't do it we are being disobedient. Ouch. And no matter how much "close to our calling" good stuff we are doing we are still disobedient. Double ouch. So, this awakening of knowing the difference is revelation, and to have something revealed means we can't go back to not knowing what we now know. We must consciously choose to say ,"ok, Jesus I know you went to the cross for me and all but I am going to stick my head back in the sand and act like you did not make this known to me" or we can say, "ok, Jesus I know you went to the cross for me and all so therefore I've got to believe you can take my actions and the dreams you have laid in my heart and make them happen if I trust in You".

Here is the kicker, Monday God made it clear my lack of faith in His ability to do what seems impossible to me + my pride in thinking somehow I had to do it all on my own = every disconnect I have been feeling. Enter new equation, My big God + My big faith = My big God ordained dream coming to pass in His way, His time and His glory. So Tuesday I acted like a big girl with a big God and made a phone call I was scared to make. And guess what? God leveled the very mountain I was afraid to climb and opened a big door for my dream to flow through. Thursday He opened another one.

I felt stupid when I was dialing the phone. Heck half the time I feel stupid when I write these blog posts. And every time there are voices that say not to do it, that people will laugh, that I'm not qualified, that who am I to think I have something to say? The door that opened Thursday was from me writing my infertility testimony and submitting it. What did both of these mountain leveling, door opening moments have in common? Action. Action taken in faith to face possible rejection and faith that God's ability was bigger than my inability. But if I had just thought about doing these things or just listed them in my journal as things I should do or even just kept praying about whether or not I should do them zero point zero action would have been taken and no doors would have opened.

So in a nutshell, I challenge us both to less lip flapping and more action taking. As Nike would say, just do it!