I am not the person I want to be

I am not the person I want to be.

I am not the mom I want to be.

I am not the wife I want to be.

I am not the daughter, sister, friend, neighbor, church member...I want to be.

On all sides, in every faucet of life, I feel I am failing.

I am letting everyone down. All the time.

I want to join the Bible study group and be the co-op teacher.

I want to drive to my new mom friend’s house and make her dinner and clean her kitchen.

I want to share stories over coffee as our kids play and walk rivers and trails together.

I want to fly home for Christmas or summer.

I am the flaky friend who can never commit.

I am the daughter who hasn’t been home in 3 years.

I am the sister who cannot go on sibling trips.

I am the sometimes-church goer who sits in the back corner.

I forget the birthdays and anniversaries.

I am not who I want to be.

This is the side of medical parenting no one warns you about.

I knew when we said yes, there would be a cost. Time. Energy. Space taken by equipment. A loss of freedom. A newly filled calendar. Advocacy and fight with the “system.” I expected that. I did not expect a loss of myself or waking up everyday feeling like I am letting everyone in the world down.

I long to be dependable, the friend that is always in your corner. I want to be committed – a volunteer at church, start a Bible study, work the co-op, start something meaningful.

We skipped out on another group event. This time there was no surprise, but it doesn’t make me feel better. We were quarantining for the weeks leading up to my daugther’s big hip surgery. It was a long awaited surgery, and if she was to get sick, it might have to be canceled until next spring, so we avoided large crowds. I knew it was best, but I also crave community, and I know my older kids did too.

I laid awake that night hoping and praying this season of waiting and preparing would be over so we could get back to living. I prayed for a time I could show up for others, a time I would be dependable again, a time where I felt my moments had purpose and meaning.

 
The next morning our lives went from waiting to survival mode in a second.

Gracelyn woke up early and I got myself up to start her cares. I suctioned her mouth and nose and noticed small twitches along her lips and cheeks. Immediately I called to Jason and told him to start recording, as I also looked at the time.

In a second, everything changed. Gone was the normal, scheduled day of therapy and homeschool. The lights flicked on. The pulse ox on. The rescue meds pulled out. Within minutes she was having a full seizure. My mind kept track of time, minutes counted. Pulse ox numbers tracked.

And then the next pull from normal: rescue meds given and a call to 911. This was my fourth call to EMS this year. I felt myself fall into this new track, like routine, yet more intensely focused. Like finals week of your senior year – it’s not like a normal week, it's intense but you have your rhythm, your method, your routines to get through.

I gave the information over the call and waited for the team to arrive. Jason kept track of her sats. With the phone still to my ear, I grabbed my go bag, changed, packed her necessary things, and tidied a bit for the EMS team to make it through.

 
The team arrived after 10 minutes, which felt like a lifetime, but I knew now that it was a good time.
She stopped seizing after 5 minutes and we discussed our options: go to the children’s ER or stay home and follow up with neuro by phone. Everything in me wanted to stay home, to tell them to leave, to believe we still had a chance at a normal day...but the little muscle in her neck never stopped twitching, and her eyes looked a little off still. And I almost relented, but the Holy Spirit was screaming in my chest - Go. Go now.

We packed and loaded her in the ambulance. I still prayed I was overreacting, that the doctors would think I was silly for even thinking we needed to ride in. That it was a lot of fuss for nothing big and we’d be n the couch relaxing in a couple of hours.

Within 5 minutes she started seizing again. I whispered thanks to God for making it known we needed more help. 1 round of Ativan. Lights and siren turned on. Another round of Ativan. Almost there, tires screeching. A third round of Atavan as we pulled into the hospital. Still she seized.

I carried my bags, followed her on the stretcher into the trauma room, as a crowd of staff surrounded her. I set my bags on the chair, rolled up my sleeves, and looked for the attending in the sea of people.

I gave him every time tracked, every oxygen stat, every heart rate along the way, every med and amount given. I gave a thorough, yet concise medical history, all while keeping my eyes on my girl and her monitor.

The attending offered a chair in the corner for me. I said I preferred to stand. I stood next to him, a little behind him, watching every movement like a hawk. I was not new. This was not my first rodeo. I had a running list of everything to watch for, everything they watch for per procedure AND everything I watch for because she’s Gracelyn.

I watched and waited. Then I jumped in between nurses and vented her tube into a diaper because I knew gas was building in her stomach. I reached over nurses hands to hold her normally bent arm straight so they could see a vein. I was in there, hands quick and focused, in and over, between and around other hands. At first I was given judging looks, then nurses moved over as I worked without speaking and assisted in their work without needing instruction – handing tape over to the IV, placing gauze under her IV line, suctioning her nose…

I watched as they poked my baby again and again, desperately trying to get an IV. I watched as they tilted her head back and placed a mask to keep her lungs saturated with oxygen. I watched as they scrambled to stop her seizure. I watched without flinching. And I ran through my list without skipping a beat.

During and after her first hospitalization, I had so many regrets. So many moments where I didn’t stand up, I didn’t fight for her, I didn’t support or advocate for her. I just let the “experts” do their work. For the most part, she was okay. But I was not. Never again. I would always speak up for her.

So I committed myself to a simple rule: You can’t speak up through tears.

Of course you can, in general, but not in the trauma room. If I lose it, if I cry, if I melt into a puddle and am distraught because my daughter may very well be dying, I will not be able to help her best. If I get kicked out because I am emotional, she has no one in that room to help her best. So I stand with my arms crossed, watching everything, unflinching, knowing she needs me.

I stood in that trauma room, right next to the attending, and fought for her best care; and at the end of it all, when the IV was started and the meds were given, and the orders called in – when I was all alone in that room with my girl on the bed sleeping quietly – I was proud.

I was grateful. I was relieved.

I was dependable. She could depend on me in her worse, most terrifying moments, she could trust in and count on me.

I am not the person I wanted to be.

But here’s the thing: I am exactly who I was meant to be.

And the truth is, I would much rather be the flaky friend or the daughter who can’t visit or the misunderstood sometimes-church goer, if it means my daughter has the best care, that she is kept alive. If it means that in her constant flight or fight survival mode, trapped in her body that does not want to cooperate, in her limited vision and limited movement, she knows I will always be there to come to her rescue, to fight for her, to advocate for her, to comfort and care for her, to bring her on adventures and mischief, to show her the world, to love her as deep as the ocean – then it is worth all the misunderstandings, the days of feeling left out or passed by; it is worth all the moments of loneliness and doubt.

 
I am not the person I wanted to be but praise God He makes me the person He called me to be, the person I need to be, the person she needed to have on her side. This makes every moment, every breath soaking in meaning and purpose. I'm still a flaky friend, and I'll never measure up to the world's standards of best daughter, friend, sister...whatever. But if this is the price of medically complex mothering/caregiving, I am all to glad to pay. 

This is who I was made to be.

Christmas: Christ With Us

The trees outside are twinkling with white lights. Wreaths and garland is hung in the hall. Colorful ornaments and stockings are lovingly displayed. Christmas carols are playing gently. All stirring nostalgia: Christmas is in the air. 

My festive coffee cup is warming my hand as I walk briskly down the hall. I shift my weight and my bag, and push the door open.

"Hello sweet girl. I'm back!" I sing quietly, and scan the screen and it's green, blue, and white light. Carols give way to the sound of monitors beeping and the feeding pump running. 

Putting my bag and coffee down, I wash my hands and lean over the crib rail. 

My sweet girl. My baby. My littlest love. 15 months old and the strongest, bravest person I know.

I run my fingers through her growing red hair, hold her hold, and give her lots of kisses. She 'tells me all about it' with her little chatter and whimpers. Always ready to give me a report of the happenings while I was gone. 

This is not where I imagined we'd be tonight. Not where I wanted to be at all any night. Yet here we are. 

Ninth floor of the children's hospital. We've returned after only 3 days of being home from our last admission.

This feels vaguely familiar - this isn't the first Christmas season we've spent celebrating through trial. Last year, her first Christmas day ever, we spent inside hospital walls too. I was so hoping for a more normal Christmas this time around.

This is not the festive, cozy celebration I had planned and yet I am content to know this is exactly where God has placed us. 

If anything, these last months of medical mama life have taught me what truly is important. And it's not the decorating or the traditions. 

Christmas is not in the perfectly decorated tree or the stockings hung with care. It's not in the ornaments or the wreaths. It's not the advent calendar or candles, or the matching Christmas is not the rosy cheeks of well-behaved and joyful cheer of children. 

Because Jesus died and rose again, Christmas is not just one day. Christmas is us in Christ. It is Christ with us and in us. Already here, and not yet. 

Christmas is everyday. Christ with us. Our Savior come to earth for us. We can and should celebrate everyday, not just one day every year. 

Our hope, our peace and fulfillment is not in the picture perfect experiences of Christmas season, or even the messy traditions. 

When Christmas day is less than pretty or when it's just plain painful and when we know our hope and peace is in Heaven, when our eyes are fixed on a Jesus and our hearts cry out for eternity - those unmet expectations and plans gone awry won't diminish our joy, they can't steal our peace for we know this is not the end of the story or even a determining factor. 

With our faith held fast on Jesus, we can face any trial, struggle, tragedy on any day. If even the most unimaginable happens, the darkest, greatest loss we face, He is still good, and we will still celebrate knowing our hope is in Him alone.

We'll thank the Lord for hope, for peace, for His loving faithfulness, and power to heal. We'll thank Him for the honor and privilege to bear witness to this beautiful, brave life. We'll rejoice in our care for her and her strength that does not quit. And we will celebrate Christmas, today in the midst of trial, and every day in our hearts. 

Immanuel, Christ with us, is what our hearts will echo and breathe relief. Our weary souls rejoice. 

Hopefully, we will be home before Christmas Day, but if not, we know we can worship and celebrate anywhere with any thing we face in the moment. 

Not My First Miracle

Foster Care Awareness Month

(Sort of foster care, medical mama, or just person awareness)

This is not the first time I was told a child of mine would "never do anything."

Look, I get that part of a social worker's "due diligence" is to give you all the worst case scenarios so you cannot come back and say "You never told me!" Or "This is not what I signed up for!" But can we stop speaking so bleakly about children that families completely give up hope and back out? Can we offer hope and resources and a list of services and groups and support so foster parents feel equipped and empowered and prepared and supported when they say Yes?!?!

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I sat on our living room floor as Bear napped and Arianna colored. A friend had called about a little boy who needed permanency and it was an ICWA (Indian Child Welfare Act) case so permanency might be hard to find. I spoke briefly with his worker who informed me of the newest medical information. Medical information that caused the family ready to bring him home for adoption to back out. 

Possible brain stem damage - a conclusion they made based on his history and sleep apnea. 

"He may not walk or talk, he may never do anything. So I understand if this is too much for you."

I understand she did not know the right words to use but those we definitely the wrongest words she could have chosen! 

God opened the door, and we said Yes until He closed it, which He didn't. 

We met this little boy with "possible brain stem damage" with his foster parents in Fargo during some appointments. I went with his foster mom. Doctors spoke of sleep study results and surgery needed to remove his adenoids. Hopefully this would help. 

Now, I am there with only the information that his social worker told me. And I'm sure his foster mama could have told me so much more, and she did throughout the day. But I always wonder, did we have the same information? Was I told accurate information? Did she know what the social worker told me? Maybe one day I will sit down with Mechelle and ask her these questions. 

He was tiny and he had no affect, no facial expressions. His eyes looked glazed over. He was clumsy and had hardly any head control. He took a few steps here and there. 

Doors kept opening and we kept walking step by step through them. 

February 4, 2017, we brought this little boy home forever. 

Within two months, he was a completely different kid. Doctors looked at his chart and him and asked me, "This is the same kid, right?" The change can only be described as a miracle. He no longer had sleep apnea. No longer needed surgery. And had a zillion facial expressions. So much energy!!! 

That little boy did all the things, and more, that the doctors claimed he would not do. He walked and then did a cartwheel at 2 years old! Now he rides his bike, runs, skips, karate kicks; he talked - now he talks nonstop; he's reading and swimming and All. The. Things. It took a lot of work and dedication. But also just allowing him to do what he's going to do in his time. 

Jase taught me, and continues to teach me, that everyone is created differently with purpose. He is fearless and unashamed. It makes it difficult to get a true apology out of him (ha!) but I firmly believe God will call him up one day for an amazing task that others will shy away from. Jase will boldly say, "Yeah, I'll do it." And not care one bit what others think of him, because he never has. 

So when I hear bleak news from a doctor, I want to say, "And so..." Or, "But, God..." 

I don't completely dismiss what they are saying but...these are moments just ripe with possibility of God working a miracle. I want to tell them that no one should be reduced to a number or a test result. And to never underestimate God's power, faithfulness, and provision. 

Jase isn't the only reason I know this. I know this because it was me.

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The neurologist looked over her papers, and gazed at me gravely. "Her Apgar scores were 0 and 2," with a pause, expecting me to gasp or be upset. 

I smiled just a bit and said, "Yes, and...?" Then I explained, "I was born by emergency Cesarean with an Apgar of 2. Apgar scores don't scare me."

I am a living, breathing miracle. I should not be alive. I was born blue and survived a possible SIDS episode at 3 months old, had a hole in my heart, and an asthma attack when I was 10 that landed me in the hospital. And I probably should have died when I totaled my car when I was 16. 

I didn't think much about all those miracles but now I am beginning to see how God has woven our lives together.

My experience with low Apgars made me less afraid to bring home this baby. My experience with respiratory issues and lots of clinics/hospitals gave me necessary knowledge to save her life in December when she had acute respiratory failure and made me unafraid of advocating for her in a room of a dozen medical professionals. I've seen miracles so I am ready step out in faith believing miracles will happen again. 

I don't have it all together.

I definitely don't know what I'm doing half the time. But what I do know is God is showing up in incredible ways in this little girl's life. God does not use the strongest, fastest, biggest, best. God loves to use the misfit, weakest, the outsider, the cast aside, the broken body, the overlooked, the "never do anything" people. 

Watching the biggest, best overcome does not prove His power or gain Him glory. But seeing the weakest, broken, or least conquer the impossible by His power gives Him all the glory. 

Her weakness will be her strength - time and time again God will faithfully prove His power and provisions (2 Cor. 12;9). We know He is able to do immeasureably more than we can ask or imagine (Eph. 3:20) and He works all things together (yes, even this) for the GOOD of those who love Him and have been called according to His purposes (Rom. 8:28) - so I am fully expecting to see God moving in amazing ways. 

This journey together will not be easy. We will be broken and overwhelmed and terrified. I definitely do not feel prepared or equipped. I often stand next to her crib in the middle of the night, while getting meds ready or a feeding, and wonder if God made a mistake -- did He really want ME to be her mom? Is He sure I can do this? Then again I am reminded that it is not about me or my abilities, but His power through me. I'm scared. This is not what I expected when we began our adoption journey in North Carolina. But how much more incredible, beautiful, amazing, surprising, miraculous than I could have imagined!!

She is worth everything. She may be function differently, but she is a person, with a soul that will live eternally, lovingly created by God. 

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We need to do better. We need to speak first about positive possibilities. We need to tell parents there is hope, even if it is whispers. We need to celebrate life even when, especially when it looks a little different than we were expecting. God is not surprised. We need to stop saying a child will "never do anything." I firmly believe that some of my girl's doctors have never seen a child with her diagnosis outside of the hospital. They have never seen them learning, playing, growing, joyful, and living life to the fullest. We can do better. 

"Why?"

On this medical journey, we have already seen more doctors and nurses than I can count. Inevitably, they will ask for medical history and click through the medical records as I tell, for the hundred something time, her birth story and where our stories met.

There is also a moment after I list her medical issues and share that I am not bio mom, but foster and soon-to-be adoptive mom, they look up from behind their screen in surprise and look me up and down. 

Every doctor. 

Some cannot help but ask if I knew all this before we knew her, in disbelief. Surely no one would willingly take this on. 

And I will explain that we had her diagnosis early and the prognosis was very grim, and she is exceeding all expectations and thriving. And yes, we did know most of it, at least possibilities.

Then, at the end, they will thank me. Unable to look me in the eye, they will stare at their screen or their hands, and thank me for taking on "...this uh, special case..." Or something like that.

I want to hide...or vomit. Or just cry.

What the surprise in their eyes and voices really wants to ask is "Why?" 

Why in the world did you choose this? A lifetime of medical needs and appointments, of equipment and adjustment, of different, uncomfortable, and difficult. 

Why?

At first, I could barely hold myself together - and I pride myself on putting aside emotion in medical conversations to get to the issues at hand (Years of childhood illness and infertility with appointments and procedures have cultivated some unexpected skills.) 

I was a mess, because it was overwhelming and because I knew that these doctors didn't: all the God moments that brought us together and showed His powerful faithfulness over and over again. And that was the most overwhelming aspect of our story: His undeniable faithfulness.

I was not a mess because of her diagnosis. I was a mess because of how much He loves her and fought for her. How can I explain that in 2 minutes at a doctor's office without falling apart?

What I wish I could say to them all is this:

Our girl is a miracle through and through. We did not make her a miracle through our choice or our wanting of her. She is a miracle because God made her. We did not give her value because we chose her. She has inherit value because she is a person. In His image. She is an image bearer. Just like anyone else. 

Yes, we made a choice. 

For most parents of children with HIE or CP, it comes through traumatic birth experiences and they are already grieving the loss of that perfect birth experience and now also the loss of all they expected parenthood to be. They did not choose it. 

We made a choice early on in our adoption and foster care journey. We would say "Yes" until God closed the door. With open hands we received every case file, every phone call, and email. Most often, God closed the door through some logistical impossibility; a child in a wheelchair needing an accessible home and vehicle, which we did not have; a child several states away. Sometimes He closed the door by way of another family being chosen first. 

Our choice, our decision, really was: God, we do not want to choose. You choose for us. You make the way. You create our family. You know what child needs a family, may we be thst family for them. (What we wanted to avoid was a situation where we might have to choose between two children - an impossible choice - and thankfully God has been gracious and faithful to us and it has never happened.)

But how is our "choice" different than most other parents of medically complex children, or non-medical children? We said, "Make this family." And He did - the means by which He worked look a little different than most, but all still in His hands. 

If one of my adopted children, or a bio child, was diagnosed with cancer or debilitating disease or a brain injury...I wouldn't just say no and walk away! That is my child! Life would be different than we had expected and we would make necessary changes, fight and advocate, do whatever we needed to...this is no different. 

Imagine if a child received a diagnosis of a brain injury after a car accident. And the doctor comes in to inform the family. At the end, he asks, "Do you still want your child?" 

1) What horrible doctor would say that?

2) That's basically the question being asked to me at every appointment. "You still wanted this child?"

But would you? Would you stay by your child's side? Would you walk away? 

OF COURSE NOT!

Would you be scared? Worried? Unsure of the next steps? Worried how you will do it all? Wondering about what life will look like for your family next month or 10 years from now? Wondering if and how you will make medical decisions about for your child?  Would you be overwhelmed, terrified, feeling unqualified and alone? 

Absolutely. 

But it's your child. And you would never walk away. 

When we got the call and spoke to the doctors about this little newborn baby alone in the NICU, we spent about a week praying and researching. I called the doctors a couple more times with questions. 

We were waiting. Really, God made the decision the day of the call. We knew, unless God closed a door, this was our baby waiting for us. But, not wanting to rush in only to realize this was not a possibility, as we have learned through experience not to do, we waited a few days for God to close a door or confirm. 

Praise the Lord, He never moved that door an inch! I cannot imagine life now without this sweet, beautiful, stubborn, sassy, determined, brave baby. 

She is our child. 

We just didn't know about her until she was 2 months old. 

We said Yes to her long ago.

And she is finally here!

I only wish I could show you her amazing progress and sweet personality along the way. One day soon though, I can show you everything. 

Update on all the things

Easter came and went, and because the days fly by so fast now, my mind has not gotten the message to move on. I am still mulling over Resurrection Day. And I honestly hope I never stop. Resurrection Day is not just for one day. It should be every day that we fall to our knees in awe and humility over what Jesus has done for us. The hope and promise that the Resurrection offers us -- overcoming, conquering, victorious new life. 

There are no words to express how thoroughly grateful I am that Jesus lives. That Jesus lived - a perfect human life to sacrifice in our place, and that Jesus lives again forever. Not only that, but because of Jesus' work on the cross and his resurrection and ascension, we have the Holy Spirit!! When I sit and meditate upon all this, I can only stop and worship. How incredible and faithful is our God. And how grateful I am, especially in this new season.

I could not do anything successfully without the Holy Spirit these days, or any day. 

Baby Grace is doing amazing. She has made so much progress even within the last week. I swear she is a new baby. Simple things are making all the difference for her. She is honestly the sweetest, cutest, most beautiful, best baby. She is getting so long. She has 2 teeth coming in. She is reaching and grabbing at toys, and moving her head all over the place. 

Here is a rundown of what has been happening lately. 

PHYSICAL THERAPY

We got a new physical therapist who is incredible. She is really pushing Baby so much in the bed ways. Really challenging her and Baby Grace is only rising to each challenge and surprising Miss Melissa every session. She is rolling from belly to back on both sides and working on sitting unassisted!

We did get some news about her eyes. It was not surprising but also not want we were hoping. 

EYES

Her pediatric ophthalmologist confirmed that Baby Grace has Cortical Vision Impairment (CVI). She is legally blind, not completely or totally blind. Obviously, it is not what we were hoping for our baby girl. On top of everything else, we were hoping for some more healing in this area. But also, we were well aware of this strong possibility. It is very common that those with HIE also have CVI, because of the lack of oxygenated blood flow to the brain. In her case, her optic nerves have some portions of atrophy (death) due to her brain trauma. 

There is so much hope though! Because of this early diagnosis, she is eligible for vision therapy and special services. There is possibility for some improvement, as far as neuroplasticity, not for eye anatomy. And I know there is so much help and support for those with CVI.

FEEDING THERAPY

I was finally able to speak with a feeding therapist. The trouble is Baby Grace will not be accepted into feeding therapy because she shows no interest in eating by mouth. But how will she begin to learn to be interested without specific oral therapy??? It is so backwards and frustrating. She needs it more than most and will not get it because her "deficits" are greater. So I did talk to the sweetest feeding therapist and she has basically volunteered to check in with us once a month, on her own time, to help with tips and ideas. It is so wonderful to have other people willing to help and support our sweet girl, and not treat her like she is incapable of learning or growing.

The feeding therapist immediately looked at Baby Grace and said she has a lip tie that needs to be clipped. No one had mentioned this before! I understand that they were more focused on lifesaving measures, seizure control, and physical ability but I could have had this simple procedure done months ago and maybe her mouth control could have got a better start. 

LIP TIE

We found a pediatric dentist that 1) takes Medicaid and 2) clips lip ties on babies. I figured with those two qualifications we would be on a waitlist for months. But we were able to get in that week. 

If you know me, you know I cannot handle the dentist or teeth in general. Some bad or even traumatic experiences have lead me to be very skeptical of every dentist we see. I did not have high hopes but at least she could have this procedure. 

I cannot tell you what a relief, a blessing, an answer to prayer this dentist is. He was so sweet and kind to our girl. He did not speak about "keeping her comfortable" or "she may always..." He spoke of her future, her abilities, helping her to do more and do what she is doing better. 

He confirmed she needs a lip tie cut. Her tongue does not have a tie, but it is pretty immobile which has been due to poor posture. So he showed me some positions and exercises that will help her with her posture, tongue position, and her breathing. In addition to cutting the lip tie, he will do a laser treatment in the inside of her mouth and cheeks. This will hopefully activate her muscles and nerves. 

As we were talking I asked about the laser treatment -- if it is red light therapy. And this is where we both surprised each other. He was surprised and excited that I knew about red light therapy and encouraged us to start. I was equally surprised that he was a dentist and knew all about these things too. He surprised me again by recommending a few local chiropractors as well. What an amazing, unexpected answer to prayer!

I am actually looking forward to our appointment again with her new dentist and I will be moving the other kids to his office as well!

EARS

A few months ago, we took Grace for a hearing test but they were unable to get an accurate reading because she was too awake. But they did notice that she had fluid behind her ear drums. ENT confirmed this and was set to schedule surgery. However, this ENT office was an hour away so we got a referral for a local office. Well, they never got around to scheduling surgery. We have waited for 3 months. So I called the original ENT and was pleasantly surprised to get a call back with a surgery date in a couple of weeks! In early May, Baby Grace will go in to get tubes put in her ears and while she is sedated they will perform a new hearing test. 

FORMULA

I have been chronically our frustrations with formula on instagram. There have been several issues that have complicated her ability to get formula, aside from the general complications of medical supply companies and a gtube. 

Because Baby Grace has a gtube, her formula is delivered to us each month from the medical supply company (DME). Or it should be...Also, because we get this shipped, she is not eligible for WIC. We received her first month's shipment in November. And ever since, her particular formula has been on backorder with the company. We have had some amazing friends and angel strangers who have collected her formula for us. We do get a stipend through foster care for her expenses, but since it is supposed to be covered by insurance, we should be able to use the stiped, not on formula, but services and equipment. 

So, we were waiting for her formula to be in stock again, and then the Similac Recall hit. 

Not only was there no formula, but what there might have been was being tossed and taken off of shelves in record time. Her formula was scarce enough already. It was nearly impossible to find. For the last 3 months we have been scrambling to find her formula. We have had some amazing people gather up what they had in their neighborhood or from their friends for us! More incredible blessings.

I contacted the dietician to see about a comparable formula that would be in stock. 

Then I called the DME's warehouse to make sure this particular brand was in stock with them.

Then I had to call the pediatrician to write a new script for this formula and amount, and sent it to the DME. 

This, with the voicemails and waiting for calls back and hold times...took about a week to get done.

Lord willing, we will finally get a month's shipment IF this formula is still in stock in the warehouse. IF NOT, I'll have to go through this whole process again. 

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Thank you so much for praying for our sweet girl and our family. Please continue to pray for healing, redemption, new connection, and new life within her little body. Pray for wise, kind, and discerning doctors. Pray for the right therapy and the therapists; that they would see her and support her, that they would be blessed for working with this amazing miracle baby. 

Please also pray for her adoption to progress quickly and without hindrance or hiccup. Pray for the social workers to get their paperwork done quickly and correctly. Please pray for the judge to see that she is ready for permanency and adoption. Please pray for the judge to have an overwhelming desire to move mountains for this little girl. Pray that we have supernatural energy and wisdom to advocate and care for this miracle baby! In Jesus' name. 

New Day, New Diagnosis

Well, we didn't get the news we were hoping for. We did get news we expected. 

Cortical Vision Impairment.

Not completely blind.

Legally blind.

We had been preparing our hearts as much as we could for this possibility. But no amount of preparing could stop the breath leaving my body as he so flippantly, matter-of-fact uttered those words about my girl sound asleep in my arms, as if he was simply telling me her beautiful, big eyes are blue.

He saw her for 2 minutes. He didn't see her follow me around the room, focus on her dad, stare at her siblings, watch the leaves dancing in the trees, cloud floating in the sky, watch cartoons with her brothers. He doesn't know where she was and how far she's come. And he doesn't know what amazing plans the Father has for her. 

I am learning as a medical mama sometimes you have to get a diagnosis, and let it wash over you, and move on. One doctor's opinion. Medical coding for insurance. Defeat spoken over her by doctors already hasn't stopped her and they won't stop her now. 

On the bright side, she is now eligible for other services and therapies.

We are choosing to view this as an opportunity for access to further services and an opportunity for MIRACLES. We have no control over this, there is nothing we can do, really, to heal this. But we know the Good, Good Father who can. We are leaning into Him hard. And we believe He will continue to provide us with everything we need as we walk this journey with her. 

Realistically, nothing has changed for our girl. She's rolling and moving, looking and listening. She is growing and learning and making new brain connections like a champ. 

We also know there are so many services, therapies, and tools to help those with CVI, especially when started so young. 

Cortical Vision Impairment is not going to stop this brave girl. 

But still...please pray for miracles for her eyes and vision, for brain function that interprets vision.

For God's glory alone.

Heaven

Heaven has never felt so close. 

In the quiet of the night when it is my shift to keep watch, listen to her soft breathing, ready at any moment to jump to her assistance, the tears come softly. And for a moment, a small moment, I grieve for the life she could have had. Not in the way of pity, but in a realistic holy anger that sin and brokenness have so early affected her little life. A perfect, full term baby just waiting to meet the light...This is a fallen, broken, tragic world and I have never been more deeply aware. Lives can be changed, stolen, shattered in a moment, any given moment.

I long for Heaven with no tears and no pain and new bodies.

I ache for Heaven with no exhaustion.

I plead for Heaven with no need for doctors and hospitals, medical supplies and medication.

I am desperate for Heaven, to be released from this evil, war-torn, broken world.

And when I feel the deepest longing, I am at the end of myself and abilities, Heaven feels so very close. 

The space between feels thin, vapor-like. And those quiet moments of mourning turn into holy moments of worship near heavenly realms.

Heaven feels so very close because my focus and perspective has changed.

Verses memorized long ago come to mind, hymns flow from my lips. Holy Spirit strength and endurance keeps me rocking, hugging, holding -- giving feeds and changing midnight diapers. And somehow the weight of this world, the exhaustion of being a caregiver, the worry of the future disappears and is replaced with joy, peace, and gratitude. I am reminded through these hymns and verses of God's faithfulness, of my ultimate purpose - the purpose of any believer: to lay our lives down at His feet - "Lord, send me." "Lord, your will be done" "Lord, may You increase, as I decrease." 

We tend to think of sacrifice and sanctification as huge, magnificent events. But sacrifice for Jesus, for His Kingdom, can look like changing diapers in the middle of the night, like calling the medical companies for the millionth time, like changing your life around for the least of these. Sanctification comes when we do these over and over, more and more willingly and eagerly, growing more and more like Him. 

Yes, she is my daughter. Yes, I would do it for any of my children. In a moment, the blink of an eye, tragedy can strike and one of my children could need 24-hour care. It can happen anytime, to anyone. But that does not change the fact that this is hard, this is way beyond my abilities, this is not at all what I expected this year to be. But God called us to this. Without a doubt, God brought our stories together so she would have fighters and advocates and [home], and we would have the missing piece to our family. 

I have been a born-again believer for 27 years -- since 9 years old at Bible camp over one summer. Actively pursuing Jesus, running the race, waiting for Jesus' return or for eternal life after earthly death -- for decades. Not perfectly by any means, but focused and making steps. For nearly 30 years, through depression and anxiety, identity crisis, infertility, several adoptions and adoptions lost; been brought to my knees more times than I can count...and now, through this journey with her, I feel like my eyes have been opened. 

Fully aware of the brokenness of this world, the darkness encroaching, the importance of a single tiny soul, my purpose, the spiritual battle raging all around us. The veil has been lifted in so many ways as the things we have thought important, we realize were just preference. The things we thought were guaranteed were just expectations, and the expectations we have tossed out completely. This little girl has blown our world wide open in all the best ways.

Heaven feels close because my heart is beating for Heaven, more often than not, than striving for earthly things. 

Heaven feels close because every morning I thank Jesus for another day in this beautiful life, and plead for Him to return.

24 Hour EEG

Tomorrow morning Baby Grace (there is an earlier post about this name. It is not her legal name and it is not her future name. But I felt very strongly she needed to be called something better than baby girl. she needed a social media name.) and I will return to the children's hospital wherein she stayed in PICU for 15 days over Christmas and New Year's. But this time it's just for a test and not in intensive care. 

Baby Grace's neurologist is testing for seizure activity. She had only displayed seizure activity shortly after being rewarmed from her 72 hour cooling after she was born. We have not seen anything that looked like seizure activity. But this test should give us a good picture and, hopefully, if she does not have seizures she can ween off of her seizure medication!! It's pretty heavy duty stuff so we would love to see how she is without dealing with the side effects of this medication.

Please be praying that if there is seizure activity, they catch it! Please also pray that she does not get sick from anything floating around in the hospital. The last thing we need is to end up in PICU again because we had to do a test. 

Please pray that she can sleep and be comfortable. And me as well. It should be routine, but I feel like, with this little lady, hardly anything will be routine!

Other prayer requests: For her facial muscles to gain strength so she can smile, coo, suck, and swallow. Pray for all out miracles here. If she could swallow, her whole life would change! We need a miracle here and we know that God is completely able. We cannot do anything, so he would get all the glory, as He should!

Please pray for approval of nursing hours. We would have a nurse come in and care for Baby Grace while we slept! Jason and I haven't slept in the same bed for months. We take shifts with the baby and hardly sleep more than 1 hour at a time. It would be amazing, wonderful to be able to sleep through the night knowing your baby is in good hands.

Please pray that the adoption process is miraculously sped up. We were originally told a couple months, now we have been told close to a year. I know there is a process but for Baby Grace, it would be so beneficial to her and us to focus all of our attention to therapy and doctor appointments rather than all the DSS things too.