Happy First Birthday, Aerin!

I have been looking forward to this day with a mix of relief and sadness and fear and joy. It is Aerin's first birthday. One year ago, my longest and hardest labor ended as a tiny bundle pushed out into the world. She came out with big, searching eyes. She was so small and still and silent. I loved her with a fierceness from the very beginning. She did not just need love and nurturing, as my other two children needed, she needed protection and fight—for she had none of her own. Nothing about her coming was like anything I had previously known. We were lost together, she and I. She in this world she wasn't made for and me in those big, gray-blue eyes that pierced my heart.

And today, one year later, I know that we are slowly being found again. We are working out this cautious dance of hope and trust and fear and love. The Lord is making something beautiful of the mess and I am thankful to be under His careful hand.

And so yes, I meet today with relief. We made it. We survived her first year. 3 weeks in the NICU, 3 surgeries, countless doctor's appointments and unending therapy. This on top of the grief that rolled in from time to time as we settled into the reality of what life with a child with PWS means.

I meet today with sadness. A whole year of her life has passed by in a mere matter of moments. Her lazy baby days are numbered now and how much time did I lose, running to and from appointments or sitting at that infernal pump? I have learned to count the days precious with her coming and yet they slip through my fingers and fly off into the wind.

Which leads to the fear that comes with each sunrise. I know our days are numbered before the hunger sets in and life takes on a very different tone. Perhaps this is the wrong way to see things, but that is the color of my glasses for now. Each day that passes is one day closer to the day when enough is not enough and never will be again.

And, still, I choose to meet the day joy. Have you seen her sweet face? How dare I not feel joy for each day that I get to be her mother? Each cuddle, each smile and each victory are enough to send me over the moon with joy for this wondrous child that the Lord has entrusted me with. My prayers are those heart-pleas that, in the Lord, I may always revel in the joy of it all.

It is a sweet day, this day of relief, sadness, fear and joy. One with the other, they combine to make a day made for heaven. A day of smiles and sighs, laughter and tears. Happy First Birthday, my dearest Aerin. I love you so very much.

You can watch Aerin's First Year Video here.

Merry Christmas and a Blessed New Year!

We had the privilege of dedicating Aerin to the Lord on December 23. It was a wonderful way to kick start our Christmas celebrations and we'd love to share it with you. We hope that you had a wonderful Christmas and that you would know the love, the peace and the mercy of the Lord in 2013.

(The video is embedded here, but I think it works better to view it in Youtube.)

Letting Go

Letting Go
As children bring their broken toys
with tears for us to mend,
I brought my broken dreams to God,
because He is my friend.

But then instead of leaving Him
in peace to work alone,
I hung around and tried to help
with ways that were my own.

At last I snatched them back and cried,
"How could you be so slow?"
"My child," He said, "what could I do?
You never did let go."

This little poem came to mind this week, dredged up from some foggy corner of my sleep deprived mind, and reminded me of how the Lord’s best work in my life comes when I let go and allow Him to turn my messes into miracles. Since Aerin was born, my mind has raced from one problem to another, wondering how I would fix it, fight it off, minimize it, manipulate it, or make it happen. And the deeper I got my hands into everything, the harder and the messier it got. This is deliberately vague, forgive me, but suffice it to say that we’ve had some pressing needs snowball lately and were desperately seeking some answers.

Finally, this past week, I came to the end of myself and dumped everything in my Father’s lap with a rush of tears. I was broken and hurt and worried and overwhelmed and I just couldn’t spin my wheels any longer. Aerin’s diagnosis has come bundled with a slew of physical, emotional and financial baggage that had weighed me down so much that many days, I struggled to lift my eyes. And therein lies the great tragedy: He would gladly have taken my burden from me at any time, but I clung to it as the child who will not relinquish the broken toy. And with my tear-filled eyes fixed firmly on the broken toy, and not on the Father who wanted to make it right, I wasted precious time and energy.

Once I let everything go, the Lord was able to start His work, which is so much more glorious than mine anyway. And prayers have been answered, in wonderful and mysterious ways, and blessings have rained down upon us. Or maybe they were there all along, I just couldn’t see them for my stubborn blindness. Please don’t misunderstand--my problems have not disappeared. But they are in His hands, where they belong and where they have settled into their proper place and priority. Now, I work to resist the temptation to snatch them back, o foolish flesh that I am.

Be merciful to me, O God, be merciful to me!

For my soul trusts in You;

And in the shadow of Your wings I will make my refuge,

Until these calamities have passed by.

I will cry out to God Most High,

To God who performs all things for me.

He shall send from heaven and save me;

He reproaches the one who would swallow me up. Selah

God shall send forth His mercy and His truth.

Psalm 57:1-3

Black Friday

I had it in my mind to write up this great post on how Thanksgiving came and served to reinforce the sense of gratitude that has bloomed (sometimes through disciplined care) in the face of this hardship. But it just didn't happen that way.

I remember the first night after receiving Aerin's diagnosis; I rocked with her in the NICU, heavy with grief. The grief came in great waves that night, rolling over me with each new realization of what having PWS meant for her and for me and for my marriage and for my family. It may seem silly, but one of the things I grieved was the holidays. There is a palpable pleasure from gathering with loved ones over a good meal, enjoying it together and lingering over it, long past feeling full. Now, those treasured days feel like enemies and the loss is profound.

I find that most days, I can keep the fears and grief regarding “The Hunger” at bay. With the Lord's help, I try to keep my eyes on Him and what He has called me to for just that day. But yesterday, I was drowning in sorrow, fear and desperation. Thanksgiving has always been my favorite holiday but yesterday it mocked me with its resplendent meal and the haunting shadows of things to come.

It just hurt so much.

So, I wake up to Black Friday—which has taken on a new meaning altogether for me as well—and I start another day of disciplined thankfulness because today, it just doesn't come naturally. My flesh cries out to be bitter and heartbroken today. But, ever so gently, the Lord shows me that I still have so much to be thankful for. There is much more in my life (and in Aerin's) that is whole than is broken. And our future is still one of hope. We hope for better treatments, we hope that the severity of PWS in Aerin's life is minimalized, and we hope for a cure. But what I cling to most is NOT hope. It is the assurance that, one day, the raging hunger that lives inside all of us—the hunger for something, or anything, to fill this giant tear in the fabric of our hearts—will be healed. Not on this side of heaven, but somewhere on the other side of the veil, He alone will satisfy that hunger and heal all of us for all time.

“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So, we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary but what is unseen is eternal.” 2 Corinthians 4:16-18

***

Aerin was a little under the weather yesterday, so I didn't get many good "First Thanksgiving" pictures. But I did get a precious one of her with her wonderful big sister!

Thankful

I have sat down to write an update several times and each time I have had to abandon my mission for some pressing matter or another. Well, today I am determined to get something up on this blog!

Aerin is just a few days shy of her 7 month birthday and we have come so far. I think back to those dark days in the NICU where we didn't know what was wrong and we prayed fervently that it not be something that would take her from us (at the time, she was being tested for Spinal Muscular Atrophy which is a devastating condition where children seldom live past the age of 2). And then we got her diagnosis of Prader Willi Syndrome and while we rejoiced that it was not something degenerative, it certainly came with a degree of grief and loss.

And it occurs to me now that the Lord had been preparing us for this. Prior to having Aerin, I suffered a very difficult time of post-partum depression with the birth of my son and then two miscarriages. All three instances were valleys that He led me through where I learned to lean into Him when the pain was great and the darkness so dense that I feared I would never again see light. He knew what was coming and that it would be the hardest, deepest valley of all and that I needed to be ready for it.

After the second miscarriage, I came across the book One Thousand Gifts by Ann Voskamp. It is a beautifully written book about learning how to cultivate a spirit of gratitude in all the seasons of life. It taught me that being thankful is a spiritual discipline in which I choose daily to draw closer to the Lord by seeing His hand in all things. Even in pain, in heartache, in loss, in grief, in despair and in bleakness, He is there. And He is King over all of it so that I don't have to be. I knew, after those first days where all I could see was what we had lost, that I still had the choice to be grateful for, and in the midst of, PWS.

It started off by choosing to be thankful that, while our life with Aerin would look radically different from anything we had imagined, she would be with us. She would grow (at her own pace) and we would be able to watch her blossom like we have done with our other children. Then it was choosing to be thankful for each milestone reached—each bottle completed without the feeding tube, each swat of an otherwise lifeless hand, each hard-fought smile was a joy to be counted as gain. Then it was choosing to be thankful for our family and our friends who all have stepped up to love Aerin, and us, and to be the hands and feet of Jesus to a family very much in need.

From there the list of reasons to be thankful in the face of this rare genetic disorder just multiplied.

Augie and I celebrated our 11^th wedding anniversary on October 6^th. We had a brief moment to sit down and really look at each other. And I saw my best friend, my husband and the father of my children in a whole new light. He didn't choose this (none of us did) but he has not backed down from it for an instant. He has become my hero in every sense of the word. And that's when I realized that, in sending us Aerin, God has truly saved us.

We have always struggled with finding the Lord's purpose for our lives, for our marriage and for our family. We are too easily distracted by the world and would often find ourselves veering down every possible byway imaginable. But then He put Aerin right in the middle of our lives and said, “Here is this gift that will always remind you to look towards Me, to live in Me, to trust in Me, to glorify Me, and to love Me above all things. She is precious and unique and she will force you into a life of disciplined love and trust that will make you infinitely more like Christ. She will make you better lovers, better friends, better parents, better human beings. She will make you stronger, braver, more hopeful, more faith-filled and more loving. I and my Son will use her to bring Us glory by growing your hearts and breaking you out of the prison of selfishness that you were trapped in. She, and her genetic deletion, are our gift to you. It will not always be easy but, in the end, it will definitely be worth it.”

And so here we are. Our gift is alive and well and growing. And we are, we are, so very thankful.

Thanks be to God for His indescribable gift!

2 Corinthians 9:15 (NKJV)

Sweet Sounds

This past Monday, we went to see Dr. Miller up at Shands in Gainesville. Dr. Miller is Aerin's endocrinologist and is truly a stellar example of how doctors should practice medicine. It is obvious that she has a real heart for her patients, some 500 babies, children and adults with Prader Willi Syndrome. She was thrilled to see how much Aerin had grown and celebrated all of her achievements with us in such a way that we could tell that Aerin was almost as much "hers" as she is "ours". To have a doctor that is so much invested in your child's future is priceless.

We talked about starting solids soon (ack!) and getting going on more aggressive speech therapy since Aerin hadn't started babbling yet. It is one of the strangest features of this syndrome, this near silence. I set my alarm each night to wake up for feedings and have to crank up the baby monitors to hear her shuffling in bed when she wakes up from a nap because she makes no noise otherwise.

Speech delays are a common issue in PWS. Many children develop speech apraxia and remain nonverbal for a long time.  It is another hurdle that we face, not knowing if it will affect Aerin or how severe it might be.

And, as always, the Lord met us at that place of fear, hesitation and uncertainty. The next day she spent "talking" her little heart out! It's so precious to see her trying out her lips and cheeks, working against the low tone that weighs her every muscle down to form sound. When she watches us now, she intently watches our mouths as if to crack the code.

I'm just so proud of her, I could burst!

Rock 'n Roll

This week started out really ROCKy. I've just been struggling so much with Aerin's developmental delays that it's really been weighing me down. My head knows that this is par for the course with PWS, but my heart just breaks over and over again for her sweet, frail little body. One of the key features of PWS  is hypotonia, or low muscle tone. I find that this is a really hard concept to understand, especially as it's not as simple as "her muscles are weak". I found this great article on what it means to have low muscle tone and the PT who wrote it was able to describe it within the context of us regular-toned folks:

Muscle tone is the resting state of your muscles.  When a child has low muscle tone it means that they need to put a lot more energy into getting their muscles to turn on to do what they want them to do.  I often try to explain this to parents by describing that feeling when you finally get to sink into the couch or your favorite arm chair and relax and then someone calls you from the other room and you have to rev up the energy to get up.  Think about having to do that every time you move because that’s what it can be like for kiddos who have low tone.

Basically, having low muscle tone means that Aerin has to work at least twice as hard as everyone else to complete even the most basic of movements. Aerin has what is called a "global delay," meaning (among other things) that she is very late in meeting her milestones. She is weakest in her trunk and upper extremities, which is why she still can't lift her head at 4.5 months or raise her arms to swat at or grab at a toy. Her lower body is stronger--in fact, she's got quite a kick and I can't wait until she can swim, she'll knock it out of the park.

It's just so very hard not to compare her to other sweet babies and, at those times, the discouragement is so very tangible it hurts.

But, as always, when there is a question God is prepared with His answer. Our answer came in the form of our physical therapist. We've been seeing her regularly for a couple of weeks now and she is very sweet with Aerin and very encouraging to me. She is very proactive and we are already getting Aerin a pair of hip helpers to address Aerin's severe hip abduction (i.e. her legs splay outward like a frog when she is laying down and this can lead to several problems later, not the least of which is hip displasia). We are going to order a set of bamboo braces to help support Aerin as she learns to push up on her hands while on her tummy. And she is going to start investigating whether or not a spio suit will help give Aerin more proprioceptive feedback all over her body, thus encouraging her muscles to engage and work more. And these are just the various orthoses that are in her plan to help Aerin reach those milestones in a more timely manner. She also has established a thorough program of "exercises" that we do with her each day to help push Aerin towards her full, ever-blossoming potential.

So, we are getting there. Slowly but surely. I have to constantly remember that Aerin is on her own timeline and no one else's. It's not fair to her for me to constantly be comparing her to others when she is marching right along to the beat of her own little drum. The Lord has made a way for my daughter and she will follow it on His and her terms, not mine or the world's.

All of that being said...today Aerin ROLLed over for the first time! We put her on her tummy this morning for some tummy time and she just plain decided that she wasn't gonna have it, so she just popped herself right back over to her back where she was just fine, thank you very much. Yes! She ROLLed!

It's just like my Lord to ROLL away the ROCK I find myself facing. <3

Enjoy!