4.10.13 The Unsought Gift

No one requests this gift.
No one day dreams of their baby being disabled.
No one asks for the reward of limitations.

I was lent a book recently by Aimee's vision teacher called 'Adam: God's Beloved' by Henri J. M. Nouwen. Her teacher said that reading it reminded her so much of Aimee and how she has always seen her as such a pure angel.

The book is by a Catholic priest who spent much of his life writing and teaching on spirituality. In his late years, he pastored a community of handicapped individuals and spent 14 months participating in the care if a disabled man named Adam. The experience changed his view of himself and his view of God. Although Adam could not speak, walk independently, and suffered from seizures, he became a mentor to this wise man. Although many would only see the many needs and thus the burden of caring for Adam, the author began to see the sacredness of the person. He writes:

"Adam was sent to bring Good News to the world. It was his mission, as it was the mission of Jesus. Adam was -- very simply, quietly, and uniquely -- there! He was a person, who by his very life announced the marvelous mystery of our God: I am precious, beloved, whole, and born of God. Adam bore silent witness to this mystery, which has nothing to do with whether or not he could speak, walk, or express himself, whether or not he made money, had a job, was fashionable, famous, married or single. It had to do with his being. He was and is a beloved child of God. It is the same news that Jesus came to announce, and it is the news that all those who are poor keep proclaiming in and through their very weakness. Life is a gift. Each one of us is unique, known by name, and loved by the One who fashioned us. Unfortunately, there is a very loud, consistent, and powerful message coming to us from our world that leads us to believe that we must prove our belovedness by how we look, by what we have, and by what we can accomplish. We become preoccupied with 'making it' in this life, and we are very slow to grasp the liberating truth of our origins and our finality. We need to hear the message announced and see the message embodied, over and over again. Only then do we find the courage to claim it and to live from it."

Truthfully, I cried about 12 times while reading this book the other day. Partly, because of Adam's passing at the end of the book. I may have squeezed Aimee a little tighter and cried over her. I also cried, because of the beauty of being lovable when one is completely empty. The message that is lived out by those who have nothing tangible to offer the world and instead seem to be a burden only.

We live full lives. We measure our successes and feel confidence or happiness based upon our abilities. Though we may not consciously think it, we commonly value ourselves based on what we can do. We don't even know ourselves beyond the deeds and items that surround us. We are known for these things. We are afraid of our weak areas and ashamed when we cannot do what we see others able to do. We may honestly look at ourselves and see nothing worth loving after we are stripped bare of our good deeds, our talents, and our strengths. Some may see a severely disabled person in the same way. What is there to do but take care of them? They are automatically empty where we are full of any activity we can conjure up.

It is in this emptiness that the truth lies. We are all broken, whether visibly disabled or invisibly faulted. The truth of divine love reaches past ability, beyond our pursuits, to our true value. You are valuable and precious. Not because of your talents. Not because of your wise decisions. Not because of your selflessness.

I am proud of my daughter. Not because she learned faster, got better grades, talked earlier, always obeyed, never lied. I am proud of HER. And this same way, you are beloved. Always you are loved, beloved of God, as Aimee is loved. Just as you are, just as a person with visible or invisible disabilities. In Aimee's brokenness and inability, she is whole. When we are able to let go, empty ourselves of all these pursuits, we too can be made full. Even when we have nothing to show for ourselves, we are beloved. Not in spite of our weakness, not because of our strengths. Simply, we are made uniquely, creatively, wholly His own.

This is the message, the gift that Aimee's very being communicates from the heart of God. The gift of being in relationship with an individual who is completely reliant on others for care is the peace, the confidence in knowing you are valuable. We can freely receive this gift of seeing what we would be when completely emptied of everything we could bring to the table, of seeing that we would still be loved. In this way, the disabled person, who seems broken and empty from our perspective, is actually whole. The gift that they give us is healing and completeness beyond our abilities.

By accepting this message, we are accepting the unsought gift. No, this is not the gift I asked for or wanted. I never wanted to have a child who could not have accomplishments or do good deeds. I don't want to look into Aimee's eyes and wonder how long I get to be her mom. Yet, what I most want for my children, Aimee has. She knows she is loved and she shares her message freely. It is the priceless gift I have been given, the gift Aimee has been entrusted, and the gift that I can share with you. I will be always thankful for the unsought gift Aimee brings in her immense weakness and in her astounding strength of spirit.

4.6.13 The Corner Of My Eye

One of Aimee's favorite places to be right now is in her play room on an old crib mattress. When she kicks her feet she gets a nice feedback bounce from the mattress. Plus, there some great objects in that play room, though the jingle bells are the winner for sure.

Yesterday, I climbed in her playroom with her for a bit and Aimee thought this was hysterical. She has a tendency to laugh when a routine is done differently than she is used to it being done. This shows up a lot when she is with an alternate caregiver, like at school, where the nurse might pick her up out of her chair differently than we do it at home. We are excited to be noticing this increase in awareness of differences more and more lately. How incredible it is for her to acknowledge my presence in her play space!

Another way she has become more aware is visually. When we do vision therapy with her it is in controlled environments that optimize her ability. Typically, this is a very dark space with no windows for conflicting light. We then use a light box to illuminate high contrast, moving patterns and objects. However, just lately, she has been noticing us with brief glances out of the corner of her eye, where she sees best. We are seeing this corner of the eye phenomenon occur when we hold her/lay next to her outside of the controlled environment. She still uses the sound of voice and maybe even smell of individuals to primarily identify them, but using her vision in this small way is a wonderful venture forward into new territory. Hooray Aimee!

Prayer request:
Please pray for Aimee to be protected from sickness. We were hoping to venture out tomorrow, taking her to church wearing a mask, for the first time in a few months. Unfortunately, Caleb has gotten a cough and fever for the first time in his little life this week. I am doing my best to protect Aimee, but it is hard to keep a sweet boy from his sissy when he continually tries to snuggle with her.

4.3.13 Turbinate Reduction

We met with Otolaryngology yesterday. After two unsuccessful attempts at correcting Aimee's chronic eye infections and blocked tear ducts with Opthalmology (tear duct probe and stint procedure and topical steroid spray), we were referred to meet with Otolaryngology to discuss option C. After reviewing Aimee's situation the doctor felt that it would be best to proceed with doing a turbinate reduction in her nasal passages, steriod injection, and most likely do an adenoidectomy at the same time. The turbinates help to moisten and warm the air that you breath. They are often reduced in allergy patients due to swelling. In Aimee's case, it seems that her nasal passage has become increasingly narrow as she has grown. Her adenoids were only somewhat enlarged when her last x-ray was done by Pulmonary 18 months ago, but the doctor thought that they had most likely increased in size and are a contributing factor to her issues.

The hope is that by reducing the size of the surrounding tissue pressure will be relieved on the tear ducts where they enter the nose. Opening up her nasal passage may also help relieve some of her difficulty with sleep apnea (not all most likely since she will still have hypoventilation due to her low tone) and allow her to breath through her nose (mostly obstructed). May even reduce ear infections. Although we only know she has an ear infection when the drum ruptures and bleeds, so we are only for sure that she has had two.

All in all, the doctor feels that the procedure will benefit Aimee, although he did stress that it may not relieve her continual eye infections. I am very hopeful that it will, because option D involves restructuring her tear ducts and potentially adjusting facial structure. As always, going under anesthesia is a bit nerve wracking, but at least we know the drill! As long as she stays well, she is scheduled with the surgery center for the 23rd.

3.29.13 Possibilities

We had a special opportunity this week to have lessons with a therapist who traveled up from California, where the ABM therapy center is located. Since we weren't sure if we would be making it back down to the center before the baby comes, we were excited. The lessons were AMAZING! Our regular therapist was there video taping the lessons and learning more ideas for going forward with Aimee. The visiting therapist was an incredible resource. She had previously been a traditional physical therapist and is able to take benefit from both types of therapy in her recommendations.

Aimee responded immediately to the new positions and techniques. It was really fun to see her engaged. She was so excited between the lessons and "talking" a lot. A few new things we have seen her do during the week:
-Rocking pelvis front-to-back (she had started wiggling it side-to-side a few months ago)
-Wiggling her rib cage side-to-side
-Moving her head, left leg, and wiggling her hips all at the same time
-More handsy (grasping at hands, tubes, hair, really anything that touches her hands at all)
-Participating in rolling toward the right side during therapy by pulling her head forward
-Able to hold her knees closer to in line with her hips, rather than only holding them out
-Improved ability to move her right leg and plant her right foot
-Also, fun loving girl, laughing every time they show her how to move her pelvis

The most exciting thing that happened during the sessions (to me) was watching her participate in the sitting up process. She looked so cute and it was so heart melting to see how much she wanted to participate that I really hoped to get a video so that I could show you. Unfortunately, by the time I thought to get out my camera, Aimee was really tired. I will get a clip from our therapist who was videoing the whole thing and post it as soon as I can. I think you will really enjoy seeing how the therapy works. It's really stunning.

The visiting therapist was most immediately concerned with helping Aimee straighten out her spine. She is always contracted towards the left with her right side extended. This has caused, among other things, worsening of her scoliosis, difficulty in turning her head toward the right and in orienting herself to things happening to her right, her jaw to pull toward the left, and changes in the shape of her face and skull. The great news is that this therapist has successfully helped kids improve in this area.

She also really encouraged us by saying she can see Aimee learning to push with her feet. Aimee has always loved to kick and with her lessons she may be able to learn to first push herself away from a wall and eventually to move across the floor on her back by pushing with her feet. Exciting possibilities for Aimee to have an independent movement. She LOVES to move.

This morning we got an email from the center down in California letting us know that there are lessons available for Aimee starting one month from today with the founder of this therapy method. We will be praying about it this weekend. We don't have the funds to go and it is only 6 weeks before the baby is due to arrive. On the other hand, we know God can provide the money and it may be easier to travel when the baby is still en route than it will be for the first several months after he comes. Please pray for us to have wisdom.

3.26.13 The Fear of Motherhood

Aimee playing with Caleb before he was born.

Fear and motherhood invoke such separate pictures to the mind. Yet fear, sneaky and vile, creeps into many beautiful parts of life. In fact, I imagine many mothers, well for that matter many parents, at some point face fear in parenting.

Multiple doctors, multiple times have said that it wasn't our fault. Several have specifically said there was nothing we did or didn't do that caused Aimee to be disabled. Most are convinced that Aimee has a genetic condition, more than likely even a genetic mutation. Meaning that the beginning of her story had no influence on her current condition.

We knew we wanted other kids, but we also had an irrational fear that told us we did not have the instincts to be typical parents. I was terrified to have another child, feeling that I had failed Aimee.  I felt very judged by other mothers, especially at the beginning, when people seemed to assume we just weren't doing tummy time or giving her the opportunities to learn. I let go of many friendships as others did not understand or were not sensitive. All those other mothers had similar problems to face and would spend all their time chatting together about sleeping, hair pulling, tantrums, screaming, messes, when their kid first walked, talked, or rolled over, ect. Things that seemed trivial to me. All I wanted was for my Aimee to be able to look at me, respond to being held, and remain healthy. I longed for her to ask for food, cuddles, really anything.

Although from this place where I sit now I can see more clearly, at that time I truly believed it was at least a tiny bit my fault. That, at the very least, one should be able to figure out how to feed their own child. Knowing how limited my instincts were, we almost hoped our second child would be disabled. We knew some things now about caring for Aimee and knew we could manage that. However, when Caleb forced his way into the world, participated in birth, immediately demanded attention, and cried for someone to goodness sake feed him, we knew this was not the same.

Caleb was immediately different. He knew how to eat, he could suction, he was awake. His eyes were taking in the world around him immediately. A deep wound in my heart received salve as I began to realize Aimee was limited from moment one. I didn't fail her in my inability to nurse. We didn't fail at encouraging her to develop. Our natural parenting instincts were not absent. 

Having Caleb has been astounding. We saw how quickly babies can change and grow. We immediately felt a response and connection from him. We were able to clearly see how different Aimee was and how much we missed out on with her. It has been rewarding, painful, and refreshing. Our view of parenting will be forever altered by our experiences with Aimee. We will never place the high value on pushing to meet developmental milestones. We will find joy in seeing our children make a mess, express themselves, and make choices. Encouraging our children to keep up with other kids has vanished from our values. We are so thankful for each moment.

Speaking for myself, I can say that this past 15 months with Caleb has resolved much of my fear. My insecurities that had told me I could not be a regular mother have slowly vanished. Ever so slowly I find myself able to connect with other moms. The pain is still there, but we can now see it and understand that there is no fault in it. I will always desire for Aimee to be restored, but now I know she isn't this way because of me. I can finally wave goodbye to the fear of motherhood.

3.11.13 The Younger Older Sibling

Caleb, Aimee's brother, is 15 months old today. 

He is stunning us daily with his abilities and constantly entertaining us with his silly faces, 

singing, dancing, and conversation. We are so very thankful for him.

Caleb especially loves to cuddle with his sissy Aimee. 

Even though he is almost 3 years younger, he is already beginning to take on the role of 

older sibling toward Aimee. He is protective and wants to participate in her activities.

Seeing him love on her is a huge blessing!

He enjoys playing with her.

He loves to lay with her and read books. 

He tries to help with her routines. 

For example, throughout the day we stretch Aimee's legs, arms, and spine. He tries to help her do stretches and even makes the accompanying stretching noise we make. 

 

He gives her toys to play with and helps her play her 

vision app on the iPad. 

He is even learning to help guide her hand to do it herself.

He has begun to move her around the house like we do when we are moving to a different room. 

In these photos, he moved her from the kitchen to the doorway 

of our bedroom when he went there to play.

He has learned to unlock the wheels of her chair to push her across the room.

He even wants to hold her on his lap.

Although he is still learning that rough play isn't an option, we are so proud 

of Caleb as he is beginning to assume the role of older brother to his older sister.

3.9.13 Vibrant

After nearly four weeks of no sickness and two weeks of positive weight gain, Aimee has come to life. Her eyes are radiant and shining. She is energetic and responsive. She is happy and beginning to make noises again. We had gotten so used to her being sick, we had begun to forget what healthy Aimee is like. Protecting her has made an incredible difference!

While we are blissfully happy with the changes, we don't know for sure what it means going forward. We are weighing the cost of exposures with the benefit of outside relationships. Keeping her away from everyone is effective, but also sad.

In other happy news, after last week's ABM lessons, Aimee has raised her right arm straight out from her body 4 times. We rarely see progress in her arms so this is a big deal! She also continues to do some fun foot and leg positioning.