Whitney Update

When I first moved to Michigan 2 months ago I had an extraordinary amount of time on my hands as compared to the previous year and a half. Besides the blessing of spending much time with my children exploring, reading, talking, homeschooling and eating meals together, I was also able to have some serious alone time. Very alone time. I believe it was in this place that I began to feel and grieve perhaps for the first time ever some of the frustrations and disappointments that I have experienced with Whitney's lack of 'normal'.

That being said, one night about a month ago, in the middle of the night, I was reading a BLOG post by author Kelle Hampton about the birth story of her second baby, Nella (I am obsessed with Nella!). Nella was born with Downs Syndrome and Kelle had no idea until she laid eyes on her baby for the first time. She candidly spoke about the depths of the emotional turmoil and pain that she experienced that first night in the hospital as she greived the loss of the baby that she had built up in her mind throughout her pregnancy. However, after she had allowed herself to grieve, she developed a fierce love for her Nella. Nella was her baby, hers. As I was reading this story I began to weep...like from the depths of my soul weep. Like get out of bed and go sit on the couch so you don't wake up Tim weep. In the middle of all of this I was cognisant that my emotional reaction to this story was extreme. I just couldn't figure out why.

Then one day I was talking with Kristen on the phone and for the first time, ever, I began to open up and cry about Whitney. About how I never pierced her ears like Lily's for fear of not feeling that she was ready, about how I have never heard her clearly and spontaneously say, "I Love You Mama", about how so much of my walk with her has been laced with an underling concern, about how frustrating it is to not know exactly what goes on inside that sweet little head of hers. I pushed aside the guilt and just cried. Shortly after I was writing a group of my friends known as the foxes a life update. Here is an excerpt from that email:

"The Lord is really leading me through a grief and healing process concerning Whitty Woo... And how totally different and scary most of her life has been for me. I haven't really allowed myself to even admit that until about now: to admit how disappointing and fear filled most of her development has been... Not Whitney as a daughter, but her lack of speech and other developments. The lack of all of those shared moments that I got to experience with my other babies as they became toddlers. The continual state of the unknown. But as I have been 'feeling' and dealing with it, I am simultaneously falling more in love with her, fighting for her more, and bonding with her. I feel I am switching my focus regarding about where she 'needs' to be (where I or others need her to be) and I am more accepting of where she is... and appreciative of all of her efforts to progress. This is the truth of the situation, although I 100% believe that God has complete health and function as a promise over Whitney's life... I don't NEED her to be okay anymore for me.

Ok, pause... tears.

This is where I have been off in my heart with her. I have so NEEDED her to be on the road to normal for selfish reasons. For my parents. For my future freedoms. So I would never have to have other's pity her, or me. I am beginning to just love her apart from fear, and ungodly expectations. I and Whitney's Mommy, she is mine. I get that now."

~So when we moved into our home a few weeks ago, and Whitney was walking on her own and speaking more I was doing good.

Then we had her eye appointment.

This past Tuesday I walked in and explained my journey with Whitney to the pediatric eye doctor (who was in her defense a young woman). I was asking her about avenues for vision therapy and things of that sort for Whitney. She literally sat down and told me that she, along with all those in her field, do NOT believe that Vision Therapy is of any use in children with developmental delays like Whitney. Then, void of all compassion and concern, she adamantly tells me that my daughter's delays have NOTHING to do with her lack of vision since her eyes are fine now, and that I should take her to a neurologist, get her an MRI and genetic testing. Come back in 6 months for a check up.
I went to my car, laid my head on the steering wheel and cried. Again. Then I called My 1 True Love and described the young doctor using a word that rhymes with stitch. It was not so much her suggestions to go to a neurologist, but the way I ended up feeling like she thought I was a complete tool of a Mom for going down the path we did with Whitney for the last year and a half.
Seriously, it's called a heart. Use it.

Later that day I called Darcy, my saving grace, and she helped me process the truths and the not truths.
Not Truths: children with low vision actually DO experience developmental delays...so Eye Dr. was wrong. Also, Vision Therapy worked wonders for us in the beginning via augmenting our understanding of Whitney's language skills. I believe in the field, and there is literature to back that up.
Truths: Although the Eye Dr. coated it in the noxious venom of her judgements, at this point in time Tim and I do feel a thorough neurological examination would be in the best interest of Whitney's progress. And, as the Lord would have it, there was a neurology opening the very next day. I was nervous for sure on Wednesday, but I KNEW the appointment was covered in the prayer's of my friends.
So that morning we meet with Dr. T., a professional and knowledgeable Neurologist. After listening to our story, she affirmed that children with low vision (which is what Whitney had the first 13 months of her life before glasses) do experience delays. However, she also affirmed that Whitney still is significantly behind in her development. She has few spontaneous words, and gross motor deficiencies. After examining her she did mention that there are 3 physical features that Whitney has that may, or may not, be indicative of something more (meaning chormosomally or genetically abnormal). I hated that part. Like really hated it.  However, she said that she would recommend that we schedule and MRI and some genetic/chromosomal testing to see. She then suggested that Whitney be put back in intensive therapies. Physical, Speech and Occupational. Dr. T humbly asked us if we agreed with her reccomendations. Yes, we did. At this point I felt a crushing weight of all that was just said, the reality of wanting to homeschool my children (which we plan on), home renovations and goal oriented therapies and all their combined threats towards my actual relational experiences with my children. Crushingly overwhelmed.

Tim and I buckled her into her car seat, sat in the front, held hands, bowed our heads and prayed. I love that this Sunday is the holiday that we remember we have a risen savior, a living advocate. I need my LORD to be alive and working on my behalf right now. I am like the bleeding woman who will rudely push you and all of hell out of my way right now to get to Him for my daughter, for me. Not to pray something eloquently and poetic. But to literally grab the hem of HIS life giving garment and plead: HELP! SAVE US!

So back to my conversation with Darcy. She asked me where I have been in my heart and head with Whtiney lately. I told her about what the Lord had done a few weeks ago in helping me get to a healthy place with all of this, and then I told her that I have really just been celebrating all of the new things Whitney had been doing lately. Darcy, in her usual form, said something profound:

"Jenn, that is where I see you landing. No matter what happens, and what comes of all of this, this is where you land...always celebrating her progress."
This is where you land.
Pause. Double pause.

We talked about how all of parenting is tied up in the rearrangement of the expectations that we have for our children. I told her that my ultimate prayer of faith for Whitney is that one day she will have the option to be a Mom, both cognitively and genetically. That this dream is my cup runneth over dream. To have the chance, to have the choice. I still will ask and believe for that.

However, to be transparent, I was reminded today by a friend that "God is in control, and I am not." I used to think sayings like that in times like this lacked the audacity of miracle making faith. But I have been forced to mature. Today is Good Friday. I do not think that is without significance.
I. WANT. TO. CONTROL. THE. OUTCOME.
But as I remember HIS suffering, I am being shown a better way. He willingly laid down HIS life. Faith is saying, 'Jesus, I of all people KNOW that you can raise the dead, heal the sick...do it all. I believe that you WANT to do it all. But see this... here. This is the book of the dreams of my soul, the dreams I have for my daughter. To pierce her ears, to listen to the stories she writes, to watch her think, speak, make jokes. To buy her a wedding dress if she wants me to, to hear her say "I Love You Mommy." To watch her become Whitney. These are my dreams for her. I in no way want to relinquish these dream, and I am not letting them just go.
I am giving them to you.
I am giving You the permission that you do not need to unfold her life the way that You see is for the very best. I will receive the life long blessing of being her fiercely loving mother, whether or not my dreams for her come true. I am giving you my dreams, and I am bravely, if not somewhat hesitantly, exchanging them for yours. Sin and death have no hold on you. I know Whitney will have it ALL one day, on this side of Heaven or not. Give me Grace.'

My Mom has miraculously been here this whole time and even though she never thinks she says the right things, she just doesn't realize something. It is not her words, but her presence that counts in times like these.

I called my Dad and shared with him my fears that he might not accept and love Whitney as much if something isn't right. I apologized to him for even thinking that. He reassured me in all the power of a Father's love that he LOVES his happy little Whitney. He loves me.

My new friend Chris promised to go with me to any of her appointments, and told me that we are going to take it day by day, praying through this. She said we. Lord, I am not alone!

I have received so many messages, calls and texts. As I was painting yesterday I began to think of the 23rd Psalm. "Even though I walk through the valley of death I shall fear no evil. For you are with me...You prepare a table before me in the presence of my enemies. You anoint my head with oil." Jesus equated food with the Words of His Father. All of those words of Faith and LOVE from my friends have been my food. Boastfully proclaiming the LORD's promises in the presence of my enemies. Thank you...even if I haven't responded, I have eaten and digested EVERY ONE of them. I could be so tempted to feel so alone, but I am not. Truly, I am not. And not to sound desperate (oh, wait...), but please keep the encouragement flowing. I need it.

As I just looked up the 23rd Psalm I found the line that follows the above passage. Do you know what it says? After "You anoint my head with oil" it says:

My Cup Overflows.

Pause.
He will make my cup overflow regardless. That I know I can trust in.

So folks, that is where we are. We should have her testing done in the next few weeks. I have some leads for some therapists. I have my dreams, but closer to my heart than my dreams, I have the love of my friends and family, and the LORD.
Happy Easter.

*P.S., I'm not going to be a hater of Eye Dr. She has her own reasons and stuff I'm sure.