Losing It

It's been way too long since I wrote and so this is going to be several posts within a post.

Determined.

Most days I don't really think about Liam being different. Maybe I am used to it and am able to associate it with him without thinking about it, or maybe it truly has left my mind. I find my days passing by quickly, and at the same time slowly, as I continue in my stay-at-home mom routine with 2 kids. The stress and joys of having a 2 year old and a baby are wearing me out but giving me so much pleasure.

But on the days that I do think about Liam being different, I am one of two things, emotional (which I have written a lot about) or determined.

I am determined to do whatever Liam needs to succeed. So we go to doctors appointments and we have several therapists teaching us exercises and ways to work with Liam in order to help him develop the way he needs to. It is overwhelming. I become consumed with this fear of not doing enough for him and being the reason why he could have been higher functioning. I just want to do the best for him so that he can be the best. I do not want to be the reason he is limited.

I am determined not to be sad or angry but to accept that this is how God made my son.

I am determined to not want to change Liam but to embrace him just the way he is without thinking about what might have been.

I am determined to be here for my family even though I am overwhelmed and exhausted.

I am determined to overcome. Overcome all the emotions the journey is taking me on. Overcome all the fears. Overcome failure. Overcome my impatience. Overcome my tiredness.

I think this determination is good but I think I have got it all wrong. The problem is that I am determined to make all this stuff happen all by myself. And I have to be honest and say that I am failing.

I am failing to not be sad or angry. The truth is, in this particular moment I am full of anger.

Injustice.

I am crying out to You. My heart is screaming to be heard.

I am lost in the torment of the injustice of it all.

IT ISN'T FAIR!

Why my son?

I just want everything to settle. I want this anger to settle into trust and faith in the Creator. I want my life to be settled and stable but I am beginning to think that will never happen. How can things feel stable and settled when we are having to raise our salary to do ministry here? This will be ongoing for the duration of our ministry here or until the ministry is possibly able to be self-sustaining.....years and years down the road. And I am not sure I will ever be able to feel settled while getting Liam to weekly therapies and his specialist check-ups. These are reminders that keep us from forgetting that our son is not normal.

Nothing about it feels fair. Nothing about it feels normal or right. It's like having an intense heart ache that comes from some kind of loss and feeling suffocated by the force. You just want things to go back to the way they used to be or to be the way you think they should be now. It's the way you feel when you actually cannot stand it.

Why did the Lord put me on this path?

A friend put this song on a cd she made me and the lyrics have always spoken to me and my walk with the Lord. Not sure if Jesus was really the artist's intent but that's how they speak to me.

Jessica Sonner, Rescue Me

If I wade into these waters, And they get too deep

Will you rescue me? Will you rescue me?
If I get up on this mountain, And it gets too steep
Will you rescue me? Will you rescue me?
If this road gets long, And my load heavy
Will you rescue me? Will you rescue me?
If this wind starts blowin', And it gets stormy
Will you rescue me? Will you rescue me?

You never said that
It would be easy
But I never thought
It'd get this hard
You may stumble
And I just might fall
But we can fight this battle

If I wade into these waters, And they get too deep
Will you rescue me? Will you rescue me?
If I get up on this mountain, And it gets too steep
Will you rescue me? Will you rescue me?
If this road gets long, And my load heavy
Will you rescue me? Will you rescue me?
If this wind starts blowin', And it gets stormy
Will you rescue me? Will you rescue me?

Sometimes I just need
A friend to hold my hand
Someone who's gonna
Be there for me til the end
Whatever you do
I'm gonna be there for you
But honey, I just gotta know

If I give away my love, And it runs out on me
Will you rescue me? Will you rescue me?
If my heart gets broken, And I just can't breathe
Will you rescue me? Will you rescue me?
If I turn back cause, I'm too weary oh,
Will you rescue me? Will you rescue me?
If my soul gets lost, But I start searching,
Will you rescue me? Will you rescue me?

And this is exactly how I feel these days. I need Jesus to rescue me.

Wisdom & Grace.

On July 31, 2009 she entered the world. Before we even knew she was on the way we felt that the Lord told us we would have a daughter who would do great things for him and that we were supposed to name her Grace.

As soon as we knew she was coming we knew that this would be her. We decided to do a double first name and chose Sophie for its meaning - wisdom.

We believe that she will live up to her name. We pray for her to be a woman of wisdom and grace.

She is a joy and a delight. An amazing little girl. She is perceptive and intelligent and her spirit is sweet. She has seen my tears countless times and her sweet little voice asks, "Are you sad, Mommy?" I love her.

Every night we pray with her before bed. We ask God to be with her and to draw her to him. We pray that one day she will know Jesus as her Lord and Savior.

One night this week she said to her Daddy in her sweet little voice, "One day Jesus will be my Lord and Savior."

She loves her baby brother and he loves her. She calls him, "Liam buddy." If she has his attention no one can make him look away. It is absolutely adorable. To him she much be larger than life.

And even though we are so tired and overwhelmed, we are so blessed to have such sweet kids. I think they share that. Sweet spirits, sweet souls.

Control.

I've lost it. But that is not a bad thing. My life is full of circumstances that are beyond my control. And it's ok.

I have always been a control freak but because things feel so crazy and unsettled I welcome the loss.

It's this sweet release. Letting go. Just give it up. Losing it means that there is less I have to do. And I like that because I have way too much on my plate.

I want to be a more relaxed and peaceful person. I am tired of being so uptight and anxious. Tired of the worry and fear. So I am learning to let go.

Mostly I am being forced to let go. Holding on is what makes you crazy, not losing it.

I have isolated myself, trying to do it alone. The truth is, I am not alone and I do not have to do any of this alone.

There are a lot of us who need to learn that. When we seek control we hurt others. But ultimately we hurt ourselves. We rob ourselves of freedom that Christ gives us. We cannot enjoy what is here and now because of how we seek to control what is happening around us and what will happen in the future. We deny and we justify. And all we do is worth nothing. Because the control was never ours. No amount of controlling can change what God has ordained to be in his Sovereignty.

I really believe that there is peace and rest in that. So why is it so hard to give up control? Maybe that's why, for me, he is taking control by forcing me to lose it.

And that was July.

My Grief: Despair, Anger, Guilt, Hope

We have been told, and I have previously written, that when you have a special needs child you are forever in the grieving process. Ever since I finished my summer class I think it has left me with more time to think about and process Liam. And I have learned that this is my grief:

Despair. Sunday morning after breakfast and before getting ready for church, I took my sleeping baby boy in my arms and lay in bed crying over him. A great sadness overwhelmed me as my thoughts took me to the places Liam will never go. Here, I am not ok.

I am surrounded by friends who have recently had baby boys or are just finding out they are having a baby boy. Healthy, normal boys. I am so excited for them but so sad.

I wish so badly that when we had our 20 week ultrasound the technician would have recognized that we were having a boy. I am sad that I never had the chance to prepare for him and be excited for my son.

I wish we could back up to Liam's birth day and have a do over. We were so shocked at his arrival and the immediate concerns for his health that we never experienced the joy of a new baby. By the time we were settling down we learned of his chromonsonal disorder.

I wish more than anything Liam and I were bonding. He had several factors which prevented him from being able to nurse and I am still mourning that loss.

I was robbed.

Anger. I feel so angry that I did not have the chance to enjoy and prepare for my baby boy. I am even angrier that my sweet boy does not get to experience what most boys do. Why does he not get to be quite as strong? Why does he have to suffer the frustration of difficulty communicating? Why does my little boy not get to be a normal little boy? Why do my friends get to nurse their sweet babies and share in that special bond while I spend my time washing and sanitizing bottles and measuring and mixing stinky formula? It isn't fair!

I am not able to remain here long. I have always had a sensitive conscience and been driven by...

Guilt. I am so upset with myself for feeling so sad and so angry. I am so happy for my friends and I would never ever wish anyone to have to experience what we are experiencing.

More importantly, I love my son. And God made Liam, extra chromosomes included, just the way God intended to make Liam. I do not want Liam to be anyone other than who God made him to be. Because I know that before we ever saw Liam's sweet face God knew that face intimately. And before I ever felt those first sweet kicks, God was knitting that tiny body together fearfully and wonderfully. No, I do not want to change my son.

And if Liam had been born 200 years ago he would be dead. He would have starved to death weeks ago and we would be experiencing an even greater loss. So I would say that formula isn't such a bad thing. In fact it is such a wonderful blessing because when it comes to my baby's health, I'll do whatever he needs; and he needs to eat.

So I work through the guilt and stumble into what remains.

Hope. This morning we had our first home visit with a nurse who is a developmental specialist. She will be coming once a week or every other week to work with Liam and his development. He is doing great. We are so incredibly blessed that we found out so early about his disorder. We live in a place full of wonderful resources that are allowing Liam to recieve the care he needs for early intervention. Early intervention is so crucial to any child with any sort of developmental delay or learning disabiliy. The earlier you start working with them the better they are able to grow, develop, learn, and achieve. And I believe and hope with all my heart that we are giving Liam an amazing chance at achieving so much more than we could imagine.

This is what I was thinking about as I pushed my double stroller up and down the hills by the bay this morning:

I love California. This state might fall off the mainland and into the Pacific one day but there is no where else I'd rather be while on this earth. The brilliantly clear blue sky with the brightest shining sun; the bay water glistening, and on the other side of the coastal hills the mighty Pacific waves wash over the rocky shore. The eerie and majestic marine layer rolls over those hills and into the valleys ensuring the temperature cannot get too hot and the sea breeze provides all the cooling we need (except maybe 10 days out of the year). Perfect weather and some of the most beautiful landscape in creation. It demands an acknowledgment of the All Mighty Creator. The culture is casual and laid back and the people have a desire to love and accept everyone. I love the diversity of this place and the challenge of getting along with people whose values and ideals are not my own. I cannot imagine a place that needs the gospel any more than the 98% of the population in San Francisco who are not Christ followers. And I feel hope in the way God is using the people here to minister to the needs of our family and hope in what he will do through us to share the gospel with them.

And that hope spilled into my hope for Liam. When I let despair rule me, I am not focused on Liam's abilities. In fact, allowing myself to get lost in that despair would probably hinder the growth that Liam is capable of. The anger and guilt do not help him either. So I hope in my son's future. In the abilities he will have and the independence, no matter how small or great, he will achieve. I will hope in the plan and the purpose that God has for Liam, Sophie Grace, and Joe and myself. I will hope in the rest and the peace found in my Savior.

Too easily and for too long I have allowed myself to be robbed of joy and hope. I am still working on that, but I like days like today when God uses the resources here that are helping Liam and the beauty of this place, his creation to remind me of the hope he has given.

This is my grief. This time it took about a week to go through. I think sometimes it may take hours or days maybe sometimes even weeks, months, or years. But I need, and my family needs, to rest in hope.