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.

Un-Reality

I do not live in a reality anymore. That's what life feels like. It's like I am in a dream-like state floating slowly, but out of control, through the days. The fog ahead of me is so thick I cannot even make out the outline of what lies ahead. Nothing seems real, yet life has never felt more real. I can only describe what is, as my un-reality.

How did I get here? I never imagined living in California. In fact, I told the Lord when I was in college that I was willing to go anywhere in the world to serve him except the Northeastern U.S. and California. Naturally those are the exact two places he led me. I have to confess that I LOVE California. The West Coast is a completely different culture from the East and it is the only place, besides Blacksburg, VA that has ever felt like home.

Maybe it feels like home because I am here with Joe. The man God had for me is nothing like the husband I imagined. And I am so thankful. Because the man God blessed me with is so much better than anything I thought I wanted.

And maybe it feels like home because God has called us here and so we belong here for that reason. God called us here and so even though I cannot see through the fog, I have an overwhelming peace.

I never imagined that in order to serve in ministry alongside my husband, I would have to develop partners to raise support instead of being in a place where we are given a salary and benefits. It is all so un-real but I cannot imagine being anywhere else or doing anything else.

In all of this, I am finding it hard to stop being busy. Yesterday, I was reading with Sophie Grace. We were reading one of her Bible story books. Her favorite stories are Samson, the giant (David & Goliath), and Jesus. We read Samson and we read David and Goliath and as I turned the pages to the New Testament stories to read one about Jesus, she said, "Marta" as I passed the story about Jesus visiting Mary and Martha. So I stopped and read.

Martha's tongue is sticking out as she furiously works and sweat pours off of her forehead as she fumes over the fact that Mary is not helping her. The little story makes her sound so whiny. And then on the last page the cartoon Jesus looks so kind with his arm around her telling her that Mary has chosen what is better, "She is listening to me."

I was struck by this. I am busy running around trying to get stuff done never taking the time to sit at the feet of Jesus and listen to him. It is like I can see him sitting quietly in the room as I rush around and glance to the side. It is awkward that he is just sitting there waiting when clearly I have things to do and in fact have already started doing them. Maybe if I went and sat with him life would feel real again.

I work so hard to make it all okay. When we are out and people come over to comment on our brand new little baby, I find myself telling strangers about my special baby. I just find myself responding to their comment that he is so small with, "He has a chromosonal disorder and that is why is small." Typically this is followed by an awkward silence and a questioning look as they search for something appropriate to say and walk away.

Why do I feel the need to say that to strangers? It really is uncontrollable and I think it will go away. I think it is a way I am making this un-reality a little more real. I am refusing denial. Denial has to be the must frustrating part of grief. Why try to make a situation something it is not by pretending it doesn't exist? So anytime I feel like I can reasonably say it, I casually slide into a conversation that my baby has a disorder. Telling people about it keeps it real.

I do not know when my un-reality will feel more like reality. I am ready to feel more stable. I want to feel solid ground beneath my feet. I want to see the clear blue sky with the distinct shape of the city's skyline ahead of me.

I need to sit with my Savior so it isn't all so awkward anymore.

Release

As I sit here, in the library, finishing up some school work I am trying desperately to overcome the urge to let myself fall into my emotions and cry, and slowly losing that fight.

As I finished one assignment earlier this week I did succomb to that overwhelming need. I had not cried like that since I got the phone call from the geneticist telling us that Liam had a chromosome disorder. I am not really sure why I started crying. I think maybe I was releasing all my pent up stress about school and Liam.

Considering all that we have going on in our lives (our special boy, adjusting to 2 kids, me finishing school, developing partners and raising support for our ministry in SF, Joe working 2 jobs) Joe and I have remained very composed throughout the last 7 weeks. I think it is just time to let it out.

When I see pregnant women or my friends with their "normal" babies I feel so sad. I am happy for them but their normal experience brings tears to my eyes.

I am so in love with my baby boy. He started smiling this past week and he saves most of them for his momma =) I would not give him up for anything but dealing with this is hard. Joe and I have wanted nothing more than for everything to be normal and ok. We really are ok but we are learning that we do not have to make our situation normal. This is not normal. Most people do not experience what we are experiencing. Most of our friends are having normal, healthy babies and they will never know what it is like to walk the path we will walk. They will never experience the pain of realizing that their child will never have a fair shot at a college education, a godly marriage, and a family of his own. They will not have to face the stares and whispered comments of others noticing that something is wrong with that one. They will raise their normal, healthy children to grow up to be independent and capable adults.

But what I have to believe, is that we have a blessing that most of our friends will never experience. This little boy, created in the image of God, but with some extra special needs gets to be ours. We get to encourage him and celebrate him as he learns and accomplishes what he is capable of. He may not walk until he is 2 or 3 years old but when he does we will celebrate. He may not talk well but we will learn to understand him and equip him so that he is able to communicate. He may have limitations but we will celebrate his abilities. And even as I mourn what will never be, I will celebrate what has been given.

"yet I will rejoice in the Lord; I will take joy in the God of my salvation. God, the Lord, is my strength; he makes my feet like the deer's; he makes me tread on my high places." ~Habakkuk 3:18-19

A Journey of Faith

Over the last few months it has become painfully obvious to me that the Lord is testing/stretching/growing my faith. As far as spiritual gifts go, faith has always been low on my list. Maybe this is related to the realist in me (Joe says I'm pessimistic, I say I just keep reality in check). Joe, on the other hand, is a man of great faith and I am honored and blessed to have such an amazing husband.

Faith is something we all need. I have always known that I needed more faith and wanted more faith. I've noticed that often when we pray for God to grow some area of our life he does so using dramatic events or circumstances.

When I was in college, I told God that I was willing to go anywhere to serve Him just please not the Northeastern U.S. or California. Naturally, those are the places that He lead me.

I think since Joe arrived here in San Francisco he's wanted to stay. I have been more hesitant in that desire. He was talking about it our first year of marriage but once we knew Sophie Grace was on the way I was 100% against moving into SF one day. There is no way I was going to raise my family in, gasp, the city.

Joe graduated this past December and I will this coming December. We feel called to collegiate ministry and it makes the most sense to begin that ministry/go wherever that is in time for the start of the fall semester. Knowing I had only one class left for the fall semester and that I could take that class online if needed, we began the search for a position in collegiate ministry. We started this process in January and I conceeded enough to allow staying in SF to be an option. Joe sent his resume to multiple states and we had one interview. We considered returning to Upstate New York, where we met, but ruled that out after a visit left us without peace about that option. The problem with San Francisco is the money. The cost of living is very high and if we wanted to stay here we knew that the only option for a salary was to raise support.

I had a conversation with my sweet friend Ellen a few months ago and she was sharing with me about how the Lord was teaching her about submitting to her husband. Ugh. I definitely am not good at that and I definitely knew as we were talking the Holy Spirit was speaking to me.

I play this game with God. I know where He is leading me and I push it away. If it is not what I think I want I like to pretend I don't know that's where He's leading me. So I came to Joe and I told him that I needed to submit to him. I told him that if he felt that we were supposed to stay in San Francisco, I would trust his leadership in that. If San Francisco is supposed to be the only option then I trust him to stop pursuing the others.

Almost immediately things started falling in place for staying in San Francisco. I felt bad that I had been holding us back. I knew in my heart it was right. It felt good to surrender and it felt peaceful.

And so God started me, and our family, on this journey of faith, faith that He will provide. In order to stay here we have to raise our own support. Last week Joe went to Louisville to go to Support School. We have been accepted by the North America Mission Board to be Mission Service Corp missionaries in San Francisco. We are going to be starting up a new campus ministry (Southern Baptist) at San Francisco State University. We have a LOT of funds to raise and so we are beginning to develop partners.

I am honestly scared. But at the same time I have this overwhelming peace because I know that this is where God wants us to be. So I am being forced to trust that He is going to provide. This process is humbling as well as faith-building. We are seeking out as many individuals as we can think of to share our story and vision for ministry at SFSU and asking them if they would be willing to partner with us financially.

I think it was the mother in me that fought this so hard. I want to make sure that we are taking care of our children. Doing something that seems so risky would be a lot easier if it were just Joe and I. But we have Sophie Grace and now we have Liam. This is a huge step of faith.

Liam, that sweet little surprise, has actually been another confirmation that we are supposed to stay here. We are getting involved with so many doctors and eventually therapists that it would be frustrating to find new people we trust somewhere else. And, this is a place with amazing resources and support for families of children with special needs. We are in such a good place.

I know this journey of faith will continue indefinitely as we search out partners in our ministry. I hope it always continues and I think it will because Liam is a journey of faith himself. I need more faith. Staying in San Francisco and being mommy to this special boy are stretching and growing and even testing my faith beyond anything I ever imagined.

Restoration

Liam has me thinking eschatologically. I must confess that even as a believer thinking about the end has never been something I liked to do. I am not sure why, maybe because it seems far away and honestly scary. But because I belong to Christ I have no reason to fear. And in fact, my life is being characterized by faith and hope and the end is the realization of the hope we have in Christ.

None of us is whole. God wanted us to be whole but instead we fell. God's desire for all humanity is that we be in relationship with Him. That relationship is made available to us through Jesus Christ. The end is all about being restored to that relationship. Never has the fact that we are not whole been more obvious to me than now.

We may look whole. Some people do not. Some cannot walk or are missing limbs and you can see by their appearance they are not whole. Liam may or may not have a look that shows he is not whole. But none of us is whole. Our wholeness is not physical only, it is so much more.

The geneticist gave us a picture of Liam's actual chromosomes. Insane to see what makes up who we are. We can look at the picture and see what isn't whole. Sure enough that last pair of chromosomes, instead of being a pair, has 5. So I can see that Liam is not whole and what we know about his syndrome tells us that as he grows we will see in his development that he is not whole.

But I've been thinking, what if he's more whole than the rest of us? I wonder if Liam's deficiencies will mean he is always innocent? And I wonder if that is true is he more whole than the rest of us? If he always has a child like faith I think that he must be closer to being in that relationship than the rest of us.

So I am more aware than ever that I am not whole but more excited than ever to be restored. I long for that restoration. In Revelation 21 we read that God will make all things new. A new heaven, a new earth, and Christ-followers restored into the relationship with God that He has always wanted us to have. I believe that individuals will be personally restored. We will be whole.

My sweet baby boy, an innocent soul tainted by the fall, will one day be whole. That is the hope I have through this for him. And I have hope as I eagerly anticipate my own restoration and being made whole. I don't know if we will recognize people in heaven or if those special family and friend relationships we have on earth will be made whole in heaven. It will not matter once we are there, eternally restored to our Creator. But while on this earth, the part of me that cannot fathom eternity, hopes that when I make it there I will see and know Liam in his whole and restored existence.

Mourning

Yes. Mourning. This is something that does not typically go hand in hand with the birth of a child but as I reflect on the last 3 weeks, I acknowledge its presence. Today I took Liam to a doctor's appointment (this is part of our new normal) and as the nurse walked us down the hallway to the exam room I heard lots of laughter. The nurse was commenting on how new Liam is in the world and informed me that the sound we heard was a baby shower. I felt sort of sad. I had a great baby shower this pregnancy...for "Ruthie."

When the doctor placed my baby boy in my arms I felt detached from this stranger. I had spent the last 21 weeks bonding with a second daughter. Both Joe and I felt, for the first day of Liam's life, we were in a way mourning the loss of this daughter we never had. We were thrilled to have a son but completely shocked and unprepared.

Joe and I were aware from hours after Liam's birth that there was a possibility something may not be completely normal. In a way this knowledge enabled us to attach to this baby we had not expected. This knowledge made us feel that we were sort of stuck in a weird place. Welcoming this second child was not going the way we thought it would.

We found out about Liam's chromosome disorder when he was one week old and had 5 days to wait until our appointment with the geneticist. Our life felt that it was at even more of a standstill during that time. Joe and I both felt that we were disconnected. We were mourning. It started at his birth and I think it will continue, in varying degrees, always.

We mourned for the daughter who never was and we mourned Liam's chromosome disorder. I have mourned the loss of bonding with this baby boy for these reasons and because he will not nurse but takes a bottle instead. The big and small both play a role.

But I have to cling to hope. Jesus said, "Blessed are those who mourn, for they will be comforted." (Matt. 5:4) I get that! We may be mourning but I assure you all that our hearts are not broken. Not at any point in all of this have we felt that our hearts were broken. We've been sad and had a moment of hopelessness and devastation but never broken hearted. This is our baby. Our love for him is overwhelming.

The joy and celebration of having a new baby has been tainted with the knowledge that our lives are turning down an unexpected path. But we are joyful and we are celebrating Liam's life. We are mourning but we are comforted. We felt that comfort as soon as it all started while we were still in the hospital. We felt the peace of God and we chose to rest there.

I am so grateful for the way that God is revealing Himself to us. We have the opportunity to experience Him in ways we never have before and I think we would not have, if not for Liam.

I have always looked at the Beattitudes and thought they were talking about the promise of eternity for Christ-followers. They most certainly do but they give hope for life on this earth too. If I have Jesus then I can have this comfort. I do feel comforted and I did not even ask for it. He just gave it. He is my comfort.

I have said it before and will continue to say that there is no possible way we could walk this path without trusting and leaning completely on the Lord. So we will be blessed as we mourn, we will be comforted. Our hearts are not broken, they are rejoicing in the comfort of a Savior and the miracle of new life.