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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

Would our life be different without “special” needs?

I heard a question this past week that has made me look within several times and ponder the same question as it relates to my life. The question was: “if your life didn’t include (insert trauma, life changing event, illness, etc.) how would you think your life would be different”? For me and my family it made me ask myself the question “if we didn’t have Matthew or Isaac or both, how would our life be different”?

Notice the toys all around...BOX!

Notice the toys all around…BOX!

This brought up a great conversation between Theresa and me as I asked her the same question. We both had the same answer. We both have never really thought of how it would be different. We have never really dwelled on what could have been. We both agreed though that we would not be the people we are today without the experiences we have had, good or bad over the past 14 years since Matthew was born. We both agreed that our life looked quite different from the “norm” when we had just four kids. With the addition of Isaac…it is now on a whole new level of different. Before, we dealt early on with some medical, mostly though with Matthew it has been behavior issues and a feeling of vigilant guarding for his safety. Isaac has added a whole new level with acute medical needs. I guess you would say we are well rounded now!

In preparing some text for my upcoming book for editing I was reviewing some past posts. I found the following one from almost 3 years ago. It was about 1 month into Isaac’s 3 month stay in the NICU. I thought it was relevant to the feelings I have been sharing…here are some of the paragraphs I wrote:

For those of us who pray, we quickly realize that prayer is not just a request list of things we need or want…or think we need and want. We have spent many hours and days, along with you praying for our little Isaac…praying for what we think we need and want…I was shown a little perspective in a book I finished this past week titled: The Book of Man: Readings on the Path to Manhood – William J. Bennett. A great book for fathers and mentors to boys and young men on the lives of famous people and not so famous people about what it means to be a real man. A real man of integrity, faith and one who leaves a legacy of worth behind when he is gone from this world. I was taken aback when I read this prayer included among the stories that was hand scribbled and found in a pocket of an unknown Confederate soldier at the end of the Civil War. It really made me think about what we pray for and what we think we should expect in return:

I asked God for strength, that I might achieve;

I was made weak, that I might learn to humbly obey.

 I asked for health, that I might do greater things;

I was given infirmity, that I might do better things.

I asked for riches, that I might be happy;

I was given poverty, that I might be wise.

I asked for power, that I might have the praise of men;

I was given weakness, that I might feel the need of God.

I asked for all things that I might enjoy life;

I was given life, that I might enjoy all things.

I got nothing I asked for but everything I had hoped for.

Almost, despite myself, my unspoken prayers were answered.

I am, among men, most richly blessed.

The Book of Man: Readings on the Path to Manhood, William J. Bennett

Two lines echo in my head from this written prayer…I got nothing I asked for but everything I had hoped for….and, I am, among men, most richly blessed. This is where we are at right now in our early journey with Isaac. I know this prayer is serene and calm…In reality, here is what it really looks like to us; even among the meltdowns each of us experience at different times during the week, the times we cry out and wonder where God is, the times we just cry because we have been strong for too long…we are still richly blessed. We all have had the time to just sit in the dark with a tiny 5# bundle on our chest to listen and watch his tiny chest go up and down. And, to experience what is happening in and around one of the smallest of the new NICU rooms, room 338. What we see happening is that Isaac’s room continues to be a hub where nurses that he has had along the way stop in to see how he is doing. We share conversations of how good God is and stories of how our church family is taking care of us, our home and our children. We hear how this blog is being shared and Matthew and Sarah Anne’s fan base is growing as they have become staples around the third floor (and the gift shop). Where Hannah and Megan are referred to as the “big sisters” and we hear nurses talk about how they could only hope that their kids will grow up with the same heart, sweetness, beauty and integrity. I got nothing I asked for but everything I had hoped for…I am, among men, most richly blessed.

Yes, we are frustrated with questions not being answered…we are tired, physically and emotionally as we have been living a bizarre life of 10-11 hours a day divided between mom and dad at Isaac’s bed and still trying to take time to be a family. I had a picture in my mind this week while I was driving…I was thinking about how it may have looked when Moses was leading God’s people across the Red Sea. I imagined myself walking forward but my head constantly looking side-to-side and seeing a wall of water being held back by the wind. I imagined those swirling winds above me and maybe feeling a spray of water once in a while. I see it, but I don’t believe what is happening. What if the wind just stopped? What if I don’t have enough faith in God to keep the water from surrounding me? All we can do is keep walking, keep moving forward and not think about the physics of how the water is being held back or how long it will be held back…we just need to trust that God is God and his word is his word and he will never leave us to drown.

What to pray for this week: decisions and a plan. We will be meeting this week with all the specialists and doctors at one time, in one room to discuss what to do next. Isaac’s issues at this time, before we can move on to any other thing is for him to be able to keep an airway open, period. We will look at some short-term solutions from mild intervention to more drastic such as a trachea tube. There has even been some talk about transferring Isaac to Mott’s at the University of Michigan. This would put us at a whole new level of a “family disrupted”, but we are willing to do it if it means moving forward.

Ultimately, please pray that God’s will is being done, that we will fulfill the reason God has chosen us to be here, that we continue to be strong, even in our own struggles to reach out to the many hurting people we run into here at the hospital…families who God puts in our pathway that we end up talking with and we pray and we cry for. Moms who are doing this on their own, teens and other siblings who are acting out, not knowing how to handle the emotions and fears that surround them as they deal with turmoil in their lives. Families who have been here for many months, even moving to Grand Rapids to be close to their child. Also pray that our little room, room 338 will continue to be a safe harbor for staff and doctors who stop in and chat, not knowing why they are drawn to Isaac’s room. The door is always open…

I really can’t add more than what I have already shared. Would our lives be different? We really don’t care. We still have occasional meltdowns. We still cry out at times wondering where God is while cleaning smeared poo off the wall for the third time on the same day. We are content with being a conduit for God to show his power, his mercy and his healing. Even if the journey is hard. Even if the journey sometimes is painful. We have been called to this. We are richly blessed.

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