May 16, 2010

Sorry I haven’t written in about 2 weeks.  I should really get on here and share more.  It is insane to me that today marks the fifth week that Joshua has been gone.  I still think about him all the time.  I started work two weeks ago and they have done a GREAT job of keeping me busy that is for sure.  Its funny because no matter how busy I am, he is always right there with me in the back of my mind and sometimes in the front of my mind.  But the world expects me to just move on so I do.  I do it not for the world but for my family.  I feel weird still about being back to work.  I should still be in the hospital fighting for Joshua.  I guess we are past that part of our lives now but it feels like I should still be there.  My mind and heart have not come to terms with the fact that my son is gone and that I don’t have to go back to the hospital.  That is not what I even want.  If I did have to go back to the hospital, it means that Joshua is still here.  Reality sets in and so I have this crazy empty feeling.  Something is missing and that is how I feel.  I get these strange feelings similar to boredom almost every day.  Nothing feels right.  It is almost like I’m a zombie just going through life because I don’t know what else to do.  Mother’s day was last Sunday.  Talk about a tough day.  I did everything that I could to pamper Kelli but it was still very tough.  After church and lunch, we went up to the cemetery to see Joshua’s grave.  We sat in the grass and talked about him for over an hour.  It is so weird to be there because Joshua shouldn’t be.  I mean he was a sick boy and he did pass away but I don’t want him to be there.  I know he is in a much better place than any of us could imagine and I am thankful for that.  He doesn’t have to suffer on this life.  He would have had a life of endless pain and suffering.  He would have been ridiculed for his Down Syndrome.  He would have had continuous doctor appointments and possibly surgeries.  So when I think of his life in that way, I am glad God took him home.

Where I get caught up is that I wish Joshua would have been healthy.  I see the things Matthew is learning and doing, playing with me from the time I get home from work to the time he goes to bed at night.  This is tough because I want my two boys tackling me and wrestling with me.  I want my two boys to play sports with and I want Matthew to be a big brother to Joshua.  All that is not going to happen and that saddens me.

The other thing is that I don’t know what to do with my life anymore.  I want God to show me what he wants for me.  I feel so lost after all this happened.  I know for sure that I am going to get involved with CHERUBS organization and maybe be the state representative for NM since we don’t have one.  I also know that on average, UNM Hospital sees 6-7 cases or so a year of CDH and I want to be able to be there for these families.  I want to get heavily involved with UNM NICU on this and be an additional resource for parents.  I also want to be involved at the Center for Prenatal Development so that I can be a resource to expectant parents.  This is even more necessary so that the parents can prepare by studying CDH and be “ready” for having a child with CDH.  I want to be there for parents because that is exactly what we needed and got through CHERUBS but not locally.  I don’t know when I will be ready for such a task but I am definitely wanting to do this.  It is insane the amount of knowledge I gathered through all my studying and I need to use that for others.

So, right now I am at a cross-roads in my life and in my grieving.  I know that God is completely in control and although Joshua’s passing is horrible and nothing can make that better, God has allowed this to happen for His purposes.  I will never fully understand for what purpose but I also know that God was with us in that hospital room with all of us.  He is here now with Kelli and I as we are walking this path of the grieving parents.  I want to help God’s purpose in letting Joshua pass away and I want to know how.  I also know that I have to be patient because I want to make sure that I am ready for such a task.  I know that I am too weak to handle certain things and so I have to make sure that I will not freak out or go into a deep hole or something because of a reminder.  I am a very driven individual and would like to get the show on the road so to speak but I also have to remember that I want to be strong for the other parents as well.

Anyway, I will be receiving the autopsy report on Joshua in the coming weeks and once I have everything together, I will put up a new post that explains some things that have been very disturbing to me since Joshua’s passing.  Like I said in my last post, I don’t think things would have turned out differently but it is some stuff that just really irks me when I think about it.  This is another reason that I must get involved at the UNM NICU.  I want to push the docs to become the best they can, not for themselves but for the children that are stuck in those little beds doing all the suffering.  It is all about them and sometimes I think that doctors forget that very important fact.  Until next time…


4 Responses to “Craziness”

  1. Julie Huizenga said

    Jeff and Kelli,
    A cousin gave me a little devotional book titled “Jesus Calling”. It is written as if Jesus is speaking to you. Here is May 14th’s entry.
    “I AM A MIGHTY GOD. Nothing is too difficult for Me. I have chosen to use weak ones like you to accomplish My purposes. Your weakness is designed to open you up to My Power. Therefore, do not fear your limitations or measure the day’s demands against your strength. What I require of you is to stay connected to Me, living in trusting dependence on My limitless resources. When you face unexpected demands, there is no need to panic. Remember that I am with you. Talk with Me, and listen while I talk you through each challenging situation. I am not a careless God. When I allow difficulties to come into your life, I equip you fully to handle them. Relax in My Presence, trusting in My Strength.” Taken in part from Luke 1:37; 2 Cor 12:9.

    Daily meditating on God’s Word, and listening for His still small voice, is the only way to find peace and strength for each day. Trust in His promises and live by faith. God’s children see only the back side of the tapestry with all it’s unfinished threads still hanging loose. God sees the finished side! Hugs to Matthew. He was only just a baby when I saw him at Hans and Blanca’s wedding.

  2. Jennifer Tenney said

    Many prayers for your family! You guys are on my mind often as Joshua’s fight really touched me. He is a special angel. I was just at the Cherubs conference this weekend and I met many families of both survivors and grieving families. We talked about how much having support meant to us, so I think you plan is magnificent and wonderful!
    Mom to Dakota 12-25-2008
    RCDH survivor

  3. Jason Frame said

    Jeff, I’m really glad to hear from you again. I was wondering how you all were. I hope you are doing well. I have not only used Joshua but you and yours as inspiration for our Parish here in Socoroo. San Miguel is a small but very devout community. I wrote in our weekly bulletin about the struggles that have given you a challenge lately. I am very pleased that you are doing something positive to keep him alive. He lives in the hearts of all that have heard his story. The is a book, I know what you might be saying,A BOOK?, well yes a book on grieving with a spiritual outlook with our Creators words to comfort I will get you that information in case. Well hang in there. Denise, JJ, Michele and I as well as everyone I know has you and Kelli and your family in their prayers.

    Your Brother In Christ,

  4. nicolle said

    It was very helpful for me to get involved with others (CHERUBS) who knew what I was going through as well. I didn’t find CHERUBS until May of 09 and Kasey grew his wings in Dec 08. I think it is great that you want to get involved local support is very important!

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