Nathan has had a pretty rough January.  He came down with the flu which kept him home for several days from school.  He developed a horrible cough that kept him up for a couple of nights in a row.  He would cough so hard he could not catch his breath and was begging us for help.  It was a horrible feeling not being able to help him. We took him to the Doctor twice over the course of this illness and received antibiotics both times, cough pills and an inhaler.  We are finally starting to see improvement and he is feeling much better. 

A couple of weeks ago we went to see a rehab specialist about mobility issues.   Lately, Nathan has been having a much harder time walking without assistance. He used to use his cane very well and now he doesn’t use it at all.  He use to walk around our house with no problems and now he wants to hold on to someone every time he needs to go anywhere.  Nathan being a very social kiddo loves going out to dinner or to stores.  He refuses to go anywhere because he is “afraid he is going to fall”. He begs for his wheelchair and oncr we agree then he is excited to go!  At first Jay and I were reluctant to let him use the wheelchair too much, but have come to realize that his body is telling us something.  Whether physically or emotionally, we are not sure, but it is our job to listen. The wheelchair we have now is a standard issue from a medical supply store and does not offer proper support.  Hence the reason for the visit to the rehab doctor.  He has an appointment at a wheelchair company to be fit for a custom wheelchair. This was not an ideal thought for us, but again, we are paying attention to what Nathan is saying.

Tomorrow, we will meet with his geneticists for his normal follow up visit.  This one appointment gives me more anxiety than I can express.  This is the doctor that delivered Nathan’s diagnosis.  He is a wonderful doctor who I respect very much.  But everytime I sit in his office it is like traveling back in time to June, 2015.  There are moments were I feel like I blackout and do not even hear what he says. At this point, there is nothing they “do” for Nathan.   It is merely to track his symptoms and progression of the disease. I am afraid it won’t be a fun appointment tomorrow as I can see with my own two eyes what is going on.

Sorrow is the best word I can find today to express how I am feeling.  I had a call from his doctor today to give me a referral to a company that builds ramps into your home.  My son is being fitted for a wheelchair.  We are having to start thinking about things like converting my van and remodeling our home.  If you would have told me this would be our lives 12 years ago, I could never have imagined it.  So today I am sorrowful. Tomorrow, I hope to be better, but am learning how to allow myself to feel what I feel.  I have shoved all my emotions down for so long and put on a happy face that it has taken a toll on me physically and emotionally.  I can’t do that anymore.

Thank you to all of you who continue to read our journey.  To those who share our story so that we can continually spread awareness. To those who send a quick message just to let us know you are thinking of us.  It means more than you know and we are so thankful.


21 thoughts on “Sorrow

  1. Kristin Kholos ( Nathan's dental hygienst ) February 7, 2017 — 7:45 PM

    I love following your story. Prayers to all of you. You are strong! Stronger than you know. Nathan is very lucky to have such loving parents.

  2. Stacey…I wish I had the words to express my deep sadness in watching Nathan’s battle with this horrible disease. I am so sorry for your pain. We are so appreciative of you sharing his story, while I can’t imagine how difficult it must be for you to share. Our community continues to pray for Nathan. He always asks Braden if he is the little guy! It
    always makes my Braden smile. Nathan is a part of our lives. He is such a blessing in all of our lives. Thank you for allowing us to travel your journey with him. Continued prayers every day for you all.

    1. Thank you Julie! We appreciate it so much and know that Nathan is so loved by our community.

  3. CAROL OAKLEY ALLEN February 7, 2017 — 7:58 PM

    So sorry to hear of your sorrow, thinking of you all and sending prayers heaven’s way on your behalf!!! While things in our lives are beyond our control and beyond our understanding, the Lord promises that He will never leave us or forsake us. I pray the love of the Lord brings you comfort and peace in your journey. Hugs from Florida, The Allen Family

    1. We do believe that! Thank you for your prayers.

  4. Thank you for the update, I miss you while I know you have to be busy with more important things than typing. God bless your fortitude and strength. Prayers for Nathan, and for the hearts of your family.

    1. I am sorry, I wish I could update more often, but yes it is busy. Thank yo for your prayers.

  5. Stacey, as always you amaze me with your gift of putting all of us that love your family right into your heart. We feel your sorrow, your pain, your fear but also your constant faith, joy in Nathans triumphs, your unconditional love for Nathan, Madison and Jay and your ability to face each day and deal with what comes. No words can give you what you so desperately pray for but we all wish that our hopes and prayers could do just that. Julius and I continue to pray for strength for you and Jay and that God gives you solace. We love you all.

    1. Aunt Sue, thank you so much for your sweet words. They encourage me. We love you!

  6. Dear Nathan and his family. I would very much like to say some words to you, that would really be comforting to you. But I find no Words, just tears. But I am sharing them with you, And I will try to see some lights in front of you. Thank you so much for being able to share your feelings and thoughts. Love from Mona, in Oslo – Norway

  7. It was not my meaning to be anonymous.

  8. your words bring sorrow to my heart….I reach out to you to let you know you are not alone in this journey…We are all here for you….reaching out to say you are loved beyond measure and it is my sincere hope that in our
    numbers we can keep you afloat..
    continued prayers and Love and Hugs….

  9. My prayers for you and your family, may God continue to bless your heavy heart with his strength and mercy.

  10. I am here for you ALL in whatever way you need. My prayers are fervent and strong for you ALL. God is with you. Allow yourself to feel and express ALL your emotions. Call me ANYTIME!!!

  11. Thank you for sharing your journey with us and allowing us the privilege of following you. Your son’s sweet spirit comes through clearly in these his photos. I’ll continue to pray for him & your family, but for you specifically, Stacy. From one mama to another, my breaks for you; I only wish I could share the burden of your hurt. Bless your sweet heart.

    1. Thank you so much for your kind words. They really do mean a lot to us.

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