A-H-H-H-H!!!!!

Kim is sitting here telling me (once again) how I should do something, namely posting more ofter so it would "become intuitive". Whatever. I will try to post as the mood hits me. I'm in the mood today.

Actually, I have been feeling quite irritated about a lot of things lately. And frustrated also I think.

As of today, we still do not have Mathew’s death certificate. It has been four-and-a-half months since he passed away and the state office is still not finished fixing the stupid certificate! Then I start thinking about the idiot at the hospital that printed Matthew’s name on the certificate wrong in the first place and I start to get more than irritated, maybe a bit angry.

I have also been stuck on the Social Security benefits. Why can’t we get Matthew’s past benefits? The judge ordered the benefits paid, but because he died before the bureaucrats got around to processing his paperwork he isn’t entitled to the past benefits he was owed??? Who is at fault here? Why should our family have to deal with this? Why should I have to deal with this? Is there anybody that gives a darn about justice in this case and if there is – where are they and why can’t I find them?

These are some of the simple grief things that I get to deal with on a regular basis.

It is difficult enough to wake up everyday and know that you will spend the rest of your life without being able to look at your child or hold his hand in a simple prayer or have one more hug…. But I just don’t understand WHY these other things are also happening. And today I am more than irritated, more than frustrated – I am angry. And I am so hurt.

Here we try again!

This is my upteenth time at getting a post going. Finally with Kim's help I am ready to try this process.
I want to use this forum to reflect on different challenges that we encounter in our lives. And hopefully - offer someone else hope.
Welcome to our journey...

April 16, 2006 at 04:27 PM EDT

Dear Family & Friends,
Although we have not been able to contact each of you directly, many of you have been asked to keep our family in prayer over the past few weeks and to lift Matthew up in prayer especially. You may be aware that Matthew has been back and forth to the hospital for various problems these past few weeks and has had to receive several blood and platelet transfusions. This letter is to explain what has happened and the direction we are going.
First of all, Matthew was born with a genetic birth defect called Shwachman syndrome. This syndrome is distinguished by pancreatic insufficiency, hematologic abnormalities, including increased risk of malignant transformation, and skeletal abnormalities. As an infant, Matthew showed early problems of failure to thrive, feeding problems and recurrent infections. He also has the short stature, developmental retardation, and bone marrow dysfunction common to this genetic disorder. As a result of the bone marrow dysfunction Matthew has had low levels of white blood cells (neutropenia), platelets (thrombocytopenia), and red blood cells (anemia) throughout his life. He has been treated for these various problems as symptoms arose.
After a long weekend (3/5/06) when Matthew seemed to be very tired and became quite pale, we brought him in to see his doctor (3/8/06), fully expecting to hear he had the flu. Instead we found out that he had dangerously low blood counts and would have to go to the emergency room (3/9) and then be admitted to the hospital (3/10) for blood transfusion and platelets. Two days (3/13) later we returned to the hospital for further tests. These blood tests should a large number of “blasts” and the doctor began to talk with us about pre-leukemia. A week (3/20) later Matthew underwent a bone marrow biopsy and aspiration. One week (3/27) after that we found out he has been diagnosed with Myelodysplasia (a secondary bone marrow disorder). Two weeks ago (4/5) we went in for what we felt was becoming a routine blood test and additional testing on Zachary for a blood type match, and found that Matthew had pneumonia. We spent 3 days in the hospital with that. This past Tuesday (4/11) Kim and I met with the BMT (Bone Marrow transplant) doctors. Wednesday Matthew and I went back to the clinic and he received another transfusion of platelets.
So, what does the future look like? This week we go back and the doctors are considering placing a nasogastrostomy (NG) tube to help “beef him up” for future BMT, probably doing the transplant sometime in early June. In the meantime, Matthew will continue with weekly lab tests for probable blood transfusions and platelet transfusions. He is also being tested to compare his blood results to Zachary on a genetic level so that Zachary can be the bone marrow donor. Along with his daily meds routine, we are giving Matthew daily injections of G-CSF to stimulate his white cell production and battling asthma, hay fever, and any other more serious infections.
With all this in mind and thinking of the future, we have decided to have Matthew graduate this year. He will graduate and receive his diploma on May 26th. Then on May 30th we will celebrate Matthew’s 20th birthday.
God bless you for your love, support and care.
- Kim, Pat, Matthew, Zachary & Stephanie

Life, Trials, and Mark Schwebes

My goodness! What a long time it has been since I was able to write anything down. I could not figure out how to post until I finally got Kim (my husband) to sit down with me today and go through this step-by-step. Told you I was computer illiterate! :))

I decided that I really need to make some comments about what is on the web regarding my brother, Mark. I have read Jim Greenhill's posts about his book and the many comments folks are making on that. Then I found another site set up as a memorial to Mark. I have to say that one irritated me, and I am not sure why yet. I'll have to explore those emotions.

I have been doing a couple of interviews for the Fort Myers tv stations on "10 Years Later" and a lot of emotional stuff has been dredged up. I wonder why so many people feel like they have some sort of ownership of Mark's life? These are folks who have not really even tried to reach us , his family, in all these years. How about a letter to us expressing sympathy? Sharing their memories of Mark and what he may have meant to them?

Add all of those emotions to the emotions of watching what my son is going through as he battles for his life - well, some days are just harder than others.

"Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go." Joshua 1:9