Day +177: Tired...Just Tired

It's day +177 for Max and he continues to progress well through the BMT marathon. We were down at the hospital yesterday for our bi-weekly Day Hospital visit and medication infusions and his latest blood counts look good. Based on his counts, progress is continuing in the growth of Ellee's little marrow garden within his body. He is just below normal levels with his red and white cell counts and is doing wonderfully with his platelet count (367 yesterday...as a reminder, it was 6 when we first took him to the doc in January)! The doctors are all pleased with his progress and feel it is just a combination of time, patience and germ protection that we need to get him back to full strength and complete blood counts. All wonderful news. In addition, the cultures of his bumps have all come back negative...no virus, no bacteria and no fungus at this point. So, a dermatologist looked at them yesterday just to be extra safe and we are treating them as if there is some kind of secondary infection but, she thinks that he may just be extra sensitive to bug bites right now. Who knows for sure...we are just thankful that they are nothing more than that! After almost 7 hours at the hospital yesterday, we left feeling tired but, happy and grateful, as usual.

Obviously, things with Max's health are moving along just swimmingly. The difficult part now is that we are all just tired. As I referenced in my post last week, we are all increasingly tired of this lifestyle. We would like the happy times back. We are all doing our best to remain upbeat and positive, knowing this is all temporary but, it is taking its toll on all of us and wearing us down somewhat. As I have said to many people, my life, in particular, was quite difficult before I had a child with a life threatening illness. Having three kids in six years was keeping me busy...now add in the worries and work associated with Max's illness and I am just wiped out. Matt feels the same way. His job has gotten increasingly challenging over the past few years, as has our life at home with the three busy youngsters. Now he is feeling the pressure of the bad economy at work (not to mention that I am not working right now either) and is coming home to three energetic kiddos that have been stuck at home for months! It's a lot to handle for both of us. Then we added Spud into the mix and while he has brought lots of joy to all of us, he is also no picnic! As everyone knows, puppies are work...lots of it! He is great at causing lots of trouble, especially each morning. His favorite thing to do is to steal a paci from Ellee and then run out the dog door so that I have to chase him around on the deck and in the yard to retrieve it. Fun!

To top things off, we have had an extra rough week with Ellee. All kids go through phases and maybe because her second birthday is fast approaching, she is going through some kind of preparation for the terrible twos this week! We aren't sure but suddenly, as of last Monday, she doesn't want to cooperate with us about sleeping. She has cried and thrown a temper tantrum for every nap and bedtime this past week and has been up at least two nights during the middle of the night crying and wanting to "rocky, rocky" in the rocking chair. Last night was the clincher. She woke at 2:56 am and started having one of her fits, screaming and crying for us to "rocky, rocky" or "go downstairs". This went on for two hours, in which she managed to wake up Spud who howled like crazy from his crate down here in the family room. Such fun! Matt and I finally got back to sleep about 5:00 am, only for Max to come in at 6:00 am, ready to go for the day! Needless to say, we are both exhausted today.

Dealing with the normalcies of child rearing right now is extra challenging. Did I mention, that we are tired? We feel like we are also recovering from Max's bone marrow transplant in some way. I think the months of sleepless or restless sleep nights have caught up with both of us these past several weeks and our bodies are now trying to make up for lost rest time. We try so hard everyday to focus on the positives within this situation and to make the best of it. We just have to admit, however, that it's tough and sometimes it just sucks. It's a struggle and the biggest challenge of our lives. We talk all the time about our hopes for the future...a day when this whole experience is just a "line on the resume of our lives", is how we like to think of it. We are confident that time will come and that we are strong enough to get through this challenge. Everyday we become a closer and closer team as a family and we know that will be everlasting.

Max is doing better emotionally with everything. We were discussing the upcoming Holidays on the way home from the hospital yesterday and he asked me if he would be able to play in the snow this year as he couldn't last year because his counts were so low. I told him that he would be able to, which made him very happy. Then he told me that his sickness was the worst present he ever got for Christmas. While he is doing much better in terms of adjustment to his current life, he still struggles with it and wishes it never happened, as do we. Of course we would rather that none of this ever happened but we know that we can't change it and we are doing our best, all of us, to get through it. We all ask ourselves and God "why" and we try to imagine all of the good reasons "why" this had to happen to Max. I found the following on a posting of a fellow BMT mom and I'd like to think this is part of the answer:

THE CHOSEN MOTHERS
By Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. Did you ever wonder how mothers of children with life threatening illnesses are chosen? Somehow I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

“Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard.” Finally, He passes a name to an angel and says... “Give her a child with a life threatening illness.”

The angel is curious. “Why this one God? She is so happy.”

“Exactly” smiles God. “Could I give a child with an illness to a mother who does not know laughter? That would be cruel”

“But does she have patience?” asks the angel.

“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it.”

“I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has its’ own world. She has to make it live in her world and that’s not going to be easy.”

“But Lord, I don’t think she believes in you”.

“No matter. I can fix that. This one is perfect. She has just enough selfishness.”

The angel gasps – “Selfishness? Is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see: ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side”.

“And what about her patron Saint?” asks the Angel. His pen poised in mid-air.
God smiles. “A mirror will suffice”.

Aaaaaaaaaahhhhh...Matt and I (I know it applies to Dads as well) just need to read this everyday right now and know that there is a larger plan in all of this and be grateful for the wonderful things it is teaching us and doing for our family.

We are so thankful for all of your continued support and love. Max's Mighty Mob remains at the top of the fundraising list for the Cincinnati Walks for Kids event with $6,242 raised and 70 walkers! Incredible! I just ordered awesome t-shirts for everyone walking today from a wonderful charity organization here in town, the Aubrey Rose Foundation (http://aubreyrose.org/). Part of our t-shirt costs are also going to a good cause! I'll be sending a note out soon to those of you that have signed up to walk with more details regarding the upcoming big day. If anyone else still wants to join us, please go ahead...we would LOVE to have you.

More soon...

Peace and love,

Kristi (and Matt, Max, Alex, Ellee and Spud)