Eleven o'clock has passed and I should be in bed like everyone else. But I'm not. It's been a long day and this is the first moment I've had alone; a moment to breathe deep; a moment to find Him. He is there, always there ready to listen and to console. Thank you, my Jesus.
It's been just about a month now that my Katie has been diagnosed with Multiple Sclerosis. It has been a month filled with all sorts of uphill climbs, blind alleys, smooth sailing then back to rough seas. At least now we have been given a ray of hope; a light at the end of the tunnel. Initially, the neurologist in the hospital presented quite a bleak picture for Katie beginning with his diagnosis. Definitely multiple sclerosis and a pretty bad case of it according to the MRI report. The doctor did not provide her much hope. Katie, newly married and the mother of a nearly 6 month old baby, wondered if she would spend the rest of her life wheel chair bound. "Perhaps." He didn't really know. He would start her on a daily regimen of copaxone, a drug that inhibits the spread of the disease. In the meantime, Katie made an appointment with another well known, highly recommended neurologist in our area.
She met with Dr. Ruben Cintron last week. He spent over an hour with her - chatting, explaining, studying her MRI results and finally, gratefully, offering her hope - showing her the light at the end of the tunnel. He spent several minutes looking and studying carefully each slide of the MRI. He read the radiologist's report. Finally, he said he was baffled. The report presents a fairly grim picture that is actually not reflected in the images. Some of the areas the radiologist referred to as 'lesions' were simple too vague for Dr. Cintron to make that determination. He said, "You probably have MS, you may not, but if you do it is a very mild case." He agreed to treat her with the copaxone as it will help if it is MS and it won't hurt if it isn't. He explained that neurologists almost never diagnose MS immediately after a patient presents her first episode. Normally, the patient is initially diagnosed with transverse myelitis which may be caused by a virus, MS or even Lyme disease. (Although Dr. Cintron is fairly confident it is not Lyme.) After a patient recovers from her first episode, it isn't until a second bout of symptoms occurs that the doctors will then confirm the MS. There may be a lapse of many years before the second episode occurs. Dr. Cintron told Katie that some patients experiencing transverse myelitis take up to a year to recover, but he feels she will be back to her old self in 2 to 3 months. I think if she could, Katie would have done the happy dance!
For now, the solu medrol (steroid) that Katie received in the hospital (a urinary tract infection sent her back to the hospital last week) has worn off leaving her in a severely weakened state. She cannot walk and is worn out by the simplest task. Dr. Cintron is putting her back on a round of steroids that she can take orally at home. In the meantime, with juggling our work schedules and with help from Sam's mom, we manage to take care of Katie's needs and little Isaac's, too. God sent us such a dear, sweet baby! Smiling all the time, hardly ever a tear. He is a constant source of joy amid this trial. And so is caring for my girl. When she apologizes over and over, I say, "Katie, you're my Isaac! I love you!" My burden is light! Sure, I'm tired at times - but that's because my body has limitations. My heart has none.
I see her struggling to take a step or two as Sam and I help her navigate her way from the bedroom to the bathroom and back and I remember and marvel at the words of their marriage vows, "... in sickness and in health." He is a good, good husband. This has been hard for him - he just wants to make it all better. Perhaps, for Katie the most difficult and most sorrowing aspect to this illness is not being able to care for her little one. "Will he forget I'm his mommy?" she wondered tearfully. Not only was it necessary for her to give up breast feeding him, but right now she can't do all the normal things mothers do - diapering, bathing, dressing, taking him for a stroll, or feeding him a bottle. No, my darling, he will not forget you are his mommy! He will always know and you will be chasing him around soon, I promise. And he will grow up never remembering any of this, only hearing the stories shared around the dinner table about the time he and Daddy and Mommy had to go live with Nana and Grandpa because Mommy was very ill. And how Mimi came, too, every day to help take care of him and Mommy. He will always know how very loved he is by all his aunties and uncles, grandparents and friends and by his Mommy and Daddy, too, who love him most of all.
Katie and I have shared beautiful moments over the past several weeks. Thoughts and reflections spoken gently to one another. Quiet conversations about suffering and our acceptance of it; about its purpose; its necessity; its beauty. As my daughter suffers, I'm obtaining a clearer understanding of Our Lady's journey to Calvary, walking with her Son to the Cross and how her own immaculate heart was nailed to that very same cross the moment those nails pierced His hands and His feet. We Catholics call this type of suffering redemptive. It is offered for all the atrocities against Christ; for those we know about and those known only to Him. It leads us to caring about other souls and to see them as He sees them. It is love. Real love.
I'm so glad that, while she is still weak, all is going in the right direction. You are in our prayers. Thank you for sharing.
ReplyDeleteYou do not know me, but I want to let you know you and your family have been in my prayers. Although the circumstances are different, I do know the pain of wondering if your child will remember you are their mommy. When my daughter was just barely 1 year old, I was separated from her for nearly 6 weeks. I saw her only 1 day in the first two weeks, and then an hour here or there after that. My older son was hospitalized with Leukemia. We were blessed that my mom and dad (although divorced) were able to care for our sweet daughter while we stayed with our sick little boy around the clock. I, too, had to quit breastfeeding cold turkey...I cried so much. And I worried. And, my mother tried to reassure me, but i had so much trouble hearing her! That little girl is now six years old and definitely knows who her mama is!!! She also knows she is so very loved by so many. She loves to be told (and retold) the funny stories of staying with Grandma (How Grandpa put both legs through the same pant whole one day and she quietly endured with only a concerned look...How grandma would get up in the middle of the night to feed her vanilla ice cream when nothing else would console her...). She has a very special relationship with her grandma, even though we live 5000 miles away. The heart cannot be divided. It just expands. Many prayers. God bless, Leslie
ReplyDeleteSo beautiful. All of you are in my thoughts and prayers. May God bless and keep you!
ReplyDeleteThis is so, so beautiful. 'The purpose, necessity and beauty of suffering'- This makes no sense at all to the world but our Faith teaches us Truth in these matters. Praying for your Katie and all of you!
ReplyDeleteJust wanted to let you know that this post reunited me with a friend -- Leslie was one of the parents I worked with at USU. She saw my name by checking out your Blog list and we reconnected. See good things are happening -- she is also a Catholic blogger! Thanks so much, Darby!
ReplyDeleteLeslie - I shared your story with Katie - it helps her so much to hear of other women in similar situations. Thank you for your words of encouragement.
ReplyDeleteKathy - Small world! Very cool! Glad you two reunited!
Dear Darby and Katie,
ReplyDeleteSix years ago, I was suffering from the same symptoms, medical testing and MS diagnoses scares that Katie is enduring. Though it was never given a medical name, I had the same experience from all of the MRI's and CT scans to neurological testing and finally the lumbar puncture. The neurologist referred to it as a "virus attacking my spinal cord". My illness came on gradually with weakness on the left side and difficulty thinking clearly, speaking, working and dealing with day-to-day tasks. After three fruitless visits to the ER and three ER Doctors who had not a clue what they were dealing with, I begged to be seen by a neurologist. Finally, after three weeks of suffering, I was referred to a wonderful Dr. who ultimately assured me I did not have MS even though three lesions were found on my brain and two suspect possibilities on my spinal cord. The lumbar puncture proved I did not have MS and my neurologist reassured me I would recover slowly. After eight weeks, I was able to function normally, return to work and to every day life. I had many, many loving people praying for me and I truly believe God healed me and gifted me with a full recovery.
I just wanted to let you know that there is great hope with this illness. I have recovered fully and resume a very active life. Be strong and have faith that God and your loving family and friends will help you through this. My prayers are with you.
L.