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I read the following article:  A past enveloped in love, a future that’s uncertain… and was brought back; back to the perinatal clinic. 

I am sitting with Greg in a small conference room crying.  I am appalled by the cold, icy eyes of the doctor who said, “You don’t have to do this…”.  

My mind is foggy, “What? - I don’t have to do this?  This is my life.  I have to do it.”  

If you asked me to recall the entire conversation, I couldn’t do it, and that is odd for a detail person like me. 

But every so often I remember more.  I read this article and remembered, “Your baby will most likely outlive you.  We don’t see a serious heart defect and the life expectancy for people with Down syndrome is increasing.”  

My mind is racing.  I am grief stricken.  I want to run away.  I breathe, I go home, I cry, I pray …

and God says to me, “Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.” (Joshua 1:9)” he continues, “For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future.’ ”(Jeremiah 29:11)

Gradually, I listen, I believe, and I allow Him to comfort me.  It happens slowly and it happens in pieces. 

I suppose it is still happening, but I am no longer afraid of my future or of my daughter’s future.  I now enjoy meeting older children and adults with Down syndrome; it used to be scary.  Elly is 3.

I am busy living today and I am busy enjoying today.  Elly brings so much love and joy to our family, it almost makes me burst.  I can’t imagine life without her. 

In fact, I think I am so busy living and loving today that I almost stopped worrying about Elly’s future.  I almost stopped until I read this article.  

Yup, Elly will probably outlive me.  Elly is in great health.   She is also blessed with wonderful and loving siblings, but what do I expect from them?  I don’t know, I really don’t, not yet.  I don’t know what the future holds but I do know who holds the future: “the Lord our God will be with us wherever we go” and “He has plans to prosper us and not to harm us, plans to give us hope and a future.”

Thanks to Seattle Times reporter Maureen O’Hagan for reminding me, but I’d like to change the title of her article to, “A past enveloped in love, a future that’s certain with God”.

The Article:

James Jensen considers himself a “ladies’ man,” even though he’s never been on a date.

He likes to say he’s “retired,” although he’s never had a serious job. When a cashier asks for money, he responds, “You’ll have to talk to my banker.”

The banker in question is his mother, Delores Jensen, who’s been his staunchest defender, his biggest fan and his loving caregiver for 47 years. And James, if it isn’t clear by now, is a charmer.

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Thanks for your thoughts and prayers.  We are home and things went pretty well.  He was able to do most of the procedure by dilating her ear canal which was good and means she only has a small incision behind her ear from where he grafted some fascia - he also grafted some skin from within the ear canal.   She had started to develop a cholesteatoma, but luckily it had not started to erode or damage the middle ear bones.  He grafted her very large tympanic membrane perforation and cleaned out all of the cholesteatoma. 

The hard part will be the recovery.  We really need the graft to “take” so her hearing will improve.  Her recovery is 2-4-6; 2 weeks of no bending, lifting or straining; 4 weeks of no head upside down, bumps, rolling or contact sports; and 6 weeks of no water activity (careful bathing with vaseline cotton ball in the ear).   This will be interesting with my very busy and active girl!  He also examined her left ear under sedation and that perforation is also enlarging, so when we get through with this one and get a graft that takes; we get to start over on the other side.  About 6 weeks after each operation we will assess her earing and continue to examine the need for amplification (hearing aids).

Thanks again for your thoughts and prayers.   Here are some pics of Elly in recovery, her bunny helped her feel better!   She isn’t liking her packing and head gear much either…  

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Tuesday, April 29th Elly is having a Tympanoplasty, also called eardrum repair, to reconstruct a perforated tympanic membrane (eardrum) in her right ear. They will do the procedure post auricular, from an incision behind her ear. They will inspect her middle ear space and if there is no evidence of cholesteatoma or other ear disease, the edges of the perforation are cleaned and a tissue graft is placed under the perforation. Usually, the tissue graft is the outer layer of the temporalis muscle (the muscle used for chewing that you can feel in the side of your head).

Please keep Elly and Dr. Levinson, her ENT, in your prayers. The procedure is scheduled to occur at 9:30 a.m. CST.

We have known of her bilateral ear drum perforations for a year now and we were hoping not to have to repair them until she was a little older. At a recent ENT check, it was discovered that her right perforation (previously the smaller one) had grown exponentially and become marginal. The perforations have decreased her hearing causing a conductive loss and she has a hearing aid for her left ear. A marginal perforation is more concerning because it is less likely to heal and often lead to acquired cholesteatomas. If untreated, a cholesteatoma can eat into the three small bones located in the middle ear, which can result in nerve deterioration, deafness, imbalance and vertigo.

I will update as soon as I can. Enjoy these photos of Elly with her “button” and keep her in your prayers.

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