As I'm sure you can imagine, I have been struggling with knowing what our future will bring for our precious Isabella. For months and months, the same questions bounce back in forth in my head that cannot be answered... Will she ever learn to talk? Is school the best thing for her? Am I qualified enough or know what I'm doing to home school her? Shouldn't she have more therapy than once a week? Do I need to go full force with sign language? Is sign her only option at communicating?
Jack has always been very positive with his reassuring "she'll talk". It wasn't until tonight that I heard him say for the first time that he is really struggling with the thought that Isabella may never learn to speak. Now obviously she's vocal, just non-verbal. There are words she'll attempt to say and we will understand her, but no one else would.
I have been discussing Isabella's situation with her speech therapist and there are multiple issues resulting from her chromosome deletion. The impact that hearing loss has on speech development, resonance disorder secondary to velopharyngeal insufficiency, and possibly apraxia. She is not officially diagnosed with apraxia, but she certainly shows signs of it. This is an actual speech disorder, rather than just a delay. Jack and I watched some videos of children with apraxia of speech and see that it may be a reality that Isabella will be unable to speak or at least obtain "normal" speech.
Almost 2 months ago I prayed a novena to St. Therese. I needed peace and direction on how to raise and educate Isabella. She is a quick learner and very smart, but being nonverbal has a way of masking it. On day 7 of my 9 day novena, Jack said "I think we need to be more serious about teaching Isabella sign language". I saw that as an answer to my novena. Jack and I have been holding out hoping there will be a huge change with speech that we've been a little lackadaisical with sign language. Instead of hoping and wishing things will change, I realized I need to accept this as our family's normal and do something to make the best of the situation and our future. I never saw a rose and honestly felt a little discouraged. I've always wanted that sign to truly feel my prayers were answered or heard. However, we knew in our hearts this was the direction we needed to take.
Then we found more mold in our house. And Ava got a cold. Jack had to spend every night tearing up walls to try and locate where the mold was coming from. We went to a healing Mass that night which was perfect timing since we were again questioning why we are constantly faced with these challenges. Thankfully, Jack has located the mold and it is out of our home. He is almost finished repairing the damage. Time got away from us, yet again.
My Mom gave each of her kids the book 33 Days to Morning Glory which is a do-it-yourself retreat. We started it on November 5th so that it ends on December 8th, Feast of the Immaculate Conception. On day 7, I was really affected by a paragraph quoted from St. Louis de Montford...
[I]t is quite true that the most faithful servants of the
Blessed Virgin, being also her greatest favorites,
receive from her the greatest graces and favors of
Heaven, which are crosses. But I maintain that it is
also the servants of Mary who carry these crosses with
more ease, more merit, and more glory. That which
would stay the progress of another a thousand times
over, or perhaps would make him fall, does not once
stop their steps, but rather enables them to advance;
because that good Mother, all full of grace and of the
unction of the Holy Spirit, prepares her servants'
crosses with so much maternal sweetness and pure
love as to make them gladly acceptable, no matter
how bitter they may be in themselves...
My devotion to Mary began when we first started learning about Isabella's condition. The hardest part for me was not wanting my child to suffer and wondering how her life will be in the future. On one of my darkest days, an image of Mary at the foot of Jesus's cross came to mind. Who better to relate or look to for inspiration than Mary, a mother who saw the worst done to her child. This retreat has opened my eyes again. I recently did away with all the distractions in my life that were unnecessary to allow me to fully focus on what Isabella needs.
On Monday, during nap time, I started writing down all of the signs Isabella knew and all of the signs we have learned but do not always remember. I wrote down all of the signs from Signing Time DVDs and came up with a plan to consistently learn new signs. I'm excited because I know how thrilled Isabella is to express herself through sign language. As I'm sitting at the kitchen table, I gaze out my back window and notice a branch from our neighbors rose bush coming straight through the middle of our fence, with one single rose. I immediately thought of my novena to St. Therese even though it was months ago. I smiled and felt so much peace. The next day I look out at that branch and the rose was gone. Thank you God for this sign from Heaven!
If you've made it this far, here's my plan! I'm getting together the signs that I have yet to post on the blog so you can familiarize yourself with what Isabella has and is learning. Starting the first week of December, I will post a daily "Sign of the Day!" first thing in the morning Monday-Friday. We can use the weekend to recap and "perfect" these signs. This will keep me on track with teaching Isabella sign words as well as keeping you consistently informed. Keep your eyes on the blog or sign up to receive an email once there's a new post! It's about to get serious {smile}. Love you all and please continue to keep Isabella in your prayers.
St. Frederick, St. Drogo & St. Jude... pray for us.
