Friday, March 27, 2015

Hold On to Every Moment

I was driving home from a late night Target run the other night (yea! My happy place) and I was just thinking about life-what we envision it to be and what our reality becomes. It’s crazy to think that we plan out the many details of life in our heads, (marriage, kids, house, job, etc) but there are no guarantees and we are really not in control of what happens. That is one "big" thing I am learning through this experience with Lily's diagnosis. I am not in control-no matter how much I will SMA to go away, I can’t change that it exists and that our family is dealing with it. That is a HARD reality to accept. We all like to be in control.  Its hard to let go, especially when you see your child hurting or missing out on experiences you want them to have.  I don't believe Lily has physical pain due to SMA, however, I believe, as she is getting older and smarter, she is starting to realize her limitations, and recognizing what others can do and she can’t. I do believe she is starting to experience some emotional/mental distress or frustration because of those limitations. I can see it in her eyes when she wants something close to her and she can’t reach it or when I give her something to hold on to and she can’t grasp it because its too heavy for her little fingers. As her mom, it is heartbreaking to watch and what I despise most about this disease. And it won’t get easier as she gets older. But we can do everything in our power to make her as comfortable as possible and manage this disease as best as we can, helping her to focus on what she CAN DO. We can't control this disease and where it may lead our family; we have to let go and trust, knowing that His plan is far better than ours. Easier said then done…. a daily struggle. Thankfully we can remain hopeful as they run trials to test various methods of treatment for SMA children and hopefully someday, a cure. Until then we pray, hope, and hold on to the moments.

Even though I was super tired and had a long day I always look forward to getting out of the house for a few hours. It may sound silly, but when your time away is very limited, getting out to even get groceries can be "exciting". And going to Target can brighten anyone’s day ;-) Just a few hours break can help me refuel and get away from all the responsibilities that await me at home. It helps me to refocus and come home a better, less-stressed mom.

When we lived in Ankeny, I was able to run errands all the time and have anything I needed just minutes away.  Of course, after Lily was born that changed because having a baby makes it a little harder to get out and about. But since her diagnosis and progression of her SMA, she requires frequent monitoring and use of a lot of equipment (including her suction machine, cough assist machine, bipap, pulse ox, feeding pump, etc.) which makes it a bit more difficult to get out and about. During the winter months and flu season we really have to limit our exposure to germs and illness as well. So when I am able to get out (especially on my own,) I feel like it really helps me appreciate it more and appreciate things I took forgranted before; things that once held significance don’t anymore. After learning of Lily’s diagnosis last year it really put things in perspective and helped us to focus on what was truly important.

I don’t think I’ve experienced so many ups and downs in my lifetime as I have since Lily’s diagnosis. I had what I thought were bad days). But I didn’t know what a bad day was until SMA. Never did I know what the depths of pain and despair felt like until Lily’s diagnosis and bleak prognosis. It made my heart ache so badly because I didn’t believe I would be able to watch this disease unfold while caring for my daughter.  Thankfully after the shock wore off and overwhelming feelings that followed her diagnosis, surgery, etc., things have slowed down and become a new normal for us. Yet, I can feel such a range of emotions in any given day. Some days I wake up feeling thankful, blessed, and happy to be able to be home with Lily and take care of her. We read, draw, color, do crafts, watch cartoons, and snuggle. A moment later something happens to remind me that SMA is always there, lurking in the shadows. Feeding issues, low sats alarm, reflux, fussiness, or simply a little girl on TV twirling around in a pink tutu. Things go from high to low instantly. I feel sad, mad, frustrated that SMA has chosen her. That should be Lily. Then I look at her sweet little chubby cheeks and toothy grin and I’m reminded that there is a plan for Lily, for her life. She has taught us more about what love and strength are in her lifetime than we will ever know.

But even in joyful moments there is often grieving; grieving for things that are lost because of SMA. Things that Lily is not capable of because SMA has robbed her of strength. She is a toddler and she wants to be independent; she wants to do things by herself. . Thankfully, she can do some things by herself with the help of the angel arm which allows her to move her arms to do activities like paint, draw, and play with toys.  I admire her ability to be content and the personality that she has. What this girl lacks in muscle, she makes up in personality for sure.

Our little toddler is starting to get more of an attitude. She is teething so naps have been lacking lately.  I went in to lay with her the other day because she wasn’t sleeping but she just wanted to talk and play. I would close my eyes and every time I opened them she would be smiling or raising her eyebrows up and down, rolling her eyes. That girl makes me smile. (And also makes me a bit frustrated when she never wants to sleep.) Hoping its just a teething thing or phase that is soon to end!

Otherwise we are thankful that our family has been in great health over the winter and we have avoided any hospital stays-praise the Lord. Hoping it continues and we can get out and enjoy some warmer weather soon!  I was thinking that it might be nice to add a few specific prayer requests at the end of the blog because I know Lily has a lot of prayer warriors and sometimes its helpful to know what to pray for.

Please pray for the following: continued strength and health for Lily, April 9th we travel to Iowa City for an appt with her pulmonologist and also to get her g-tube switched out. Please pray that goes well and she tolerates the procedure well, also pray for continued success with feedings. We were having some trouble with reflux for some time but it seems to be meds that may have caused the issue. Pray that is no longer a concern and we can avoid any further reflux or aspiration concerns. Also, please pray for good naps to return-this mom is tired and her patience is wearing! Thank you so much for your prayers and support for Lily girl. She is doing so well because of you!

This girl adores her daddy :)

                                                                               Kisses from Gma Schwarck
  Gpa Kramer has a cpap mask he wears at night so he put his on to make Lily feel more at home with her bipap mask :) Probably one of the cutest things ever.


Watching Gpa plow the snow 

Cousin Addelyn reading a book to Lily

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