Learning

Hope all of you are enjoying summer! Summer for us has been good so far, we have had some fun time at the beach and lake with family, sports camp for Loftin, art camp for Lucy, and all that's in between. Blogging has kind of fallen by the wayside, I started this a while back and have just added to it.....so it may seem a bit scattered, kind of like summer :).

MG has been happy and healthy and feeling good through it all. I can't believe it's been almost 4 months since her VEPTR implant surgery. We will return to Philly this Sunday for her first expansion surgery on Tuesday, July 24th. Also, we have an upcoming appointment this Friday with our neurologist here at Children's to discuss all the test results they have thus far on MG and her muscular dystrophy. There is still no definitive diagnosis of the type of MD, but I assume he will want to do some blood tests and possibly another muscle biopsy soon. The last couple months have been refreshing, as we have tried to focus on the present and how well she's doing, but of course, all that is coming in these next several weeks makes the realness return, along with the fears. Please pray for our travels and her surgery, it should be only about an hour long and a couple nights in the hospital, maybe just a week in Philly, if there are no complications. Please pray for no complications or sickness before then. Also, pray for peace as we learn more about Mary Graham and her MD. It's hard to digest it all. Pray for some hopeful and encouraging news from the doctors. 

"How is Mary Graham?" I get this question a lot, sometimes multiple times a day....and I'm so thankful....so thankful that those of you asking are still concerned and praying for her. These days my answer is mostly, "she's good, really good, not in any pain." And this is true, but there is probably more I could say. I've been trying hard to get some video of her. Many of you only see her briefly and most of that is just in passing, some have never met her and only seen her in pictures. So, I have put some video of her together to show you the progress she has been making and hopefully get a glimpse of her little personality that is blooming. This is MG in a nutshell.....she is 16 months old and she is sitting up really well these days and beginning to reach further while sitting, she is talking a ton and can say, "hey there, mama, daddy, bye-bye, uh-oh" and many other words, new ones each day. Just today she said, "wa-wa" (water) and "flowa" (flower). She is not able to roll all the way over and push up to a crawl position, or sit up on her own. So, basically I have to place her in a sitting position, she can't get there by herself. She has just learned to stand up, while holding my fingers, from her little stool that she is able to sit on unassisted. This is major progress, right after her veptr surgery she wasn't putting any weight on her feet. She is very happy, rarely cries, but I can tell she is beginning to get frustrated and want to move more.....we have to carry her a lot since she isn't mobile yet. However, she is getting stronger every week and growing and we praise God for that. We try not to focus on what she "should" be doing right now and we celebrate these steps that she is making in her progress and continue to pray for God to show us great things through her. Mary Graham is just Mary Graham.....she makes us all laugh and smile a lot every day.

 Just the other day, one lady asked me how old MG is, I told her 16 months and she commented, "bet she's starting to get into everything." This is where I don't know where to go with the conversation, so I said, "well not quite yet." This is where it gets kind of awkward, do I tell her about MG's disease, her surgeries, etc. Most of the time I don't and just pretend as though things are normal. Another time today a girl sitting next to me at the library with a baby the same age who was crawling all over the place, she asked how old MG was, I told her 16 months and she said her baby was too and commented how tiny MG was. As we sat there for a while, I know she was wondering why she wasn't crawling around like her baby.  Then, as I watch Loftin and Lucy swimming and running and jumping this summer and I think, will MG ever be able to do these things? These moments, of course, are difficult and this is where I'm learning. Learning how to respond to these conversations, learning my own insecurities, learning to love her well just the way she is and not focus on what she "should" be doing, learning our "new" normal, and learning to follow Jesus through it all.  You see, I have thought, and said to some of you, it is easier to face Mary Graham's muscular dystrophy at this point because she is a baby. She is happy, carefree and I'm the one taking care of her all the time. Some days I feel like everything is normal, despite her delays, and I catch myself thinking, "how could I really have a child with muscular dystrophy?" Plus, with Loftin and Lucy, we have lots of fun and crazy and joyful times these days, and I'm so grateful for these, even the ones when I think I'm going to pull my hair out with all these children :) But events like those above seem to sting and that's where the learning begins. Uncomfortable is how I begin to feel....I don't like feeling uncomfortable....I would much rather feel comfort each day of this life, wouldn't you? But when that comfort is shaken, that's when I long for more...shouldn't we all long for more than just a happy, comfortable life? I would love just to breathe a sign of relief that everything's going to be ok. But it is actually good for me to feel uncomfortable...and having an uncertain future for one of your children can put you there for sure....but it's good because I realize my dependency and comfort needs to come from the Lord. In Him I can find rest and peace and know that is really is going to be ok.

When going about the day, emotions come and go, but then I just look at her and she washes those away. God is showing me His goodness in the midst of it all. She's such a blessing, everything about her.  And I have a feeling I will be learning from Mary Graham as she grows. There is much to be thankful for. This story really isn't just about my little girl with a disease, I'm learning that it is so much bigger than that.
This road ain't easy.......but two things I know to be true, that I'm learning and relearning each day.....as the verse says below....I believe in Him and He has given me an inexpressible and glorious joy. We rejoice despite our circumstances....despite our discomfort.

^"In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire —may result in praise, glory and honor when Jesus Christ is revealed. Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy,  for you are receiving the end result of your faith, the salvation of your souls." 1 Peter 1

I still believe that God has great plans for Mary Graham, better than I could have or imagine and I can't wait to look back one day and see all He has done.

There are so many things I could ask you to pray for...her future, her development, her surgeries. If you are still along for this ride, we are so grateful.....We covet your prayers and thank you for your faithfulness.

Now, if you have lasted this long reading my post, here is some video and a few pics from our summer.....do not feel like you have to sit and watch all the videos, it was just hard to capture everything on one...and my voice gets quite annoying on all of them :)



   Lucy entertaining MG on her little stool

IMG 0261[1] from Jennifer Sheppard on Vimeo.
Mary Graham 15 months from Jennifer Sheppard on Vimeo.