It seems I have “handle with care” stamped on my forehead these days – and I can understand why. I greatly appreciate the outpouring of prayers, offers of support, encouragement and friendship that God has revealed to me through those He has placed in my life. As a person whose gift is GIVING support, it’s been a hard pill to swallow, and I’ve been showered with grace as I’ve learned to do so.
I know my family and I have been on the hearts of many recently. And so, I will begin with a family update:
Joseph had his six-month post surgery appointments in these last few weeks and as of now, his CAT-SCAN is looking good. His cardiologist, and Marfans Specialist, expressed some concern that maybe Joseph has a different connective tissue disorder rather than Marfans. We’ve been thinking about doing genetic testing for a while and have been putting it off due to the financial expenses involved. Insurance does not cover these tests and each one starts in the thousands of dollars. However, we do need to identify the condition and where it sits in his genes so that we can test our daughters and know who, if either, of them has the condition.
This week, Joseph’s genetic test for Marfans came back negative. We are disappointed. Ok, we are very disappointed. From the little information we have on the other possible connective tissue culprits - they only get scarier. Because of the cost I mentioned above, we are doing these tests in rounds, as to not have to pay for any more than we need to. We have decided to test his DNA for Loeys Dietz Syndrome. Each round of tests takes 2 weeks. We made this decision on Wednesday and should know in the next week. As soon as Joseph tests positive for a connective tissue disorder, we will then have our daughters tested. I’ve always said the unknowing is the hardest part, I’m starting to reconsider.
Tessa continues to amaze me every day! Her joy for life truly inspires me. As she settles into her second year of life, her gifts are bubbling over and it has been my saving grace to witness. Currently at the forefront –any and all things artistic. She is always drawing and trying to understand shapes. Tessa’s mommy has been doing a lot of crying lately and although I’m feeling a bit defeated in life, I’m getting a glimpse of my children I don’t think I’d be seeing if things were more stable around here. Nothing hurts Tessa more than the sight of tears in any member of our family. Her little being gets so upset and worry takes over her pudgy little face at the first sign of distress in a family member. Her empathy amazes me. She has been gifted with great intuition and is finding out early in her life that this gift comes with a great responsibility. So much so, she has started talking and tossing and turning in her sleep. I’ve been lying awake at night and listening to her “love” us through the bedroom walls as she sleeps through her restlessness.
Oh, my lovely Anna Clare. She is a gal of great extremes. Her screaming and intense emotional reactions have been more than her parents can take since the day she was born. However, her “ups” are well worth the price of her downs. When joy fills this little one, it consumes every part of her being. She has a difficult time containing her excitement and has taken to just screaming out gibberish because she just can’t keep in how happy songs and games make her feel. I call it her “joy seizure” because it is an overwhelming thing to witness. Her smiles are big, her eyes are bright and her cuddles are my best medicine. I can’t wait to continue to meet her each and every day. I never know what I’ll get. She has an element of surprise about her that prevents me from ever closing my heart. I thank her for this gift and praise God for the two very different souls he has entrusted to our care.
I’ve received many calls and e-mails expressing concern for me. I appreciate them all. I’m thankful to have been blessed with the presence of so many loving people in my life. We have been through a lot and yes, I am stretched thin. Yes, I know it is “too” thin. Joseph and I are constantly working and I am worried and frustrated. It’s so hard when we know we work more hours in a week than most we know. It’s hard because we do so not to get ahead or even enjoy the things most others our age are working for such as buying a home, starting a business or saving for a vacation. We are on what my husband calls “The Red Queen Theory.” This theory, from Alice and Wonderland, is about running as fast as you possibly can –just to stay where you are. It’s a frustrating place to be, especially because we are forced to live each day face to face with mortality. We both have great fears that if it’s God’s will we don’t live this earthly life together until a ripe old age that we will have regrets. Regrets of too much time spend in worry about health and finances, shooing the children away, working and so on. It is discouraging, knowing we are doing the best we can, and knowing it’s not enough.
Isn’t this the point? Isn’t this our faith? Ok, so my family has been pounded with hardship after hardship. Yup, we are working ourselves day in and day out just to spiral deeper into medical debt. And, our biggest challenges are those of unknowing. Will this family stay healthy? Can we ward off the next medical concern? Will these medical concerns prevent this family from ever growing in size and into a place to call our own?
I don’t know the answers to these questions. I’ve had my fair share of good cries and “why me’s”. However, I have been blessed! I have been given a glimpse of true and unconditional love that not many others will know until they are called home. I’ve seen the best qualities of those around me drawn out by our hardships as they’ve rallied to our sides. I’ve been given graces from God to grow in holiness and love with my husband as we have had no choice but to take each other’s hands and humble ourselves to one another just to get out of bed in the morning and face the day. I’ve been blessed with daughters who are learning to see that the face of Christ and the beauty of God’s love is found in suffering. What spiritual possibilities there will be for the lives of little ladies who have this engrained within them! The evils they may be saved from because they won’t have the temptation many young people have to define God by what they find within themselves. They’ll know to look upward with open arms. They’ll know what love looks like. They’ll be so filled with it, they’ll want to pour it out and spread it wide. They’ll have grown up with parents who lived everyday broken wide open.
So, THANK YOU, THANK YOU for your worry, and your love. But please, don’t feel sorry for me for we have no need for pity over here – we have love, growing spiritual lives, more friendly faces than we know what to do with and - we have God. We’ve been given the opportunity to be pushed down and forced to die to ourselves and the desires of this world. We are broken, bleeding and helpless – therefore we have a clear vision of the hand that reaches down to help us up and we are so thankful for it.
Plus, how bad can things get, baseball season is almost here!
I pray for whatever way God has chosen to reveal Himself to you and your family,
***Supporter of the week goes to Kelley at Mamalog who gifted me with these words of support and encouragement. This post Kelley wrote about me touched me deeply and showed me how wonderful it is when we share our faith with each other!
Joseph and I at the Giants vs. Brewers game this past summer a few days before his second surgery