For so many years I have grieved the life I thought I would have. When we found out our unborn baby was going to have a chromosome abnormality and a bad heart the grieving process started and it has continued for years. I would always grieve silently, sometimes on a daily basis, gather my broken pieces, pick myself up (with a lot of prayer) and carry on. I always thought the grief would lessen but instead the older Hannah got the more it increased especially when she was diagnosed with PANDAS and for lack of a better phrase “all hell broke loose.” The grief, at times, has been almost unbearable. The loneliness, the heartache, the “what could or should have been” questions and no answer to my many “why’s.” There have been moments where I wondered if I would ever climb out of the pit I was in and accept and embrace this journey God chose for me. I have had moments were I did accept/embrace our life and then something would happen and I would find myself right down in that pit of despair and grief again. I even started seeing a counselor and tried several medications (none which worked for me). But, nothing seemed to help…..that is until this past May.
So, for those who don’t know I got really sick in May. We thought it had something to do with a mosquito bite I got that swelled my face and eye up. After 2 trips to the ER, multiple doctor appointments, many tests, CT scans, MRI’s, nerve conduction test and a plethora of other things we finally have more answers than questions. I do have a confirmed diagnosis and another almost confirmed diagnosis (hopefully by the end of the month). I am thankful for a Rheumatologist and Neurologist who are working together to figure it all out. This dual diagnosis is not what I was hoping for but I believe answers are better than questions and I am thankful that we are finally getting to the bottom of this. During this past 5 months though God has taught me a lot. I swear I have always been that person who learns lessons the hard way. God always seems to have to knock me down to my lowest to get my attention. Ask my parents…..I have been like this my entire life. I guess that stubborn/strong-willed gene is strong! HA! Here are a few of the lessons God has taught me:
- It is okay not to be okay and to verbalize that. So many people mask and hide their true feelings. For me, talking about it keeps it from bottling up and making me explode later on. It is cleansing and helpful. I know this isn’t for everyone, but it works for me.
- Some people are in your life for a season, then God removes them for one reason or another. Don’t cling to those who leave your life or worry about the reasons why.
- Not everyone is going to like you. Sometimes your personality/likes/dislikes won’t click with someone else. It is okay not to have approval from others. It is okay that for whatever reason someone doesn’t like you…..MOVE ON!
- Life is too short. Live, laugh and love……
- It is one thing when you are a caregiver for a sick child/parent/loved one, it is a totally different story when the caregiver gets sick. The past 5 months have been some of the hardest for me because I haven’t been 100%. Trying to care for a medically fragile child, keep my home running, help my husband……there have been moments I thought I wouldn’t be able to do it all. It is okay to sit down, regroup, rest and then move forward. Sometimes baby steps are necessary…..guess what…..the laundry, floors, dishes, ironing, bathrooms…..it will all still be there when you are better. This has been a huge lesson for me. Taking care of me and not worrying about things that aren’t important (like dirty laundry and floors).
- Your diet and getting exercise are 2 of the most important things you can do for yourself and your family. Diet is easy for me, exercise not so much especially the past 5 months but I am working on doing better.
- I have learned to appreciate this life. I have learned to find joy in the mundane. I have learned to find peace in the daily routine. I have learned to be grateful for the slow-paced life I live. I have learned contentment and I have finally embraced this life. It is funny, I can look back over my life and see God’s hand preparing me even as a child for this life I live. I could NEVER be that mom who is on the go 24/7. I don’t have the energy or ability to be that working mom who leaves the house at 7am and gets home at 6pm, driving kids to ball practice/games, doing homework, cooking dinner, using weekends to clean and catch up on laundry. God did not give me that ability, like He gave others. I so admire the mom’s that do it all…..I have said that many times before; but even as a child I was being prepared for this life I live and honestly it has taken me 13 years to really “see” that and embrace it. On our recent trip to Nashville it hit me just how much I need my downtime. How I need to not go, go, go all the time. Perhaps it is worse now since I am exhausted all the time and my already low energy level is depleted but being a homebody has its advantages and I am finally embracing that.
- I have a new-found appreciation for being debt-free. Dennis and I, after we got married chose to live on his income. We never depended on mine. That was the wisest choice we have ever made. Because of that decision God enabled us not to have to worry about finances when Hannah came along. We have done without some things but we have had all of our needs met and some of our wants. We have a beautiful home, 2 nice cars, food on the table and money in the bank. When I got sick, even though we have insurance I dished out A LOT of money for co-pays, co-insurance and deductibles (thousands of dollars) and I am so very grateful we had it. God has blessed us in ways you would never believe and I know it is because Dennis has made it a priority to tithe and give to others. I say Dennis because he is way more giving than I am and I love that about him. I pay all the bills but if I “forget” to write that tithe check he is quick to remind me! LOL! I know God has blessed us for that. One thing we have never worried about in our marriage is how we are going to pay the bills, or buy food. God has always provided and right now especially I am so grateful. It is helping me trust him more as in 11 months Dennis retires and even though my mind wants to put doubts out there about us surviving I know and trust that God will provide our needs and I am so thankful for that peace He gives.
- My love and appreciation for Dennis has tripled in the past 5 months. His work ethic, his love for me, his commitment to our marriage (in sickness right now especially), the way he helps me around the house and with Hannah even after working all day…..his patience with me and the money I have cost him lately (HA). He has proven time and time again that he loves me and appreciates me. He has picked up extra off-duty jobs and he has tirelessly given me so much especially these past 5 months.
- God has a story He is writing for each of us. Sometimes I tend to pick the pen up and write it myself (thinking I can write a better one but I am always wrong). We have to put the pen down and let God write it. This has been a huge lesson for me.
Sometimes our life seems to be out of control. When those times come, which I would venture to say they do for everyone at one time or another, those are the moments to just BE STILL. Take a break, rest, regroup and PRAY hard. I encourage prayer and Bible reading in the good times too, just for the record. I have learned that in our most difficult days God is teaching us and there are lessons to be learned if we just take time to listen.
Raising a child with special needs who is medically fragile is HARD! I am not going to lie. I have a 13-year-old who is more like a toddler than a teenager and that is really hard most days but oh the joy she brings to my life. I just have to take time to see it and when I got sick I really began to take notice of my life with Hannah. I began to be grateful for our circumstances and I began to appreciate the little things that truly bring me so much joy. I stopped worrying about others and what they think and I stopped fretting over why certain people in my life don’t like me and why they can’t see me for who I am and my heart. I stopped caring about things outside my four walls and focusing on my relationship with Christ, my husband and my daughter. Life is too short to not accept and embrace your journey and the story God is writing for you…….all you have to do is be willing to put the pen down. That is the greatest lesson I have learned since May.
I don’t know why God allowed me to get sick. I am still wrapping my head around all that is happening in my body and yes, in all honesty, I have shed a few tears but I TRUST HIM. I know sometimes bad things happen but I serve a loving, merciful and gracious God who even in our most difficult of circumstances is writing a beautiful story for us. Sometimes that story has twists, turns and upside down roller coaster rides attached to it; but He has a purpose and I am trusting Him to reveal that in His timing and use it for His glory. If you think of it and want to say a prayer for us, I would appreciate it but most of all I hope you see my heart in this blog post and know that no matter how bad or difficult things seem God loves you, wants the best for you and is writing a beautiful story just for you. You just have to be willing to put the pen down…….
Until next time……….