Just because I’m an EDS Mama with an adult daughter with Ehlers Danlos Syndrome doesn’t mean I’m not thinking about the “what if’s” surrounding the Covid-19 virus. My daughter has grown into being her own advocate, and yet as I remember all the years she was so ill and could not care for herself, all the times I never left her side during hospital stays, it has prompted some discussions at our house regarding preparation.
It is a reality that with EDS and POTS, this virus could very well land our children (adult or not) in the hospital and we will not be able to be by their side as we have in the past. At our house, we discussed that now is the time while you are healthy to update a medication and doctor list. When you’ve been all over the place for care, it’s important to have some of these details with you because one hospital’s records are not easily accessible by another and it wastes precious time while those records are retrieved.
It might also be important to make note of special intervention one might need because of certain conditions. For example, not every doctor is going to know that a POTS patient needs larger amounts of fluids to compensate for their condition. They may also not be aware that pain can escalate and mobility problems can occur with an EDS flare caused by any virus. It might be important to make note if you’ve required TPN in the past with a deterioration in your condition.
I’m not saying to walk in with pages of your demands.
A complete medication and doctor list is imperative and perhaps a couple of other added important notes would make you feel safe that the hospital was aware. This can be a scary time for any chronic patient. Some may be having flashbacks of what they went through in the past in hospitals. The fear of possibly not having one’s pain controlled again can cause sleepless nights just wondering if this virus will take you back to those days you’ve tried hard to forget. And EDS Mamas may experience anxious thoughts about the distance between them and their child if a hospital admission is required. Our children will always be our children no matter what their age.
I choose to place all of my children in God’s hands during this time. He loves them infinitely more than I could ever try. Psalm 121:2-3 says, “My help comes from the Lord, the Maker of heaven and earth. He will not let your foot slip – He who watches over you will not slumber.” This comforts me so much because even through the dark nights of the hospital, God will be with us. We will never be alone.
What discussions have you had at your house to prepare for a possible hospital admission? Let's share some comments so we can help one another be ready just in case.
Photo credit: Image by <a href="https://pixabay.com/users/Tumisu-148124/?utm_source=link-attribution&utm_medium=referral&utm_campaign=image&utm_content=4914028">Tumisu</a> from <a href="https://pixabay.com/?utm_source=link-attribution&utm_medium=referral&utm_campaign=image&utm_content=4914028">Pixabay</a>
Here we are, one day before a presidential election. Something is happening in our nation. People are being stirred to really consider their values and then to play a part in shaping our nation’s future by casting their vote. Considering the two front runners, neither candidate has the character which would make me proud to be an American. But then again, it makes me look inward and realize my own character falls short also. Then I look beyond the character to see which candidate best represents the values that I hold dear. Which one will protect unborn life? Which one will appoint judges to the Supreme Court that I can support? From a medical perspective (which EDS Mamas are constantly thinking about), which candidate will change the downward spiral in our country of insurance premiums and deductibles skyrocketing while actual coverage plummets?
As an EDS Mama, it was hard many times to look at life beyond my four walls because it was all I could do to manage life at home. I would encourage you, dear one, to be bold on November 8th, make arrangements if you need to, and get out and vote! Pray before you go and cast your vote for who you believe God would want you to support. Even Paul in Acts 22:25-29 exercised his rights as a Roman citizen. Staying home and not voting should not even be an option.
We can cast our vote tomorrow; however, I firmly believe that it is God who works through people. It is He who decides who will be “on the throne.” John 3:27 says, “…A person cannot receive even one thing unless it is given him from heaven.” I am watching as our country stands more and more against the Word of God. Things that God says are deplorable to Him, we embrace and then bring charges against those who refuse to join the masses. I have peace with whichever candidate becomes our next President because I know God has a plan. This earth will pass away, Christ will return, and one day we will all move into the next phase which is eternal. How exciting is that?! God will put into the White House the person He chooses in order to carry out the plans that are His alone. John 3:31 says, “He who comes from above is above all.” Thank goodness!
As an EDS Mama, I’ve walked through the valley of the shadow of death. Some of you reading here have been there too, perhaps even burying a loved one who you have walked beside in this same valley. I’ve felt death’s heavy presence and I’ve experienced evil hovering over my shoulder and laughing at me. But I’ve learned to not be afraid of it. Or so I thought. Recent days have brought a new perspective to my understanding of this dark, scary valley.
I woke up a few days ago to the news of twelve police officers shot in Dallas, Texas, five of them fatally. See, I may be an EDS Mama, but I have other children, too. One of those is a police officer. I have always prayed for this son’s protection, but I do not fear for his safety. So, I surprised myself that as I sat and tried to comprehend what the news anchor was saying, I found myself weeping. It took me some days to understand why I felt so shaken.
I raised my son and all my children to view people as they are, not based on the color of their skin. I am proud of my son that he applies this to his job. To him, a criminal is a criminal; the appearance has no bearing. I do not intend to argue about what side is right or where middle ground meets, but as I’ve pondered these current events, I’ve found myself reflecting on the valley of the shadow of death.
I may be familiar with this valley because God allowed me to be there through my EDS journey, but my son willingly walks in it each day that he goes to work as well as every single day he is off duty because every police officer is never truly off duty. It’s created a new fervor in my prayers of protection for him just like the days when my daughter was in that valley because of her EDS. I know that he can walk in that valley, be aware of the danger around him, and still be able to not fear it just as I learned. Not because he is a tough cop, but because He knows his Father in heaven. And his wife will do the same because it is her calling also simply because she loves him.
Just as He always does, my Lord is challenging me today as he raises the bar of whether I will trust Him. It took me a few days to work through this, but I am able to sleep again and trust Him fully knowing He has my son’s back just as He has mine. I’m deeply encouraged that God is aware of my insecurities and fears. The very day of these tragedies, He spoke to me through a dear friend who texted me encouraging words that she was praying. I feel so proud that God raised my son up for this challenging time to be a protector of all people. “Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me”, Psalm 23:4 ESV.
I’m having a tough morning waking up today. Two cups of coffee down and I am still not feeling compelled to get out of my comfy chair where I am all snuggled in with my cozy housecoat. I turned the news on since I am not feeling alert enough yet to gain much from my quiet time in the Word. All over the news channels is word of another terror attack, this time in Brussels, and the death toll is rising by the minute.
Watching the panic in all the people brings life back into perspective. Living with EDS falls to the wayside for the moment; it causes me to look beyond my struggles today which seem so small in comparison. It’s a grim reminder that we live in a different world than when I was a child. The innocent peace that I experienced growing up is nowhere to be found now. Our children are keenly aware that there are people around us who spend their days plotting to kill.
These terror attacks make me want to draw close to my God, my Heavenly Father, snuggle close to His side. He sees all that is happening here and He is not surprised in the least. He sees the long term picture throughout all time. He is aware of the world my children’s children will experience. And even though it does not FEEL like it, He IS in control still. Revelation 1:17-18 says, “When I saw him, I fell at His feet as though dead. Then He placed his right hand on me and said, ‘Do not be afraid. I am the First and the Last. I am the Living one; I was dead, and now look, I am alive for ever and ever! And I hold the keys of death and Hades.’” It is not popular to say today, but I will say it anyway because it is where truth lives…He is the one and only true God. He is coming back and days like this remind me to look past life with EDS and wait expectantly for Him. Will you be ready?