We are in the final weeks before our family will be divided between the hospital and home. There is so much to be done to get ready..and so much emotion to process. My heart wants only to study Elijah's face, his voice...everything that I never, ever want to forget. I am praying, meditating on God's Word with every thing I do...drenching myself in His sustenance, his protection...reminding myself that my hope is in the Lord, not in the outcome of this upcoming transplant.
And in the midst of all of this, there has been a political tug of war raging all around us. Elijah is the face of those who are on the front lines of the potential destruction. Our whole family is.
The State of Minnesota is on verging of shutting down on July 1st. From our earthy perspective, the worst time possible, since transplant work up week is scheduled to start July 5th. Elijah is adopted through the State of Minnesota which means his medical costs are covered by Minnesota Medical Assistance. We are unclear how that will effect his upcoming hospitalization. But, we have been told to expect anything.
As part of that State shutdown our in home nursing and PCA's are not able to work. At a time when we need them most as we face BMT, we will potentially have no additional help.
And as part of the State shutdown, we will no longer receive adoption assistance and if it is restored, it may not be retroactive. Adoption subsidy for our most disabled children is what helps us to care for them and to pay our $400 a month electric bill (we run oxygen concentrators, compressors, purifiers etc...)
And as part of the State shutdown, all of our other income will be gone. Because two of our adult children are disabled, we are able to work to provide some of their personal care hours. It is not a lot of income, but it will be gone. And since we need to rent housing near the University of Minnesota (because we are required to be close to the hospital for about four months,) we will have many expenses in addition to the every day bills.
And then to top it off, instead of receiving the large adoption tax refund that so many of us in the adoption community have been waiting for for six months or more, we were fined $8,000 this week for filing a claim that was not substantiated. The claim was filed exactly as requested....four different times we sent in the same documentation. We adopted kids with very easily identifiable disabilities at the time of placement and their adoptions are clearly eligible for the credit. And so more paperwork and hassle, distracting us from what really needs to fill our minds right now...the important, not the urgent.
Thankfully, we were able to finalize Isaac's adoption in June, yet their are other legal documents, social security issues, and disability certifications we need to deal with. Paper work that seemingly has no end needs to be filed before we are all swallowed up in a the sea of medical records piling up around here.
So, as I list all of these things, two things strike me immediately.
It is so easy to lose sight of the person--the child who is most deeply effected by policies, stand offs, legislative measures. If the shutdown actually occurs, my family will suffer...we will struggle in ways that are life threatening. If we weren't facing a Bone Marrow Transplant, our minds may have more time to soak in the enormity of this looming crisis--no income, no health care, no services, and an unexpected $8,000 fine!) There just isn't any room left in my brain to deal with this stuff. I think that is a blessing.
But, I also am reminded that in Minnesota, there are many services available to our families. I am thankful that we are able to receive adoption assistance and medical assistance for the waiting children in Minnesota who most need homes...like Maisy, Elijah, and Kaden. We are blessed...and I don't want to take that for granted.
And so, I must trust that God's timing is not out of step with His will for our lives. My focus will be on the ten precious lives that we have been entrusted to care for. This battle is not just Elijah's, but his 9 brothers and sisters. They have already lost a sibling and the pain of that loss is still close to the surface for them. They are not naive in their idea of what life will be like around our home in these next months...and they are struggling, worried and anxious at times. Although it is our desire to be able to be there fully for them, the reality is that we will be spread thin, as we care for Elijah. We will need help from those around us. We will need prayers for each of our children. We will need Jesus more than ever... And He will not disappoint us.