It has been such long time since we have posted anything! Jesse and I have been busy doing things to remember our sweet Stella. Jesse created a beautiful flower garden in our back yard. We also have a new patio where we can sit and enjoy the garden. We set up a trust where we can give a donation yearly to the various organizations we encountered along our journey with Stella. We raised funds for the United Mitochondrial Disease Foundation Energy for Life walk. We also participated in the walk that was in Charlotte. On the same weekend as the walk we met the Kariniemi family from Minnesota who have become dear friends to us and our family. We celebrated Stella’s birthday with family and friends. We helped make and sell squirrel ornaments with the DHS art department. The money raised went to the scholarship set up in Stella’s name at the Davie Community Foundation. We have designed a monument (headstone) for Stella the we think she would’ve liked. It should be installed soon if the weather ever dries out! Our dear friend and co worker Jessica Allen (who led the way on the squirrels) had students set up a table at lunches to spread the word about rare diseases on #rarediseaseday.
We have also been busy preparing our hearts and minds for a new addition to our family. Jesse and I are excited to welcome a baby boy in early July. We wanted to give Stella a sibling and were told our options last year when we learned that Alpers was a genetic disorder. The choices were to get pregnant the regular way and take our chances…one in four pregnancies could result in Alpers. Or we could go through the Invitro Fertilization Process with genetic testing. We chose the IVF option. The process was lengthy, expensive and painful (lots of shots for me) but worth it to know that the baby I am carrying is not affected by our genetic mutation.
The emotional gravity this pregnancy carries is great. A sweet friend sent me a link to a blog post where the mom had lost a child and had other children. She was talking about the word ‘and’…it was okay for her to feel happy for a new child AND still grieve and mourn the loss of her other child all at the same time. It gave me some comfort knowing I and we not the only ones that feel this way. We (our families included) are so excited for this new baby and the chance for Jesse and I to have more children, however the loss of Stella and the hole that it has left in us doesn’t change or get any smaller because of this new baby. We will all have to navigate this new emotional complexity. I’m sure it will include lots of smiles and tears all at the same time.