Remembering Jacob

We welcome Matthew and Jacob’s mom as a guest blogger today to share her story.

One of the hardest things about our parenting experience has been having to let go many of our dreams and readjusting them to fit our reality. It sounds like such a silly thing to fret about a birthday when we have so many other things demanding to be our priorities, but there are some things that as first time parents or as parents of twins (in particular) that we wished and hoped for. To have them stripped away time and time again, it’s not only heartbreaking, but it is a constant blow to our strength to keep trying. Just as we think we set our expectations low enough, we have had to adjust them or lower them again, wrap our heads around a new normal, and figure out how we can make the best out of our situation.

I promised myself that I would not stress about their birthday, that I would be happy if they were just able to be together. If I could get a few photos, a birthday was not very important in the grand scheme of things when you’re literally talking about life and death and keeping your children alive. But I allowed myself to daydream and little by little, over weeks and weeks, I tirelessly poured myself into the details.

We planned a small party with family knowing that if the call came and Jacob’s surgery would rock our plans, we would have to forgo the party. But, the boys deserved a celebration, so I tucked away my fears that it would get canceled, and carried on. As I punched tiny little teddy bears out of paper and tied bows out of gingham ribbons, I wondered if I would have a chance to use them. I told myself that we would celebrate sometime, even if the reality had to look different than my dream.

For months, we’d been wondering if we’d have a chance to celebrate Matthew and Jacob’s birthday, at home, surrounded by family, just like we imagined. It sounds silly to stress about if our twins would have the chance to be together on their birthday, but it was a very real possibility that they would be separated. Every week for the past two months we’ve asked ourselves, if the call for transplant came now, would Jacob be home in time for his birthday? God knows the desires of our hearts. He knew that having Matthew and Jacob together every month, on the 22nd of the month, meant more to me than I can ever put into words and he’s moved mountains to do it.

Many many people banded together to give Matthew and Jacob a celebration of their first year of life. A twin mom friend of mine sent a banner that her twins used on their birthday. Another friend made matching bear shirts for our family. A friend of mine, whom I never would have met if not for the transplant journey that we’ve been on, captured these photos of Matthew and Jacob’s special day. The theme was teddy bear picnic, a song we sing to Matthew and Jacob quite often.

The highlight of the day was a cake from the Icing Smiles program. They connect bakeries with families who’s children face critical illnesses, and offer them something not only normal, but extraordinary- an amazing and beautiful cake free of charge. What they really gave us was pure joy, in cake form. At a time when we weren’t sure the details would come together, they did, and we are so thankful to have a beautiful celebration of our miracle boys.

Three days after the birthday party, Jacob was admitted to the hospital because of his worsening health. It is with the greatest sorrow that I inform you that three weeks later, on May 14, Jacob passed away. He was waiting on a miracle liver transplant, but his body could not wait any longer. Looking back, I am so grateful for the opportunity to have celebrated Matthew and Jacob’s first birthday together. We will always treasure our memories from their only birthday together on this earth.

Thank you to the Icing Smiles program and to Tracy for creating such a beautiful cake for our boys’ very special day.

Matthew and Jacob’s cake was provided by Sugar Angel Tracy Winborne with Sweets to the T in Upper Marlboro, Maryland. Thank you Tracy for all of your hard work and dedication to Icing Smiles. We look forward to seeing more “smiles” from you in the future!